Ok, so my last post brought us up to an uncomfortable obstructive episode leading to a trip in the ambulance to the accident and emergency department.
By the time I got to A&E I was in quite a state. The ambulance men wheeled me in, and I was still clutching a sick bowl. I couldn't even sit up by this point. The only vaguely comfortable position was on my left side with my head propped up a little. My husband followed behind the ambulance in his car and it was a little while before he caught up with me, but he said, in his oh so gentle words(sarcasm) afterwards that I "looked like a beached whale" The whole of my torso was bloated, and fairly hard, and uncomfortable to press. Every Doctor and Nurse that came to see me commented on my distended torso, and I kept saying. "It doesn't look too bad today, it's been worse!"
I think that I'd got so used to the strictures, and how it felt when I was bloated, that I hadn't realised just how bad it was. I certainly felt the most unwell at this particular point, even if I didn't think I looked it!
As soon as I was seen by the Doctor, he gave me some IV antisymetics to stop be being sick, and some morphine. By this point, I was happy to be given whatever they wanted to give me. I just wanted the awful feeling to stop. I held onto my husband's hand and remember for the first time feeling completely helpless and out of control. I kept saying "I just want it to stop." He reassured me that I was in the best place, and we were going to get it sorted once and for all.
It was hours before I was moved from A&E, up to the Medical Assessment Unit - where they properly assess and treat patients before either sending them home or making them an in-patient. Whilst I was in A&E, they wheeled me into x-ray for a chest x-ray. I'm not sure what the point of this was, as the problem was in my gut and not my chest. It was possibly the most uncomfortable procedure I've had out of everything before or since believe it or not! They needed me to sit upright to do it, and to hold my breath for just 2 seconds. It was almost more than I could bear to be upright and still at that point!
Eventually I was taken to the MAU, and put in a little side room. Every so often a nurse would come in and take my blood pressure and pulse and note that I was in a lot of pain. I was sick again, and they gave me another antisymetic. It wasn't until nearly 10pm (I had called the ambulance at 10:30am) that the registrar came in and told me that the x-ray I'd had done was pointless because it only showed my chest, and that they would send me down to x-ray my bowel and get a CT scan done.
The x-ray of the small bowel was far more comfortable, as by this time I was dosed up on morphine, and anti-sickness. I'll describe the CT scan in another post as this may be of individual interest to readers and I'll give it it's own separate post.
Just before midnight, a surgeon came in to my room and sat on my bed ...
The surgeon said that the x-ray and CT scan showed that there were multiple stricures across my colon, and he suggested the Humira wasn't working as there was what appeared to be disease in my small intestine as well. He just looked at me and said.
"What we are going to need to do is operate to remove the diseased colon - and it's going to mean a bag."
I looked at him. Somehow it felt true and I wasn't particularly surprised that they would come to this conclutsion but it was still a shock, and I just simply whispered a profanity.
He looked at me and said "yes, I think I would say that too if I were in your position."
I asked when, if it was going to be in a few days, and he said. "We'll look to do it later on today." This is exactly what I or my consultant didn't want to happen. We didn't want it having to be an emergency.
Just before the surgeon left he told me that there was a lot of fluid backed up in my small intestine, and filling my stomach as well because none of it could pass through the strictures. The fluid in my stomach was what was making me feel sick. He told me that a Nurse was going to come and insert a tube up my nose and down my throat into my stomach, so that they could syringe out the excess fluid. This would make me feel more comfortable and stop me feeling sick. He then said that the Stoma nurses would be in in the morning to mark me up for surgery and talk to me about having a stoma. With that he left.
I was left for all of about two minutes to contemplate all this before two nurses came in with the tube for my nose. I will leave that for the next post ....
Sunday, 18 August 2013
Pyoderma Gangrenosum
In my very first post, I wrote about when I first developed crohn's disease. My condition was classed as mild to moderate, and I counted myself extremely lucky. However, considering I had a mild to moderate case, I often think it odd that I seemed to get the other, rarer symptoms aside from stomach pain and diarrhoea.
I tend to get Erythema Nodosum on the bottom of my calves and shins. These are round red lumps. They look a bit like an insect bite, but there is no hole in the centre. They are hot to the touch (this is because they are inflamed areas under the surface of the skin). Sometimes they are itchy and uncomfortable, but not particularly painful. I tend to use them a bit as a warning signal. They appear when the disease is active. Once or twice I have had one large one appear - probably 10cm across, with a number or tiny "satellite" lumps around it. The rest of my symptoms were relatively non-existant.
When I was pregnant with my first child, I had an Erythema Nodosum apear on my calf. It was rather large, and it went from red to very dark red. It was quite itchy, and then one day the surface of the skin broke. A small ulcer formed. The small ulcer grew, and grew. The pain was quite severe and instinctively, I lay on the sofa, with it open to the air to try and dry the wound out. Unknown to me, what I had developed was something even more rare in patients with crohn's disease than the Erythema Nodosum. I had a Pyoderma Gangrenosum. The first time I showed it to the Doctor, I was prescribed antibiotics. Somehow, I knew that these would not work. By the time I returned to the Doctor three days later, the wound and become very pussy and black - necrotic. The Doctor I saw this time immediately signed me off work for 4 weeks and referred me a consultant Dermatologist. She then sent me through to the Nurse who dressed it with a special Ulcer dressing. It was at this point that I learned, the best way to treat an ulcer is not to let it dry out in the air, but keep it covered. The dressing kinda melts into the area, keeping it moist.
The Consultant Dermatolagist at Addenbrookes Hospital Cambridge was brilliant. He put me straight on a course of prednisolone steroids. He also gave me a topical steroid cream to place onto the wound before applying the dressing. I had to change my dressing daily. This was not an easy task considering I was 7 months pregnant! Just bending that way was difficult, let alone the pain it caused. All this time I was unable to have a proper bath, and it was a hot summer. Slowly but surely the ulcer healed. Being the intriuged scientist that I am I wish I had taken photographs of the ulcer.
I had photos taken at the hospital, and they were probably used in a paper written by the consultant, but I didn't take any myself. It's a shame because I could have posted them on this blog!
I now have a rather impressive scar. It looks a little like a shark bite!
What is most strange is that through all this, I didn't experience any problems with my gut, and even remember telling the nurse that I was in remission! I obviously wasn't, it's just that the disease was manifesting on the outside of my body rather than within my gut!
Anyway. If anybody out there has come across this article and is experiencing anything similar then I urge you to ensure that your Doctor deals with it promptly. It really was quite frightening how quickly the Pyoderma grew during the time it wasn't being treated properly.
I tend to get Erythema Nodosum on the bottom of my calves and shins. These are round red lumps. They look a bit like an insect bite, but there is no hole in the centre. They are hot to the touch (this is because they are inflamed areas under the surface of the skin). Sometimes they are itchy and uncomfortable, but not particularly painful. I tend to use them a bit as a warning signal. They appear when the disease is active. Once or twice I have had one large one appear - probably 10cm across, with a number or tiny "satellite" lumps around it. The rest of my symptoms were relatively non-existant.
When I was pregnant with my first child, I had an Erythema Nodosum apear on my calf. It was rather large, and it went from red to very dark red. It was quite itchy, and then one day the surface of the skin broke. A small ulcer formed. The small ulcer grew, and grew. The pain was quite severe and instinctively, I lay on the sofa, with it open to the air to try and dry the wound out. Unknown to me, what I had developed was something even more rare in patients with crohn's disease than the Erythema Nodosum. I had a Pyoderma Gangrenosum. The first time I showed it to the Doctor, I was prescribed antibiotics. Somehow, I knew that these would not work. By the time I returned to the Doctor three days later, the wound and become very pussy and black - necrotic. The Doctor I saw this time immediately signed me off work for 4 weeks and referred me a consultant Dermatologist. She then sent me through to the Nurse who dressed it with a special Ulcer dressing. It was at this point that I learned, the best way to treat an ulcer is not to let it dry out in the air, but keep it covered. The dressing kinda melts into the area, keeping it moist.
The Consultant Dermatolagist at Addenbrookes Hospital Cambridge was brilliant. He put me straight on a course of prednisolone steroids. He also gave me a topical steroid cream to place onto the wound before applying the dressing. I had to change my dressing daily. This was not an easy task considering I was 7 months pregnant! Just bending that way was difficult, let alone the pain it caused. All this time I was unable to have a proper bath, and it was a hot summer. Slowly but surely the ulcer healed. Being the intriuged scientist that I am I wish I had taken photographs of the ulcer.
I had photos taken at the hospital, and they were probably used in a paper written by the consultant, but I didn't take any myself. It's a shame because I could have posted them on this blog!
I now have a rather impressive scar. It looks a little like a shark bite!
What is most strange is that through all this, I didn't experience any problems with my gut, and even remember telling the nurse that I was in remission! I obviously wasn't, it's just that the disease was manifesting on the outside of my body rather than within my gut!
Anyway. If anybody out there has come across this article and is experiencing anything similar then I urge you to ensure that your Doctor deals with it promptly. It really was quite frightening how quickly the Pyoderma grew during the time it wasn't being treated properly.
Saturday, 17 August 2013
Ambulance call
It was only a couple of weeks later that I experienced yet another partial obstruction. I started to feel yet more waves of pain one Wednesday evening. I waited eagerly for diarrhoea to start. All night the pain kept coming. I started too feel nauseous, but still nothing happened all night. By the morning I started to be sick, and I just about managed to drag myself out of bed and down to the phone to phone my work and let them know I wouldn't be in. My mum kept looking at me anxiously. We discussed if it was time to call an ambulance. She kept saying "when will it be 24 hours"
I kept saying tomorrow morning. The consultant had said if I hadn't been able to keep anything down for 24 hours.
Somehow I just knew I shouldn't, or even couldn't wait 24 hours. We tried to call my gp and my consultant for advice, just to avoid calling the emergency services if it wasn't necessary. We were still waiting for a call back from somebody, anybody, and I just said "just call an ambulance" it was at that moment I really felt terrible. The vomit had become definite faeces by now. I was reaching right down in the pit of my gut. I was dizzy, it was brown, and the smell was wretched.
The ambulance was really quick to arrive. I didn't have to convince them it was an obstruction and not an ibs a flare that's for sure. They could tell immediately.
The ambulance journey to a and e seemed like the longest journey I'd ever made. The paramedic kept asking me what my pain score was on a scale of one to ten. If I wanted it they would give me morphine and an anti sickness. I knew that to do that they'd have to pull into the side of the road, a and the journey would take even longer. I just told them the score was two. I just wanted to be at the hospital. If I wanted to be at the hospital that badly, I must have been in quite a state! I must have used six or seven sick bowls in the one hour journey. Man was I glad to finally be wheeled into accident and emergency. What happened when I finally got there? Well you'll just have to read my next post to find out!
I kept saying tomorrow morning. The consultant had said if I hadn't been able to keep anything down for 24 hours.
Somehow I just knew I shouldn't, or even couldn't wait 24 hours. We tried to call my gp and my consultant for advice, just to avoid calling the emergency services if it wasn't necessary. We were still waiting for a call back from somebody, anybody, and I just said "just call an ambulance" it was at that moment I really felt terrible. The vomit had become definite faeces by now. I was reaching right down in the pit of my gut. I was dizzy, it was brown, and the smell was wretched.
The ambulance was really quick to arrive. I didn't have to convince them it was an obstruction and not an ibs a flare that's for sure. They could tell immediately.
The ambulance journey to a and e seemed like the longest journey I'd ever made. The paramedic kept asking me what my pain score was on a scale of one to ten. If I wanted it they would give me morphine and an anti sickness. I knew that to do that they'd have to pull into the side of the road, a and the journey would take even longer. I just told them the score was two. I just wanted to be at the hospital. If I wanted to be at the hospital that badly, I must have been in quite a state! I must have used six or seven sick bowls in the one hour journey. Man was I glad to finally be wheeled into accident and emergency. What happened when I finally got there? Well you'll just have to read my next post to find out!
Tuesday, 30 July 2013
consultant to write letter for emergency services...
Well, following the first obstructive episode, I suffered another two before seeing my consultant again. On neither occasion was I actually sick, but there was the same waves of pain, nausea, and then eventually, and each time to my relief, persistent and uncontrollable diarrhoea!!
