- Joined
- Aug 27, 2010
- Messages
- 10
Is this Crohns Disease?
Hi folks,
I've registered today to get some advice as things are getting pretty desperate, not for me, but for my Fiancé, who I love very much. :hug:
I think it would help if I give a run down of what has occurred over the past year and hopefully that can put you all in the picture. Sorry if there is too much of a read below.
So it's August 2010, this thing started around July 2009, when Lewis was 28. He had recently stopped smoking, he was a heavy smoker of about 20 a day and to be fair his diet wasn't great either, although these things began to improve when we moved in together Jan 2009. He was experiencing pain in his shoulder which we think was due to a new desk job. Anyway the result of this was that he was taking a lot of Ibroprofen as a pain killer. We believe it was this that lead to his initial problems, the stomach pains started late July 2009, he was doubled over on the sofa, extreme nausea and a lot of bowl movements, not watery, but not fully formed either. The pain would last a couple of days and then improve for about a week, he described it to his Doctor as a gnawing, burning feeling in his stomach. He was immediately put on Omeprazole to reduce the level of acid in his stomach. This pattern repeated itself for about a month, until his Doctor gave him a blood test and diagnosed him as positive for H Pylori infection. He was treated with "triple therapy" anti-biotics in November. During the week treatment and 2 weeks after that he felt a great improvement but immediately after this the intermittent symptoms started up again. We were told it could be the use of the pain killers that altered the stomach environment causing the H Pylori infection.
He was told in January he would had to take Omeprazole for a month and then nothing for a month, following this if the symptoms were still there he was to take Omeprazole for another month before he would be referred to the hospital for a Urea Breath test to see if the infection was gone. By the time he got his appointment it was May and his symptoms were showing up with much more regularity, between February and his appointment in May he was continuing with the Omeprazole and taking 6 Domperidone nausea tablets a day to stop him from being physically sick, especially in the mornings. He was at this point not able to work a full week, managing 3 - 4 days at best before his symptoms appeared again. He could not eat anything greasy or spicy. We tried all sorts of supplements, mastic gum, DHL Liquorice, Manuka Honey, Pre and pro-biotics, e.t.c e.t.c but nothing really helped.
When we got the results in May they were negative, the H-Pylori was completely gone. We were in all honesty devastated because despite the fact the infection was gone, we knew there was now no hope of a quick diagnosis. Lewis started to wonder if he was causing the whole thing with his mind, which of course we know now isn't possible. Lewis' at this point, well his symptoms were so bad the Doctor referred him to the hospital for an Endoscopy and Ultrasound examination. At this point we were convinced he must have an ulcer caused by the H-Pylori infection. The results came back showing no ulcers, only severe gastritis, Lewis stomach lining was badly inflamed. The Ultrasound came back completely normal, again we were devastated. (it is so weird that we were put n a position where we were hoping there was something wrong with him!)
Around this time Lewis sent blood off for a York food allergy test, it came back with mild reactions to cows milk, wheat and egg. We took him off of these foods and this did seem to help temporarily. We still continue with this diet as it helps with his bloating. He had already been tested by his Doctor for Celiac disease, but he was told he didn't have it.
Following these results the Gastroenterologist suggested tablets for the maintenance of IBS, claiming Lewis' problem was "functional" and therefore the cause was not what was being treated. (i.e they didn't have a diagnosis!!) By this point Lewis was being sick in the shower every morning, the only saving grace was that the frequency of his bathroom trips did reduce a little with this IBS tablet treatment. Although the "stitch" feeling in areas of his stomach and back continued as did the constant nausea, accompanied by lethargy. It didn't really look like IBS to me. He was also now experiencing pain in the bowl which had not been a major symptom before. A friend of ours had been recently diagnosed as lactose intolerant, and so I demanded a lactose intolerance test for Lewis and was told they would have to do other stool tests first. (dealing with the NHS in this country can be a nightmare)
It was at this point Lewis got his Stool Calprotectin test, his score was 177, we were told normal was 0 - 50, this signified an significantly inflamed bowl. 3 weeks later he was asked to do another test, it was at this point down to 88, although Lewis was still having blood accompanying his stools, (not lots but some) (at this point, Lewis was on 10 tablets a day, 6 nausea tablets, 1 acid reducing tablet and 3 IBS tablets)
That takes us up to just over a month ago, Lewis' doctor prescribed a foam enema twice a day, took Lewis off the IBS tablets and nausea tablets and changed the type of acid reduction tablet. Lewis reacted badly, he was being physically sick in the morning and in the evenings and so only lasted 2 days off the nausea tablets. Within a week he was back on all his old medications. Although the foam enemas (pred) did help reduce the pain in his bowel, but he was only to do this treatment for 2 weeks.
