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04-06-2010, 08:58 AM   #1
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Stoma

Hi,

I have persistent crohn's of the rectum and lower colon for the last 30 years... It wasn't much of a problem for the first 20 but the last decade has been tedious to say the least!

Although I have recovered from fistulae and severe disease my crohn's is still active in the moderate range.

I have a couple of choices on the table. Basically, I can continue to take steroid enemas and live a relatively comfortable existence but with the fear of diarrhea and of commuting for work ( I currently work from home and would like to go out and get a job ) or I can opt for a reversible stoma.

What I'm really looking for is advice on the stoma option. How have the community got on with stomas vs. being ill with Crohn's. Anyone had it reversed? What's day to day life like managing a stoma?

Thanks,

Nick
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================================================== ==================================
Crohn's disease in rectum and Lower left side
Diagnosed in 1983
Taking Imuran (Azathioprine) 125mg
Asacolon (Mesalazine) 3200mg
Tried Remicade / Humira / Vedolizumab but no joy
04-06-2010, 12:13 PM   #2
Fruitcake
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Join Date: Mar 2010
Hi Nick

I've had my stoma for 10 years, but to treat Ulcerative Colitis. Some of the symptoms are the same but it's confined to the colon.

Having the option of a reversible stoma could mean your affected colon would have time to rest and recover, then later on you could well be in remission if you have it reversed so you'd have a choice.

It is a HUGE change to deal with,but it saved my life. Although I was devestated when I needed a stoma, I now wish I'd had it done much sooner. It doesn't stop me doing anything and if I had to choose between feeling great and having a stoma or not having one but suffering with UC, I'd choose my stoma everytime!

Most of the things I found difficult were probably in my mind... body image, being different to everyone else, change of diet, deciding if I should keep it secret or tell people and worrying what they'd think.

Day to day it took a while to get used to, but now I hardly give it a second thought. Nobody would know I had a stoma, I still go swimming, go on holiday, avoid only a few foods, drink alcohol..all things I couldn't do when I was ill.

Sorry for the long reply! Hope it was some help

Lyndsey x
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04-06-2010, 01:16 PM   #3
kello82
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Join Date: Nov 2008
hi dan!
sorry to hear that youre not feeling well. we all know too well how that fear prevents us from leaving home =(

i got my stoma about a year ago, i have an ileostomy. some of my problems were similar to yours, i had bad crohns in my rectum and lower third of my colon. fistulas, abcesses, incontinence, stricture...all that fun stuff.
it was a good 4 years ago that an ostomy was first recommended to me by a dr. just like fruitckae said, it was devastating. i thought it was the worst thing possible and really did everything i could to avoid it thru the years.
finally though i was just too sick to get out of bed and not able to eat, so i went for it.
the surgery went very well, its a pretty simple surgery small incision and such, for me i was in a lot of pain coming out of the OR, but once they got the meds adjusted i was golden.
i gained a good ten pounds in just the 1st month after surgery, so i know it was definitly the right choice for me. due to some pretty rare complications, im still in limbo as far as health, but minus those things, i think i would be relatively healthy at this point.

the immediate relief was the cessation of the cramping of taking a poo. that was the most painful symptom for me, and i LOVE that all i have to do now is just open a little clip
also as i said i was super incontinent, esp in the last month or so before the surg. i was really crapping myself at least 3 times a day, and it was a nightmare to make the trip to nyc to see the doc. the fear of the waves of cramps coming over me was paralyzing cause i knew i couldnt stop it onbce it started.

i do still "poo" from my butt in a way, my colon is still inside me, i did not opt for the total colectomy yet. it seems likely, but im trying to hold on to it. but, since its still there it still produces the mucous that is normal to aid in digestion. also more mucous gets produced when youre infmaed too, so that has to come out and there is sometimes a lot of it. so at times i still get those horrible cramps and have 5 seconds to get to the toilet before the mucous floods out. but, it is much better than having the sh*ts all the time

im sure others will comment, not everyone has this mucous though, some people dont have that feeling to "go" as i do.

as far as managing the stoma it becomes SO easy after a while. in the beginning it is rough as through trial and error you have to figure out which products work best for your stoma shape, skin type, belly shape...all these things make each persons product need different. figuring out the best way to shower and going swimming for the first time, these are just the little humps that you get over and learn from. many people have no problem getting their appys wet, but for me it tends to make things loose, so i dont count on being able to get in water and not have to change it. part of that may have to do with the problems i am having on my skin though too, but what i have is not really common so i dont want to worry you!

ive discovered that the ostomy is really unnoticeable. i still wear my slim tees and low rise jeans and it hardly shows. if i am going to be out for a longer period of time, i opt for a looser shirt over top of a tight tank top, cause as the pouch gets full it obviously becomes more visible. but empty it and its flat as a pancake again

i made an ostomy clothing thread around here somewhere.... shows what it looks like under actual clothes. believe it or not i could not find ONE photo of and appy UNDER clothing before my surgery! i wanted to see what the rest of the world would see daily you know? thats aroung here somewhere....

the question of smell is usually a concern, but i find it not too difficult to manage. my poo smells really bad right now idk why, it seems to fluctuate, but theres a ton of deoderant products out there to help and even some household tricks that people have had success with. there is even an internal deoderant called Devrom that you take as a pill and supposedly it neutralizes your poo? im thinking about looking into that.

ok i guess thats it for now, anything else ask away, good luck!
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04-06-2010, 01:42 PM   #4
Jeff D.
Senior Member
 