I was actually at the tale end of the diarrhoea stage during my appointment. My appointment wasn't actually very much help. The. consultant didn't actually say very much more than the nurse had told me on the phone. He explained where the strictures were, and told me that it was likely that surgery was the answer. I asked if there was a chance that humira would improve things. He told me it was best to start the wheels turning for surgery as first I would have an appointment with a surgeon and then I would be on a waiting list. If at any point it seemed that things had improved dramatically, thin I could always put my foot on the break.
I had a lot of questions about surgery, like how long was the waiting list, what did the procedure involve, what was the recovery time likely to be and so on. He wasn't willing to answer any of these however as he isn't the surgeon and he thought it better I wait and get the answers from a surgeon when I see one.
The one thing the consultant did say however, which gave an idea as to how serious things had potentially become, was this. He said if I did suffer an episode where I was being sick, and I hadn't been able to keep anything down for 24 hours, then I was to call an ambulance.
He said not to worry about if I think it's an emergency. He said it is an emergency, and "don't let them (a and e) try and fob you off with ibs. Cut through the crap. Tell them you have Crohn 's, you have strictures and an obstruction and to get you down to derriford(his hospital), and get some fluids in you" he also said he would write me a letter to this effect that I could give to emergency services should the need arise. I was very pleased he told me this, as that first time I was scared, and yet I still want sure if it warranted calling an ambulance.
So now it's a case of waiting for a surgeon, and praying I don't have an emergency situation on the mean time!
I was actually at the tale end of the diarrhoea stage during my appointment. My appointment wasn't actually very much help. The. consultant didn't actually say very much more than the nurse had told me on the phone. He explained where the strictures were, and told me that it was likely that surgery was the answer. I asked if there was a chance that humira would improve things. He told me it was best to start the wheels turning for surgery as first I would have an appointment with a surgeon and then I would be on a waiting list. If at any point it seemed that things had improved dramatically, thin I could always put my foot on the break.
I had a lot of questions about surgery, like how long was the waiting list, what did the procedure involve, what was the recovery time likely to be and so on. He wasn't willing to answer any of these however as he isn't the surgeon and he thought it better I wait and get the answers from a surgeon when I see one.
The one thing the consultant did say however, which gave an idea as to how serious things had potentially become, was this. He said if I did suffer an episode where I was being sick, and I hadn't been able to keep anything down for 24 hours, then I was to call an ambulance.
He said not to worry about if I think it's an emergency. He said it is an emergency, and "don't let them (a and e) try and fob you off with ibs. Cut through the crap. Tell them you have Crohn 's, you have strictures and an obstruction and to get you down to derriford(his hospital), and get some fluids in you" he also said he would write me a letter to this effect that I could give to emergency services should the need arise. I was very pleased he told me this, as that first time I was scared, and yet I still want sure if it warranted calling an ambulance.
So now it's a case of waiting for a surgeon, and praying I don't have an emergency situation on the mean time!
Monday, 29 July 2013
I have suffered an 'obstructive episode' it would seem
So I gave my IBD nurse a call the day after my rather scary episode. She agreed that it would seem that I had suffered what she termed an obstructive episode. She said that if it had got to the point of vomitting, then this was cause for concern, and suggested that the disease had probably progressed. She advised that I stick to a 'sloppy' diet for the next five or six days. She suggested soups and jellies. I thought that's what I had been doing.
She apologised that I hadnt recieved a sooner consultants appointment, and said she would try and get me an earlier appointment.
The next day, I was rather surprised to hear from her again. She told me that she had just come out of the radiology meeting with the consultant and the radiologist, and they had been reviewing my small bowel MRI.
The news she had was actually a bit of shock. She told me that the small bowel was free of disease as we were aleady aware, but the scan also showed the top half of large bowel, and it appeared that there was more stricturing further up, past the point where the colonoscopy reached. This in itself did not surprise me, as I could tell that by the episodes of pain I was getting. What was a bit of a shock was that she said that with such a significant amount of stricturing it was unlikely that it was just inflammatory and some of it was more than likely fibrotic. This meant that it was likely I was going to require surgery at some point.
I've had ten years to get used to the fact that having crohn's was likely to mean I would need some surgery at some point. It still upset me to hear this however. Rather embarassingly, it made me tearful, and I was at work. I hate acting like a girl at work!
My colleague reassured me and told me she knew somebody who had had a bowel resection. It was straight forward, and they were much better for it. I know she's right, but it's still annoying to hear that the crohns had progressed that far. On the plus side, my consultants appointment was brought forward by a week!
She apologised that I hadnt recieved a sooner consultants appointment, and said she would try and get me an earlier appointment.
The next day, I was rather surprised to hear from her again. She told me that she had just come out of the radiology meeting with the consultant and the radiologist, and they had been reviewing my small bowel MRI.
The news she had was actually a bit of shock. She told me that the small bowel was free of disease as we were aleady aware, but the scan also showed the top half of large bowel, and it appeared that there was more stricturing further up, past the point where the colonoscopy reached. This in itself did not surprise me, as I could tell that by the episodes of pain I was getting. What was a bit of a shock was that she said that with such a significant amount of stricturing it was unlikely that it was just inflammatory and some of it was more than likely fibrotic. This meant that it was likely I was going to require surgery at some point.
I've had ten years to get used to the fact that having crohn's was likely to mean I would need some surgery at some point. It still upset me to hear this however. Rather embarassingly, it made me tearful, and I was at work. I hate acting like a girl at work!
My colleague reassured me and told me she knew somebody who had had a bowel resection. It was straight forward, and they were much better for it. I know she's right, but it's still annoying to hear that the crohns had progressed that far. On the plus side, my consultants appointment was brought forward by a week!
Saturday, 27 July 2013
partial bowel obstruction!
Well, firstly I have to apologise for not updating my blog for so long! Believe it or not, a lot has happened since May, and in order that you can get a full understanding of what I have gone through I'm going to post a series of back dated posts, rather than one very long post that you'll all get bored of.
We.'ll start with May 19th. My low residue diet was ticking along quite nicely. It was rather tedious only being able to eat a few things, but with some thought and care, I was still able to eat some tasty food, and I was still enjoying cooking more normal food for family and friends.
On the weekend of May 19th we had some family visiting. An aunt and uncle from up country and we had invited my brother and his family and an aunt and both My grannies, who live in the village, for a barbecue. I had decided to bake a cake and make some bread rolls as my contribution to the cooking. This shouldn't have taken very long in itself. However, I was a little uncomfortable in my tummy. A bit bloated, and not feeling like I could eat. As the day went on, I began to get the waves of intense pain I'd been having before I had started on low residue. The pain got more and more, and it became increasingly difficult to finish the cooking I'd set out to do. By the time I'd finished what I'd planned to cook, I had started to have pretty much continuous diarrhoea, and was constantly taking trips to the toilet. I thought this was probably a good thing and that things would start to improve. I just about managed to say hello to family members, but by the time my mum was lighting the barbecue, I was either in the bathroom or laying in agony on the bed. If I stood upright, I Felt dizzy and sick. Then the sickness started. I was heaving, right down in the pit of my stomach. What I was bringing up was very dark in colour. Was it faeces? I started to feel scared at this point. I could hear all my family outside, laughing and chatting. Did I need to go to my mum and tell her I thought this might be serious. Was this the point at which I should be calling an ambulance?
Thankfully, I never got to making this decision. The sickness eased off a little, and I was able to get some sleep. I thought perhaps this was a partial obstruction. The next day I gave the ibd nurse a call. I'll save that conversation for my next post.
We.'ll start with May 19th. My low residue diet was ticking along quite nicely. It was rather tedious only being able to eat a few things, but with some thought and care, I was still able to eat some tasty food, and I was still enjoying cooking more normal food for family and friends.
On the weekend of May 19th we had some family visiting. An aunt and uncle from up country and we had invited my brother and his family and an aunt and both My grannies, who live in the village, for a barbecue. I had decided to bake a cake and make some bread rolls as my contribution to the cooking. This shouldn't have taken very long in itself. However, I was a little uncomfortable in my tummy. A bit bloated, and not feeling like I could eat. As the day went on, I began to get the waves of intense pain I'd been having before I had started on low residue. The pain got more and more, and it became increasingly difficult to finish the cooking I'd set out to do. By the time I'd finished what I'd planned to cook, I had started to have pretty much continuous diarrhoea, and was constantly taking trips to the toilet. I thought this was probably a good thing and that things would start to improve. I just about managed to say hello to family members, but by the time my mum was lighting the barbecue, I was either in the bathroom or laying in agony on the bed. If I stood upright, I Felt dizzy and sick. Then the sickness started. I was heaving, right down in the pit of my stomach. What I was bringing up was very dark in colour. Was it faeces? I started to feel scared at this point. I could hear all my family outside, laughing and chatting. Did I need to go to my mum and tell her I thought this might be serious. Was this the point at which I should be calling an ambulance?
Thankfully, I never got to making this decision. The sickness eased off a little, and I was able to get some sleep. I thought perhaps this was a partial obstruction. The next day I gave the ibd nurse a call. I'll save that conversation for my next post.
Tuesday, 7 May 2013
Starting Humira tomorrow...
So I got my first delivery of Humira on friday. They seem to have given me enough injections for 4 doses. There are eight pens al in separate boxes, which actually takes up quite a lot of room in the fridge. Each pen injects 40mg Humira. The first dose I take is a called a "loading dose" and is a dose of 160mg. This means I have to use 4 pens in one go, so the stock in my fridge will rapidly decrease after tomorrow.
I have a nurse coming around after work tomorrow, to help me do my first injections, offer support and advice, and to be close to hand in case I suffer any immediate reaction to the injections.
I am partly nervous, and partly anxious to get on with it now. I have been off the Pentasa for a month now, and have been constantly thinking about my condition. This is mainly because in the back of my mind I am worried that the disease may be steadily getting worse all the time I am not having any medication. I'm a little concerned about the possible side effects of the drug. I have been reading up on other people's experiences on www.crohnsforum.org and it seems that effects of the drug can vary from not feeling anything in particular, to extreme fatigue, right through to a severe allergic reaction!
It's the fatigue that concerns me the most. I still have to go to work, and "feeling tired" is a difficult one when it comes to support for colleagues and managers. I've been feeling very tired recently - I'm assuming due to anaemia, and I have found it very hard to be very effective at work. I suppose there's no point in worrying about it now. I just need to see how I feel over the next couple of weeks.
I haven't told y boss about my new treatment. She knows that I am starting some new treatment, but I decided it was best not to brief her on the "possibilities" If I find that the Humira makes me feel unwell in any way, then I'd be better off explaining it to her then. My immediate colleagues know all about my illness and the treatment I'm about to start, and they are very understanding and supportive. I think this is the most important thing when it comes to being open about any condition that you deal with whilst at work.
I have a nurse coming around after work tomorrow, to help me do my first injections, offer support and advice, and to be close to hand in case I suffer any immediate reaction to the injections.
I am partly nervous, and partly anxious to get on with it now. I have been off the Pentasa for a month now, and have been constantly thinking about my condition. This is mainly because in the back of my mind I am worried that the disease may be steadily getting worse all the time I am not having any medication. I'm a little concerned about the possible side effects of the drug. I have been reading up on other people's experiences on www.crohnsforum.org and it seems that effects of the drug can vary from not feeling anything in particular, to extreme fatigue, right through to a severe allergic reaction!
It's the fatigue that concerns me the most. I still have to go to work, and "feeling tired" is a difficult one when it comes to support for colleagues and managers. I've been feeling very tired recently - I'm assuming due to anaemia, and I have found it very hard to be very effective at work. I suppose there's no point in worrying about it now. I just need to see how I feel over the next couple of weeks.
I haven't told y boss about my new treatment. She knows that I am starting some new treatment, but I decided it was best not to brief her on the "possibilities" If I find that the Humira makes me feel unwell in any way, then I'd be better off explaining it to her then. My immediate colleagues know all about my illness and the treatment I'm about to start, and they are very understanding and supportive. I think this is the most important thing when it comes to being open about any condition that you deal with whilst at work.
Friday, 19 April 2013
MRI scan of the small bowel
Today was the day of my MRI scan of the small bowel. I wasn't overly worried or anxious about it as I figured it wouldn't be as bad as a barium follow through x-ray, which is the way this area of the bowel used to be examined. I didn't remember having a particular problem with the follow through so I concluded the MRI would be a walk in the park. How wrong was I?
