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New(ish) diagnosis of Crohn's

Hi all, I found this forum a few months ago, but seem to be reading it daily over the last couple of months. I have a long history of GI problems, but was just (definitively) diagnosed with Crohn's in March after I was hospitalized with an obstructed small bowel. During my hospital stay, I was treated with Pentasa, IV steroids, antibiotics, and pain meds. I was released with Pentasa, 40 mg Prednisone, and a couple of different antibiotics. After a week, the doc lowered my Prednisone by half. At 2 weeks, I started on 50 mg of Azathioprine and continued on the Pentasa for another 3 weeks. My last visit, he halfed my Prednisone again (now on 10 mg for 30 days) and stopped the Pentasa. He also took some more blood, I think to check my serum lipase, liver function and not sure what else. I'm supposed to go back in 8 weeks for another check. I'm still having some pain in my lower right abdomen and seem to need more rest than usual. Also feeling depressed...don't know if it's the Prednisone or the diagnosis. I take a small dose of Wellbutrin, which I've been on for several years.

Before I ended up in the hospital, I had had a number of "episodes" over the last couple of years where I would have severe pain in my lower right abdomen, which would continue to get worse until I finally threw up repeatedly which would reduce the pain by a lot. I would then feel punky for a day or two but really just thought it was a virus. After about the 5th time this happened, I went to my GI doc (I have hep C) and he did a CT scan which showed a "real finding" of bowel wall thickening in the TI. He followed up with a colonoscopy which showed "focal activie ileitis". He gave me the options of trying a gluten free diet for 3 months, starting steroid treatment, or doing a pill cam for further diagnosis. At that time, it wasn't clear to me that I definitely had Crohn's. He seemed to think the gluten free diet was worth a try, so that's what I did. I knew I didn't want to take steroids if I didn't have to. All went well for several months with no more pain/puking episodes. Then suddenly, it happened again and I ended up in the hospital. Now, I guess, I'm clear on the Crohn's diagnosis.

I guess my biggest worry is not knowing if any of this is working, since the obstruction episode happened without warning. I asked him if we were going to do any more scopes to see where things stand and he said, "oh we can do all the scopes you want...my wife can find plenty of ways to spend the money." I took this to mean that another colonoscopy would be a waste of his time and my money. Also, after reading all the side effects of Azathioprine, I thought he would be doing blood work more often than every 8 weeks. He has me on a fairly low dose because I've had acute pancreatitis (following an ERCP) in the past.

Am I just freaked out because I am trying to get my brain around this? And maybe it's not as serious in reality as it seems in my mind. I've always been relatively healthy, other than the GI issues, and try to take good care of myself. It would be nice if I had a little more control over life--haha.

Anyway, it has helped a lot to read this forum (although it does scare me sometimes) and know that there are so many people out there living with the same thing and finding ways to cope and live normally.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome! I'm glad you decided to join after all this time and share your story! :)

It does indeed sound like you may have Crohn's :( But staying gluten free if it helped is probably a good idea as many with IBD also have gluten sensitivity.

The depression and tiredness make me think you may have a vitamin B12 deficiency. As you have active disease in the terminal ileum and that's where vitamin b12 is absorbed, the likelihood is high. Have you had your B12 levels tested? If so, what were they? If not, get them done as B12 deficiency is bad news and some of the better symptoms are depression and tiredness. And get the actual results, don't let them just tell you "Deficient" or "low normal". Get the actual number as we can provide much more insight with that.

Also, scopes on occasion can be a good idea to make sure that the Azathioprine is healing you on the mucosal and histologic level. 50mg is a pretty low dose so you may also want to ask him about monitoring your 6-TGN level unless of course he did a TPMT test that determined you should have that lower dose.

We're here for you anytime :)
 
Welcome to the forums. I am undiagnosed as far as GI stuff goes, but Ido have a diagnosed vitamin B12 deficiency, and I agree with David that you could be having this.

Also, the way I understnad things (but plejase correct me David or someone else if I'm wrong) a periodic colonoscopy is recommended in Crohn's patients for monitoring.
 
Thank you for your responses. I had my B12 checked in December of last year and it was 908.4. Sounds pretty good to me. They did do the blood test you mentioned before I started on the Azathioprine, and I have no idea what it said other than it was okay for me to take it. Not a very good consumer of medical info I'm afraid. Is it possible that he is using such a low dose because I have a mild case?
 

David

Co-Founder
Location
Naples, Florida
908.4 is indeed quite good :)

My understanding is that you aren't given an Azathioprine dose based upon disease severity but what you can tolerate and will get its metabolites to levels where the treatment is therapeutic but doesn't create bad side effects. It's a balancing act and the TPMT helps them figure out what dose might be best for you.
 
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