Join Date: Apr 2006
Hey Nick, I'm in a similar situation. For years my docs have been wanting me to get a stoma and I've been putting them off. I've finally come to the point that I actually want one. I can tell you about the stoma and I'll probably write about my story after I have the surgery so you can see what I go through with different appliances and such as Kelly was talking about. I'm praying for you that you don't have to have one.
04-06-2010, 02:16 PM   #5
Lydia
Senior Member
 
Join Date: Mar 2010
I had a stoma for 6 months. My rectum and descending colon (what was left of it, they removed 18 inches of my bowel) healed up nicely in that time and I was able to have it reversed. I had one bad flare after the reversal and then went into remission for a year on immuran. I stayed in remission for about 3 more years med free. I didnt find smell an issue, unless I went to the bathroom to empty my bag. I found the bag was pretty good at containing it all. I had a colostomy which from what I understand has to be emptied less often than an illeostomy. I only needed to empty my bag about 2 or 3 times a day tops. I also found it easy to hide and most people didnt even know about my colostomy until I had it reversed.

I was almost to the point of needed surgery again according to my last scope but I think the remicade is going to save my ass, literally speaking. lol.

Last edited by Lydia; 04-06-2010 at 02:21 PM.
04-06-2010, 02:21 PM   #6
Nyx
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Join Date: Jan 2010
Location: Barrie, Ontario

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I love my stoma!!! As Kello said, had I known the relief I get from it, I'd have opted for it sooner.

Remarkably, I don't have much to add, Kello pretty much covered everything that I wanted to say...lol Once you get used to it, it's very easy to live with...I barely notice mine anymore (I just got it in December so it's fairly new).

In regards to smell...I just put a splash of mouthwash in my bag and that seems to help alot! It's much cheaper than the deodorants you can buy and works better, in my experience.

Good luck to you whatever you decide to do
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Cindy

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)!!

04-07-2010, 06:45 AM   #7
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Thanks everyone, some really great info there. It's just nice to know other people are in the same boat as well.

I'm leaning towards going with the stoma. My disease isn't acute at the moment but it's just bloody relentless.

I don't know whether I would be looking at an ileostomy or a colostomy. My disease is at the very tail end of the colon / rectum.

How many times do you have to change the bag a day? Does it make noises (strange question but I met a guy once who said it did)?

How long did it take for you to recover from surgery?

I haven't had a drink in about 5 years because of the disease. I will be sinking a very nice bottle of red if this goes through. It'll be AA forums for me next year! :-)
04-07-2010, 07:48 AM   #8
suzielouwhoo
New Member
 
Join Date: Apr 2010
Location: Ontario
hello,
just want to share my experience with you. i got to the point where i was so sick that a temporary colostomy was my only option. i wish i had known about this site then and i probably would have done things much differently.

because they thought it would be a temporary thing the surgeon decided to do a looped transverse colostomy and had i known then what i know now i would have said NO! when they do a looped one they bring a loop of your colon out through your abdomen and slice it on one side, then sew all the edges down and put tubes under the loop to keep it out while it heals. my stoma is big and there are opening on two sides rather than just in the middle. for the first while after surgery it seemed ok but as my weight came back up to normal the stoma seemed to get larger.

people then started asking me when i was due (on more than one occasion. six or seven actually!) and i was devastated. now that i have had it for 3 1/2 years i have figured out how to dress but had i known all of this then i would have opted for a fixed end colostomy where they sever the colon and just sew off the one end and bring the open end to the surface. much smaller and easier to deal with.

the stoma itself was a lifesaver. i could eat and was not in pain every minute of every day. that is so worth all the crap. but i just wanted to give you my story so that you can have the information i never got. take care and be well.

susan
04-07-2010, 09:20 AM   #9
Nyx
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Join Date: Jan 2010
Location: Barrie, Ontario

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How many times do you have to change the bag a day? Does it make noises (strange question but I met a guy once who said it did)?

How long did it take for you to recover from surgery?

I change my bag between 1 and 3 times a day (depending on what I ate the day before...lol). And yes, it makes noises!! They're called farts! lol It was a bit mortifying at first, but now that people know that I have a colostomy, it's pretty much ignored. And when it happens in public I just keep on doing whatever I was doing and pretend it wasn't me...lol

I took about 6 weeks in total to completely recover from the surgery. I was up and walking after about a week and a half (but I had other complications during the surgery that didn't help in that area). From what I've read, most people spend a week in hospital and are released. I was in for 24 days because of an infection and blood clots in my lungs...not fun!! But even with all that, I felt much better after about 2 weeks.

Hope this has helped...good luck to you!
04-07-2010, 10:09 AM   #10
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Shitballs, eh? The old farting... At least now I will have an excuse for not holding in.

Is this farting a regular occurrence? The answer will not be any reflection on you. I know you're a lady :-)
04-07-2010, 11:11 AM   #11
bruscar
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Join Date: Jan 2009
Location: wexford, Ireland
Hi there i am on my second run with an ileostony and it is now permanent.

I had the first one reversed and then they found active disease in the ends of the earth !! . . . so i had that all removed and had my second stoma constructed.

I must admit it takes getting used to and quite annoying but when you think about the suffering that we all went and continue to go through, then the stoma is a lifesaver.

Feel free to ask me absolutey anything you like for my pride is at the hospital !! somewhere !!

I try to get on here every week and sometimes a few times a week and it really does help.

Good luck and chin up to you my friend !!!
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5 surgeries,(so far!)Crohn's colitis,permanent ileostomy,post herpatic neuralgia (from shingles)
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