First up I had to drink a litre of a fluid called Mannitol. I wasn't allowed to eat or drink for 6 hours before, and my appointment was mid morning. As I had been asleep all night, I actually hadn't had a drink for about 13 hours. At first I was glad of a drink - any drink. It looked like water and tasted sweet with a slightly salty hint in the background. The first cup was fine. Then I started to feel a little nautious and strangely bloated. The rest of the drink was a struggle. I started to feel a little pain in my upper abdomen, I'm guessing because the Mannitol was supposed to open up the bowel a little so that it could be viewed.
Before long it was time for the scan. I had a cannula inserted into my arm, so that an IV of buscopan - a muscle relaxant could be administered, and later, a dye used to show up the blood in my body.
First of all I was laid down on the bed in front of the scanner, and then I was strapped to it with some cushion, padding type stuff over my front. I was given headphones that served both as ear defenders from the noise of the scanner, and as communication between me and the radiographer in the next room. I had a series of scans taken like this. I was asked to breathe in, breathe out a little and then hold my breath. Sounds easy huh? Not so easy when the breath hold was nearly 30 seconds long, and I currently have a heavy cold with a cough. The first go at this was wasted as I had to breathe. The breath holding was to keep everything as still as possible so that clear scans can be taken, without blurring.
Once I knew just how long I was expected to hold my breath, I was a little better at it. After 10 mins of this I received the buscopan and the dye IV. I didn't particularly feel any of this, and no side effects of blurred vision. Then it was back into the scan, for more of the same thing.
I don't suffer from claustrophobia, so the closeness of the tunnel wasn't a problem and being able to lie still and quiet when you are mother of two small children was something of a novelty. The noise was quite surprising. A series of loud beeps and hums, and at one point hard vibrations that shook the table I was on!
In the second half, I desperately needed to cough, and the more I tried not to, the worse it got. I found myself swallowing to try to stop it, which wouldn't be very good as this would be moving the bowel. The more I tried to stop, the more little involuntary spasms in my abdomen occurred. In the end I had to ask them to pause while I gave a good cough! This wasn't just in my head because I knew I shouldn't. I really do have a nasty cough at the moment!
Finally the scanning was over, and once I had got changed out of my gown and sat quietly for 10 minutes, I could go.
"All over" I thought. Again, how wrong was I! Almost immediately the muscle relaxant started to take effect on my bowels, and I have been running to the toilet for the last six hours. I think it has finally stopped. I have felt very bloated, sore and distended all afternoon. I have also finally succumbed to the cold/flu I've been fighting for the past couple of days. The rest of my family have had it - My Mum, Dad, and two daughters, and I knew it was a matter of time with me. I've been coping with the shivers as well as diarrhoea all afternoon, and quite frankly I feel rotten!
Still, that's it for a while anyway. I have now had the whole of my gut examined and I should have the results of the MRI in a week or two. I also had the blood tests and chest x-ray done today that are required before I begin taking biologics. I should get the results of these in a week and as long as they are all clear and my immune system is ok, then I will begin with the Humira injections.
In some ways it doesn't matter what the results of the MRI are. Whether there is a lot of active disease in the small intestine, or no disease, I will still be on the Humira.
I'm not sure how I feel about the thought of beginning the biologics . At the moment, all I want to do is get over the cold, and start pushing this gremlin back into remission!
First up I had to drink a litre of a fluid called Mannitol. I wasn't allowed to eat or drink for 6 hours before, and my appointment was mid morning. As I had been asleep all night, I actually hadn't had a drink for about 13 hours. At first I was glad of a drink - any drink. It looked like water and tasted sweet with a slightly salty hint in the background. The first cup was fine. Then I started to feel a little nautious and strangely bloated. The rest of the drink was a struggle. I started to feel a little pain in my upper abdomen, I'm guessing because the Mannitol was supposed to open up the bowel a little so that it could be viewed.
Before long it was time for the scan. I had a cannula inserted into my arm, so that an IV of buscopan - a muscle relaxant could be administered, and later, a dye used to show up the blood in my body.
First of all I was laid down on the bed in front of the scanner, and then I was strapped to it with some cushion, padding type stuff over my front. I was given headphones that served both as ear defenders from the noise of the scanner, and as communication between me and the radiographer in the next room. I had a series of scans taken like this. I was asked to breathe in, breathe out a little and then hold my breath. Sounds easy huh? Not so easy when the breath hold was nearly 30 seconds long, and I currently have a heavy cold with a cough. The first go at this was wasted as I had to breathe. The breath holding was to keep everything as still as possible so that clear scans can be taken, without blurring.
Once I knew just how long I was expected to hold my breath, I was a little better at it. After 10 mins of this I received the buscopan and the dye IV. I didn't particularly feel any of this, and no side effects of blurred vision. Then it was back into the scan, for more of the same thing.
I don't suffer from claustrophobia, so the closeness of the tunnel wasn't a problem and being able to lie still and quiet when you are mother of two small children was something of a novelty. The noise was quite surprising. A series of loud beeps and hums, and at one point hard vibrations that shook the table I was on!
In the second half, I desperately needed to cough, and the more I tried not to, the worse it got. I found myself swallowing to try to stop it, which wouldn't be very good as this would be moving the bowel. The more I tried to stop, the more little involuntary spasms in my abdomen occurred. In the end I had to ask them to pause while I gave a good cough! This wasn't just in my head because I knew I shouldn't. I really do have a nasty cough at the moment!
Finally the scanning was over, and once I had got changed out of my gown and sat quietly for 10 minutes, I could go.
"All over" I thought. Again, how wrong was I! Almost immediately the muscle relaxant started to take effect on my bowels, and I have been running to the toilet for the last six hours. I think it has finally stopped. I have felt very bloated, sore and distended all afternoon. I have also finally succumbed to the cold/flu I've been fighting for the past couple of days. The rest of my family have had it - My Mum, Dad, and two daughters, and I knew it was a matter of time with me. I've been coping with the shivers as well as diarrhoea all afternoon, and quite frankly I feel rotten!
Still, that's it for a while anyway. I have now had the whole of my gut examined and I should have the results of the MRI in a week or two. I also had the blood tests and chest x-ray done today that are required before I begin taking biologics. I should get the results of these in a week and as long as they are all clear and my immune system is ok, then I will begin with the Humira injections.
In some ways it doesn't matter what the results of the MRI are. Whether there is a lot of active disease in the small intestine, or no disease, I will still be on the Humira.
I'm not sure how I feel about the thought of beginning the biologics . At the moment, all I want to do is get over the cold, and start pushing this gremlin back into remission!
Sunday, 14 April 2013
Making a Low Residue Diet Interesting (Including lovely recipe) ...
I have found it very difficult to do anything but follow a low residue diet, pretty much since Christmas now. I have found it very dull and frustrating as I love food. I love all types of flavours and textures, and when I am not having a flare up I eat an extremely varied diet.
The reason I've been following a low residue diet is because any time I eat any roughage, I find myself in a lot of pain, with a very distended gut. I have been doing this off my own back, and it wasn't until last week that the IBD specialist nurse actually advised I continue with a low residue diet. Now that I know it could be several months or more that I am unable to tolerate many vegetables, grains, nuts, and seeds, I have been putting a lot of effort into my daily meals. Eating nothing but white bread, white rice, white pasta and chicken very quickly gets rather boring.
So what is a low residue diet? It is anything that passes through the gut without leaving very much residue, and therefore needs little effort with regards to bowel movement. I downloaded a diet sheet from South Devon NHS trust, and this together with a few searches on the web, and my own experience has given me a diet of the following:
Carbohydrate:
Choose:
White Rice
White Flour (bread, pasta, noodles)
Potatoes without skin
Avoid
Brown Rice
Wholemeal bread, pasta, malted bread, granary bread
Potatoes with skin
Protein
All red meat
Chicken
White fish
Cheese
Eggs
Keep processed pork to a minimum
Vegetables (two small portions a day)
Choose: ( peeled and well cooked)
Carrots, Swede, Parsnips
Squash, Courgette, Marrow - without skin or seeds
Broccoli without stalks
Spinach leaves without stalks
Tomato without skin or seeds
Avoid:
Onion, Celery, Garlic
Chilli
Cabbage
Sweetcorn
Pulses - peas, beans, lentils
Fruit
Choose:
Ripe Bananas
Tinned Fruit, except pineapple
All fruit, cooked without skins or seeds
Avoid
Unripe Bananas
Pineapple
Raw fruit with skins and seeds
Out of all of this, the thing I am struggling with most is not being able to use onion, celery or garlic. However, this weekend, with a little effort I have managed to produce some good meals, and I haven't felt that I've missed out when sat around with the rest of the family. My biggest success was my "Low Residue Lasagne" (See below). With this I was able to feed the rest of the family the same thing as myself without worrying as to whether they had received a healthy and balanced diet.
Low Residue Lasagne
Ingredients:
For the Ragu:
8oz Ground Beef
2 8oz tins chopped tomatoes, seived to remove chunky fibres and seeds (or two tins passata)
1 Aubergine, skinned and chopped
4 mushrooms, skinned and chopped
1 courgette, skinned and deseeded
6 sheets white egg lasagne
1/2 teaspoon garlic salt
1 teaspoon Oregano
1 teaspoon Basil
For the white sauce:
1/2 pint milk
1 tablespoon flour
1oz butter
Parmesan cheese to taste
Method:
Sautee the aubergine, courgette and mushrooms for 10 mins, so that they are soft, then add the beef and brown. Pour in the seived tomatoes, and season with herbs and a good amount of freshly milled pepper. Add the tomato puree, cover and simmer for 20 minutes. Meanwhile make the white sauce:
Melt the butter in a saucepan and add the flour, cook for 1min and gradually add the milk, stirring to incorporate it into the flour before each addition. Cook for 1 - 2 minutes until sauce is thick and creamy. Stir in grated parmesan to taste.
Layer up the ragu and lasagne sheets in an ovenproof dish. Pour the white sauce over the top and grate cheese over.
Bake in a hot oven for 45 minutes until the cheese on top has melted and is bubbling and golden brown.
I served this with warm, crusty white rolls from the oven. I gave the rest of the family a portion of sweetcorn which obviously isn't low residue so I didn't serve myself this As I had two portions of low residue vegetables in the Lasagne, I did not have a vegetable side dish.
It was delicious, and the rest of the family obviously thought so too. Best of all, there was no painful cramping or distention in the days that followed!
The reason I've been following a low residue diet is because any time I eat any roughage, I find myself in a lot of pain, with a very distended gut. I have been doing this off my own back, and it wasn't until last week that the IBD specialist nurse actually advised I continue with a low residue diet. Now that I know it could be several months or more that I am unable to tolerate many vegetables, grains, nuts, and seeds, I have been putting a lot of effort into my daily meals. Eating nothing but white bread, white rice, white pasta and chicken very quickly gets rather boring.
So what is a low residue diet? It is anything that passes through the gut without leaving very much residue, and therefore needs little effort with regards to bowel movement. I downloaded a diet sheet from South Devon NHS trust, and this together with a few searches on the web, and my own experience has given me a diet of the following:
Carbohydrate:
Choose:
White Rice
White Flour (bread, pasta, noodles)
Potatoes without skin
Avoid
Brown Rice
Wholemeal bread, pasta, malted bread, granary bread
Potatoes with skin
Protein
All red meat
Chicken
White fish
Cheese
Eggs
Keep processed pork to a minimum
Vegetables (two small portions a day)
Choose: ( peeled and well cooked)
Carrots, Swede, Parsnips
Squash, Courgette, Marrow - without skin or seeds
Broccoli without stalks
Spinach leaves without stalks
Tomato without skin or seeds
Avoid:
Onion, Celery, Garlic
Chilli
Cabbage
Sweetcorn
Pulses - peas, beans, lentils
Fruit
Choose:
Ripe Bananas
Tinned Fruit, except pineapple
All fruit, cooked without skins or seeds
Avoid
Unripe Bananas
Pineapple
Raw fruit with skins and seeds
Out of all of this, the thing I am struggling with most is not being able to use onion, celery or garlic. However, this weekend, with a little effort I have managed to produce some good meals, and I haven't felt that I've missed out when sat around with the rest of the family. My biggest success was my "Low Residue Lasagne" (See below). With this I was able to feed the rest of the family the same thing as myself without worrying as to whether they had received a healthy and balanced diet.
