I had severe UC for many years with a periodic flare-up here and there until I eventually went into a continual flare-up mode. After trying several treatments that didn't work (the last of which was Entyvio infusions), over the course of several months, I was at my wits end with repeated ultra-urgent bathroom breaks, and many "accidents" where I didn't make it, so I was advised by my top notch gastro surgeon at Cleveland Clinic to have a 3-stage Proctocolectomy (removal of entire colon and rectum) done, which included the creation of the J-pouch.
My first surgery was in May of last year (2017 - age 60) after which I had the ostomy bag to contend with all the time, including at work, but I figured out how to deal with it. My second surgery was in mid October followed by the 3rd/last surgery - the illeostomy reversal/closure - in mid-December.
My surgeon told me I should have a standard 4-6 week recovery after the second surgery but didn't feel good and dealt with fatigue so stayed off work for the full 8 weeks until my last surgery. My surgeon told me all along that I should expect a 2 to 3 week recovery, after the reversal/closure surgery, but I experienced severe fecal incontinance, in addition to not feeling well and fatigue, for about 3 months, so my surgeon put me on 3 anti-diarrheal medications - Imodium, lomotil, and liquid opium.
The medications helped a little but didn't solve the problem and still couldn't go back to work after about 4 or 5 months, so my gastroenterologist directed me to go to physical therapy for biofeedback therapy - anorectal-feedback treatments, which involves neuromuscular conditioning to essentially re-learn the muscular actions needed to defacate.
I completed the therapy about 3 weeks ago with "some" improvement - basically I get through the day with about 10 trips to the bathroom with no accidents (some leakage), but am up about 6 times through the night with diarreah - most of them where I didn't make it. So here I am 6.5 months later with severe incontinence predominately at night and still not feeling well at all - especially through the mornings where I'm trying to take a nap or two to catch up on the sleep I missed. I have gas quite a bit and my stomach makes lots of noise much of the time and I still have the fatigue. I take iron pills for the fatigue which helps a little, but they're recommending iron infusions, which I was reluctant to do but after some research I'm going to ask for it.
There was much discussion throughout about my diet and I met with a dietitian at the hospital, but it doesn't seem to me that my diet is the problem. If I don't eat after a certain time like 7 PM until morning, that helps some but still have the problem. There does seem to be a few "trigger" foods, so I try to stay away from them - especially in the evenings/nighttime - chocolate, candy, ice cream, etc. I am low-moderate weight for my age of 61 at about 173, while my normal weight over the last several years has been more like 185. I take a daily vitamin, drink a low-sugar, nutrition/protein drink (was Ensure, then Boost and now SlimFast), generally try to go light on sugar, meat, dairy, processed foods, and fried foods, and I was told to eat a lot of salt. I've been back and forth a few times with regards to being on a soft/low fiber diet or regular/higher fiber diet where I would take Metamucil, but generally on a moderate diet and don't take the Metamucil.
I am seeing my gastroenterologist today so wanted to get this out. Don't know why I waited so long to post, but would greatly appreciate and and all advice, as I would very much like to get better and get back to work. I had a great job with a great company but have lost my specific position now and may not even get any position with them if I don't get better soon. Thank you!