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Crohn's Disease Forum » Surgery » Stoma Subforum » Why I love and hate my stoma


07-07-2010, 03:10 PM   #1
Jer's Girl
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Why I love and hate my stoma

I just wanted to write this down for the people who are new to this life, and let you know that I really do feel this way. Getting a stoma was always my worst fear (Iíve had Crohnís for more than 13 years), and it turns out that it was my salvation. Anyone else feel this way? How do you feel about your stoma? It doesnít have to be all positive. There are some draw backs to living with a pouch too, but I have found most of them (for me) to be miniscule compared to the benefits. It took me a while to get to this point thought, so donít feel bad if you are still struggling with this reality. I think acceptance will come in time.

Why I love my stomaÖ
-I was finally able to put on a few much needed pounds! Whoo hoo! I look like a woman again instead of a teenage boy!
-I can still wear normal clothes and (for the most part) didnít have to alter what I wore at all because of my surgery (except because of the weight gain).
-I have 0 Crohns pain. Seriously. My day to day life has improved 100 percent.
-I am able to work again.
-I no longer have to run to the bathroom all of the time, and that horrible sense of urgency is gone.
-I can eat WHATEVER I WANT (okay, no pop corn). I have never been able to eat without pain. It is my favorite thing ever.
-I donít think the bag itself looks too bad, especially the Coloplast ones. It took some time to adjust but itís just like a part of my body now.
-I can do so much more because I have so much more energy and I no longer have to stay near a bathroom. Traveling is great now!

Why I hate my stomaÖ
-The weight can stop pilling on now! Now that I can absorb nutrients, I am in real danger of getting fat! Boo!
-I canít wear a two piece swimsuit any more (big deal).
-I have had a few hospital stays due to dehydration and blocks. Very very painful.
-Changing the bag is annoying and time consuming.
-I HATE to see my stoma. It still freaks me out.
-My bag leaks for time to time. This is my least favorite thing.

Over all, the stoma is a wonderful thing for a Crohnie. I almost donít feel like a Crohnie anymore at all. My life is so different and so much more full since I got my ileostomy. It was truly the best decision I ever made and whether or not this ends up being permanent, I will never regret getting it. My life was almost unlivable before. Having this done has given me my life back. The longer I have my stoma, the more I accept and appreciate it.

I am getting married in a few weeks, and I donít have to worry that I will be too sick to make it or that I will need to go to the bathroom while I am walking down the aisle. I am so so glad that I had this done before my big day.
07-07-2010, 07:02 PM   #2
CDDad
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Nice post Jer's Girl. We had our surgeries around the same time and it looks like we are on a similar track with acceptance.

I am getting more and more used to having my ostomy. I'm more matter of fact about it now. I don't love it, but I definitely recognize the benefits over my previous condition.

It's also easier to accept and get on with life when the kinks are worked out and the pouching system is working well. Like today at work, I emptied maybe 3 times (eating too much) , and did not worry about it otherwise.

Congrats on the upcoming wedding!
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3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
07-07-2010, 09:07 PM   #3
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congrats from me too!

i agree with the love/hate thing - as much as we know the stoma has improved our health & quality of life, it has its' drawbacks..

for me, i love the fact that it saved my life - that has to be my first statement - there's no doubt i wouldn't be alive if the surgeons hadn't done that operation on me.

i love that i don't have to strain to go to the loo - no more sitting there for ages, getting up, having to go back to the bathroom again 10 minutes later to strain again..

i love that i can eat food without the dread of the Crohn's pain afterwards.

i also love the lack of Crohn's night sweats, looking pale, having blue tinged lips, and spoiling social/family events because i had to lie down or come home..


what i hate about my stoma - where it's sited. it's right where my jeans waistband sits, so i either have to hoik my jeans up which is uncomfortable, or wear low slung ones and put up with the pouch top poking over the top - i have to wear adhesive tape to stick it down so it's not visible beneath my clothes.

i hate the subconscious fear of it leaking when i'm away from home, or in company. in reality this hasn't happened very often over the years - and certainly not where anyone has noticed - but the fear is there all the time.

as much as my fiance has always been brilliant about my stoma, very understanding & supportive, and i have no doubt he loves me completely - i still resent my bag being there when we're cuddling etc..
07-08-2010, 03:39 AM   #4
merrywidow
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great post



you forgot to add the noise a stoma makes!!!


congrats dingbat, i didnt know he had proposed.
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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.

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07-15-2010, 06:17 PM   #5
kello82
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love: i LOL'd when i was changing my app today cuz i realized how much my stoma resembles Jabba the Hud.

hate: my swimsuit from last year doesnt fit to well anymore (though thats a good thing) and its being a super hassle to find a new one.


this thread is fun!
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07-15-2010, 06:19 PM   #6
kello82
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having blue tinged lips
but ding.....if i remember correctly....your lips are a brilliant shade of coral-y orange yes?
07-29-2010, 01:21 PM   #7
Dsnygrl377
 
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I love/hate mine too. I am not comfortable with the noises it makes around people who I dont know....and they are looking at me like, "What was that"?

I've had my life back since I've had my stoma. The only concern fo rme now is dating someone and telling them, and the fear of the guy rejecting me b/c he may think it's 'disgusting' to have a bag. that's the only down part of all this that bothers me the most. Everything else I can live with and have gotten used to since 2004. It could be far worse and no one knows I've got one unless I tell them. I just pray that when the day comes and I do wind up dating someone (My Prince hasn't found me yet..haha) that he will accept me for who I am on the inside.
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Crohn's since 1998; 2000 Colostomy 4 months later/reversal; 2004 Illeostomy to present, with many many surgeries in between.

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07-29-2010, 05:02 PM   #8
acg101
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@ Jer's - Great post girl and congrat for the upcoming wedding.

I am new to the stoma club with barely 3 weeks under my belt. The surgery pains are still very vivid and I have some post op complications. onetheless, I feel so happy about the decision of having the surgery. I suffered, some times teriblly, for 15 years. I fough to keep my colon as it was one of my closest army buddy, and did whatever I had to in order to save it. But in reality, the colon was my enemy that almost killed me. The pathalogy report this week confirmed it. So I look at my stoma, I smile because I dont have ANY Chroh's pain, and no bathroom runs that sometimes I did not make in time, and the horrible side effects of the mega doses of medications I took, important events I have missed.
I am still getting used to my stoma, and today I had my first small leak (very enoying and itchi) after not using the rings and powder.
I still cant eat everything BUT I eat foods I could not have eaten for the past 10 years.
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-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!
07-29-2010, 06:58 PM   #9
semicolon306
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Great Post - We better not let our stoma's read this thou, they might get pissed, LOL.

Likes -
- Not caring where every rest room is
- being able to do things and not have to worry about leaking
- less pain in the abdomen
- able to be more normal (if that is possible)
- No Meds (at this present time)
- FINALLY 10" on my leg, so what it if is plastic

Dislikes -
- Changing out the appliance
- Smell of some foods inside the bag
- seeing the stoma with nothing it
- ITCHINESS
- always having to carry the supplies
- packing more when I go on vacation
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Age 8 - ABD pain, weight loss, no appetite
Age15 - Admitted with rectal bleeding and pain - treated as Colitis
Age 19 - Colon removal with a ileostomy
Age 20 - J Pouch with a Pull through procedure
Age 32 - Complete blockage (due to scar tissue)
Age 34 - Partial blockage and found to have Crohn's
Age 35 - J pouch has a fistula & both connected to spine
Age 36 - Ileostomy and rectum closed
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