Low Residue Lasagne
Ingredients:
For the Ragu:
8oz Ground Beef
2 8oz tins chopped tomatoes, seived to remove chunky fibres and seeds (or two tins passata)
1 Aubergine, skinned and chopped
4 mushrooms, skinned and chopped
1 courgette, skinned and deseeded
6 sheets white egg lasagne
1/2 teaspoon garlic salt
1 teaspoon Oregano
1 teaspoon Basil
For the white sauce:
1/2 pint milk
1 tablespoon flour
1oz butter
Parmesan cheese to taste
Method:
Sautee the aubergine, courgette and mushrooms for 10 mins, so that they are soft, then add the beef and brown. Pour in the seived tomatoes, and season with herbs and a good amount of freshly milled pepper. Add the tomato puree, cover and simmer for 20 minutes. Meanwhile make the white sauce:
Melt the butter in a saucepan and add the flour, cook for 1min and gradually add the milk, stirring to incorporate it into the flour before each addition. Cook for 1 - 2 minutes until sauce is thick and creamy. Stir in grated parmesan to taste.
Layer up the ragu and lasagne sheets in an ovenproof dish. Pour the white sauce over the top and grate cheese over.
Bake in a hot oven for 45 minutes until the cheese on top has melted and is bubbling and golden brown.
I served this with warm, crusty white rolls from the oven. I gave the rest of the family a portion of sweetcorn which obviously isn't low residue so I didn't serve myself this As I had two portions of low residue vegetables in the Lasagne, I did not have a vegetable side dish.
It was delicious, and the rest of the family obviously thought so too. Best of all, there was no painful cramping or distention in the days that followed!
Saturday, 13 April 2013
Advice from all sides
I got a phone call from my GP today. He was asking gor an update on how I got on at my endoscopy. It appears he has received a report on the gastroscopy, but not necessarily the colonoscopy. After I got the impression that my oesophagus down to the top of my small intestine was clear, it seems that the report he received says that there was some inflammation. He read it out to me, and whilst I can't remember the exact phrase, words such as erythema, and duodenitis were in amongst it. He interepreted it as an inflamed duodenum.
He asked whether I had been put on any medication, and I explained that biologics had been suggested, but I was to have the MRI, blood tests and a chest x-ray next week. He wondered whether the inflammation in the duodenum might be a side effect of the pentasa, and has given me a prescription for omeprazole as some "protection" for my stomach. He has tasked me with enquiring with my consultant as to whether this is a sensible course of action, and if he might think that the inflammation in my duodenum could be due to the pentasa.
I am quite pleased that my GP is still taking an interest in my health, and wants to ensure he understands the results of examinations. I am also pleased that he has passed on the results of the gastroscopy to me, as I was under the impression that everything was normal in this part of my digestive tract, when it obviously isn't. I have to admit though, I am a little concerned at this stage that I might begin to feel like I'm being pushed and shoved in all directions between IBD nurse, consultant and GP. I guess I'm not really used to having worthwhile support from medical professionals. Up until now, I have pretty much felt like anybody I have seen, (except for the dermatologist who dealth with my Pyoderma Gangrenosum - who was exceptional) couldn't wait to get me out of their consulting room as they had rather a lot of other patients to deal with thank you very much!
I am beginnning now, to see just why the consultant is considering taking a "top-down" approach to my treatment. If there is inflammation in my duodenum, then I no longer simply have Colonic crohn's, it is quite possibly all the way through my digestive tract. The MRI scan should be able to tell if this is the case.
I think possibly, I have little choice but to begin ant-TNF drugs if I am to push this baby back into remission. As to whether I choose Humira or Remicade, I'm think it doesn't really matter. If I am able to take Humira and there are no ill effects, then this may be the most practical for me. Injecting myself, although it may take a bit of getting used to, is preferable to having to keep taking half days off of work in order to go to the hospital for an infusion.
He asked whether I had been put on any medication, and I explained that biologics had been suggested, but I was to have the MRI, blood tests and a chest x-ray next week. He wondered whether the inflammation in the duodenum might be a side effect of the pentasa, and has given me a prescription for omeprazole as some "protection" for my stomach. He has tasked me with enquiring with my consultant as to whether this is a sensible course of action, and if he might think that the inflammation in my duodenum could be due to the pentasa.
I am quite pleased that my GP is still taking an interest in my health, and wants to ensure he understands the results of examinations. I am also pleased that he has passed on the results of the gastroscopy to me, as I was under the impression that everything was normal in this part of my digestive tract, when it obviously isn't. I have to admit though, I am a little concerned at this stage that I might begin to feel like I'm being pushed and shoved in all directions between IBD nurse, consultant and GP. I guess I'm not really used to having worthwhile support from medical professionals. Up until now, I have pretty much felt like anybody I have seen, (except for the dermatologist who dealth with my Pyoderma Gangrenosum - who was exceptional) couldn't wait to get me out of their consulting room as they had rather a lot of other patients to deal with thank you very much!
I am beginnning now, to see just why the consultant is considering taking a "top-down" approach to my treatment. If there is inflammation in my duodenum, then I no longer simply have Colonic crohn's, it is quite possibly all the way through my digestive tract. The MRI scan should be able to tell if this is the case.
I think possibly, I have little choice but to begin ant-TNF drugs if I am to push this baby back into remission. As to whether I choose Humira or Remicade, I'm think it doesn't really matter. If I am able to take Humira and there are no ill effects, then this may be the most practical for me. Injecting myself, although it may take a bit of getting used to, is preferable to having to keep taking half days off of work in order to go to the hospital for an infusion.
Thursday, 11 April 2013
A stricture, humira/infliximab and the top down approach
So, following my colonoscopy, and the rather alarming realisation that the pain and discomfort I've been feeling, was not just me looking for sympathy, I had a brief discussion with my IBD specialist nurse.
I have had the option of support from an IBD nurse since diagnosis in 2003. In this time I have spoken to a nurse over the phone just twice. I have never really thought about using them as a point of call really, but I think from now on I may talk to them on the phone more often now. When I'm in need of advice or help and a consultants appointment is too far away I think they must be a very useful resource.
Immediately after my colonscopy, my GI consultant was not readily available - he had more colonoscopies to get through, and was due to be on holiday for two weeks after that day. In steps the IBD nurse, who was available to interpret the initial report following the examination. She explained that the stricture was inflammatory, rather than fibrous. This was good news, or at least better news than I had hoped. The fact that the narrow part was narrow because of an area of inflammation, rather than fibrous scar tissue meant that it could be treated with drugs rather than surgery. We could get the inflammation down, and if necessary the stricture can be dialated, rather than cut out. This was all good news, but then all of a sudden she started to talk about the treatment that the consultant was suggesting. A group of drugs called biologics. Remicade also known as infliximab. I had heard the name, but didn't know how it worked. She explained that people with crohn's seem to produce far more of an antibody called TNF. The remicade, removes the excess TNF and was therefore known as an anti-TNF. This makes it an immuno-suppressant. In my head this started to sound rather heavy, considering I only had mild crohn's (or do I?).
The nurse then went on to explain that the drug is adminsistered intravenously at the hospital. At this point I started to wonder if I was actually really unwell, and I just hadn't realised it. I asked if it could not be done at a hospital more local to me, or at my doctors surgery, because this particular hospital was an hour and half's drive away. At this point she explained it had to be done at this hospital as it needs to be administered by specialist nurses/doctors, but there was an alternative. The other Anti-TNF drug of choice is Humira, which works in the same way, except it is administered as an injection, which I can do myself. She sent me away to think about the two drugs, with information about each.
As both drugs are immunosupressants, I need to have some blood tests and a chest x-ray looking for TB. Before I can start treatment we need to be sure I have no existing infections. I have an MRI scan of the small bowel next week, and the blood tests and x-ray have been booked in for the same day, which is handy.
So here I am left wondering why I have to have the "big guns" in terms of crohn's treatment. I poured over the results of the colonoscopy. The consultant had rated my condition as "moderate". This was a little disappointing as it seems to have moved from mild-moderate to simply moderate. It is not however, "severe". I have looked at forums and other blogs, and then realised on my results the consultant has written "suggest top-down". I thought this was referring to an examination of the top of the bowel. Now I realise this is the suggested approach to my treatment. The top down approach appears to be the reverse of how crohn's has been traditionally treated. My treatment has always been - use the weaker drugs, such as mesalazine and if need be a dose of corticosteroids. Now the approach is to bring out the big guns such as biologics early on in order to give a better chance of putting the disease into remission. I guess this can only really be a good thing.
For now, I am on no treatment at all. I asked if I should continue taking the pentasa (mesalazine) until we get the anti-TNF sorted out and the nurse said she didn't see any point, as from the colonoscopy it didn't look like they were doing any good. She advised that I remain on a low residue diet and maybe take some mild laxatives (laculose) to help with transit through the stricture. I thought that she was wrong about the pentasa and that it was helping, but I did stop taking it a week ago and have remained on a fairly strict low residue diet. I have felt very little pain or discomfort, so it appears that she was indeed right!
So my next blogs are going to be on my readings and thoughts around my choice of Humira or Infliximab, and how I am sticking to such a restrictive diet as low residue. If anybody has any thoughts or suggestions around Infliximab and Humira, and Low Residue Diets, feel free to comment.
I have had the option of support from an IBD nurse since diagnosis in 2003. In this time I have spoken to a nurse over the phone just twice. I have never really thought about using them as a point of call really, but I think from now on I may talk to them on the phone more often now. When I'm in need of advice or help and a consultants appointment is too far away I think they must be a very useful resource.
Immediately after my colonscopy, my GI consultant was not readily available - he had more colonoscopies to get through, and was due to be on holiday for two weeks after that day. In steps the IBD nurse, who was available to interpret the initial report following the examination. She explained that the stricture was inflammatory, rather than fibrous. This was good news, or at least better news than I had hoped. The fact that the narrow part was narrow because of an area of inflammation, rather than fibrous scar tissue meant that it could be treated with drugs rather than surgery. We could get the inflammation down, and if necessary the stricture can be dialated, rather than cut out. This was all good news, but then all of a sudden she started to talk about the treatment that the consultant was suggesting. A group of drugs called biologics. Remicade also known as infliximab. I had heard the name, but didn't know how it worked. She explained that people with crohn's seem to produce far more of an antibody called TNF. The remicade, removes the excess TNF and was therefore known as an anti-TNF. This makes it an immuno-suppressant. In my head this started to sound rather heavy, considering I only had mild crohn's (or do I?).
The nurse then went on to explain that the drug is adminsistered intravenously at the hospital. At this point I started to wonder if I was actually really unwell, and I just hadn't realised it. I asked if it could not be done at a hospital more local to me, or at my doctors surgery, because this particular hospital was an hour and half's drive away. At this point she explained it had to be done at this hospital as it needs to be administered by specialist nurses/doctors, but there was an alternative. The other Anti-TNF drug of choice is Humira, which works in the same way, except it is administered as an injection, which I can do myself. She sent me away to think about the two drugs, with information about each.
As both drugs are immunosupressants, I need to have some blood tests and a chest x-ray looking for TB. Before I can start treatment we need to be sure I have no existing infections. I have an MRI scan of the small bowel next week, and the blood tests and x-ray have been booked in for the same day, which is handy.
So here I am left wondering why I have to have the "big guns" in terms of crohn's treatment. I poured over the results of the colonoscopy. The consultant had rated my condition as "moderate". This was a little disappointing as it seems to have moved from mild-moderate to simply moderate. It is not however, "severe". I have looked at forums and other blogs, and then realised on my results the consultant has written "suggest top-down". I thought this was referring to an examination of the top of the bowel. Now I realise this is the suggested approach to my treatment. The top down approach appears to be the reverse of how crohn's has been traditionally treated. My treatment has always been - use the weaker drugs, such as mesalazine and if need be a dose of corticosteroids. Now the approach is to bring out the big guns such as biologics early on in order to give a better chance of putting the disease into remission. I guess this can only really be a good thing.
