"S-Pouch" anyone???

[LOLO12366]

Hello everyone!
A fellow ostomate and I were wondering if anyone else has or has had an "S-Pouch"?

We always hear about the "J-Pouch", "Koch Pouch, or "Indiana Pouch", but we both had an "S-Pouch" that failed & we now have permanent ileostomies.

Curious if anyone had an "S-Pouch" that failed or has an "S-Pouch" that they are currently living with.

Would like to hear your stories.
Thanks,
Lori

[Eric E]

I can't say that I have heard much about the S-Pouch. Maybe you could tell us your story and more about the S-Pouch!

[Lynne]

Yes, please tell us more about the S-pouch.

[bbcopper]

Hey Everyone,

Shortly after receiving my ileostomy and coming home from the hospital, I was on the computer researching everything about everything. I was expected to have a J pouch once I healed, but during my research I found articles talking about the "S" and "W" pouches.

I talked to my surgeon about it and it was explained to me that the the ''S" and "W" pouches were performed early on as it was figured that the greater the capacity of the pouch the more successful the pouch would be (longer hold times, more control, etc...) The "S" pouch adds one more loop to the "J", while the "W" adds 2 loops. The problems that they were encountering though were greater instances of blockages and pouchitis. The more turns there were in the pouch, the more chance of food becoming lodged and it was harder to completely empty the pouch which would cause a greater build up of bacteria. So, the "j" pouch was found to have the highest rate of success and least amount of complications.

Most people who have the "S" or "W" probably had it some time ago as it seems that very few if any surgeons today even consider it, do to the risk of increased complications.

I hope that helps ya

Brian

[Lynne]

Thanks for the explaination Brian !
So it is similar to a J-pouch .........

[LOLO12366]

Here is my story in a nutshell...
Ulcerative Colitis showed up in my early 20's. I battled it with Prednisone & other meds for 12 years. In 1998, at age 32, I had had enough. I met with a surgeon & he explained the "S-Pouch" to me. I thought..."This sounds GREAT!!!" I understood I would never have "normal" bathroom habits - but even cutting my 15-20 visits a day in half would be a vast improvement. The surgeon told me it may take up to a year for my new pouch to work properly - I could live with that. He removed my entire colon & looped my small intestine into an "S-Pouch" & gave me a temporary ileostomy while my new internal pouch healed. I spent 12 horrible weeks with my temp ileo & could not wait to get rid of it. After the "S-Pouch" had healed, they "re-attached" my plumbing & I thought most my problems would be solved....
WRONG!!!!!!

For me - the "S-Pouch" was worse than having the UC!!! Chronic pouchitis set in early on & I was put on daily antibiotics. I had to take (4 times a day) Imodium, Lomotil & Metamucil to slow down & firm up my stool. The meds didn't help much & I had constant leakage from my rectum which lead to the worse case of diaper rash known to mankind!!! (You know it's bad when the doctors & nurses gasp in horror when they take a look !) I had so many accidents & I felt sick all the time. I never thought it was possible to spend anymore time in the bathroom than I had with the UC - WRONG AGAIN! I lived in the bathroom!

After 8 LONG years - that was enough!!!! Last September, at age 40, my wonderful husband talked me into having a permanent ileostomy. (I had it done on his birthday - great present, huh?)
I feel so foolish to have waited & wasted those 8 years! I do not regret trying the "S-Pouch", as I would have always wondered, "what if"? However, I do regret waiting so long to surrender to the permanent ileostomy.

I now have a great life!!! I no longer live in the bathroom, no more pain, no more diaper rash (thanks to my "Barbie Butt"), no more meds & all in all - my ileostomy has given me a life I never thought possible.

In conclusion - it is my understanding that the "S-Pouch" is just like the "J-Pouch" - only shaped a little different. The reason I started this thread was curiousity. I had mine done in Iowa (1998) & my fellow ostomate had his done in Nebraska (1989) & I was wondering if it was a "Midwest" thing?

Here are some thoughts from my fellow (former) "S-Poucher":
"I think that the "S" pouch was just an early and not too successful design of the "J" pouch that didn't work very well because of the extra scarring and the early version of the valve (I guess it is a valve) at the bottom end."
"If I remember what he (the surgeon) told me the "S" pouches had a much longer "neck" between the pouch and where the poop came out. Early thinking was that the longer neck would provide better control but in reality it just caused more problems."
Thanks for reading -any stories or comments would be appreciated,
Lori

[sandyrn]

I had my J-pouch surgery in 1995, here in Texas. My surgeon never mentioned an S-Pouch. I wonder when they realized the S-pouch was causing problems, since your surgery was 3 years after mine?

