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Hello-I have periodically visited this forum for a few years since my wife’s UC issues...there is some good info posted here.

Long story short, my wife was diagnosed with UC after we had our youngest boy in 2010.  Things spiraled from there and after medicine(s) failed she had J pouch surgeries in 2015.  Things were never right as she had continuous issues (pouchitis/cuffitis).  She ended up with a fistula & was diverted in 2017.  This past July she had surgery to try to correct things & reconnect but her J pouch was “contorted” & was not salvageable so a new J pouch was made.  Her rectal cuff was also removed.  However her SM artery was not long enough to reconnect the new pouch & they left her diverted.  The hope is that after waiting ~6 months things will stretch & they can continue with the new J pouch, if not they will try an S pouch.  If that doesn’t work she will have a permanent ostomy.      She has struggled greaty with her “temporary” ostomy (actually struggled since 2010) so the thought of a permanent ostomy is very unsettling for her.   My question has anyone had a similar situation with needing an SM artery  “stretch” so a j pouch is possible  and does anyone have any experience with an S pouch?

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Although I did not have an SM artery problem, I did have an S pouch for 30 years until it had to be removed due to a malignant polyp and recurrent high grade dysplasia in the anal canal.  Since you mentioned that your wife’s rectal cuff has been removed, the strength of her anal sphincter should be tested with a manometry exam to determine if it is strong enough to support the proper function of an S pouch or a J pouch.  In my case, I very strongly did not want an ileostomy with its associated issues.  I was fortunate to locate a surgeon in St. Petersburg, Florida who gave me a BCIR, a procedure that does not require having an external bag.  If your wife is unable to get another J pouch or an S pouch, the BCIR or very similar K pouch would enable her to avoid getting the ileostomy that she wants to avoid.  Please feel to send me a PM with any questions you or your wife might have.

Bill

BillV

I feel for her with the temporary ileostomy.  I relied on members here who told me that a permanent ileo was night and day better than a temporary ileo before my last surgeries.  My j-pouch failed and was ultimately removed.  

Hopefully she will soon have a successful take down surgery.  If it doesn't work please tell her a permanent ileo is much better than what she is dealing with now.

TE Marie

Try Dr.Remzi NYU. The C clinic imo is humbling on mediocre practice now by pumping it's chest from the past. Their best surgeons are gone and one was accused by more than 1 women of misconduct. Google it. Even nurses filed on the patients behalf so...

Remzi is known for his pouch redos. It's a suggestion not a must. He was willing to do a one step on me..90% chance lapro..then he left the clinic...now in New York. I am a strange case though in the fact I have an ileo and have 25% of colon for the time I have had it. Tbh...i only had UC for 3 months. No toxic mega colon...no dysplasia....nothing. I would trade my 5-6 UC trips a day over an ileo or all the surgery options for a j pouch. Tbh 3 months is not long enough imo for surgery unless toxic megacolon or dysplasia. It could have been one first flare and that is it. I will never know. Also not all therapies were even used. This is why Remzi thought that was enough trauma mentally...he would do everything in one step. He even appolgized...for what happened...not his surgery.

 

Why do I write this...one to drop a surgeons name. 2.....take solice that everything was tried before surgery. You can look ahead and not go...what if they told you this or did that....

Always ask for stats for the surgeon. Far as life with an ileostomy. Well....its not easy at first...eh it never is...but the first year....huge. after that....most can eat whatever they want. The thing is you do have an ileo.....but far as pouchitis, failure, etc....barely ever hear of it regards an ileo. The main thing with an ileo.....prevention of hernia is a must. It is the greatest complication post op and yet very few physicians talk about it....the highest complication...

An ileostomy is really about a game of adjustments. I get it I am on a j pouch board talking ileostomy. But usually my scenario is what most of this board's worst case scenario/initial fear is...or why have the j pouch right? So if what I wrote ( not my case...seriously only 3 months U.C..i wasn't even old enough to drink liquor when it happened )...but me talking about an ileo didn't give you the worst case scenario feeling.....then the worst case isn't as bad as you might have thought. Again my case...is well ...handled poorly and still is..i will omit it bc it shouldn't happen. However, most can eat what they want. You can tell when things might be iffy bc you can see it....there for most part is no urgency....pouchitis ...rarely failure...using restroom at night ( after year 1 ), .....

Far as the bcir, their valves if you will can go but could be an option. However heck none of any options are ideal vs pre uc. Ileo you get leaks etc. I do think there is a correlation between BMI obesity and the outcome for things to reach.

Gl. 

 

 

C

A permanent/end ileo is where the small intestine is cut and the end is put thru a hole in the abdomen.  End ileos can be reversed too.  

A temporary/loop ileo is where they pull a little of the intestine thru an opening in the abdomen and create a little loop in the intestine. 

I had a horrible time with the temp ileo. The permanent one is much better. 

TE Marie

Yes. 

Day and night difference on how things are with a loop and an end. I have an end.  So easy. I had a temporary  

I had nothing but burn and pain from it.  Leaks. Everything. My end ileo is no problem. If there is one it's usually my fault.  ( applying a wafer wrong or not getting the bag completely snapped on.) I just did that too. My fault.

Most of the time I don't even notice I have an appliance on. Only when I empty am I reminded. Which is good. 

Whatever your wife chooses. Good luck.  But let her know that an end ileo is not the end of her life. It gave me mine back. It's miserable living with uc.  Miserable. And no way to live.

Richard  

Mysticobra

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