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Thread: To colostomy or not to colostomy, that is the question.

  1. #1

    Cool To colostomy or not to colostomy, that is the question.

    For starters I am a male c5/6 27yo 6y post. I have been having alot of issues with my bowel program since I started it. I use a magic bullet every night. I get alot of constipation and AD during the passage of stool. I also have had increased spasms n pain over the past year or two. Its to the point where I'm stuck in bed most the day because I can only sit up so long without the underlying AD feeling creeping up. Its like my whole body gets tight(ready to spasm hard), I get anxious, my upper gut/lower chest tightens up, feel bloated, it gets hard to breath, its hard to focus, n i feel slightly dizzy. Then I lay down and/or pass gas(very little unless dig stim) and feel better(most of the time). Also after BP's I sometimes have to fight real AD symptoms for hours(sweats, headache, face tingling).

    With all that being said I have seriously considered getting a colostomy. It can't be any worse that what I'm dealing with, right? I've read tons of great threads on here about them and the common saying is "I should of done it sooner." I've already seen a surgeon who is ready to do it but I can't bring myself to schedule he surgery. I keep getting cold feet.. I just feel like I'm defacing my precious broken body even further.

    Ok.. Sorry for the rant but I guess I'm just looking for some encouragement to push me in the right direction.

    Also(sorry to be long):

    1) How does the colostomy get along with a supra pubic catheter?

    2) I'm pretty hairy.. Could that seriously complicate the adhering of the bags?

  2. #2
    Senior Member
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    I had MASSIVE abdominal issues from accident. Colostomy they did to me, with these issues, LEAKED ALL OVER THE PLACE. However, my final surgery was UNDO the entire thing and try to put ab back together. All I can say is more then happy and was all undone.
    Last edited by rlmtrhmiles; 04-09-2013 at 05:31 PM. Reason: typo

  3. #3
    Senior Member Cowboys_Place's Avatar
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    Have you had any other work done as an A colonoscopy to make sure there isn't an underlying problem? As for getting a colostomy I just had the surgery done in September after being undecided for a year. I was having the opposite problem of crapping my pants all the time and now I think it was the BEST decision I've ever made when it comes to SCI.

    The support and encouragement I got from our fellow brothers and sisters on here was extremely helpful!! And it continues to be I have no doubt you will find that same satisfaction should you choose to have this procedure done.
    I don't know if it will solve your problem that's for you and your Dr. To discuss but could it really be any worse?
    As for the hairy issue you'll definitely up to shave with an electric razor so the wayfar will stick but that shouldn't be too big of an issue..

    I wish you success in whatever decision you make :-)
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  4. #4
    I went 7 yrs. and never managed to get a working bowel program. I have had my colostomy for 2 yrs. Like a lot of people it is the best thing I have done since my injury. I have a sp. too. In the two yrs. I have had only one leak due to a faulty wafer. I am active everyday.

  5. #5
    Yea I've had ct scans, xrays, colonoscopies, endoscopies, and rectal exams. All to no avail. This seems to be the final road to take(or deal with AD n pain for the rest of my days). My surgeon said it'll be on the left as far down the colon as he can go. Therefore, it should be somewhat solid stool. I understand constipation can even still be an issue but I can deal with it better if I can take something n go on my own time. Rather that waiting till the next day. Not to mention no AD, pain, and bleeding(hopefully).

    The more I read/talk about it the more sense it makes.. I really appreciate all of your words of wisdom. I think I've done enough soul searching to know the right decision.

    I'm just afraid of going under the knife. No Pain No Gain I guess..

    p.s. Cowboy, love the John Wayne quote
    Last edited by Padred123; 04-09-2013 at 08:08 PM.

  6. #6
    Senior Member Tim C.'s Avatar
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    I feel qualified to comment inasmuch as I too, agonized over the "to colo, or not to colo" decision for two years.
    At the risk of alienating a few very top shelf people aground here, I ultimately voted it down. As a disclaimer, I cannot speak for your tolerance of, or severity of AD, that's for you and your MD's to evaluate. However, I certainly had my share of AD, and disfunction with trying to make my BP work time and time again. How envious was I of those who got their BPs done every 2 - 3 days, in little or no time, with little or no pain. 10 years later, I'm still envious, but in comparing myself to them, and to my pre-sci self, I would commonly need at least two bowel movements a day, so why should I think that in post-sci would I be so different? To be sincere here, my rehab doctor insisted I consider the colo in good faith, and I think I did. He gave me references to his other patients and I followed up by speaking to each one. What I found is that they received the procedure as incident to a pre-existing condition, i.e.; severe skin damage in the area, or because of personal preference. Personally, having one hole (sp) already, that I swear was never done right, I wasn't too excited about getting another. Just wasn't for me, I don't care for very loose clothes, I can't care for it myself, I don't always have competent caregiving to trust taking care of it, I don't believe the apparatus won't come loose when transferring. I'm much older than you but I, ultimately still felt kinda young for the thing. I maybe wrong about my luck, but I can't believe it wouldn't fail when in close quarters with someone where I felt modesty would be important to me.

