Who did your kpouch and what holds it in place?

Hi Kelsie,
The k pouch is anchored at 2 different sites. The 'stoma' site where the valve is brought out to the skin and sewn down which represents a rather stable anchor and a spot at the top of the pouch that is sewn to the inside of the abdominal wall with a few strategic sutures.
Those are usually sufficient to keep the pouch in place and stable. They do not sew it all around because the nature of the pouch is to fill and empty and needs to be able to expand without restriction...it also grows over time to its full, mature size (around 1 litre) so it needs to be free.
I am having surgery next week to have my pouch tacked down again. It has 'fallen off of the wall' numerous times. (I have a healing disease that prevents things from healing shut 'glueing' together...so when my sutures get absorbed things fall apart. This does not usually happen to most people).
Good luck to your daughter and I hope that the surgery is accepted and goes well.
Just because the j pouch didn't work out & had problems does not mean that the k pouch won't work.
They are the same pouch but do not function in the same manner.
The j pouch requires your stools to be thicker and can require thickeners, bowel slowers etc. You do not necesarily empty out the j pouch 100% every day either nor do you irrigate it.
A k pouch requires very liquidy stools, which is fine because when you don't have a colon things stay pretty liquid. (grape juice and prune juice are wonderful allies).
I empty my k pouch about 5-8xs/day. When I keep my stool liquidy it can take under 2 minutes. When things thicken up or I have too much fiber in my diet it takes longer (up to 5-10 mins depending on what I ate).
I rarely get pouchitis which is much less common among k pouchers for the above mentioned reasons (among others). Things do not have time to fester and build up as much bacteria.
If she feels that this is the solution for her then she should fight for it...it is worth the effort.
Good luck
Sharon

Sharon how many surgeries have you had for your kpouch? My daughter does not form scar tissue or adhesions so I worry it would be an issue.

Kelsie,
I am a very, very bad example and hardly 'normal' compared to most people and their healing process. With D'Heller's-Danlos syndrom my body doesn't form connective tissue which is at the origin of most of my medical problems. Every surgery, even the simplest ones lead to more to fix the original ones. Even the removal of a cyst or beauty mark ends up being a big thing...6 weeks with sutures + staples + steri strips. And even then there is no promise that I will heal.
My original k pouch was a 2 step (he left the colon in but formed the k pouch and hooked me up immediately)...But the pouch fell off of the wall. Thus ER and more surgery...it ended up taking 3 to get it right. It fell off of the wall again about 10 yrs later and at the 20yr mark the valve slipped along with negrossis behind the pouch.
I had it fixed by a French surgeon who hadn't mastered the technique and screwed it up badly. Dr C in Toronto re-fixed it in 2005, 2007 and then I had a series of unfortunate incidences and problems (hernias and twists)...they cost me 7 surgeries in just over 1 yr.
Since then it I have had a few more hernias and repairs + assorted hiccups but essentially my pouch is fine. It just keeps falling off of the wall.
Will try a new technique this time using the pre-existing mesh that was used to support the hernias.

Keeping my fingers crossed.
Hope that your daughter does well...if for any reason her healing process resembles mine then have the doctor look into D'Heller's Danlos...it is not as rare as some think it is and apparently more than a few of us have it.
Sharon

Interesting you have the Ehlers-Danlos problem. My daughter also has pots and that is very common with pots. It just makes me go hmmmm. Every Stoma she has had has retracted (even the revised ones) her pouch prolapsed and they think its maybe due to not forming scar tissue or adhesions.

Her body is weird that's for sure. And she has always been atypical. In all her years of severe pan colitis her inflammatory markers were NEVER off. Labs would tell us nothing and even scopes looked good until you looked at the biopsies. I someti,es think its worth a try en I worry it will just bring more problems. And I'm really getting tired of the $1,000+ travel expense alone of going to cc every time. She also suffers from chronic Abdominal pain due to all the surgeries.

I'm not sure if she will even be a candidate for a kpouch according to cc. If not that takes away one of the options which at this point may be a good thing!! But if she would get 10 years with a fine working kpouch that would be amazing!!!!

She was doing pretty well until last week. Seems just when things start to go well something comes up. Argh!!!!

Kelsie,
Where are you in the U.S.?
I know that Dr Cohen at the Mt Sinai hospital in Toronto Canada seems to get all of the 'difficult' cases and does the k pouch anyway (think about Eric, Dixie, me and many, many others)...he sort of is the 'never give in, never give up' kind of guy.
Devoted.
What exactly is Pots?
I know that the ehler's-danlos is not very well known, even around here, although I am encountering more and more specialists who at least know what it is (10 yrs ago they looked at me like I was a nutcase...then again...Who knows, maybe I am???)
I used to think that it was just the hypermobility of the articulations (joints)and that was it but my generalist started to really look into it. Now my cardiologist is telling me that it has a real incidence on the walls of the blood vessels (he explained that they 'explode' easily especially in the zones that are 'abused' like the hands and fingers)...I get regular 'burst' vessles in my fingers...feels like a cigarette burn, suddenly it turns into a red/black, painful bump that reabsorbs leaving behind a nastly bruise.
Being that he has a sense of humour, he warned me that the aorta can burst the same way! Told me not to worry...that I'll be dead before I know what hit me! (Took me a week to be able to laugh at that).
The healing process/collagene is the scary part...don't seem to have any 'glue' in my body. Things don't heal properly, take ages and fall apart easily.
I do take supplements and they help a bit but I am not sure what I can do to make things better...there is no cure, just more and more unhappy info that they keep adding.
I know that it is genetic and my dad has it (my brother and cousin too in all probability but they don't want to 'know').
Keep your daughter's hopes up... K pouch doctors are a special breed of surgeon...they are usually devoted to their patients and really fight for their k pouch success.
Sharon