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!
Tuesday, 30 July 2013
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.
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