I have no idea. I basically went when I felt the need, or held if I had to. Sometimes that could be an hour or two. To be honest, I am not sure it really makes a difference in the long run. That was 20+ years ago and I M OK without such instructions.

Jan

Same as Jan. Got my pouch before the interwebz... Just winged it. I held when I had to, went when I had to. Basically time between lengthened. Have had mine for 25 years; I go b/w 4-8x a day, fluctuates with what I eat/how much. Today I worked a 12 hour + shift, and I went 4x. 

My pouch is about 14 years old, and I was advised to "stretch" it to increase its capacity. I can't know if the pouch ended up any different as a result, but it was very helpful to carefully discover the limits of my pouch, and to learn which signals meant "go now!" And which meant "go when it's convenient."

I had my surgery in 1992 and was given the same instructions by my surgeon (who was at that time the top J Pouch surgeon in the USA): hold your bowel movements as long as you can in order to stretch and increase the size of the pouch.  I suppose that the hold threshold and time varies with the individual.  I was also given kegel exercises to do in order to strengthen the anal sphincter.  His office gave me a very structured, military like approach to the post takedown period of my life, which also included dietary guidelines for the 30 days post-takedown.  Until I came to this board and found out otherwise, I had thought everyone was doing what I was doing.

CTBarrister posted:

I had my surgery in 1992 and was given the same instructions by my surgeon (who was at that time the top J Pouch surgeon in the USA): hold your bowel movements as long as you can in order to stretch and increase the size of the pouch.  I suppose that the hold threshold and time varies with the individual.  I was also given kegel exercises to do in order to strengthen the anal sphincter.  His office gave me a very structured, military like approach to the post takedown period of my life, which also included dietary guidelines for the 30 days post-takedown.  Until I came to this board and found out otherwise, I had thought everyone was doing what I was doing.

CT I have seen your earlier posts where your docs told you the area inlet above the pouch could not be stretched if there was a stricture, but you state here that the pouch could stretch...isn't this the same small intestine?  forgive me if I misread your previous posts.

Pouchomarx-

Those are two discussions that do not involve the same subject and happened 20 years apart. When I got the J pouch I was told that the pouch itself would expand from holding my bowel movements. And that the pouch would eventually adapt to performing colonic functions but not 100% the same.

20 years later I had narrowing of the pouch inlet which was being caused by inflammation. I was told that this narrowed area could not be stretched by means of a dilation. The approach towards that narrowing was to treat the inflammation and not do dilations- this makes sense because the narrowing was being caused by inflamed tissue and stretching inflamed tissue doesn't make the inflammation go away.

Since that time the inflammation has been effectively treated. Had it not been, this would have potentially become a serious problem as I was getting partial blockages and it wasn't a good situation.

CTBarrister posted:

Pouchomarx-

Those are two discussions that do not involve the same subject and happened 20 years apart. When I got the J pouch I was told that the pouch itself would expand from holding my bowel movements. And that the pouch would eventually adapt to performing colonic functions but not 100% the same.

20 years later I had narrowing of the pouch inlet which was being caused by inflammation. I was told that this narrowed area could not be stretched by means of a dilation. The approach towards that narrowing was to treat the inflammation and not do dilations- this makes sense because the narrowing was being caused by inflamed tissue and stretching inflamed tissue doesn't make the inflammation go away.

Since that time the inflammation has been effectively treated. Had it not been, this would have potentially become a serious problem as I was getting partial blockages and it wasn't a good situation.

 

how did you get the inflammation to subside? reason I ask is that I had my takedown 7 weeks ago and a few weeks ago I was in hospital with bad abdominal pains and a ct scan showed severe inflammation 20cm proximal(above) the connection site of the ileostomy. they said it was not typical at all but it was for sure inflammation. I stayed in there for 2 days with basically just antibiotics and sent home an 10 day course of them as well. It has been much better but some days it still hurts and I am thinking I still have inflammation there. I am scheduled for a scope with Shen this Thursday for that reason and also a possible internal hemorrhoid that bled really bad last Wednesday but has not at all the past few days. Not really sure if the scope can even get that high up to see that area???

The inflammation subsided due to (1) dramatic change in diet; (2) Entocort; more recently when inflammation worsened again, Remicade. This inflammation was chronic inflammation that had gotten worse over a period of 20 years. More recently it's dramatically improved due to Remicade.

I am not sure they would try Entocort since I am only 7 weeks out from takedown surgery. I have been on it in the past and it helped greatly. I guess I will find out what Shen says on Thursday