[michele21266]

My son Bobby has FAP. At 18 he had to have surgery and now has the s-pouch because he didn't have enough small intestine to make the j-pouch. Its been 2 years now and He frequently has to go to the bathroom, most foods run right through him and at least 1 week a month he goes through bouts where his bathroom trips are even more frequent and leaves him very sore. I'd like to find other people with a s-pouch that may experience similar problems and may have some sort of solution

[nicola smith]

Apparently about 25% of people with a history of ulcerative colitis who get J/S/W or whatever pouches develop 'pouchitis'. Taking a daily dose of probiotics is a preventive measure. VSL#3DS has some decent science behind it (my GI recommended it and it worked for me) and, in some places is covered by drug plans. Note that there is also VSL#3 which is half the strength of VSL#3DS and is usually not covered. The IBD Sucks website has forums dedicated to different pouch shapes and to pouchitis.

[Paully's5.0]

I "technically" have an "S" pouch, have had it since 2003. Because I'm taller the surgeon choose the S pouch to give me more capacity. I've had an almost "picture-perfect" response to the surgery, best decision I have ever made!

[jpalazzolo4]

I had severe UC for 11 years until I had enough and decided to get rid of my good for nothing; diseased colon on May 25, 2011. It was nice having the ileostomy once I got used to how it worked and what kind worked best for me. It was like a whole new freedom. Of course, I didn't want the hassle of the maintenance of it though so I had my surgeon reverse it 3 months later on Aug. 31. I went through what most probably went through with the loose stool eventually solidifying more as time went on. But I had a horrible burning that wouldn't go away with creams or pills...atleast the pills I was on at the time. This went on for over a year. Horrible. Sometimes, if I excreted bile, that killed me with pain. Burning was an understatement when that happened. I'd be up at night sitting on my living room couch rocking my upper body back and forth until the pain ceased. Finally about 6 months or so ago my doctor gave me an anti-biotic (Flagyl and Cipro) along with doses of Loperamide and Lomotil and that helps a lot. I'm still in the bathroom for long periods of time but the burning is gone most of the time. I had a chronic burning, possibly some pouchitis which was why nothing helped. Today, my goal is to see if I can get something that doesn't keep me in the bathroom so long.
This is just my testimony for anyone who thinks they are the only ones going through this like I did. I had a severe case of UC and I believe that although I'm disease free today, I still have my obstacles to pass. Do I regret the surgeries? No. Who wants to have anything diseased in them? My life is better but there still needs to be a cure for UC and Crohns without taking the colon. It can be a better life but when you mess with what God gives you, you're never the same.

[bcirray]

I don't understand what you have now. Once a proctocolectomy is done along with an ileostomy contruction , how do you reverse that and what do you reverse it too? Just trying to help you with your situation, but need more information.

Ray

[jpalazzolo4]

Sorry, a reverse is the same thing as what some call a "takedown". It's not my terminology just what my surgeon called it. So my entire colon was removed and I had a temporary bag for 3 months. The only reason for the bag was so I could heal up where the surgeon worked. Then, on his approval, he removed the bag and hooked me back up like before just without a colon obviously. So, I don't have the bag anymore. I go like everyone else.

[johnny10]

Thought I would jump in on this discussion. Stumbled across this while explaining to a friend about my pouch. I have an S-Pouch. My procedures were done at the end on 1989, beginning 1990. I guess that makes me one of the real old-timers. I was 35 years old, I turn 61 this year. I still have my pouch and it continues to get a bit better each year. It will never be as before. There are some very important things I learned to keep healthy. 1 - If you have pain or a weighty feeling in the pouch. See doctor, it is completely treatable. (It will NOT go away on its own). 2 - Sugary things, dairy products and coarse high fiber foods (corn,peas, nuts, etc) don't traverse well. Soft fiber foods (rice, oatmeal, broccoli, etc) are great! 3 - Spicy foods, no, HECK NO. Burn in burn out. If you want something with a kick, horseradish. Some reason the body neutralizes the burn out. 4 - If you have burning on the inside, vinegar helps, pickle juice works the best. Burning on the outside around you anus, use a mild cream without or low in cetyl alcohol (any alcohol). If you itch, most anti-itch medications have some alchohol. So, I mix with my cream. I use Sween cream brand. That is the stuff they gave me at Cleveland Clinic. I still use it. (Works great for babies bottoms too!) 5 - Drinking adult beverages. Just like other folks, moderation. Excessive comsumption will cause pain and issues with pouch. Most important thing to remember, You Are Not Alone. The things I've listed work for me. I am not a doctor, just a guy with a pouch. I remember sitting on toilet after my pouch and crying because I couldn't go. Or, having to go to bathroom in the middle of a movie, game or presentation. It took time learning to plan my meals around events. (Skipping breakfast before going out the boat fishing, etc.) Pain is Inevitable, Suffering is Optional. Relax. If this helps someone fine, take what you need and leave the rest. I will keep in touch with this site. Bless you all.

[johnny10]

Bad math, I was 37 not 35.