Just read your reply and must say you did really well after 6 months from rejoin. It is 12 months in June since I had my bag removed and still have hit and miss BMs it seems to go quite good for a couple of days, then whammy! I'm running back and forward to the loo 7 - 8 times withing about 4 hours, then end up with a really sore butt. I keep looking on the positive side though and know that it can't go on forever. (hopefully that is) Another thing I don't enjoy is the bad odour from wind that sneaks out just before I begin having a run of BMs, it can get really embarrassing if I don't make it outdoors in time.
Good health and much strength to all of you.
This is a wonderful way to find others in the same or similar situations.
Annie in Oz
Cece - I'm so sorry you had the trouble with the bowel obstruction. I know you were doing so well. I hope you are feeling better now. And Peggy has been a huge help to so many people and then to have her husband dx'd with ALS - where's the justice in that?? It just seems like we can barely catch our breath before another wave comes to knock us down. It's wonderful to have a place to come where people can listen, understand, help, sympathize, commiserate, etc. I've browsed some other forums, but the people on this one are real standouts!
So yesterday I found the courage to eat a little more substantially. Over the course of the day I had 1/2 sandwich (turkey on white w/ mayo), 1/2 banana, some pasta and potatoes. An Atkins Diet killjoy!! Anyway, things thickened up a bit and even quieted down for a 1.5 - 2 hr period during the day. But there is still a lot of very loose stool, some pain and incontinence. I also pushed myself a little hard yesterday getting out and about. I'm going to try and rest a little more and see how that does.
Sue - I found the calmoseptine ointment and am using it. Thatnks for the tip! It definitely feels a little better and if the D would clear up for a day, I'll bet the sore bottom would too. I wanted to ask you about gas. There seems to be a lot of gas involved with the jpouch and it's very painful. Sometimes it's just gas and sometimes it's ahead of a bm. I can't tell which and it's driving me crazy! I'm going to keep the Always (pads) people in business for a long time at this rate.
SfgJo - frequency and diarrhea are back with a vengence and I'm sorry to say the control has been difficult. I've been to the bathroom 3x since starting this post and had to change my pad twice. That said, it's not explosive or bloody like with the active UC and part of the problem is this gas thing. Also, like Suebear always says, it's different for everyone. My sphincters are in good shape so I'm not sure what the problem is. I have a followup next week and believe me, it's at the top of my list of q's. I think it's just hard trying to fool your small intestine into believing it's a large intestine.
What you are experiencing is normal for recovery. In time your gas will subside and you will better predict when it's just gas and when you need to empty your pouch. Hang in there.
Good news! There's a reason I've been having so much trouble. I went for my post-op followup today and told my surgeon what's been going on and he pinpointed it immediately. It turns out I have a stricture where the pouch is joined to the rectum. It's supposed to be open about 2.5cm and mine is only around 1cm. It's preventing the pouch from emptying the way it's supposed to and causing the majority of the problems I've been having. I go in for an outpatient procedure tomorrow so he can dialate the affected area and then my pouch should start acting the way it's supposed to. YEA!!! Who would've thought I would be so happy about a complication?
BTW - for those of you who are in the bullpen for your reversals (Richard, Jo and others), my dr. said the reason this happened to me was because the reversals are generally done around 3 months after the jpouch is created, but I got pneumonia about that time and had to wait about 6 months and it closed up over the extra time from non-use. He said that only happens about 30% of the time in those cases. So the lesson learned here is don't let your kid give you the flu!