I had the final (3rd) part of my J pouch surgery on 11/9/15 for UC. My symptoms only started this year, but came on very quickly and were very severe. My entire colon was removed, and they left part of my rectum. I'm two weeks out, and am having at least 30 BMs during the day, pretty much all water and nothing solid. That's just during the day. My surgery was on a Monday. My diarrhea started that Wednesday night, and up to 6 times a day a least by Friday. I was discharged on Saturday. That night I was going 1x/hr overnight. Completely incontinent during the day on Sunday, and no sleep that night. It has just gotten worse as the week went on. I'm completely incontinent, and have resorted to wearing a diaper. There are times when I'm going every 15 minutes. I spoke with my surgeon and I've been taking 2 Imodium with every meal as well as Metamucil 2x/day for the last 6 days. I haven't noticed any change. I'm eating rice, oatmeal, breads, sometimes with cream cheese. I also have pain in what I think is my rectum, the area just below my coccyx none. No blood and no fever. I know there is an adjustment period, but can this be normal? Could the pain be from my rectum, from my pouch or could it just be painful because I'm going so frequently. Or could I have pouchitis this soon after my surgery? Please help. I'm so scared and feel so sick again. Nobody prepared me for this and I feel like I did when I was "sick". I feel like I'm not absorbing any nutrients at all. I maintaining my discharge weight but haven't gained anything, which I'm hoping to do. I appreciate your advice and support.
Hi -been there and it is so frightening. I had my j pouch done almost 30 years ago! I went through all kinds of things. When I had it done, the doc had us take the Metamucil with a tiny amount of water - like a scoop with 2 tablespoons water. I am just double checking that you are doing it this way.
Be sure you are drinking - possibly propel or gaterade or something like that to keep you hydrated - even if it goes through you. If you do start to feel really weak, go to ER and they will put in an IV to get you re-hydrated. (( am not a doctor - so check to be sure this is good advice).
I know you are so scared - I had tons of watery diarrhea and tons of ups and downs after initial j pouch. A couple times back to hospital. Etc. Lost 20 pounds and I was thin to begin with. My point is, that was when I was 23 and I'm now 52 - almost 53. I made it through it.
If you keep after your surgeon and you aren't getting some improvement, relief - I would put someone in your family on a mission to find you a GI person and nutrition person to help you if surgeon and hospital find no other problems other than the continuing watery BMs. Don't be afraid to look like a sissy and go to the ER for help. I was one of those - I don't need to go - and I'd wait way to long to go to ER. They would say, "why didn't you come two days ago?" etc. -
You are recovering from a huge, life altering procedure. It takes a long time. Surgeons love to say, "oh - you'll be good as new in 6 weeks" or something - well, it takes the time it takes. Please keep us posted on how you are doing and do not be afraid to go get help!