For now, I am on no treatment at all. I asked if I should continue taking the pentasa (mesalazine) until we get the anti-TNF sorted out and the nurse said she didn't see any point, as from the colonoscopy it didn't look like they were doing any good. She advised that I remain on a low residue diet and maybe take some mild laxatives (laculose) to help with transit through the stricture. I thought that she was wrong about the pentasa and that it was helping, but I did stop taking it a week ago and have remained on a fairly strict low residue diet. I have felt very little pain or discomfort, so it appears that she was indeed right!
So my next blogs are going to be on my readings and thoughts around my choice of Humira or Infliximab, and how I am sticking to such a restrictive diet as low residue. If anybody has any thoughts or suggestions around Infliximab and Humira, and Low Residue Diets, feel free to comment.
Tuesday, 9 April 2013
A stricture it is then!
So, it seems to be a running theme that whenever I go for a signigicant examination, my worst fears are realised! Well, to be honest, that is a slight over exaggeration there. My fear was that they would find a stricure, but my biggest concern was that the only releif would be surgery. Thankfully, at this point this is not the option.
My "bowel cleansing" was not nearly as terrible as I remember is being the last time. My herbal laxative I took first seemed very gentle, and fairly soon I passed a soft motion, and not a lot else happened. Eight hours later I took the more heavy duty Citrafleet. This was a powder made up in water, which wasn't anywhere near as disgusting to drink as the Picolax I had to take the last time. It was very sweet and slightly orangey. I then had to drink a litre of water over the following two hours. It was another half an hour after this that I passed the first motion. The diarrhoea was fairly frequent after this and it did sting a little around the anus, but it wasn't as often as I remember it being, or as voluminous, or as urgent. This, I have to say was quite a releif, as although I thought I had done my best to ensure that I had left the day free and did not have to do anything but sit on the toilet if necessary, I found myself very busy. I seemed to be in charge of both my own children (4 and 2 years old) and my nieces and nephew (13, 8 and 3 years old). This was a little hectic and there was a lot of trying to play games such as Monopoly or puzzles, or cards. All of which were suitable for some ages but not for others. Then there was having to feed them when I couldn't actually eat anything myself, and having to share one toilet with them! This is a fairly hectic day for me normally, let alone when I am trying to perform a bowel cleansing preparation.
Anyway, that's enough moaning, I got through it, and my Mum very kindly drove me to the hospital for the endoscopy.
I arrived a few minutes before my appointment time and was ushered down to a room where my pulse and blood pressure was taken. I was then asked to get changed into a hospital gown and wait in a "ladies" waiting room to be called by a nurse. I put on the gown, a dressing gown (as the gowns are open at the back!) and my slippers.
In the waiting room already was an older lady. She immediately began talking to me, which at first I found a little annoying. I had come prepared with a book, as at this point I didn't want to think too much about anything. She was obviously nervous about what she was about to have done, and I softened a little and we chatted a little about how long we'd waited for the appointment, and how hungry we felt - how much we still felt like we needed the toilet etc. Another lady came in, also older, and then yet another lady - older still. It dawned on me that it was likely all these women were having endoscopies as a result of bowel screening and it was also likely the result that they were worried about was bowel cancer. It mus be awful to reach a late age with little or no problems with your gut and then be faced with such a procedure, looking for a potentially fatal disease. Whilst I know that Cancer is a risk with someone with crohn's, at my current age and my relatively low number of flares, it is not currently in the forefront of my mind.
After an hour of waiting, I finally entered the examination room for my colonoscopy.
I had opted not to have seadation during my pre-assessment, and was feeling rather nervous at whether I was going to experience a lot of pain. I voiced this worry with the endoscopist and she was very helpful. She said we would try without sedation and if I was too uncomfortable, just say and I could be sedated. As it was I managed without sedation, which I am very pleased about as it meant I could have a conversation with the consultant and IBD nurse straight after the examination and not worry about forgetting it!
The gastroscopy was uncomfortable, becase of having to swallow a tube, having air pumped down my oesophagus, and having to bite on a plastic guard which stopped me biting on the endoscope, but apart from that it wasn't too bad. My gag reflex wasn't too terrible, and due to the air being passed down there was some rather disgusting belching noises, but not nearly as horrific as I remember from last time. My Oesphagus, stomach and the top of my small intestine all appeared normal which was great news.
Next was the colonoscopy. The endoscope went in fairly easily and it was a little uncomfortable but not too bad. The best thing about it compared to the barium enema I'd had before was that it was all visible on a television screen, and I could look at it most of the way through. It was incredible. It didn't seem too bad. From my inexperienced eye, it looked like I was looking at a completely gut. Every so often it seemed to go out of focus and all I could see was pink blurr. Sometimes I could see brown patches which I wasn't sure whether they were remaining fecal matter, or ulcers. I kept being asked if I took Non-steroidal Anti-inflammatories - which I don't. I know you are not meant to if you have crohn's. I also kept being asked if I'd ever had any internal examinations apart from the one that diagnosed me ten years ago. At one point the consultant pressed hard on my abdomen, I assume to get the endoscope in the right place. Eventually I said "it looks like a pretty healthy gut to me?" At this point the consultant said:
"That's the interesting thing with Crohn's disease. You get perfectly healthy sections of gut and then - you see this bit's inflamed here." The bit he was talking about was the bit that was pink and out of focus. It turned out that the brown bits were in fact ulcers, and the pink out of focus bits was a stricture. In fact the consultant stopped the endoscopy part way a long because the stricture was too inflamed and the opening too narrow to get the endoscope safely further up the bowel!
And so, after this I have decided I must have a pretty high pain threshold, as I did not have sedation, just little gas an air, which quite frankly I could have done without. I hate the way it makes you feel tingly and giddy, and I would prefer put up with being uncomfortable!
Below a 're a couple of pictures from the endoscopy. The top is a section of my gut which is healthy, at the sigmoid. Although black and white, you can see a defined hole, where waste passes through to the rectum and anus. Below is where it is inflamed. And it is very difficult to make it the passage that feels all matter can take. This is the stricture.
Anyway, I shall leave this post here, and in the next post I will go through the discussion and treatment proposal I reaceived directly after my colonoscopy.
My "bowel cleansing" was not nearly as terrible as I remember is being the last time. My herbal laxative I took first seemed very gentle, and fairly soon I passed a soft motion, and not a lot else happened. Eight hours later I took the more heavy duty Citrafleet. This was a powder made up in water, which wasn't anywhere near as disgusting to drink as the Picolax I had to take the last time. It was very sweet and slightly orangey. I then had to drink a litre of water over the following two hours. It was another half an hour after this that I passed the first motion. The diarrhoea was fairly frequent after this and it did sting a little around the anus, but it wasn't as often as I remember it being, or as voluminous, or as urgent. This, I have to say was quite a releif, as although I thought I had done my best to ensure that I had left the day free and did not have to do anything but sit on the toilet if necessary, I found myself very busy. I seemed to be in charge of both my own children (4 and 2 years old) and my nieces and nephew (13, 8 and 3 years old). This was a little hectic and there was a lot of trying to play games such as Monopoly or puzzles, or cards. All of which were suitable for some ages but not for others. Then there was having to feed them when I couldn't actually eat anything myself, and having to share one toilet with them! This is a fairly hectic day for me normally, let alone when I am trying to perform a bowel cleansing preparation.
Anyway, that's enough moaning, I got through it, and my Mum very kindly drove me to the hospital for the endoscopy.
I arrived a few minutes before my appointment time and was ushered down to a room where my pulse and blood pressure was taken. I was then asked to get changed into a hospital gown and wait in a "ladies" waiting room to be called by a nurse. I put on the gown, a dressing gown (as the gowns are open at the back!) and my slippers.
In the waiting room already was an older lady. She immediately began talking to me, which at first I found a little annoying. I had come prepared with a book, as at this point I didn't want to think too much about anything. She was obviously nervous about what she was about to have done, and I softened a little and we chatted a little about how long we'd waited for the appointment, and how hungry we felt - how much we still felt like we needed the toilet etc. Another lady came in, also older, and then yet another lady - older still. It dawned on me that it was likely all these women were having endoscopies as a result of bowel screening and it was also likely the result that they were worried about was bowel cancer. It mus be awful to reach a late age with little or no problems with your gut and then be faced with such a procedure, looking for a potentially fatal disease. Whilst I know that Cancer is a risk with someone with crohn's, at my current age and my relatively low number of flares, it is not currently in the forefront of my mind.
After an hour of waiting, I finally entered the examination room for my colonoscopy.
I had opted not to have seadation during my pre-assessment, and was feeling rather nervous at whether I was going to experience a lot of pain. I voiced this worry with the endoscopist and she was very helpful. She said we would try without sedation and if I was too uncomfortable, just say and I could be sedated. As it was I managed without sedation, which I am very pleased about as it meant I could have a conversation with the consultant and IBD nurse straight after the examination and not worry about forgetting it!
The gastroscopy was uncomfortable, becase of having to swallow a tube, having air pumped down my oesophagus, and having to bite on a plastic guard which stopped me biting on the endoscope, but apart from that it wasn't too bad. My gag reflex wasn't too terrible, and due to the air being passed down there was some rather disgusting belching noises, but not nearly as horrific as I remember from last time. My Oesphagus, stomach and the top of my small intestine all appeared normal which was great news.
Next was the colonoscopy. The endoscope went in fairly easily and it was a little uncomfortable but not too bad. The best thing about it compared to the barium enema I'd had before was that it was all visible on a television screen, and I could look at it most of the way through. It was incredible. It didn't seem too bad. From my inexperienced eye, it looked like I was looking at a completely gut. Every so often it seemed to go out of focus and all I could see was pink blurr. Sometimes I could see brown patches which I wasn't sure whether they were remaining fecal matter, or ulcers. I kept being asked if I took Non-steroidal Anti-inflammatories - which I don't. I know you are not meant to if you have crohn's. I also kept being asked if I'd ever had any internal examinations apart from the one that diagnosed me ten years ago. At one point the consultant pressed hard on my abdomen, I assume to get the endoscope in the right place. Eventually I said "it looks like a pretty healthy gut to me?" At this point the consultant said:
"That's the interesting thing with Crohn's disease. You get perfectly healthy sections of gut and then - you see this bit's inflamed here." The bit he was talking about was the bit that was pink and out of focus. It turned out that the brown bits were in fact ulcers, and the pink out of focus bits was a stricture. In fact the consultant stopped the endoscopy part way a long because the stricture was too inflamed and the opening too narrow to get the endoscope safely further up the bowel!
And so, after this I have decided I must have a pretty high pain threshold, as I did not have sedation, just little gas an air, which quite frankly I could have done without. I hate the way it makes you feel tingly and giddy, and I would prefer put up with being uncomfortable!
Below a 're a couple of pictures from the endoscopy. The top is a section of my gut which is healthy, at the sigmoid. Although black and white, you can see a defined hole, where waste passes through to the rectum and anus. Below is where it is inflamed. And it is very difficult to make it the passage that feels all matter can take. This is the stricture.
Anyway, I shall leave this post here, and in the next post I will go through the discussion and treatment proposal I reaceived directly after my colonoscopy.
2 days until endoscopy. Let the "bowel preparation" begin!
In two days time I have my endoscopy appointment. I am having a double wammy - a camera down my throat (gastro-oesophogeal endoscopy) and a camera up my bum (colonoscopy). For this to happen, my bowel has to be "cleansed". I have had to eat only very low fibre foods for the last 48 hours. Chicken, white rice or skinless potatoes, white bread. Thankfully I can have butter, cheese and milk. I love all things dairy so at least the plain white bread isn't too boring. Tomorrow morning the fun really begins.... I have to take two senna tablets at 8am. These are herbal laxatives. From lunchtime, I must begin fasting, and take a dose of Citrafleet, a more ... heavy duty laxative. The next morning I take another dose of Citrafleet, and ensure I keep my fluids up. So hopefully by the time I have my appointment, the day after tommorrow at 1:15pm, I will have a completely empty bowel for the camera to go up and view the inside of my gut.
I have done something very similar to this before, nearly ten years ago, when I had a barium enema - an x-ray to view the gut. The same kind of preparation had to be carried out. This time, I am far more nervous about the whole thing. Last time I found the procedure painful and uncomfortable (not surprising really as it's pushing something through a very inflamed area of my body, where I feel some pain most of the time anyway.
