[nail 34]

I've been a para since 1994, and my bowel program just is not working. My colon seems to have just about shut down. I have had to cancel two colonoscopies because I couldn't complete the "bowel cleansing" needed. I just vomit up the liquid that's supposed to clean me out.

So, I'm considering asking for a colostomy. What I'd like to find out are the pros and cons of getting the procedure. How much will it affect my social life? Are there dietary restrictions? What are the mechanics of dealing with it? Stuff like that. Right now, it appears that it would improve my quality of life.

[kewlcatkez]

nail 34, on Dec 6 2007, 02:14 PM, said:

I've been a para since 1994, and my bowel program just is not working. My colon seems to have just about shut down. I have had to cancel two colonoscopies because I couldn't complete the "bowel cleansing" needed. I just vomit up the liquid that's supposed to clean me out.

So, I'm considering asking for a colostomy. What I'd like to find out are the pros and cons of getting the procedure. How much will it affect my social life? Are there dietary restrictions? What are the mechanics of dealing with it? Stuff like that. Right now, it appears that it would improve my quality of life.

Hi there,

I haven't personally got a colostomy, although I have nursed individuals with them and also my Sister in law had 4/5 of her Small intestine removed resulting in a dudenostomy/ileostomy. Her surgery was an emergency situation due to a massive clot, so she didnt have any bowel preparation and her recovery was hampered greatly by infection from Faecal fluid spilage when her bowel perforated at the clot site. It is rare but a consideration..

I think that you will find that, in most cases, "bowel Preparation" is required before Colostomy surgery. I know that some surgeons do perform elective colostomy/ileostomy/duodenostomy surgeries without preparing the bowel ( ie cleaning it out) but most Gastroenterologists will not due to the perceived/actual possible risk of Peritonitis or other gastric complications ( due to faecal fluids/stool contaminating the insides).

You should request to speak with the Surgeon and ask for his/her advice on how to properly prepare your bowel in the circumstances you are presented with. There are other options to the oral medications, dependent on your SCI level and any other health concerns.

I hTh

I am sure that others with personal experiences of colostomies will give you more first hand experiences,

Please do ask if you wish me to expand or clarify anything I have written here..
Take care and let us know how you go on,

K

[Illinois Boy]

nail 34, on Dec 6 2007, 08:14 AM, said:

I've been a para since 1994, and my bowel program just is not working. My colon seems to have just about shut down. I have had to cancel two colonoscopies because I couldn't complete the "bowel cleansing" needed. I just vomit up the liquid that's supposed to clean me out.

So, I'm considering asking for a colostomy. What I'd like to find out are the pros and cons of getting the procedure. How much will it affect my social life? Are there dietary restrictions? What are the mechanics of dealing with it? Stuff like that. Right now, it appears that it would improve my quality of life.

I had to have one because of a skin breakdown near my ass!

The procedure was a couple little incisions....
I can eat whatever I want...... No restrictions......
My wife takes care of it for me.... I would never recommend it or wouldn't do it again!
It SUCKS!
I don't like going out anymore because of it.........

Jim

This post has been edited by Illinois Boy: 06 December 2007 - 07:26 PM

[Avocado Baby]

Hey there,

I have something like this although I'm not sure what the proper name for it is. It's a 'Mic-key button'. It's a balloon that goes into my bowel with a stem attached to a button type thing that sits on the outside of a stoma in my stomach. You put water through it from a bag (Like a drip bag) and abracadaba...the bowel is stimulated by the water. It works really well. The only problem is the leakage I get from it around the site of the button. I'm going to see someone about that soon but, otherwise I'd really recommend it cos it's more 'natural' than sticking things up the other way.

[allis53ca]

i got a voluntary colostomy 2 years ago..it is the best thing i've done since my injury..i love it and would never go back..it was the literal difference to my ever being independent again...i am quad no hands and easily take care of it myself

[lam]

allis53ca, on Dec 30 2007, 10:41 PM, said:

i got a voluntary colostomy 2 years ago..it is the best thing i've done since my injury..i love it and would never go back..it was the literal difference to my ever being independent again...i am quad no hands and easily take care of it myself

I'm considering having the surgery for my son, after several years of bowel accidents and trying every possible means to train his bowel. but obviously very concerned about putting him through a surgery and dealing with the colostomy. can you give information about your experience with it. he is a t4 parapalegic

[T0P]

lam, on Jun 25 2009, 11:21 AM, said:

I'm considering having the surgery for my son, after several years of bowel accidents and trying every possible means to train his bowel. but obviously very concerned about putting him through a surgery and dealing with the colostomy. can you give information about your experience with it. he is a t4 parapalegic

lam,
I understand your concern, I too would like some input on this.
I have been researching this for about 2 years now debating on whether or not to have it done. I have talked to many people who have had them done and everyone I have talked to has told me it was the single most improvement for their life.

