New to the Forum - not to Crohn's!

[woodstock]

Hello Everyone,

I'm a 35 year old male and have had Crohn's for roughly 18 years. I had a resection (terminal ileum) in 2004, and things were fantastic until about 3 years ago in 2011. I had a mild flare and haven't seemed to get things back on track since then.

I take 100mg of Azathioprine (Imuran) a day and this worked wonders for a few years; but for the last 3 years it seems to have just stopped working. I manage my symptoms mostly through diet, which is very restricted and boring, but when I follow it I can live virtually pain free. As soon as I eat anything different I will get mild to severe stomach pains.

Last year (February) I had a colonoscopy and the specialist said I was in full remission with no trace of inflammation, but this is very confusing because I have so many unpleasant symptoms that I've dealt with earlier with Crohn's; mainly floating, undigested or mushy stool. I've also had a chronic anal fissure for the past 3 years, but the specialist said this doesn't look at all related to the Crohn's. All my blood tests are normal and show no signs of inflammation.

My doctor put me on Humira for 6 months and it did nothing. I upped my Azathioprine dosage to 125mg but this hasn't worked either. I'm not allowed to increase the dose anymore because of my weight. I'm around 56kg and 177cm tall. I've also been tested for every food intolerance possible. I'm lactose intolerant, but avoid it all the time. Anyway, I'm not sure if anyone has experienced anything like this with their Crohn's too.

I've always had constipation and obstructions with Crohn's and not diarrhoea going 20 times a day, like my sister experienced. I'm also under a lot of stress because of the anal fissure; these things really hurt!! It's driving me insane, and has limited my diet even more.

I'm just hoping one day I can get back to feeling how I was a few years ago. I could eat anything without any problems. So it's incredibly frustrating for the doctors to say I'm in full remission when I can't eat a variety of foods or digest anything properly anymore. The doctors can't seem to help me when they can't figure it out either.

But full remission to me is a state of having a much more varied diet along with digesting food properly; and having normal bowel movements. I used to even forget I had Crohn's I felt so good. And now I feel I've tried everything to get back to that "full remission" state but maybe this is as good as it gets!

Thanks for reading.

 

[SarahBear]

Welcome to the forum!

Is there a reason why you continue to take the Aza if you feel it's doing nothing for you? Have you tried any other medications, besides the Humira?

I'm in a similar situation, although not quite the same. I'm considered to be in remission and I still have a lot of problems, although the majority of my symptoms are extra-intestinal. I assume they're being caused by another condition that can also cause the stomach issues I experience (which are much milder and less frequent than when my Crohn's was flaring).

Does your doctor have any plans to figure out what is wrong?

 

[woodstock]

Hi Sarah,

Thanks for the reply.

Well, I continue to take the Azathioprine because I feel it's better than taking nothing. And I fear if I stop taking it completely I might have a bad flare up. My doctor said that it's probably not working as effectively as it used to because the body can somehow get used to the medication and stop it from working. I've been taking it for 8 years now.. That's why he tried me on Humira. I've also tried Mesalazine to no avail.

And like yourself I feel there must be something else causing my digestive problems. But after so many hydrogen breath tests for fructose malabsorption, etc, nothing could be found. So it's strange to have no inflammation, to be in "full remission" and have all these problems.

I've done so much research online and thought I might also have IBS but that's only a guess. And without having any inflammation or sign of active Crohn's it's hard to convince a doctor what I'm experiencing or to try different medications.

I was hoping to try Remicade but after the colonoscopy they just said everything was fine. So it's a real mystery to me and I think the doctors are really at a loss as well. That's why I've been trying to solve these problems mostly through diet. At the present I'm on a complete sugar free diet but so far I've noticed no difference.

What do you think might be causing your stomach issues if not the Crohn's?

 

[SarahBear]

I find it odd that your doctor never suggested a change in medication - especially in the years before your remission was confirmed.

My GI says I have a touch of IBS. However, there's something more going on here, because of the other symptoms I experience. My GP suspected RA and referred me to a rheumatologist. Blood test was negative for RA. My symptoms seem to go through flare / remission cycles similar to Crohn's, so now we're just waiting for them to flare up again. When that happens, I'll see the rheumatologist and we'll hopefully be able to figure something out. My main suspicion is fibromyalgia, because the symptoms fit and my mother has it (it seems to have a bit of a genetic component, like IBD does). If this is the case, the stomach symptoms would be caused by the fibro, not IBS.

I was shocked as well, when tests confirmed I was in remission. I felt absolutely horrible at the time, although most of it was related to fatigue rather than GI symptoms (although I did have those, as well).