Tummy Tenderness??

Coconut has a lot of fiber, making it harder for some of us to digest. When my Crohn's doctor decided (mistakenly, it turned out) that I also had celiac disease, my diet was so restrictive that I treated myself to a gluten-free coconut macaroon every day. I wound up with twelve inches of my ileum narrowed to half its usual width. I switched doctors, got put onto 6MP, and have pretty much been in remission ever since.

I love coconut, really love it. But I've given it up.

Even though I'm in remission, my entire abdomen is tender just about all the time. I don't know why (and my doctor doesn't really know why, either). If that's the worst I'm dealing with (aside from the permanent diarrhea that resulted from my 1999 resection), I can live with it. The tenderness is only occasionally as bad as yours (I love your description of having to sit down s-l-o-w-l-y), though.

Reactions to any of the more powerful drugs that are prescribed for CD are remarkably individual--and it also very much depends on how high a dose he puts you on. I'm on a pretty minimal dose. I was so sick and so scared (of the fact that my tests showed severe narrowing of the terminal ileum)--and my new doctor was so much more attentive and knowledgeable than my previous doctor--that I would probably have taken anything at that point. I don't remember having any more nausea than I was already having, and my hair hasn't fallen out at all. I take the 6MP first thing in the morning, along with an omeprazole capsule (for heartburn I developed a couple of years ago). They test my liver function once a quarter, and it's always been fine.

At my doctor's appointment this week, I asked whether I'd be staying on 6MP for the rest of my life. He said that I would. I told him that I'd been contemplating getting off it for a few months, so that I could get the live-virus shingles vaccine--and he said that I should "stay away from that vaccine." I do worry sometimes about being on a powerful drug forever, but my doctor is adamant that it's a better alternative than having my disease become active again.

Because I'm on an immunomodulator, I won't travel to third world countries. Which is fine, because I don't want to anyway. They tell you to take extra precautions when you're on 6MP--but I haven't taken any, ever. I did things after Hurricane Katrina that literally killed other people. All I got was pink-eye from accidentally touching a slug and then touching my eye. Ugh.

So for me 6MP has pretty much been a lifesaver, with virtually no side effects. But again, you'll hear from other people on this forum who've had unhappy experiences with it--and it depends how strong a dose you're on, too.

Let me know how it goes, OK? Good luck with everything.

Can I just give one other warning about 6MP from personal experience? It makes your skin more photosensitive, ie more prone to sunburn. Be careful during the summer; use lots of suncream.

6MP is a relatively safe drug to take for decades if you can tolerate it. A small minority can't. This is found out either beforehand via a test called TPMT or after starting taking it via blood tests once every 1-2 weeks for 3 months. If you haven't had the TPMT test, blood tests are a must.

Keep a check for anaemia. I am pretty sure 6MP contributed to my severe anaemia. I don't think I metabolised the drug incredibly well, though: it gave my blood cell count a hammering.

The only real reason for taking 6MP at night is to sleep through any nausea it might cause. Usually the nausea passes after a few weeks. For me, the first week was the first. It can help to start at a low dose and then step up the dose as tolerated.

No idea about the bladder polyp, I'm afraid. Best check that out with both the bladder doc and the GI. Good luck!