What to do -- my story

Was diagnosed in 1990 -- Illeiostomy in 1993 -- reversed in 1994. Suffered unbelievable diarrhea controlled by taking Questran. No problems until 2009. Fistula went undiagnosed for 2 years and finally removed followed by new treatments of imuran (later found allergic and quit) Pentasa (too expensive) and now take Entocort (can only afford through Canada), Folic acid and B12 shots (due to anemia needing iron infusions). Pantropazole. Have been on Remicade for two years -- now due for HACA test to see if building up antibodies. Just started on Methotrexate injections once a week which is geratly helping the pain in joints but not doing much for intense cramping, bloating etc. Just had CT scan and surgeo says "all clear" and gave me hydrocodone for cramp pain which does not always help. I also suffer swollen ankles.

Question -- Has anyone else experienced cramping and if so, what have you found to help? You would think after all of these years I could control this, but I am in pain about every other day and severe about once a week. My GI is not much help and just saying to wait until I can get the HACA blood test. I just found this forum today and am hoping for help and thank you for reading my story.

I've had issues with cramping in the past but usually had the problem found and had that treated rather than going for any pain medication. It sounds like there must be some issue going on that's not being detected. Is there any chance you could see another GI and ask them to order some tests to find out what the real problem is? No one is in pain for no reason. My pain came from chronic inflammation towards the end of my ileum (TI). It was spotted with a colonoscopy and barium x-ray. Sorry I don't seem like much help but welcome to the forum!

Hi and welcome! I am sorry you are having so much cramping. I used to have a lot of cramping, and my GI couldn't figure out why being that the pain seemed to move around and was not near where past inflammation was located. Therefore, my GI thought perhaps I had some IBS issues on top of IBD. Now, many GI's tend to through around an IBS diagnosis when they don't have the answers, but in my case, I think my GI may be on to something. She started me on hyoscyamine, an antispasmodic, about two months ago and ever since I have had less and less issues with cramping (knock wood). It is inexpensive, too, so it is worth a shot! I sure hope you find something that works soon!

Thanks to all for your replies. I will contact GI on Monday and take your suggestions

Good luck! Let us know how it goes.

Hi NR and welcome!

As Jill mentions, there are anti-spasmodics out there that can help with cramping. Bentyl is a common one used among IBD patients. There are also anti-depressants like Amitripyline that a lot of IBD patients use as they have an added benefit of being antispasmodic. You can ask your doc about both of those.

Be careful with the hydrocodone as narcotics can cause the GI tract to slow to a halt and cause constipation, which will make things worse!

Good luck - hope you find some relief soon!

- Amy