He has been off work now for 4 weeks, the longest / most severe bout he has had of this. In addition with one of his recent bowel movements was about half a cup of blood. He still gets some blood in with his stool on a daily basis. He is now experiencing major itching and burning around the rectal area and up inside it, he has also formed a skin tag. The Doctor has mentioned IBD and is in the process of trying to arrange a Colonoscopy for Lewis at some point within the next 3 weeks. He has given him a new lower dose of foam enema. (the leaflet warns about mania and depression, that should be fun!!) Lewis still has severe nausea every day, although he is managing to eat, despite his appetite being low, he hasn't lost too much weight yet luckily. He can't eat anything without feeling awful afterwards and finds it uncomfortable going to the toilet, although this is only once or twice a day. He is always bloated and gassy and often gets pain in his bowl / stomach when bending. His diet has had to be stripped back as so much that he eats makes him feel really worse. He is just about to run out of sick pay with his employer and we are starting to worry if we'll ever get a diagnosis. I know a year may not seem like a long time to some people, but for us, especially Lewis the last 12 months have seemed more like 4 years.
At this point we are in a strange position, of course we do not want a diagnosis of Crohns, but at the same time we really do, at least he could start getting the right treatment which could result in remission and perhaps we'll get our normal lives back.
I've done A LOT of internet research over the last year and that is always a good and a bad thing, it can open up doors of possible diagnosis but also take you down false avenues, like when we were convinced Lewis had a massive ulcer in his stomach. :yfaint:
So I guess I would just like to ask all of you, with your huge amount of collective experience, does this sound like IBD / Crohns to you? :confused2:
Thanks for reading, I appreciate it guys, and advise is greatly appreciated.:ghug:
Hi folks,
I've registered today to get some advice as things are getting pretty desperate, not for me, but for my Fiancé, who I love very much. :hug:
I think it would help if I give a run down of what has occurred over the past year and hopefully that can put you all in the picture. Sorry if there is too much of a read below.
So it's August 2010, this thing started around July 2009, when Lewis was 28. He had recently stopped smoking, he was a heavy smoker of about 20 a day and to be fair his diet wasn't great either, although these things began to improve when we moved in together Jan 2009. He was experiencing pain in his shoulder which we think was due to a new desk job. Anyway the result of this was that he was taking a lot of Ibroprofen as a pain killer. We believe it was this that lead to his initial problems, the stomach pains started late July 2009, he was doubled over on the sofa, extreme nausea and a lot of bowl movements, not watery, but not fully formed either. The pain would last a couple of days and then improve for about a week, he described it to his Doctor as a gnawing, burning feeling in his stomach. He was immediately put on Omeprazole to reduce the level of acid in his stomach. This pattern repeated itself for about a month, until his Doctor gave him a blood test and diagnosed him as positive for H Pylori infection. He was treated with "triple therapy" anti-biotics in November. During the week treatment and 2 weeks after that he felt a great improvement but immediately after this the intermittent symptoms started up again. We were told it could be the use of the pain killers that altered the stomach environment causing the H Pylori infection.
He was told in January he would had to take Omeprazole for a month and then nothing for a month, following this if the symptoms were still there he was to take Omeprazole for another month before he would be referred to the hospital for a Urea Breath test to see if the infection was gone. By the time he got his appointment it was May and his symptoms were showing up with much more regularity, between February and his appointment in May he was continuing with the Omeprazole and taking 6 Domperidone nausea tablets a day to stop him from being physically sick, especially in the mornings. He was at this point not able to work a full week, managing 3 - 4 days at best before his symptoms appeared again. He could not eat anything greasy or spicy. We tried all sorts of supplements, mastic gum, DHL Liquorice, Manuka Honey, Pre and pro-biotics, e.t.c e.t.c but nothing really helped.