I think the reason that I feel nervous this time is because before, all I wanted to know was what was wrong with me, and by that point I didn't really care what it was, as long as I could start getting the right treatment. This time, I already know what's wrong, so that just leaves me worrying about how bad it could me. My main concern is that they might find I have a stricture. This may account for the sudden bloating, and pain. If I have some sort of a partial blockage, and everything is backing up in there then this would make a lot of sense. If this is the problem, then my main worry is that it may mean surgery. Well, I think the best thing to do now, is try not to think about it and just concentrate on getting through the next two days of preparation, and the procedure and then think about the result when I have them.
I'll keep you posted.
I have done something very similar to this before, nearly ten years ago, when I had a barium enema - an x-ray to view the gut. The same kind of preparation had to be carried out. This time, I am far more nervous about the whole thing. Last time I found the procedure painful and uncomfortable (not surprising really as it's pushing something through a very inflamed area of my body, where I feel some pain most of the time anyway.
I think the reason that I feel nervous this time is because before, all I wanted to know was what was wrong with me, and by that point I didn't really care what it was, as long as I could start getting the right treatment. This time, I already know what's wrong, so that just leaves me worrying about how bad it could me. My main concern is that they might find I have a stricture. This may account for the sudden bloating, and pain. If I have some sort of a partial blockage, and everything is backing up in there then this would make a lot of sense. If this is the problem, then my main worry is that it may mean surgery. Well, I think the best thing to do now, is try not to think about it and just concentrate on getting through the next two days of preparation, and the procedure and then think about the result when I have them.
I'll keep you posted.
Thursday, 7 March 2013
Finally seen my Gastro consultant
At last I had my "new patient" appointment with my consultant. It was actually fairly productive. The hospital I had to go to in order to get an appointment so soon, rather than waiting two months, was quite a drive. It was nearly two hours of driving, and I'm very glad I used a Sat Nav as I'd never have found it. When the nurse realised how far I'd travelled she couldn't believe it. I explained that I didn't want this particular hospital as my usual clinic, but on this occasion I couldn't wait for a place closer to home! Thankfully there is a clinic just 12 miles from home, so from now on I should be able to go there. Anyway, I digress, on to the outcome of my appointment.
The consultant was actually very helpful. He spoke very fast and very quietly, which meant I had to concentrate quite hard to ensure I understood him, but apart from that he was thorough, and I felt that he listened well. He had my original diagnosis notes, and he took down some details of my crohn's following my move away from the south west. I explained that I was managing my flare up,but that it took quite some effort with regards to diet and taking my medication.
He talked about the fact that Pentasa isn't always the best drug and suggested that it may be worth thinking about infliximab. He said for now, I could up the dose of Pentasa from 3g a day to 4g a day. He also gave me a prescription for Budesonide, a corticosteroid produced to target the gut specifically rather than prednisolone which has more severe side effects. He said not to "cash in" my prescription unless I felt I really needed to.
He then proceeded to book me in for all the examinations again, as it has been ten years since we last had a look at my gut, and it would help to decide the best way to treat my flare.
Interestingly he said that they were now trying to steer clear of Barium enemas (thank goodness) due to the x-rays, and so instead I am to have a Colonoscopy (camera rather than x-ray) a gastroscopy and an MRI scan. The gastroscopy will look from the oesophagus down to the stomach. The colonoscopy will look from the rectum up through the large intestine, and the MRI will look at the bit in the middle they can't get to any other way.
He also gave me the phone number for the IBD nurse. So I now have a direct contact if anything gets worse (or better - you never know).
The waiting list for the examinations are up to around 8 weeks, so I just have to sit tight now and wait. Unfortunately for the colonoscopy I'm going to have to have a couple of days off of work. The preparation will involve taking a really strong laxative in order to empty the colon - so I can't be at work on that day! The following day, the examination will take place under sedation, which means when I come out I will be drowsy for some time after this. It's shame the waiting time isn't a little shorter, as it's only three weeks until the school breaks up and then I will be on holiday for two weeks.
I feel happier now, knowing that I have experts to call on again if I need to. Just knowing that I have support makes such a difference!
The consultant was actually very helpful. He spoke very fast and very quietly, which meant I had to concentrate quite hard to ensure I understood him, but apart from that he was thorough, and I felt that he listened well. He had my original diagnosis notes, and he took down some details of my crohn's following my move away from the south west. I explained that I was managing my flare up,but that it took quite some effort with regards to diet and taking my medication.
He talked about the fact that Pentasa isn't always the best drug and suggested that it may be worth thinking about infliximab. He said for now, I could up the dose of Pentasa from 3g a day to 4g a day. He also gave me a prescription for Budesonide, a corticosteroid produced to target the gut specifically rather than prednisolone which has more severe side effects. He said not to "cash in" my prescription unless I felt I really needed to.
He then proceeded to book me in for all the examinations again, as it has been ten years since we last had a look at my gut, and it would help to decide the best way to treat my flare.
Interestingly he said that they were now trying to steer clear of Barium enemas (thank goodness) due to the x-rays, and so instead I am to have a Colonoscopy (camera rather than x-ray) a gastroscopy and an MRI scan. The gastroscopy will look from the oesophagus down to the stomach. The colonoscopy will look from the rectum up through the large intestine, and the MRI will look at the bit in the middle they can't get to any other way.
He also gave me the phone number for the IBD nurse. So I now have a direct contact if anything gets worse (or better - you never know).
The waiting list for the examinations are up to around 8 weeks, so I just have to sit tight now and wait. Unfortunately for the colonoscopy I'm going to have to have a couple of days off of work. The preparation will involve taking a really strong laxative in order to empty the colon - so I can't be at work on that day! The following day, the examination will take place under sedation, which means when I come out I will be drowsy for some time after this. It's shame the waiting time isn't a little shorter, as it's only three weeks until the school breaks up and then I will be on holiday for two weeks.
I feel happier now, knowing that I have experts to call on again if I need to. Just knowing that I have support makes such a difference!
Wednesday, 27 February 2013
Closer appointment to see consultant GI
Well, it seems that my appointment for 30th April has been supersceded, thank goodness. Got an appointment today for March 5th. That's just 6 days time. Phew! The appointment has been made a hospital that I've never been to before. I'm not sure where it is, but I think it's a couple of hours drive away. I guess it's a small hospital that my GI consultant holds a clinic at. I don't care if it's a big or a small place really, as long as a get a chance to speak to a specialist. I'm certainly getting rather fed up with not knowing where I am with my flare.
I am taking my Pentasa three times a day. At times I feel quite well, but then quite suddenly, and I haven't quite worked out the triggerfor it, I get horrendous bloating, followed by spasms of pain the following day. Today is one of those days. I felt fine yesterday, but this evening, I am really uncomfortable and I just know that tomorrow, the pain is going to come.
It will be interesting to see wha the consultant says. These symptoms are not what I experienced when I was first diagnosed with Crohn's. I would quite like some further investigations to see where the inflammation is and its extent.
I am taking my Pentasa three times a day. At times I feel quite well, but then quite suddenly, and I haven't quite worked out the triggerfor it, I get horrendous bloating, followed by spasms of pain the following day. Today is one of those days. I felt fine yesterday, but this evening, I am really uncomfortable and I just know that tomorrow, the pain is going to come.
It will be interesting to see wha the consultant says. These symptoms are not what I experienced when I was first diagnosed with Crohn's. I would quite like some further investigations to see where the inflammation is and its extent.
Saturday, 16 February 2013
Got an appointment to see consultant
I got my letter through today for an appointment with a consultant gastroenterologist today. It's for 9:00am on 30th April 2013. Yes my friend, you read this right, today is 16 February. My appointment is over 10 weeks time!
I know the last time I saw my GP, which was 4 days ago, he was upgrading my referral to urgent. I sincerely hope that the letter I received today was already in the post when he did this, and that this isn't really an "urgent" appointment.
What worries me is that there must be people out there that are in far worse health than I am. I really hope that they are further up the waiting list!
I know the last time I saw my GP, which was 4 days ago, he was upgrading my referral to urgent. I sincerely hope that the letter I received today was already in the post when he did this, and that this isn't really an "urgent" appointment.
What worries me is that there must be people out there that are in far worse health than I am. I really hope that they are further up the waiting list!
Thursday, 14 February 2013
Quite a lot of pain today
It's amazing how we forget past experiences when it comes to pain. People often say that you forget the pain of childbirth almost immediately, and that it's an evolutionary mechanism - if you remembered what it was like then you wouldn't get pregnant again. When I was in labour with my second child I can remember saying "it hurts, I don't remember it hurting last time?!"
I haven't experienced any prolonged periods of pain with my crohn's for some years now. I think that I must have forgotten what it was like. I have been in quite a lot of pain today. I have short spasms of pain that wash over me suddenly for a few seconds and it takes my breath away. I have to stop what I'm doing momentarily as I wait for it to subside. I don't remember it being like that around the time that I was diagnosed but I'm sure if anything it must have been worse. By the time I was diagnosed, I had had diaorrhea for 6 months, lost 3 stone, and whilst working in a pub, often slipped into the cellar to quietly curl up whilst I waited for a pain to pass. I remember doing this. I also remember one particular occassion when a pain had come when I was in the middle of serving a customer. I thought I had done very well at completely ignoring it and continuing with my job, but the customer actually said to me. "Are you alright? You've gone white as a sheet."
I remember all of this, and yet I don't remember what the actual pain was like. The pain I have had today feels like the worst pain I've felt, and yet I'm sure that this is not the case.
This a very strange concept that raises many questions for me. Why is it that we do not remember the feeling of pain? Is it a trauma that we blank out because we don't want to remember it? Is it that it's a feeling that we experience in the moment, that doesn't enter the brain in the same way as, for example, a thought process. Perhaps that's it. It's a reflex response. We feel pain for example if we place our hand in a flame. If we didn't feel that pain, then we wouldn't automatically move our hand away.
What I do know, is that in a way I wish I did remember exactly what the pain in my gut was like. Then I would be better prepared when it comes on.
I haven't experienced any prolonged periods of pain with my crohn's for some years now. I think that I must have forgotten what it was like. I have been in quite a lot of pain today. I have short spasms of pain that wash over me suddenly for a few seconds and it takes my breath away. I have to stop what I'm doing momentarily as I wait for it to subside. I don't remember it being like that around the time that I was diagnosed but I'm sure if anything it must have been worse. By the time I was diagnosed, I had had diaorrhea for 6 months, lost 3 stone, and whilst working in a pub, often slipped into the cellar to quietly curl up whilst I waited for a pain to pass. I remember doing this. I also remember one particular occassion when a pain had come when I was in the middle of serving a customer. I thought I had done very well at completely ignoring it and continuing with my job, but the customer actually said to me. "Are you alright? You've gone white as a sheet."
I remember all of this, and yet I don't remember what the actual pain was like. The pain I have had today feels like the worst pain I've felt, and yet I'm sure that this is not the case.
This a very strange concept that raises many questions for me. Why is it that we do not remember the feeling of pain? Is it a trauma that we blank out because we don't want to remember it? Is it that it's a feeling that we experience in the moment, that doesn't enter the brain in the same way as, for example, a thought process. Perhaps that's it. It's a reflex response. We feel pain for example if we place our hand in a flame. If we didn't feel that pain, then we wouldn't automatically move our hand away.
What I do know, is that in a way I wish I did remember exactly what the pain in my gut was like. Then I would be better prepared when it comes on.
Wednesday, 13 February 2013
Blood tests and stuff
I have waited three days to see the Doctor about my blood test results, but it has felt like about a fortnight. I think it must be a sign that I am getting older. It is not like me at all to worry. I tend to think what will be will be.
Over those three days, all sorts of things entered my head. Maybe the results are negative, and the Doctor is going to tell me I don't have a flare and is going to cancel my referral. Maybe it's showing that I'm anaemic, perhaps it's suggesting that there is a cause for serious concern ....I even started to wonder whether the Pentasa might have some hideous side effect that nobody had told me about.
I actually felt quite nervous when I walked into the surgery. It turned out however, that it wasn't anything to be too alarmed at. My haemoglobin levels were a little low, but not dreadful. My red blood cells were a little low and my inflammatory markers were a little high.
