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!
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J pouches expand over time, but part of that process involves resisting the urge to evacuate for a while to facilitate the expansion process. I am surprised your surgeon did not provide this instruction. I was told to take Metamucil daily and resist the urge to have a bowel movement, as long as possible, so the pouch expands to accommodate having a certain stool storage capacity. Eventually the pouch did expand and I settled into maybe 5-6 BMs per day.
@CTBarrister posted:J pouches expand over time, but part of that process involves resisting the urge to evacuate for a while to facilitate the expansion process. I am surprised your surgeon did not provide this instruction. I was told to take Metamucil daily and resist the urge to have a bowel movement, as long as possible, so the pouch expands to accommodate having a certain stool storage capacity. Eventually the pouch did expand and I settled into maybe 5-6 BMs per day.
Thank you for your reply! Well, resisting the urge as much as I can is the instruction I was given 
surgeon told me to act like I have no bathroom near. I was just wondering about the details!
It sounds like you are doing amazingly well. I remember my first few weeks at home. I wanted my ostomy back so badly because it was predictable and I had grown used to it. I don't think I slept through the night for the first 6 months with my j-pouch. I wore briefs to bed for a very long time and used an incontinence pad on my bed for about a year. I am now 9 years post j-pouch and loving it.
@Jaypea posted:It sounds like you are doing amazingly well. I remember my first few weeks at home. I wanted my ostomy back so badly because it was predictable and I had grown used to it. I don't think I slept through the night for the first 6 months with my j-pouch. I wore briefs to bed for a very long time and used an incontinence pad on my bed for about a year. I am now 9 years post j-pouch and loving it.
Sometimes I miss my ostomy too, honestly. But I also remember that the first months with it were seriously terrible (and back then, I kept saying I wanted my colon back) and the predictable part of it came waaay later, so I guess it will be the same with a jpouch. I mean, I hope so.
I feel you on the bed part, I wear tampons at night and when I go out because they make me feel safer. I just hope nights will get better because sleeping bad makes me tired the whole day.
Glad you’re all well now!!