Having Pouch Surgery Need Advice On Personal Experience

[Charlie93]

Hi, at the age of 13 i was diagnosed with ulcerative colitis which was controlled by asacol and prednisalone a type of steriod. I was back playing football and had great expectations at school until a year later i was in hospital with a bad relapse at the age of 14. They tried me on many drugs (too many to name lol) which resulted me being in hospital for 2 months but NONE had worked! i was in a critical condition resulting to me needing surgery which was a colectomy of my whole large bowel the doctors said it was a life saving operation! I know have a illeostomy and have recovered and coped with it well know for a good year i had to give up football and have tried to catch up with school work. My surgeon is thinking of doing the pouch now with the small intestine which will help towards the reversal. Has anyone else suffered with ulcerative colotis and had surgery? If so could you say about your personal expieriences and how you coped with it? Anyone had the pouch reversal and is life going to be good after it?


This discussion is related to Reoccurring UC at age 28 - Considering Surgery.

[Charlie93]

Thanks for your help and support this is really helpful i will try and take in a few tips for the future and hope your son gets well soon.

[TrudieC]

Hi there!  I was diagnosed with UC at 21 and had very active disease for 10 years.  I was in the hospital being treated for dehydration when my bowel perforated.  I was rushed into surgery and had the entire large colon removed.  After a month in the hospital fighting for my life I headed home with my ileostomy.  

The pathology was unsure if my diagnosis was UC or crohn's so I had to wait a year before I could have the pouch surgery.  If I stayed healthy for that year then the odds were I had UC.  If not, it was crohn's and no pouch surgery.  They created my pouch at Mount Sinai Hospital in Toronto.  The surgery went very well and I had another temporary loop ileostomy for a few months while everything healed.  I did have one complication.  After I was home for a week I developed a fever and awful back pain.  I was rushed back to Mt. Sinai to be treated for an infection in my ovaries.  They put in drains and gave me the powerful drugs and all was fine.  

After the loop ileostomy was closed it was a challenge for the first few months.  Initially the stools are very loose, they can burn the skin because of all the stomach acid in them, there was some stool leakage and I was still getting some diarrhea.  By using Immodium as needed and changing my diet to include items that would help to bulk up my stools I did well.  You need to avoid things with lots of fiber in them and do eat things like marshmallows, oatmeal and apple sauce and increase your protein intake (eggs, meat).  These help to solidify stool.  Keep drinking lots of water.  

Over time you will learn that when you have a bowel movement to stand up for a moment and then sit down and try again so you can ensure the pouch is empty.  You can work to train yourself to go less by holding your stool as long as possible (when it makes sense).  This will stretch your pouch allowing it to hold more.

It has been 15 years since my surgery and I am so happy I had it.  There's no doubt that the first year has its challenges but you will feel normal again.  I find that the only thing I watch now is if I eat too many raw vegetables or sugar that I have an increase in stool.  Otherwise I eat everything I want (spicy foods and beans too) and I can drink wine without any problems.  You will know your body and some foods give you more gas than others.  Over time gas is not a problem as you will learn to trust when it is gas and when it is something else.  

My son is 22 and suffering from UC too.  He is debating having the surgery but cannot do it unless he is in total remission because all his disease is so close to the rectal cuff.

Good luck to you.  I highly recommend the surgery.