This suggests that I am a little anaemic, which may mean I am bleeding, or I may be deficient in Iron, rather than losing blood. The inflammatory markers are showing that the Pentasa is helping, as I'm sure if I was not taking it then the inflammatory markers would be much higher (but this is speculation, and the Doctor didn't say this, it's just my interpretation). He took another blood test looking specifically for my iron levels. This would prove it was iron deficient anaemia rather than anything else.
Thankfully, the Doctor saw these results as evidence that I was having a flare, and therefore has upgraded my referral to the consultant to urgent. I guess this means, that I may get to the consultant sooner on a cancellation.
A cancellation would be good, as today I decided to try having vegetable soup, that my husband had kindly made for my lunch. This I think was a mistake. I have been very uncomfortable all day and there is distention in my upper abdomen, and loose stools. All very frustrating. Grrr!
Over those three days, all sorts of things entered my head. Maybe the results are negative, and the Doctor is going to tell me I don't have a flare and is going to cancel my referral. Maybe it's showing that I'm anaemic, perhaps it's suggesting that there is a cause for serious concern ....I even started to wonder whether the Pentasa might have some hideous side effect that nobody had told me about.
I actually felt quite nervous when I walked into the surgery. It turned out however, that it wasn't anything to be too alarmed at. My haemoglobin levels were a little low, but not dreadful. My red blood cells were a little low and my inflammatory markers were a little high.
This suggests that I am a little anaemic, which may mean I am bleeding, or I may be deficient in Iron, rather than losing blood. The inflammatory markers are showing that the Pentasa is helping, as I'm sure if I was not taking it then the inflammatory markers would be much higher (but this is speculation, and the Doctor didn't say this, it's just my interpretation). He took another blood test looking specifically for my iron levels. This would prove it was iron deficient anaemia rather than anything else.
Thankfully, the Doctor saw these results as evidence that I was having a flare, and therefore has upgraded my referral to the consultant to urgent. I guess this means, that I may get to the consultant sooner on a cancellation.
A cancellation would be good, as today I decided to try having vegetable soup, that my husband had kindly made for my lunch. This I think was a mistake. I have been very uncomfortable all day and there is distention in my upper abdomen, and loose stools. All very frustrating. Grrr!
Friday, 8 February 2013
Musings on the NHS
I often wonder how things are organised in this countries' health system. The usual opinion taken by most members of the public when they are worried about their own health is that the NHS is over worked, very inefficient and hopsital waiting lists and test results are dangerously slow.
I have mixed feelings about this. When my own health is not A1, then I want to see somebody about it, and the sooner the better. However, I also appreciate that I am not currently, and have not ever been more ill, and in more need that anybody else. There has always been somebody in greater need than me. Therefore, I have never really been impatient when waiting for an appointment, or when sitting in a queue in a waiting room, or awaiting test results. I tend to think, "no news is good news" If I have had tests done, and it takes a long time for results, that tends to be a relatively good sign in my experience. The only times when I have had phone calls telling me to make an appointment to discuss a test result, are when something has been discovered, and that usually means that currently, there is something wrong.
Now, considering in my last post I talked about the fact I was to have a blood test, and I wasn't expecting anything very much to show up on it, I was rather surprised today when I got home from work, I had two messages, from two separate offices aking me to phone them back! One was the Doctors surgery, and the other was the NHS referral management service.
I phoned the NHS referral management service first, thinking that it was probably to arrange an appointment with a consultant. I was right on this. However, when I phoned them, they took my name and date of birth and then asked if there were any days I couldn't make. I said No, as far as I knew, I could make any day I was offered. They then proceeded to tell me there currently were no appontments and they would send a letter, when they had fitted me in. This I found a little odd. Why did they ask me to call if they didn't have any space at the moment? Well, at least I know I am now in the system and when an appointment becomes available I will see a consultant.
Next I phoned my surgery. They told me that my Doctor would like me to discuss the results of my blood test. I was rather amazed at this. I only had the blood taken 36 hours ago! For a start I was expecting to wait at least a week - which could mean that the bloods went through as an urgent request - I didn't think myself as an urgent case, so why did my doctor?? (Perhaps it was just luck and the bloods arrived on a relatively quiet day in the lab ) The final thing this has left me wondering, is why did the Doctor want to discuss the results with me? I wasn't expecting them to show anything very much. Perhaps the things they were looking for would be a little raised, but not too bad. In previous experience, the only time I have been asked to make an appointment following a blood test is because something has been found. It could be that he wants to discuss the fact that the results are negative. After all we have both concluded that the symptoms I am experiencing are a crohn's flare up, and if the bloods are negative then perhaps we should be looking elsewhere....
I have arranged to see him at the beginning of next week. I am sure all will be revealed then.
I have mixed feelings about this. When my own health is not A1, then I want to see somebody about it, and the sooner the better. However, I also appreciate that I am not currently, and have not ever been more ill, and in more need that anybody else. There has always been somebody in greater need than me. Therefore, I have never really been impatient when waiting for an appointment, or when sitting in a queue in a waiting room, or awaiting test results. I tend to think, "no news is good news" If I have had tests done, and it takes a long time for results, that tends to be a relatively good sign in my experience. The only times when I have had phone calls telling me to make an appointment to discuss a test result, are when something has been discovered, and that usually means that currently, there is something wrong.
Now, considering in my last post I talked about the fact I was to have a blood test, and I wasn't expecting anything very much to show up on it, I was rather surprised today when I got home from work, I had two messages, from two separate offices aking me to phone them back! One was the Doctors surgery, and the other was the NHS referral management service.
I phoned the NHS referral management service first, thinking that it was probably to arrange an appointment with a consultant. I was right on this. However, when I phoned them, they took my name and date of birth and then asked if there were any days I couldn't make. I said No, as far as I knew, I could make any day I was offered. They then proceeded to tell me there currently were no appontments and they would send a letter, when they had fitted me in. This I found a little odd. Why did they ask me to call if they didn't have any space at the moment? Well, at least I know I am now in the system and when an appointment becomes available I will see a consultant.
Next I phoned my surgery. They told me that my Doctor would like me to discuss the results of my blood test. I was rather amazed at this. I only had the blood taken 36 hours ago! For a start I was expecting to wait at least a week - which could mean that the bloods went through as an urgent request - I didn't think myself as an urgent case, so why did my doctor?? (Perhaps it was just luck and the bloods arrived on a relatively quiet day in the lab ) The final thing this has left me wondering, is why did the Doctor want to discuss the results with me? I wasn't expecting them to show anything very much. Perhaps the things they were looking for would be a little raised, but not too bad. In previous experience, the only time I have been asked to make an appointment following a blood test is because something has been found. It could be that he wants to discuss the fact that the results are negative. After all we have both concluded that the symptoms I am experiencing are a crohn's flare up, and if the bloods are negative then perhaps we should be looking elsewhere....
I have arranged to see him at the beginning of next week. I am sure all will be revealed then.
Wednesday, 6 February 2013
Successful Doctor's trip
I had my appointment with my GP yesterday. I think I can safely say that it was successful, which is good!
I went in and told hin that the problems I had been experiencing with my gut hadn't really settled down, and that I am more or less ok, as long as I only eat white things! That's white fish, white bread, white rice, e.t.c.
I told him, I was ok, but that this was hardly a balanced diet.
As I have recently moved back to Cornwall having spent 8 years in a different county, he only had my notes from my original diagnosis, and not the years in between, so I had to fill him in on these details. It was a fairly comprehensive consultation really.
He has asked me to arrange blood tests for inflammatory markers, which would help to confirm that I am experiencing a flare up, and he dictated a letter to the consultant onto his dictophone, checking with me that he had my details and symptoms correct.
He also decided that it was best for me to have an appointment with the consultant once the blood test results had been received.
Now it may seem odd, but I'm a little worried that the inflammatory markers in the blood tests wont show up as high! I am sure that I am experiencing a flare up, however, I have been managing the disease through eating only low residue foods. This seems to be working very well, and all the time I stick to a low residue diet, then I am pain free, and my bowel movements are just once a day. I no longer have any distention to speak of either. Whilst this is all brilliant, I don't believe it can be good for my health long term. I can't believe that I am receiving enough vitamins and minerals on such a diet, and am concerned that I may end up with deficiences. This is why I would like to see a consultant; so that I can discuss whether diet is the best form or treatment, and maybe get referred to a dietician, so that I can properly work out trigger foods and hopefully end up with a relatively varied diet that will keep the crohn's under control until, with any luck, it burns itself out.
So, as I my blood test was booked for 48 hours time, I was faced with the decision as to whether I continued eating my "white diet" or I tried to invoke my flare up in order to prove that it is indeed a flare up through the blood tests by eating normally. My concern is that if my blood tests are normal, then either I will not even get a consultants appointment, or that I do, but the consultant looks at the tests and simply decided that the current treatment I am on is satisfactory and nothing further needs to be done.
I decided to take the opportunity to eat a more varied diet for a couple of days! It has been nice to finally have some variety, but I am feeling a little uncomfortable today. Just 24 hours and my bowels are already a little more loose, I have an uncomfortable feelings in my adomen of a cross between stitch, the need to pass wind or open my bowel, and a bit of a bloating feeling. Thankfully I am not in a load of pain. As soon as my blood tests have been taken, I think I will go back to a low residue diet until I have seen the consultant!
I went in and told hin that the problems I had been experiencing with my gut hadn't really settled down, and that I am more or less ok, as long as I only eat white things! That's white fish, white bread, white rice, e.t.c.
I told him, I was ok, but that this was hardly a balanced diet.
As I have recently moved back to Cornwall having spent 8 years in a different county, he only had my notes from my original diagnosis, and not the years in between, so I had to fill him in on these details. It was a fairly comprehensive consultation really.
He has asked me to arrange blood tests for inflammatory markers, which would help to confirm that I am experiencing a flare up, and he dictated a letter to the consultant onto his dictophone, checking with me that he had my details and symptoms correct.
He also decided that it was best for me to have an appointment with the consultant once the blood test results had been received.
Now it may seem odd, but I'm a little worried that the inflammatory markers in the blood tests wont show up as high! I am sure that I am experiencing a flare up, however, I have been managing the disease through eating only low residue foods. This seems to be working very well, and all the time I stick to a low residue diet, then I am pain free, and my bowel movements are just once a day. I no longer have any distention to speak of either. Whilst this is all brilliant, I don't believe it can be good for my health long term. I can't believe that I am receiving enough vitamins and minerals on such a diet, and am concerned that I may end up with deficiences. This is why I would like to see a consultant; so that I can discuss whether diet is the best form or treatment, and maybe get referred to a dietician, so that I can properly work out trigger foods and hopefully end up with a relatively varied diet that will keep the crohn's under control until, with any luck, it burns itself out.
So, as I my blood test was booked for 48 hours time, I was faced with the decision as to whether I continued eating my "white diet" or I tried to invoke my flare up in order to prove that it is indeed a flare up through the blood tests by eating normally. My concern is that if my blood tests are normal, then either I will not even get a consultants appointment, or that I do, but the consultant looks at the tests and simply decided that the current treatment I am on is satisfactory and nothing further needs to be done.
I decided to take the opportunity to eat a more varied diet for a couple of days! It has been nice to finally have some variety, but I am feeling a little uncomfortable today. Just 24 hours and my bowels are already a little more loose, I have an uncomfortable feelings in my adomen of a cross between stitch, the need to pass wind or open my bowel, and a bit of a bloating feeling. Thankfully I am not in a load of pain. As soon as my blood tests have been taken, I think I will go back to a low residue diet until I have seen the consultant!
Wednesday, 30 January 2013
Life after Crohn's
Just thought I'd write a positive little post about my life since being diagnosed with CD.
I was 21 when I was diagnosed. At the time it felt fairly devastating. I knew very little about Inflammatory Bowel Disease. It was the one thing the whole family was hoping it wasn't. I think it's fair to say that to begin with I got a little depressed about it. I read the leaflets supplied by the excellent charity NACC. (Web address www.nacc.org.uk for anybody who hasn't come across it) To begin with all I saw was negatives. A lot of websites and forums used phrases like "quality of life". This immediately conjurred up images in my head of people laid out in hospital beds with little hope.
One night, as I lay in bed trying to get to sleep, a change occurred in my attitude. I can't tell you why, or how it happened, it just did. I made the decision that I was going to stop feeling sorry for myself and get on with it. A very wise friend of mine said to me when I told her that I'd been diagnosed with CD: "Remember, you control it. It doesn't control you." She hit the nail on the head.
