Just checking in.
I rested as much as I possibly could from Friday up until Monday, took all of my pain medications properly and I’m still in pain.
I give up. There doesn’t seem to be anything that I can do to make this Crohn’s attack stop.
In the last two and a half years I’ve done everything from watching every single thing I eat – and of course I still have to because there are things that I just can’t eat at all as they cause me pain and digestive problems. I’ve tried only having clear fluids – water, broth, jello, and flat ginger ale and then when I moved to solid foods I’ve tried only eating soft fairly bland foods – rice, chicken, apple sauce, scrambled eggs, boiled eggs and things like that. I’ve actually eaten fairly soft mild food items for most of the last two years because I can’t eat a lot of veggies- especially raw, or fruit as I just don’t tolerate them well at all.
I’ve been on meds for my crohns – a combination of antibiotics and anti-inflammatories and now I’m off all of those too. I had to stop the antibiotics in 2005 because I developed a reaction to them. the combo of antibiotics and Pentasa (the anti-inflammatory for the bowel) made me feel the best, but once I stopped the flagyl I started getting worse again. Now I’m off the Pentasa because my G.I. doc wasn’t sure that they were working, plus being off them might make it easier for the camera pill that I’m going to swallow next week to see whatever happens to be going on in there now.
I don’t know what to do. I don’t sleep because of the pain but I tried my best for almost four days to sleep as much as possible. I think it helped a bit but not enough.
This is the most frustrating disorder. I hate Crohn’s. I hate it!
Every week, or dare I say ever day, since I stopped the Pentasa has been worse than the one before. I can deal with almost all of the symptoms. The one that bothers me the most and is a constant is the pain. If the pain would just stop I’d feel so much better.
Tricia – any chance you can get back on the Pentasa? My sis-in-law, as I probably mentioned before, has Crohns and Pentasa has worked better than anything else (other than getting pregnant, which put her in 100% remission until she stopped breast feeding, odd). Far better than Prednisone, which she was miserable on.
Another thought (I know, you’ve probably heard 2000 opinions/suggestions, feel free to ignore me, I wouldn’t be offended) – have you ever tried water fasting (potentially with vitamin or cooked veggies as supplements)?
Before I put my Ulcerative Colitis into remission, I was often laid up in the bathroom for days in pain (w/ blood/etc). I found that 2-5 days of water fasting would eliminate the pain and sometimes start a remission. By doing this and then introducing 1 food at a time, I was able to isolate the problem foods/behaviors then add supplements that have put me into almost 100% remission ever since (except when I cheat).
I’m really sorry they’ve taken you off the Pentasa. That’s so frustrating when they find a med that works, and then they take you off of it, even for a little while. THEY should have to deal with your pain in the mean time!!
My list of what I can’t eat is longer than the one I can eat, too!
I hope you’re having a more comfortable day today, Tricia.
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Yup, it sucks (never met anyone who would disagree with that, hope never to either). I was on Pentasa but moved over to Salofalk a few years ago, much easier to swallow with the same effects. Now I have a combination of my meds and Fish oil, Vitamin D, Probiotic and Imodium when I need it. Seems to work for me. Good Luck