Mixed feelings...success and failure

[ErinDF]

Hello,

So its been an interesting month. About a month ago now I found out that my ileostomy is probably going to be permanent (the original plan was for it to be temporary). I had a colonoscopy and my doctor found that (a) I still had inflammation after eight months of treatment and diversion and (b) the part of my colon that had been most inflamed had healed and formed a stricture. In addition, my fistulas have not completely healed...which means that reconnection would be a bad idea (as would resection).

This gave me some very mixed feelings. I mean, I don't WANT to have a stoma for the rest of my life. I'm only 25 and this feels a bit like a life-sentence. I had dealing with the appliance and I still have some skin problems that just aren't getting better (I apparently have sensitive skin...the things you don't know).

But, on the other hand...I'm doing so much better now that I don't know if I can really complain. I have really enjoyed the last eight months because school and work have been sooooo much easier. I did really well...and I got a job offer for next fall from my summer job! My boyfriend has been super supportive and repeatedly told me he doesn't care.

I also just started training for a half-marathon on behalf of the Crohn's and Colitis Foundation of America...so I'm also getting back in shape.

I think the long and short of it is that I'm doing better then I have in the last two and a half years. So I should be happy. But I'm not. I think about having the stoma forever and I cry. The problem is...I don't want the options to be have the stoma and be healthy or get reversed and be sick. I want the option to have it reversed and be healthy! I feel like I've lost something...

Anyway....I'm sure I'll come to terms eventually. But I needed to vent to people who could really understand.

Erin

 

[My Butt Hurts]

Awww, that's such a hard decision Erin, of course you're having mixed feelings.
Do you know what the chances of staying healthy are if you did have the reversal? And what are the chances of having to get the surgery again if it didn't last? I guess the percentages must vary, you probably can't predict.
Besides that, the rest of your life sounds like it is going SO super well for you! So congrats on all of those exciting things!
If you don't notice your boyfriend caring about your stoma, then he probably honestly doesn't. He truly loves you for you. He wouldn't be able to hide if he had a problem with it, you'd notice some teeny little thing. Don't let that boy go!

 

[kello82]

aw erin im so sorry. im crying now just *thinking* about being in your position.

its so hard to explain and it sounds weird that its something to cry over, i know.

i 100% LOVE my stoma already, it is just a part of me and i love it. HATE the skin problems as well, but compared to the pain of poo before, its the same if not better.

but i guess i still hold on to that thread of hope that i will be a normal human one day. ill be stoma free and crohns free and wont even remember that it existed.
same reason i held on to my colon so tightly and just couldnt let it be taken.

it also feels like giving up somehow. this sounds SO weird, but it always makes me cry as well...but i feel like throwing away my colon and giveing up on that way of life forever would make it sad. make my COLON sad! like it would know that i gave up on it.
so to decide to make your ostomy permanent...its like giving up on the rest of your intestines that youve been through so much with.
omg im cryinggg!!

haha i dont know if this makes any sense at all or if im just weirdly blubbering here, but i feel for you. its such a hard place to be in...

 

[imisspopcorn]

I'm sorry you are having to deal with this decision. It is like dealing with a loss. Eventually you will come to terms with it. Try to focus on the positves. You feeling good is the best even if it isn't the best of both worlds.