They are now reversible so if by chance later on in life you want to reverse it the option is there. The only setback is with any kind of surgery there is risk involved. As many surgery's as I have had I never dwell on the risks but for others this may be an issue.

I do not have one so I can only speak for those whom I have talked to. I live close to a VA SCI hospital (20 min drive) and have met many SCI people. I have yet to talk to anyone that has a colostomy ever say they did not like it. The only unanimous regret was that they waited so long to get one.

The only ones I have talked to that do not recommend it are those that do not have it and have no bowel care problems.

Here are a couple of links that may help out.

The Joy of Colostomy

Colostomies: A Radical Approach to Bowel Management

[geek1]

I have been paralysed 4 yrs now and I got a colostomy 8 months after the car wreck.A colostomy is the best {at least for me}.You personally care for it yourself ,i mean mount it usually on your left lower side ,drain if stool is loose and remove it as when needed.You can GO whilst you are out shopping,drinking,etc no one will ever know it.Its so air tight that at times you must keep releasing air so it does not pop up like an over-inflated ball.If you dont release GAS ,that may cause bursting of the bag and stoll ,if any has accumulated ,can spill out.My surgery is reversable {you may opt for that }in case in future.
I strongly FROM EXPERIENCE ,recommend colostomy bags.Ask for odour killer liquid thats applied in the bag when you mount a new one ,its a very effective odour killer.
Hopefully this may help other people .

[Ratticis]

When I was first injured they had to give me an illiostosmy (Ruptured bowel in 2 places). Some definite cons are the risk of it comming detached. I wake up more than I care too soaking in my own fecal matter But lately i've been setting an alarm to wake me up every 4 hours or so to check and empty it if i need. Works ok unless i'm tired enough to ignore the alarm. Other bad partr is the smell! There's some foods that of course help with or make this worse, and there is a deoderizer you can get, but it's not cheap. I've heard of some other tricks to help with it.
Now, on the other hand, they were originally going to reverse it, but I liked how easy it was to empty and manage most of the time. Don't have to worry about having room or being able to get onto a toilet. It doesn't stop me from going out ever, just got to make sure you pay attention to it, check every so often. And sometimes the sounds aren't to plesent, but when I'm around people who know what's going on they understand and a few times i've explained it to others who didn't, then it's "you're so amazing to deal with all that" ;)
From what i hear the smell and thickness is better with a collostomy (large intestine) than an illiostomy (small intestine). Good luck with whatever you decide!

Oh! Also i would recomend a 1 piece bag/flange with an ait vent

This post has been edited by Ratticis: 01 July 2009 - 03:51 AM

[Jax]

I've been going through run-arounds with doctors about bowel problems for a while now. I have to say that if a colostomy can be avoided, definitely don't have one. For some, the colostomy may be the only thing that will work, but for many, I have seen a MUCH BETTER surgical alternative (if surgery is your preferred method). It's called the Antegrade Continence Enema. It has been used in spina-bifida for some time now, and I have heard of and met SCI paras who have had it (there are a couple on this forum as well). It has been life changing for them. A catheter and a little water, and you're good to go every other day when you want.

I have tried everything else available here in the US (short of ordering an inflatable enema system through a fetish site), and nothing has worked. I'm 26, active, and have seen how much of a problem a colostomy can be for someone active. Even not-so-active people have had problems with them. Everyone I've known and heard from who has the ACE has said it's great. Never heard a complaint about it. (Doesn't mean there's not one out there.)

On another note : For anyone (particularly in the US where the Peristeen still isn't available) who thinks about the Zassi system from Hollister Medical, it is NOT made for intermittent use. It is made to be left in someone when in a hospital. I've got one here that's useless to me. (Part of the run-around I've gotten from the doctor the rehab counselor sent me to see. I am now in line for the ACE procedure with a doctor here. I will post when I get to start using it and let everyone know how it turns out for me.