Crohn's sufferer.

Bun

Hi Folks.. I am a Crohn's sufferer that was diagnosed in November 09.. Before I was diagnosed my symptoms were total lack of energy, tired all the time to the point where I would not look forward to going out or doing anything at the weekends but stay in and watch dvds.. I had pretty bad muscle pain especially in my thighs & sides of my bum & knees sometimes being so stiff and sore I could hardly walk and at night if I lay on one side for too long I would get a pain all down the leg I was lying on.. I would get a pain in my side every once in a while which wasnt that bad but sometimes every few months it would be so bad I would have to stay off work and I would get the shivers & sweats.. This started roughly in November 07 so I had two years of not knowing what was wrong with me until I was finally diagnosed.. The first thing I had done was a Barium Follow Through which showed up the early stages of Crohn's Disease.. after that I had a Colonoscopy but they couldnt get the tube into my Terminal Ileum (part of my bowel) so the results were inconclusive.. I then went into hospital (Vincents) and had an MRI scan which also showed up Crohn's Disease.. I was told I had roughly 10cm of bowel damage (which apparenty isn't that bad considering the length of your bowel can supposedly stretch across a tennis court??).. They then put me on Imuran (125mg) which is what I take every day.. I felt absolutely fantastic for the first two months and now I'm back to being absolutely wrecked with no energy.. Can anyone give me any advice on being on Imuran or has anyone else experienced the same thing.. You see somebody once told me that the only way to diagnose Crohn's for sure is for a surgeon to go in and take a sample of your bowel away and sent it to a lab for testing and that will officially confirm that you have it.. Now that wasn't done in my case and I'm just wondering is there any possibility that I could have been misdiagnosed or did other people experience the same thing when they went on Imuran?

bigbadcon

I have very mild Crohns and am taking the following..

Imuran 150mg a day (3 tabs)
Entocort 9 mg (3 tabs)
Spasmonal 3 a day
Calcuim Supplements

Im on Imuran about 8 months by the way

To be honest I havent found any effects good or bad from taking all these.

Sometimes I feel like I should just stop taking them because they are lowering my immune system and dont seem to do anything for my problem.


Ive also been perscribed the following that didnt work ...

Pentasa
Colofac
Fibogel Sachets
Movical Sachets
Prednisolone
Spasmonal


Loads more I cant even remember.

2 colonoscopys ,2 endoscopys, 2 barium meals, 2 Pill cams, and a couple of xrays later and im none the wiser.


They were recently thinking of putting me on Biological Injections Anti -TNF but my crohns isnt severe enough.

They are telling me now that my Crohns is under control but the symptoms im experiencing are from IBS (which there is no cure for)

Getting sick of paying €100 a month for medication that doesnt work but you have to try what they are suggesting to you so they can tick it off the list and then maybe move you on to something different.

If you are experiencing strange side effect from Imuran I would ring them up and tell them and get another appointment.


Maybe ask about the Anti TNF. From what they told me it works in about 60% of the cases but will considerably lower your immune system so its kind of a last resort (before surgery).

Feel free to PM me if you like..

Richard Dower

Bun wrote: »

Hi Folks.. I am a Crohn's sufferer that was diagnosed in November 09.. Before I was diagnosed my symptoms were total lack of energy, tired all the time to the point where I would not look forward to going out or doing anything at the weekends but stay in and watch dvds.. I had pretty bad muscle pain especially in my thighs & sides of my bum & knees sometimes being so stiff and sore I could hardly walk and at night if I lay on one side for too long I would get a pain all down the leg I was lying on.. I would get a pain in my side every once in a while which wasnt that bad but sometimes every few months it would be so bad I would have to stay off work and I would get the shivers & sweats.. This started roughly in November 07 so I had two years of not knowing what was wrong with me until I was finally diagnosed.. The first thing I had done was a Barium Follow Through which showed up the early stages of Crohn's Disease.. after that I had a Colonoscopy but they couldnt get the tube into my Terminal Ileum (part of my bowel) so the results were inconclusive.. I then went into hospital (Vincents) and had an MRI scan which also showed up Crohn's Disease.. I was told I had roughly 10cm of bowel damage (which apparenty isn't that bad considering the length of your bowel can supposedly stretch across a tennis court??).. They then put me on Imuran (125mg) which is what I take every day.. I felt absolutely fantastic for the first two months and now I'm back to being absolutely wrecked with no energy.. Can anyone give me any advice on being on Imuran or has anyone else experienced the same thing.. You see somebody once told me that the only way to diagnose Crohn's for sure is for a surgeon to go in and take a sample of your bowel away and sent it to a lab for testing and that will officially confirm that you have it.. Now that wasn't done in my case and I'm just wondering is there any possibility that I could have been misdiagnosed or did other people experience the same thing when they went on Imuran?

