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.
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