It is becoming permanent and I'm freaking out!!!!!

[Crohn'sGirl]

So I havent been on in awhile but I know that if anyone in the world will understand my emotions today it will be everyone on here. So today I went and had a flexible sigmoidoscopy. I've had my ileostomy for almost 2 years and today was a check up to see how the Remicade was working on healing my colon. It was always talked about from day one that we would be reversing the surgery and that I would get rid of the bag. It was the one thing that made things ok for me on those bad days where the bag explodes or I get embarrassed about the noises. Except today I found out that although my colon is healed and there are no signs of inflammation or ulcers my rectum has created a stricture and my colon now looks like a lead pipe, exact words from my gastro. She told me that she wont do a reversal with my rectum being the way it is. She told me that if they try and dilate it to try and get rid of the stricture that it may damage my spchinter (SP?) and that I would have trouble with incontinence and wont be able to control my bowels if they reversed it. I am having a hard time dealing with all of this! She is having me set a consult with my surgeon to discuss the removal of my colon and rectum. I am just so freaked out and just beside myself with all of this. I just knew that everyone here would understand. Anyone have any suggestions on helping me get through this????

 

[Samboi]

Oh CG I am so sorry to hear this.
I just had mine reversed and I know how desperately I clung to this.
I would have been absolutely devastated if they told me a reversal was not possible.
Are you able to get second and third opinions?
I've had doctors tell me all types of idiotic things that have been demonstrably wrong in retrospect.
And once they take your equipment out - its gone forever.

 

[DJW]

Hi CG. I'm really sorry you got this news. I agree with getting a second opinion. I can only imagine how difficult this news is to deal with. All along you've gotten by with the knowledge this is only temporary. Now the very thing that got you through is gone. Get your feelings out...don't stuff them down. We're here for you. Sending you my support.

 

[2thFairy]

Definitely get a couple more GI opinions rather than feeling defeated. Ultimately this is all your decision.

I do feel for your predicament!! :hug:

 

[annawato]

Sorry to hear your news Crohn's girl. I'm in a similar position. I was told this stoma (my second) would be another temporary one but now they are telling me that I should keep it permanently. Its a very hard thing to be told when you have been expecting to have it reversed. All I can say is that i have come to terms with it. I decided that it was far better to have my stoma long term than deal with everything this disease throws at you. For me that was spending at least 6 months of every year in hospital so a permanent stoma is far more appealing. It will take a while to get used to the idea, but try to think of the positive. And also don't hesitate to get a second opinion. Perhaps if they don't remove everything right away there may still be the option to reverse in the future when new medications or surgical techniques come about. In the meantime hang in there and know that we are all here to support you and lend a shoulder to cry, rant or whinge on.