This is true, they take sections to Histology which will 100% confirm if it's Crohn's. Imuran is an immuno-suppressant....lathargy and weakness can be related to a depressed immume system.

Normally they use Imuran in conjunction with other meds, such as Pentasa or Deltacortril. Your bloods need to be done regular, you could be vitamin or mineral defficient, B12 injections are a must for Crohn's as is a good multivitamin.

Supplements help, your intestine is damaged and not absorbing all the neutriants thus liquid supplements help alot. Ensure/Build up etc.

I'm surprised if you had surgery they didn't send slides to Histology, unless the other diagnostics confirmed.

orlanemo

Hey Bun,

Sorry to hear about your trouble. Im a UC sufferer and I'm on Imuran.

Bun wrote: »

I had a Colonoscopy but they couldnt get the tube into my Terminal Ileum (part of my bowel) so the results were inconclusive..

They have gotten into your large bowel. They could not advance further. I am assuming that they took biopsies here which would have confirmed inflammation and your other tests you mentioned. This is what the reference to the surgeon taking pieces of your bowel away is. But it is done while the scope is inside Getting into you Ileum would have helped confirm Crohn's but from the sounds of your treatment (imuran) you have some form of Inflammatory Bowel Disease (IBD). Pathologically Ulcerative Colitis and Crohn's are different but in treatment they are almost the same.

I think the main problem for you is the lack of information you have been given. If you do not have another visit to your specialist lined up go to your GP. The GP should have a copy of your results from all your tests. If he cannot explain them sufficiently then make another appointment with your specialist. When you get to see your specialist don't let him/her use big words or abbreviations. Get them to explain EVERYTHING. So many times I have had to say to my specialist "I don't understand you" "what does that mean" "What does that abbreviation mean". I know other people recommend having a preprepared list of questions. Don't feel embarrassed to get this out and read directly from it. Just don't be palmed off. You are important and need to have a clearer idea of what is going on.

Bun wrote: »

They then put me on Imuran (125mg) which is what I take every day.. I felt absolutely fantastic for the first two months and now I'm back to being absolutely wrecked with no energy..

Emm usually it takes a few months for the effects of imuran to be felt. For me it was at least three months. In the the mean time they usually give you steroids. They may not have started to really kick in with you. If it is Crohns it can take anything up to 6 months.

Again I go with the other comments of get your bloods checked both for inflammatory markers, liver and kidney function and vitamins. I think you really need to see your medical team, even if it is just to get a clearer picture of what is going on. Also you should have been for blood tests two weeks after starting on the imuran and then 2 weeks again after increasing dosage (i am assuming that you did not start on 125gms) Then regularly after that like every 3 to 6 months.

Unfortunately random pain is part of the condition. I get a lot of what you describe even when my disease is in remission. Imuran has some side effects of muscle pain as well so trying to decipher which one is is causing the pain can be difficult. I think it is worth it though. Imuran gave me 5 years of freedom and hopefully you will get even longer out of it

Good luck
Orla

Sidetracker

Hi Bun. I am 67 years old and I have Perianal Crohns with fistulas, Diabetes, Sleep Apnia and Anxiety. I was on Remicade infusions for 12 months when it was discovered, by colonoscopy, that I was actually getting worse. I was put on Imuran in May 2009 and I do feel an improvement. If this dosent work, I will be put on self administered Monthly injections. I am also taking Asacolon tablets. Imuran & Asacolon are the only drugs I am taking for Crohns. I am taking a host of other tablets and Fybogel to keep other problems at bay so that the Imuran can do its work. I know that there is a downside to Imuran, as there is with all imunosuppressants, but there is no cure for Crohns so you have to do what you can to control Crohns. The big secret with Crohns is, you have to learn to manage the problem to suit you. As for information from Consultants, over the past 4 years I have found my Consultants most helpful. I made a point of reading up as much about Crohns as I could find of the Net, including termonology. It has helped me to understand what's going on in my body. Good luck.