Crohn's Disease Forum » Surgery » Stoma Subforum » Is a stoma really for life?

07-02-2010, 08:10 PM   #1
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Join Date: Mar 2010
Location: New Jersey
Is a stoma really for life?

Sometimes I look at my bag (or pouch if you like), and can't believe this is for life. On the various message boards, some people with temporary ostomies talk about how they can't wait for reversal, or how glad they are that they can go back (to normal?) with a J pouch.

When I read that, I always think, gee I really have no choice. All parts were remvoved. This is it for me.

As Nyx always said, it is getting better. I am appreciating the freedom and control my ostomy is giving me. No more running to the bathroom at work trying and praying to hold it in while clenching as hard as I could.

But, this bag will always be hanging from my body when I look in the mirror after a shower.

Well, thats it - I just felt like whinning a bit.
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
07-02-2010, 10:43 PM   #2
Jer's Girl
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Join Date: Oct 2009
Location: Albuqerque, New Mexico
I'm sorry if I have been insensitive Joe. I would like to get a reversal, but I am still not sure if I will be able to yet or not. I am having trouble with the idea that this might be permanent too, but at least it isn't certain for me yet. That reality must really hit hard from time to time.

I think the longer that we have this, the easier it will be to see it as a part of us. Whatever happens, I know that living with this is better than being in the pain I was in before.

I hope that you are feeling better about things soon.
07-02-2010, 11:33 PM   #3
Jeff D.
Senior Member
Join Date: Apr 2006
Hey Joe, I understand where you are coming from completely. Although I'm one of those with a temporary ostomy it's most likely that it will become permanent in the future. My surgeon pretty much told me this is a permanent thing unless something comes along that can heal scar tissue. I'm not so phased anymore by this reality because this thing has really been years in the making so I've had quite a bit of time to get my head wrapped around the idea of having this for life. I'll keep you in my prayers my friend.
07-03-2010, 05:18 AM   #4
Vivvian's Mommy
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Join Date: May 2010

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I so understand with having it for years on and off and then the year I started getting abcesses was the year they said I would have it permnantly(2004).I just graduated a year before from high school and had started college that I have never got to finish even yet.I asked the doctor if we could hold off till after summer being it was the first for me offically after school w/o a pouch.He agreed.I went and got my first bikini and bam 2 days before summer started I started having internal bleeding with 2 orange size abcesses which come to find out from my last surgery that the surgeon on call never fully drained so they got bigger.But with having it so long I sometimes forget its even there now.I mean I really only remember its there if it gets too full or my daughter is jumping on me and accidently hits it.Or the times when I have an allergic reaction that it flares so bad it leaks.But thats about it other then to change it.LOL.Life goes on and it tends to be an everyday thing so it just is there I guess.
Living Life as it Comes
Diagnosis-Crohn's Disease and Ulcerative Colitis since 1997 at age 12
Medication-Humira every 2weeks 40mg and Imuran 100mg,B-12 drops and Multi-Vitamin
07-03-2010, 09:53 AM   #5
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Join Date: Jan 2010
Location: Barrie, Ontario

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∑ Stoma
Sorry you're having a hard time with this Joe. I guess for me, I didn't really have time to let the permanency thing sink in. I just woke up with this and was told you're stuck with it for the rest of your life. There was no forethought on my part, no decisions to be made...I think that's easier to grasp. If you don't have a choice, you either accept it or you don't. I chose to accept it and embrace it. After all, as we all know, it's much better than the alternative.

Take care!

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

07-03-2010, 12:23 PM   #6
mum with a dogdy tum
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Join Date: Oct 2007
Location: eastbourne, United Kingdom
i dont look in the mirror and think "this is it for me", i am thankfull for my bag. i dont see it as abnormal or something to be ashamed off. we even celebrate its birthday!!
crohns diagonsed dec 12th 1997

fred (stoma) was born on sept 10th 2003

life is like a loo roll, the nearer to the end you get the faster it goes.

memories are what makes life, life is what makes memories, make them good

sharon x
07-03-2010, 01:00 PM   #7
Senior Member
Join Date: Jan 2010
Hey Joe,
I will start by saying that you have been an inspiration to many on this site, and I canít phantom going next week for my surgery (permanent) without your support and guidance.
Itís ok to feel down once a while. This is a major surgery, with life changing consequences. In our case the dysplasia made the decision for us and we have no choice. More importantly, you will be around to enjoy being with your family and friends, hopefully adding value to this planet we live in.
As a quick prospective story, which put things in prospective for me, I have a close army friend that was a combat vet, and his vehicle was blown by a road-side bomb and he lost both his legs from the knee down, an arm and an eye. With shear will power and determination, (like our Nyx Cindy hereÖ) he recovered and embraced life and new reality. After a recovery period, he got married and has 3 kids and is holding a full time job. As you might imagine, he deals every day with the some harsh situations.
When I realized my surgery will be permanent, I thought about him and many of you with permanent ostomy. I researched every option to not have to go through with surgery and came to the conclusion that the permanent surgery is the only choice.
My thoughts are with you.
-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!

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