Proctocolectomy

hey welcome to the forum, you'll get through this, sometimes i listen to this song when i need some encouragement or insipration. hope you feel better, life always has an up-side. http://www.youtube.com/watch?v=_cX9ZVB_kto

Post Edited (Rango16) : 12/10/2013 5:25:12 PM (GMT-7)

I had an end ileostomy done in February this year for Crohn's of the colon. Surgeon kept my rectum in, partly for a possible future reconnection and partly because I was on a high dose of steroids, which would have increased the likelihood of complications. The reconnection probably won't happen now (my GI cautioned against it), but I have no plans to remove my rectum; apart from passing mucus occasionally, it causes me no issues. But then again, my rectum was not badly affected compared to the rest of my colon.

I presume you've tried all the meds, diets etc.? If so, then go for the surgery. You will have more energy afterwards, that is pretty much guaranteed. If you have never had small bowel disease and don't have fistulising disease, you might even be a candidate for a j-pouch - but that's something you'd have to discuss with the surgeon, obviously.

The psychological aspect of dealing with a stoma varies. My stoma nurse told me that it took most people a year to really come to terms with having a stoma and from my experience that seems to be about right. Oddly enough, my worst time with the bag was during the summer, about 5-6 months after the operation; it just hit me one day that there was going to be no reversal in all probability (and even if there were, chances are the Crohn's would return and I would have to revert back to an ileostomy) and I was devastated. Most people probably don't go through that, but I did. I was never the world's most psychologically resilient person, though, and had issues with depression long before the lovely Crohn's came along.

I think you are making the right decision to have surgery and I'm sure it will give you your life back. Active Crohn's disease is debilitating for a number of reasons. Best of luck.

PS: Make sure to speak to a stoma nurse and get sited for the stoma beforehand. You don't want the stoma too near any creases in the skin, or to be sitting right where your waistband normally is. Also, make sure that the surgeon understands the importance of creating a decent spout! Flush stomas (ie stomas that are level with the skin) are a nightmare to deal with, and you don't want that.

Thanks so much for the support and encouragement. It has been a long battle.

I am sure that the adjustment period after the surgery will be a long and difficult one.  Largely for vanity reasons.

I am looking forward to getting my life back and being able to go out with friends and such. Something I haven't done much of for a very long time.

My disease is one that has been plagued with fistulas as well so reversal is not in the cards for me. Once I go do this there is no turning back.  However, my quality of life now stinks!  I'm spending so much time home with my dog I'm starting to understand what she is saying to me

Thanks again so much :) And yes I am looking forward to being able to take my dog to the beach once again where she can run and play. It is her favorite spot to play. She ends up filthy and my car requires a thorough cleaning afterward but all is good :)

I hope everyone has a Merry Christmas and a healthy 2014!