Now one little caviat I will give is that I suffer with mild to moderate crohn's. I know many people out there have had and are having it far worse. But there is hope. What I have found both with myself, and hearing other peoples stories is that this illness can definately make you more determined. It is a condition that has a number of different forms of treatment. People go in and out of remission, and with a bit of luck you can go into remission for very extended periods of time, and the disease appears to burn itself out.
In the time I have known that I have CD, I have lead a very normal life. I have got married, I have two wonderful little girls that are full of life and mischief. I have carved a sucessful career as an analytical scientist ( which I have recently given up in favour of working in a school - but that's another story - you can see my other blog "the strange world of science and education" for further details!). I have many interests and hobbies from knitting, to surfing. The only thing I can think of that I have had to give up due to this disease is donating blood! Which by the way I was very upset about at the time as I felt that I was just the type of person having an illness such as IBD, who would some day be in need of a blood transfusion. The least I could do is donate some when I was well!
I guess what I'm trying to say, is exactly what my friend told me 9 years ago: "You control it. It doesn't control you." If you always remember that, you can't go too far wrong. Keep happy :-)
I was 21 when I was diagnosed. At the time it felt fairly devastating. I knew very little about Inflammatory Bowel Disease. It was the one thing the whole family was hoping it wasn't. I think it's fair to say that to begin with I got a little depressed about it. I read the leaflets supplied by the excellent charity NACC. (Web address www.nacc.org.uk for anybody who hasn't come across it) To begin with all I saw was negatives. A lot of websites and forums used phrases like "quality of life". This immediately conjurred up images in my head of people laid out in hospital beds with little hope.
One night, as I lay in bed trying to get to sleep, a change occurred in my attitude. I can't tell you why, or how it happened, it just did. I made the decision that I was going to stop feeling sorry for myself and get on with it. A very wise friend of mine said to me when I told her that I'd been diagnosed with CD: "Remember, you control it. It doesn't control you." She hit the nail on the head.
Now one little caviat I will give is that I suffer with mild to moderate crohn's. I know many people out there have had and are having it far worse. But there is hope. What I have found both with myself, and hearing other peoples stories is that this illness can definately make you more determined. It is a condition that has a number of different forms of treatment. People go in and out of remission, and with a bit of luck you can go into remission for very extended periods of time, and the disease appears to burn itself out.
In the time I have known that I have CD, I have lead a very normal life. I have got married, I have two wonderful little girls that are full of life and mischief. I have carved a sucessful career as an analytical scientist ( which I have recently given up in favour of working in a school - but that's another story - you can see my other blog "the strange world of science and education" for further details!). I have many interests and hobbies from knitting, to surfing. The only thing I can think of that I have had to give up due to this disease is donating blood! Which by the way I was very upset about at the time as I felt that I was just the type of person having an illness such as IBD, who would some day be in need of a blood transfusion. The least I could do is donate some when I was well!
I guess what I'm trying to say, is exactly what my friend told me 9 years ago: "You control it. It doesn't control you." If you always remember that, you can't go too far wrong. Keep happy :-)
Thursday, 24 January 2013
In active flare up
My first few posts have been about past history. Just thought I'd write a little about the present day.
I was put declared as being in remission by my consultant at Addenbrookes hospital, Cambridge about 18 months ago (yey!)
About 5 months ago I moved from Cambridgeshire back down to my home County of Cornwall. I am currently living with my Parents in the family home - along with my husband and two young girls (see my other blog "diary of a boomerang kid" for more details).
Coming on for 2 months ago I started to experience extreme bloating and very uncomfortable pains in my upper abdomen - like sever indigestion. My Dad also experienced the same thing, and it seemed we had both picked up a stomach bug. The pains in the abdomen, then moved on to frequent and urgent diarrhoea. I immediately started to worry that I may be experiencing a flare up, but was comforted by the fact that my Dad had the same symptoms and with luck we would both get over it. Well, my Dad took a full week to recover, and I had actually got to the point of telling him he should go and see his Doctor as a week was too long for a simple bug. The day after this advice, he was better. For me however, it has been a little different. My symptoms are still there. If I stop eating - or at least eat nothing but soup for 24 hours, then the pain and diarrheoa disappear. As soon as I begin eating a balanced diet, then severe pain in my upper abdomen and a distended, uncomfortable gut, ow I do, and my Doctor knows I do, and yet I am not under a consultant. I know that when I eventually see the doctor, he will then have to write a referral letter. It could easily be another month before I finally get to see a consultant.
I daren't eat anything but white stuff, as I do not want to exacerbate the flare. I should count myself lucky really as I am able to manage the condition at the moment, but I am getting rather bored of eating plain, uninteresting food! Well, I will keep you posted on my current flare, and update if anything changes, or with what the consutant says - if I ever get one!
I was put declared as being in remission by my consultant at Addenbrookes hospital, Cambridge about 18 months ago (yey!)
About 5 months ago I moved from Cambridgeshire back down to my home County of Cornwall. I am currently living with my Parents in the family home - along with my husband and two young girls (see my other blog "diary of a boomerang kid" for more details).
Coming on for 2 months ago I started to experience extreme bloating and very uncomfortable pains in my upper abdomen - like sever indigestion. My Dad also experienced the same thing, and it seemed we had both picked up a stomach bug. The pains in the abdomen, then moved on to frequent and urgent diarrhoea. I immediately started to worry that I may be experiencing a flare up, but was comforted by the fact that my Dad had the same symptoms and with luck we would both get over it. Well, my Dad took a full week to recover, and I had actually got to the point of telling him he should go and see his Doctor as a week was too long for a simple bug. The day after this advice, he was better. For me however, it has been a little different. My symptoms are still there. If I stop eating - or at least eat nothing but soup for 24 hours, then the pain and diarrheoa disappear. As soon as I begin eating a balanced diet, then severe pain in my upper abdomen and a distended, uncomfortable gut, ow I do, and my Doctor knows I do, and yet I am not under a consultant. I know that when I eventually see the doctor, he will then have to write a referral letter. It could easily be another month before I finally get to see a consultant.
I daren't eat anything but white stuff, as I do not want to exacerbate the flare. I should count myself lucky really as I am able to manage the condition at the moment, but I am getting rather bored of eating plain, uninteresting food! Well, I will keep you posted on my current flare, and update if anything changes, or with what the consutant says - if I ever get one!
Wednesday, 23 January 2013
The embarassing problem with flatulence
Everybody passes wind. It is a natural bodily function, and anybody who says they don't do it is lying. Some people may not do it in public, everybody does it in their sleep, and some do it more than others, but we all do it!
So why then, is it so embarassing when it happens? The truth of the matter is that generally it smells. But here's the thing, some smell worse than others don't they? It is not simply the production of methane, produced as food breaks down in the gut. Along with it there are other particles with a far more repulsive smell.
I find that when I am in an active flare up, I could definately win an olympic gold for farting! I have a number of little anecdotes which may lighten the mood a little for those of us that find the subject of Inflammatory Bowel Disease nothing but doom and gloom.
Often I do my best not to release the obnoxious fumes which constantly build up in my gut when anybody else is around. More often than not, I find it happens all on it's own!
Sometimes I have to be content in managing to get to a deserted corridor before allowing the cloud of stink.
So why then, is it so embarassing when it happens? The truth of the matter is that generally it smells. But here's the thing, some smell worse than others don't they? It is not simply the production of methane, produced as food breaks down in the gut. Along with it there are other particles with a far more repulsive smell.
I find that when I am in an active flare up, I could definately win an olympic gold for farting! I have a number of little anecdotes which may lighten the mood a little for those of us that find the subject of Inflammatory Bowel Disease nothing but doom and gloom.
Often I do my best not to release the obnoxious fumes which constantly build up in my gut when anybody else is around. More often than not, I find it happens all on it's own!
Sometimes I have to be content in managing to get to a deserted corridor before allowing the cloud of stink.
Monday, 21 January 2013
My story
I always thought of myself as a pretty healthy kid. I hardly ever had time off from school, and the worse I ever got was a 48 hour tummy bug or a heavy cold.
My first symptoms of IBD appeared when I was in the last term of my final year at University. Loose bowels and tummy cramps. I put it down to a dodgy kebab at first. But when it didn't stop I went to see my GP. At first I was asked if I had been abroad recently and then told to give a sample. I did this, and when the sample came back clear, I was told to take peppermint.
When symptoms still didn't go it was suggested that I had irritable bowel disease - probably due to stress. I was prescribed colpermin.
More and more symptoms began to appear. Diarrhoea, painful stomach cramps, loss of weight, sleeplessness, partial incontinence. My mouth was often sore and full of ulcers, and there was a weird red lump on my leg that looked like an insect bite. Symptoms all too familiar to anybody with Crohns' Disease.
By this point I had become a regular at the Doctors'. I knew that something was very wrong, and at the surgery the help I received was rather mixed. I am still very greatful however, that out of the whole practice, one of the Doctors saw my symptoms for what they were. He suggested Inflammatory Bowel Disease and referred me to a Gastroenterologist.
By the time I started having investigation procedures I was incredibly thin. The first procedure - a Barium Enema - gave a diagnosis of Colonic Crohns' Disease. I still remember receiving the diagnosis from the consultant. It was the one the whole family had been dreading. We knew someone locally who had it, and she was in and out of surgery all the time.
Somehow a weight lifted from me as soon as I knew what it was. Finally I could start getting the right treatment, and do some reading to get some answers. Funnily enough the best answers I've had, I've only just received in the past two weeks - from a book:
My diagnosis came 10 years ago, and since then I have had bouts of active disease interspersed with fairly good periods of remission. The disease itself has been fairly manageable, but I seem to have been very good at getting the periferral symptoms of the disease.
It is for this reason that I have begun this blog. I count myself very lucky as so far my condition has been what I would class as mild, when I compare it to others that I read about on the net. However, when some, slightly rarer symptom of the condition pops up, it is frustrating that it takes so long to get the correct treatment. I figure if I post my experiences on the web - someone else out there, looking for answers may stumble across what has happened to me, and is able to go to their Doctor or Consultant in plenty of time to get the correct treatment.
My first symptoms of IBD appeared when I was in the last term of my final year at University. Loose bowels and tummy cramps. I put it down to a dodgy kebab at first. But when it didn't stop I went to see my GP. At first I was asked if I had been abroad recently and then told to give a sample. I did this, and when the sample came back clear, I was told to take peppermint.
When symptoms still didn't go it was suggested that I had irritable bowel disease - probably due to stress. I was prescribed colpermin.
More and more symptoms began to appear. Diarrhoea, painful stomach cramps, loss of weight, sleeplessness, partial incontinence. My mouth was often sore and full of ulcers, and there was a weird red lump on my leg that looked like an insect bite. Symptoms all too familiar to anybody with Crohns' Disease.
By this point I had become a regular at the Doctors'. I knew that something was very wrong, and at the surgery the help I received was rather mixed. I am still very greatful however, that out of the whole practice, one of the Doctors saw my symptoms for what they were. He suggested Inflammatory Bowel Disease and referred me to a Gastroenterologist.
By the time I started having investigation procedures I was incredibly thin. The first procedure - a Barium Enema - gave a diagnosis of Colonic Crohns' Disease. I still remember receiving the diagnosis from the consultant. It was the one the whole family had been dreading. We knew someone locally who had it, and she was in and out of surgery all the time.
Somehow a weight lifted from me as soon as I knew what it was. Finally I could start getting the right treatment, and do some reading to get some answers. Funnily enough the best answers I've had, I've only just received in the past two weeks - from a book:
My diagnosis came 10 years ago, and since then I have had bouts of active disease interspersed with fairly good periods of remission. The disease itself has been fairly manageable, but I seem to have been very good at getting the periferral symptoms of the disease.
It is for this reason that I have begun this blog. I count myself very lucky as so far my condition has been what I would class as mild, when I compare it to others that I read about on the net. However, when some, slightly rarer symptom of the condition pops up, it is frustrating that it takes so long to get the correct treatment. I figure if I post my experiences on the web - someone else out there, looking for answers may stumble across what has happened to me, and is able to go to their Doctor or Consultant in plenty of time to get the correct treatment.
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