59 years old, got Crohns at 19 and now had a J pouch for 30 years. I also have a stricture that I self dilate every night. Frequent pouchitis the last 10 years.
A month ago I started having constant urges to go, with little results each time. I always have major gas that I can only totally expel by laying down. But this was worse. Had to limit my diet to compensate. After a month of drs having me add Benefiber to my diet, then trying cipro for pouchitis, I was down 20 pounds and no better. Plus the cipro got me SO constipated I couldn’t take the whole round. A scope showed there was no pouchitis. So a non-GI doctor Dr in the hospital put me on Bentyl (dicyclomine) for what he said was over active bowel and Rifaximin (Xifaxan) for gas. My new Gi doctor is just following on with that plan. Bentyl at 2-10mg every ) hours and then as needed for pain. Rifaximin at 1- 550mg every 8 Hours. Plus Prilosec. Taking all for the next month and also trying to function on a low fiber diet is proving difficult. I'm still losing weight, close to losing my job and new marriage or just 2 months.
Every day is hell. I wake up weak and nauseous. My anxiety is sky high. I'm trying to stay off meds for that. By 2-4 pm, a couple meals and snacks which are low fiber compliant, I’m now bloated, constipated and in pain that nearly sends me screaming to the emergency room till overnight. Have major insomnia and I've reduced the Bentyl to 1 per 6 hours just to be able to think or function. My dr just says stay the course for the month and we'll revaluate.
I don't really know what I’m asking here other than to desperately see if anyone else has remotely been like this and has some actual wisdom to share. My dr is highly respected but is worn out with me and I'm scared and frustrated. .
I’m ready to just have surgery for an external bag and scrap the j pouch. I got a good 30 years out of it. But the surgeons won’t do it unless I try all medical options first. One of which is some pelvic floor therapy done by a physical therapist. I understand their reluctance. What if I got the external and was still like this? But honestly, everything just always seems to come back to that stricture in my mind, Even though they say Its dilated right, I still have had to strain my guts out for 20 years to do any good....and still lay down somewhere, bring my knees to my chest and to get gas out.