Need some advice please...

[R201]

Hi everybody,

I'm a new member on this forum and a recently diagnosed patient with Crohn's disease. I need some advice please since my case is not very similar to others with crohn's.

I started having very light symptoms around last christmas (loose stool but once a day, in the morning, very light nausea, weight loss). Well, I have to say that I firmly believe that stress played a big role in all this, since my mother had a serious health problem, and I was struggling to pass all my final exams with all the money problems I had. I had also a fissure, and started seeing blood (because of a big bout of constipation caused by fiber supplement that I took without drinking much water, thinking that it was a diet problem). Anyways, being stressed out, thinking that I have colon cancer (I'm 20, I know it's very rare), I decided to consult a GI, who decided to do a colonoscopy, that showed ulcerations in my colon and my ileum (and blood test that showed high C reactive protein level), which he diagnosed as Crohn. So I've been put on mesalamine (mezavant). A week later, all the diarrhea and symptoms completely disappeared. Normal life back again (my symptoms were not that hard anyways before the medication).

Two months later, another blood test, the inflammation is still there, so she decided to put me on prednisone and imuran (no symptoms at all, and I can eat anything without any symptom, like literally, I can eat a whole bowl of salad, my other family members would be more bloated than I). So now I'm tappering off the prednisone, and all my white blood cells are very good (which means no inflammation I guess). But today, the nurse from my GI cabinet called me and told me that everything is perfect (including white blood cells count), my hemoglobin is however 12,9, it was 13,1 or 13,3 in the blood count before this one. During that week (before the 12,9), I didn't eat very well, I had a lot of exams. So that stressed me out a little. I don't want to start remicade since it's the last step before surgery, especially that I'm totally symptom free right now, I eat a lot of vegetables (strawberries, lettuce,...) and nothing, I'm not losing weight,... When I consult the forum, everybody seems symptomatic at some point and very sensitive with food, not me, for a long time now (well, from the moment I've been diagnosed and calmed down with the cancer stuff, I think the stress might have a big role in all that). And by the way, I had a scan (where you drink a white liquid) for my intestines, stomach, duodenum, ileum and jejunum (3 days after I started the imuran and the prednisone) and absolutely no sign of active disease. I'm really confused. I don't know what to think with all that.

P.S.: No family members with crohn's.

All your comments are welcomed, I don't have the chance to discuss with others who are in the same situation, so I really appreciate your advice.

 

[Manzyb]

If you had a test and there are no active signs of disease that should mean that you are in remission, so ideally, in remission you wouldn't have any symptoms or anything like that. It doesn't mean that you don't have the disease, it just means that it is not active at the moment. Is that what you are asking?

Also, Remicade isn't necessarily the last step before surgery. There are lots of other medications out there that they can try as well. However, if the the imuran is working for you, I wouldn't want to change up my meds.

I don't have anyone else in my family with anything like Crohn's either.

I hope I helped out a little bit for you!

 

[PsychoJane]

Salut!
Well Crohn really is different from one to another. I don't mean to scare you out by saying what I will say, but pain and food issues are really not something that all crohn patient will experience. I know that when I first started being sick, I did not have pain. I was extremely tired and I would have blood, like insane amount in my stool for months before I started feeling the slightest pain. I also had to cope with buccal aphtaous ulcers. Beside that, I never felt bloated, never had nausea, but I would bleed myself out to the point my hemoglobin reached 4.0g/dL at my worst. If I had dealt with pain, and if I had not tolerate food, I would have spoken earlier...

Point is, the disease can be active even without having obvious symptoms. That is part of the reason why most GI are not really interested in letting patient med-free even though we all wish we could.

For what it is of your blood work results, I would not be too worried about the fact your hemogloblin is lower than the last time unless you see blood somewhere. It can fluctuate depending of your hydratation level the day you go get your blood drawn. If you are dehydrated, your concentration will be higher and vice versa.

You seem worried about the next therapeutic approach you may have to deal with. I don't think you have to be too anxious about needing to change your treatment plan as of yet. You seem to say everything is in control symptoms-wise and your last blood work are ok as well? I would not see why your GI would want you to go on with the remicaid at this point of the disease. Maybe won't you even have to take it as Imuran can keep your disease in control for a while. I would not see the need for surgery at this stage either and believe me, you won't be able to say you are feeling ok and that your symptoms are not that hard if you reach that point.

So the whole point behind that is that you can have clear conscience at the moment I believe. I would also advise you to avoid the idea of trivializing your disease. It can be quite tempting when the symptoms are mild to feel like we can go without a thing at the risk of flaring hard though.

I hope this helps you a bit. Feel free to ask more questions if you'd like, you will find support on about any topic on here!

 

[R201]

Thank you all for your replies!