Just been told I need a pan-proctocolectomy...

[comewinter]

Hey guys
I'm just wondering if I can get some advice.
I am a 23 year old girl, been suffering with crohns-colitis for 6 years now, and things have gone severely downhill I have tried every medication under the sun, dropped 100 pounds in weight, had countless blood transfusions and had such a horrific time. Last year I was told I had strictures in my small intestine and they were considering doing a resection in the ileum, but I just recently had a colonoscopy and they've discovered I have strictures in my large intestine, and I need to get the whole thing along with my rectum and anus removed. I am really struggling with coming to terms with this news, and the risks I've read about the surgery are making me really reluctant
I'm wondering if anybody has had this surgery and could let me know what it's like, and how adapting to living with a colostomy bag is?
Thanks so much x

 

[DJW]

Sorry to hear you're facing surgery.

The thought of an ostomy is scary. It takes time to adjust (no weeks but months). That being said...mine gave me my life back. I got mine because of severe disease. Nothing was helping. It was a life saver.

Sending you my support.

 

[UnXmas]

Hi, I have a permanent ileostomy and wouldn't ever want to go back to how things were before I had it. I didn't find it hard to adjust at all - I had the surgery and suddenly so many of my horrendous bowel symptoms that I'd had for years were gone.

What symptoms are you experiencing at the moment that may ease when you have a colostomy? Focusing on the possible improvements may help you. And even if you don't think it will improve your quality of life, will it save you from more potential problems in the future, such as avoiding more surgeries? Your doctors must have good reasons for thinking you need it, maybe you could ask them to give you more of an explanation?

I understand not wanting to go through the surgery itself; surgeries can be horrible. But it should only be a few weeks of recovering, and hopefully the benefits will make that worthwhile.

 

[cleuger]

Hi I just had a proctocolectomy 6 days ago I won't candy coat it it's been one of the hardest physical things I ever done however one of the things that gets me through all the BS of recovery is that I know once healed I'll be a better me one that's not sick all the time or living on the bathroom or missing work due to a flare nope won't miss those things at all I wish you all the luck in the world