Sphincter doesn’t work good...


Finally I found a forum with people who have same problems.

So,my name is Kristina. Came from Europe 2 y.a. I have S-pouch. Removed ALL large intestine. 

Here is my sad storry: 

Ive had UC since I was 16. Then all my large intestine was in ulcers..they removed all large intestine up to sphincter and made a stoma.

2nd surgery: S-pouch. 

3rd surgery: they put my stoma inside my belly, now I have a lot of scarms.

have diversion every day( so I have to use regular pads) and every night I use night big pads and I also put a lot of cotton rolls up on my pad. My alarm always setup at 2:30am and 5am, so I can go to the bathroom and there is less chance of diversion.I sleep bad, but I used to it. Btw, my S-pouch has been bleeding for a year... it’s not a lot of blood, but still....every other day I notice blood on my toilet paper...

If there some treatments for sphincter, to make it work better?

and another question, if there any government help for people who have this kind of problem? If yes, from what should I start?

My husband work full time, he is healthy , I work part time, but its soooo hard.. I work in the office near the bathroom...at least I can pay for my pads lol....

Original Post

Hi Kristina I understand your dilemma! I also had my large intestine removed in June2009! Had the ileostomy till October 2014. Had a J pouch revision in 2012 in Toronto as ni doctor in Montreal or Ottawa wanted to remove it! This dr in Toronto gave me 75 % success rate so I went to Toronto hospital from Montreal ! It was tough as I had ileus! After surgery the small intestine paralyzed for 5 months ! I stayed in hospital with cdifficil x2. And 2 abdominal surgeries (Feb 2015) to see what was happening in small intestine.  2 nd surgery was done one week after 1st exploratory surgery in Feb 2015  due to severe abdominal pains and spiking fevers !Doctirs though maybe they left something in abdomen while doing the exploratory surgery! Nothing was found just irrigated the intestine and closed me back up! I was on TPN total parenteral nutrition for those 5 months ! Finally came home in April 2015 and been wearing diapers every night as having loose stools and lots of diarrhea ! Every year had 1-2 hospitalization for anal abscess! As of 2018 it has been one year no more hospitals ! Only went to ER as had an anal fissure! Very painful! Anyway all this to say that it has been 2 1/2 years that I wear diapers at night with wads of toilet paper to try to save the diaper but sometimes go through 3 diapers! I’m up at all hours of the night going to bathroom ! It is terrible Vicious circle that I don’t sleep at night si then I ended sleeping a bit in morning and get up by 10 or 11 am ! Not a very good life but I try to go with the flow not much that I can do !  So yes it is very hard I also am on narcotics as have been in pain in rectum since my 1st surgery in 2009 ! No dr has been able to tell me what the problem is! I was detoxed for one month in hospital for Dilaudid! I was objecting every 2-3 hours ! Then when ready to ve discharged the pains cane back so was put back in Suboxone the drug they used to detox me with! I was weaned off in Oct 2017 but paibs cane back so again back on narcotic but in a smaller dose! It’s been non stop of problems but only to say that it has been hard ! Sometimes I think maybe I’ll just go back to my stoma and ileostomy! But I love my freedom from this ileostomy! If you want to keep in touch no problem !My name is Maria nickname Mariuccia! Goodnight and wish you the best!

Bleeding from your S-pouch might be from cuffitis.  I am assuming there is a cuff, which is several cm of rectum retained to the spinchter to attach the pouch to. If you don't have a cuff then I understand why your spinchter is having such a problem. 

I think you should see a GI to do a pouch scope in order to see what is going on inside your pouch.  There might be a problem in it which is causing the blood and contributing to your lack of spinchter control. It might be a course of antibiotics could help.

Welcome to the group!

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