Hello! Today I mark 3 weeks post reversal surgery. I have UC and I got my first ileostomy six years ago, at 18, but only now I felt like I was psychologically ready to have it removed.
I have started off with a frequency of 7 times a day and 1-2 at night, hardly surpassing 10. I can hold it just fine (max 3 to almost 4 hours) until the urge becomes frequent over time and actually painful.
I manage it best when I'm not at home, for example when I go for walks or when I'm with friends, knowing I do not have a restroom near me. Keeping a positive mind is making a difference for me, everything becomes just worse when I'm not in the mood for whatever reason.
Sometimes I literally feel the anal muscles being tired so I give them time to rest, as staying contracted for so long would have its consequences on any part of our muscle mass I guess.
I'm slowly introducing all the foods, honestly I willingly risked it with chocolate ice cream because I was just terribly craving for it xD and also coffee (both were very much loved by my jpouch tho haha!)
Some days are just harder than others though, night time is actually the worst for me because (given uc trauma I guess) I am utterly scared of pooping myself so I hardly sleep well and sometimes I do not sleep at all. It's like I just cannot let myself fully go because I'm scared, even if nothing actually happens. If you have also experienced this and can give some help I'll be very thankful.
Now I have some questions.
- Do you think this is a good start for it being three weeks after reversal? Like, I've heard so many awful stories so I am just confused about it all... I hope my frequency will become less over time, as all of us I think, but atm despite the hard days I am pretty much satisfied. I feel "normal", I got my confidence back, I've never felt this pretty despite my abdomen is full of nasty scars and all...
- Gas: most troubling for me, as it causes the pain and the urge. I've found a position to empty the jpouch of gas without stool and it changed everything, but obviously it's not for public spaces hahaha. Any tips, despite the diet and all? Like, will I manage it better over time in the sense of urge and pain? (eg. I feel gas and hold it just fine for long without pain)
- Urge and capacity of the jpouch: how does this adjust over time? Like, I've heard of people having a frequency of 3/4 or even less... do the urges become less as the jpouch "mature", and does it learn to actually contain more stool? Sometimes I empty it and there isn't much stool, I wonder if I'll learn to understand when it is actually full and ready to be emptied (just like with ostomy)? The first days were a costant of urge-hold-urge-hold till bathroom and it was tiring. Will it always be like this? I do have moments when I forget I have a jpouch, will it be similar to this?
Okay I guess that's all, sorry if it's too many... everything is just so new and I'm curious, kinda excited and scared at the same time I guess.
If you have any type of advice for a beginner I'm ready to listen to it all. Literally any type to make this beginning better!
Original Post
surgeon told me to act like I have no bathroom near. I was just wondering about the details!