When we got the results in May they were negative, the H-Pylori was completely gone. We were in all honesty devastated because despite the fact the infection was gone, we knew there was now no hope of a quick diagnosis. Lewis started to wonder if he was causing the whole thing with his mind, which of course we know now isn't possible. Lewis' at this point, well his symptoms were so bad the Doctor referred him to the hospital for an Endoscopy and Ultrasound examination. At this point we were convinced he must have an ulcer caused by the H-Pylori infection. The results came back showing no ulcers, only severe gastritis, Lewis stomach lining was badly inflamed. The Ultrasound came back completely normal, again we were devastated. (it is so weird that we were put n a position where we were hoping there was something wrong with him!)
Around this time Lewis sent blood off for a York food allergy test, it came back with mild reactions to cows milk, wheat and egg. We took him off of these foods and this did seem to help temporarily. We still continue with this diet as it helps with his bloating. He had already been tested by his Doctor for Celiac disease, but he was told he didn't have it.
Following these results the Gastroenterologist suggested tablets for the maintenance of IBS, claiming Lewis' problem was "functional" and therefore the cause was not what was being treated. (i.e they didn't have a diagnosis!!) By this point Lewis was being sick in the shower every morning, the only saving grace was that the frequency of his bathroom trips did reduce a little with this IBS tablet treatment. Although the "stitch" feeling in areas of his stomach and back continued as did the constant nausea, accompanied by lethargy. It didn't really look like IBS to me. He was also now experiencing pain in the bowl which had not been a major symptom before. A friend of ours had been recently diagnosed as lactose intolerant, and so I demanded a lactose intolerance test for Lewis and was told they would have to do other stool tests first. (dealing with the NHS in this country can be a nightmare)
It was at this point Lewis got his Stool Calprotectin test, his score was 177, we were told normal was 0 - 50, this signified an significantly inflamed bowl. 3 weeks later he was asked to do another test, it was at this point down to 88, although Lewis was still having blood accompanying his stools, (not lots but some) (at this point, Lewis was on 10 tablets a day, 6 nausea tablets, 1 acid reducing tablet and 3 IBS tablets)
That takes us up to just over a month ago, Lewis' doctor prescribed a foam enema twice a day, took Lewis off the IBS tablets and nausea tablets and changed the type of acid reduction tablet. Lewis reacted badly, he was being physically sick in the morning and in the evenings and so only lasted 2 days off the nausea tablets. Within a week he was back on all his old medications. Although the foam enemas (pred) did help reduce the pain in his bowel, but he was only to do this treatment for 2 weeks.
He has been off work now for 4 weeks, the longest / most severe bout he has had of this. In addition with one of his recent bowel movements was about half a cup of blood. He still gets some blood in with his stool on a daily basis. He is now experiencing major itching and burning around the rectal area and up inside it, he has also formed a skin tag. The Doctor has mentioned IBD and is in the process of trying to arrange a Colonoscopy for Lewis at some point within the next 3 weeks. He has given him a new lower dose of foam enema. (the leaflet warns about mania and depression, that should be fun!!) Lewis still has severe nausea every day, although he is managing to eat, despite his appetite being low, he hasn't lost too much weight yet luckily. He can't eat anything without feeling awful afterwards and finds it uncomfortable going to the toilet, although this is only once or twice a day. He is always bloated and gassy and often gets pain in his bowl / stomach when bending. His diet has had to be stripped back as so much that he eats makes him feel really worse. He is just about to run out of sick pay with his employer and we are starting to worry if we'll ever get a diagnosis. I know a year may not seem like a long time to some people, but for us, especially Lewis the last 12 months have seemed more like 4 years.
At this point we are in a strange position, of course we do not want a diagnosis of Crohns, but at the same time we really do, at least he could start getting the right treatment which could result in remission and perhaps we'll get our normal lives back.
I've done A LOT of internet research over the last year and that is always a good and a bad thing, it can open up doors of possible diagnosis but also take you down false avenues, like when we were convinced Lewis had a massive ulcer in his stomach. :yfaint:
So I guess I would just like to ask all of you, with your huge amount of collective experience, does this sound like IBD / Crohns to you? :confused2:
Thanks for reading, I appreciate it guys, and advise is greatly appreciated.:ghug:
