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Hello! I have severe UC and one month ago I had a colectomy during which a temporary ileostomy was placed.  The second surgery will be to remove my rectum and create a J-pouch, and the 3rd surgery will be the ostomy take-down/reversal- this will all happen over the course of 8 months.  I'm doing well so far.  I'm still fighting with fatigue and a sore belly (and still getting used to this alien pouch on my stomach), but overall I'm feeling much better and I can finally eat.  Hopefully I'll even get back to work in a couple weeks after being on medical leave for almost 3 months!  I just wanted to reach out to anyone who has had this series of procedures and see if anyone has any advice on what to expect over the next year or so?  I had to postpone and re-plan my entire wedding because it was originally scheduled for 3-4 weeks after my 3rd surgery- we've now postponed it to 5 months after the third surgery.  But I'm still terrified of incontinence/leakage on my wedding day that inevitably follows the takedown procedure.  I would really appreciate any insight and/or advice!!

Julie

 Reply posted for juliekins824.

Julie I dont think i posted my thoughts to you by error. See my posts below (poohbear46).

Good luck, happy healing and i am sure you will be a beautiful bride!

 Reply posted for phoenixdenver.

Hi Julie!

First off I feel your pain. Im not sure how much I can help but i know I'm on this site because like you, talking with someone else who is in the same spot is always nice.

My story in short is that I am 46 yrs old. For two years now I have lived with very frequent bowel movements (8 or more a day) with 75% of the time being diarrhea. In May of this year I had finally taken the time to go for a colonoscopy. The doctor said I had diverticulosis...eat more fiber. Two weeks later I went to the hospital via squad, was in there for two weeks, and had emergency surgery for a ruptured colon. I woke up to find out that among several other things and issues, I had a colostomy bag...ugh. I just had my reversal done last week (now I go in the big girl potty again ;) ..working through recovery which I am sure you can appreciate.

So here is what little bit that I wanted to tell you about. Your alien buddy...yeah, I will always remember that feeling...stinks (no pun intended ;) but i was able to purchase the disposable bags instead of the type that I came home with. I remember having to milk and clean my bag and the lovely colostomy poop smell and of course...the clear view bag (eeewwww). I was absolutely miserable not just physically, but for the way you have to care for it, the smell, the look and oh yeah.....having to burp out the gas....made me so depressed and feel like a machine not a human. But once I got the disposable bags it was much better. They dont need burped due to a carborated filter for smell, they are beige not see through so you dont see the...stuff, and best part...disposable meaning no cleaning. I called it my diaper instead of bag because that is what it became like....changing a diaper. I got quick at it and It made It better emotionally. I felt better about being around people. So not sure what you are using but if you have not yet and can swing it.....get the disposable bags. They go a long way to making the whole process easier.

 Reply posted for juliekins824.

Hi Julie;
  I had suffered severe UC for many years and finally had the J-Pouch procedure.  
  I had the two stage operation beginning with total removal of the colon after which I was fitted with a bag while the surgery healed.  Three months later, I had the second surgery to remove the bag.
  After the first surgery, I was unable to hold any food down and lost a lot of weight.  They kept me in the hospital on IV nutrition for a month.  There was talk of "short bowel syndrome."  There were also episodes where I wasn't able to breathe for some reason.  They thought my diaphragm may have been damaged during the surgery.  It was a long and slow recovery.  The colostomy bag was not as obtrusive as I thought but there were embarrassing leaks and soreness from the adhesives.
  After 3 months I had the reversal.  I had far fewer complications this time.  Unfortunately, I was given no advice on what to expect.  The rectal soreness due to going to the bathroom every 30 minutes was terrible and only after a few weeks discovered that over the counter Vitamin A/D ointment (Walgreens) worked best to protect the skin.  I was given Diphenoxylate and Lomotil to control the diarrhea which helped but I was still up 4 times a night for almost 6 months.  
  That was 4 years ago.  I am now colitis free.  I still get up once a night and occasionally have accidents in bed.  They say not to drink fluids in the evening but without a colon, dehydration is a problem and I am thirsty much of the time. During the day, I go to the bathroom about every 4 hours.  
  I recently discovered the Diphenoxylate/Atropine and Lomotil weren't doing anything for me anymore.  After being on high doses for years, I now have the same number of bowel movements without it.
  I hope this helps. 
Denver