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So it seems that I'll be part of the swelling ranks of the ileostomates. My surgery is scheduled for May 19th, and I'm semi-terrified yet so ready for it. It has taken my GI many years of talking about it for me to finally agree, but I don't see any sense in dragging around a useless, destroyed colon any longer.

I've tried and failed every drug available to me, and I'm steadily getting weaker and the flare doesn't seem to be wanting to go anywhere anytime soon. I know that I've done and tried everything else and surgery is the last resort, so here I am. At the Last Resort...hopefully, it will be sunny and warm!

Since I knew this day was a-coming, I've been following the stories everyone else with an ileostomy (surgery) has so generously shared. Thank you all for sharing your experiences---I'm sure I'll be better prepared because of it!



Sorry it's come to this for you! :frown:

You're in good company at least. It isn't easy, but you will find that after all the healing is done, you just might be able to live a much more normal life. Wishing you WELL!



Hey Glum - Sorry you'll be joining us... or I should say, Welcome! This is where all the cool cats hang out!

It is scary and you'll go thru a range of emotions, but you will feel so much better when it's over and you have recuperated!

I'll tell the membership chairman to get your card in the mail right away!

Fire away with questions - I'm four weeks out from surgery so it's all very fresh for me!

Good luck - Amy


Ames, we forgot to say they have to get matching shoes for the bag! I always forget. I was told I had to do that before I got my card...seriously.

Crohn's 35

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Hey you, I never realized you were that ill. I havent had an Ileostomy but I have had 2 recections and surgery of any kind is not easy to deal with coming. If in the future I am recommened to have one, I know I am brave now but I would do anything not to have pain any more. Vanity goes out the window. The waiting and anticipation is hard. :hang: I will be sending you many healing thoughts for you on your big day :rosette1:
Thanks, Terriernut. Yes, it's the quality of life issue that I really am focusing on. I have become a pale comparison to who I used to be, and I want the old me back. I'm sick of not being able to eat, go out without anxiety, etc.

Amy: your story, along with some of the others, have really given me courage and strength, particularly since I could give the Cowardly Lion a run for his money! I've had two appointments with the colo-rectal surgeon who will be doing the surgery and blast him with questions. But, I will likely be coming on the site to read or to ask pesky questions. By the way, I'll be waiting for the card in the mail...any chance I'll be getting a toaster oven??

Pen: yep. I can't believe I'm here. But I've been going to the bathroom over 20 times a day, have lost 39 pounds since mid-January, have multiple fistulas, etc. And no more treatment options. You're right, now that my mind is made up, the waiting and anticipation is hard, but I've decided to use the opportunity to gain some strength and get a bunch of iron infusions under my belt. Here's hoping I can hang on till the 19th!

Thanks for all your lovely well wishes...I might not get a toaster oven, and I don't always have matching shoes and bags, but I'm looking forward to being a part of some rather fine company!:)
Ah, the club no one really want to join. Welcome and I hope you have the same results many of us have. I was as sick as you a year ago. Now, I'm about to run my 2nd half marathon this weekend.
Just keep in mind how good things are gonna be for you!


Welcome to the club :) I hope you get the relief and remission that some of us currently enjoy! It's a tough surgery, but once you get through it, you'll be saying the same thing I did "Why didn't I do this sooner??"

Good luck!!
Hey CDDad: Yes, the club no one wants to join...it was either the Chess Club or the Stoma Club and since I suck at chess, this was the only choice remaining. Sigh.

Nyx: Reading how you and others' have come to find such relief and joy in life again is inspiring and given me the push I needed to make the decision. I look forward to asking the question of why i didn't do this sooner...!


Am I the only one that WANTED to join this club??? After my last scope, if my doc had come out and said, "Let's try one more medicine and give it another 6 months" I would have jumped out the window. When he said, "It's time" I wanted to give him a kiss! (Well, I always want to give him a kiss, but I'll save that for starting a "I have a crush on my doctor" thread).

Welcome, Glum, we are glad to have you among us, matching shoes or not!!

- Ames

I'm not part of the club(but at one stage thought i might be);

I just wanted to wish you all the best,a speedy recovery & a better quality of life.Good Luck.
Thanks, e13 boy! Yes, a better quality of life is what I'm hoping for...you may not be part of the club, but it looks like you've had enough operations to write a book! Fistulas, fissures and abscesses are horrendous...I'm trying to get rid of two fistulas right now and look forward to not getting them again (fingers crossed!).
Good luck with the surgery! You will be feeling great soon. It feels soooo good to have energy and my life back. I was also so greatful for finding this website before I had mine. What a life saver.
Hey Amy: Actually, I'm right there with you and WANT the surgery. I have no problem with having the ileostomy and I'm SO READY for it. When I found out my surgery date wasn't till May 19th, I wasn't sure that I could *wait* that long...I wanted it NOW! But, to get the surgeon I want, I have to wait. Sigh. But no, this is the first club I've ever wanted to join---I've been a fan of the Groucho Marx quote: "I don't care to belong to a club that will have people like me as a member."

Kris and Sue: Yes, if it wasn't for the ileostomy experiences I read on this site, I don't know that I would have been ready to take the steps. The collective wisdom of people I've never met far exceeds the collective wisdom of the myself and the fine people who are in my life!