  7. #7
    Senior Member Van Quad's Avatar
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    I would go on a raw food diet for a couple of years before I tried a colostomy! That's pretty extreme!

  8. #8
    colostomies are the $hit

  9. #9
    Tim I was the same pre injury.. a twice a day bm guy. Thats why I I think our bodies are fighting us. We're not allowing em to function as they were designed. Thats why I think it may be the right decision(for me at least).

    I also feel like I'd be more independent with it and can be more spontaneous because right now i feel like my life revolves around my BP. I already worry about crapping my pants or bed(and I do at times). So what the diff of worrying about a bag popping off? I feel like I'd have better control over that.

    Also stopping bowel related AD attacks would be a dream cuz they terrify me anymore. I feel on deaths doorstep every time it happens which for me is multiple times day. I once read on here of someone having a bowel issue while out on a boat n suffering a stroke.

    Lastly, I feel like I'd have a better chance at doing my own bowel care vs doing a BP. For ex not being able to see/reach, do dig stim, insert supp, n more dig stim. I don't know how paras do it by themselves, yet alone quads.


    Quote Originally Posted by Van Quad View Post
    I would go on a raw food diet for a couple of years before I tried a colostomy! That's pretty extreme!
    It doesn't seem to matter what it is that I eat.. n actually alot of veggies make things worse. Do you get AD during ur BP? Makes me wonder how many quads experience these issues.

    Quote Originally Posted by Patton57 View Post
    colostomies are the $hit
    Do u have one? If so how do u like it?
    C5/6 since Feb '07

  10. #10
    Quote Originally Posted by Padred123 View Post
    For starters I am a male c5/6 27yo 6y post. I have been having alot of issues with my bowel program since I started it. I use a magic bullet every night. I get alot of constipation and AD during the passage of stool. I also have had increased spasms n pain over the past year or two. Its to the point where I'm stuck in bed most the day because I can only sit up so long without the underlying AD feeling creeping up. Its like my whole body gets tight(ready to spasm hard), I get anxious, my upper gut/lower chest tightens up, feel bloated, it gets hard to breath, its hard to focus, n i feel slightly dizzy. Then I lay down and/or pass gas(very little unless dig stim) and feel better(most of the time). Also after BP's I sometimes have to fight real AD symptoms for hours(sweats, headache, face tingling).

    With all that being said I have seriously considered getting a colostomy. It can't be any worse that what I'm dealing with, right? I've read tons of great threads on here about them and the common saying is "I should of done it sooner." I've already seen a surgeon who is ready to do it but I can't bring myself to schedule he surgery. I keep getting cold feet.. I just feel like I'm defacing my precious broken body even further.

    Ok.. Sorry for the rant but I guess I'm just looking for some encouragement to push me in the right direction.

    Also(sorry to be long):

    1) How does the colostomy get along with a supra pubic catheter?

    2) I'm pretty hairy.. Could that seriously complicate the adhering of the bags?

    Hi, I've had a temp colostomy for over two years that I love and have decided to keep. It is something that you and your surgeon (hopefully they are familiar with SCI) need to decide.

    I got mine as a temporary colostomy because I was on 3 months of 100% bed rest from a flap surgery. I didn't want any cross contamination since it was so close to the area. I decided to keep the ostomy because it simplified my life and gave me so much freedom and peace of mind.

    I've been irrigating my colostomy for a year and a half and it is even better than the colostomy it's self. I started out taking an hour a day but now that my bowels are used to it it only takes me about 20-30 minutes and I don't have to worry about it again the rest of the day. Sometimes I'm lazy or busy and will wait 2.5 days to irrigate. Makes camping and traveling a breeze!

    There are so many things, tips, tricks, pros, cons ect that I could tell you in this post but I don't want to overwhelm you with information. Please feel free to ask anything you like. I am an open book on this subject.

    I don't have any experience with SP or hairy belly so I can't answer that part but please feel free to contact me on PM or through post if you have any questions. I'm happy to PM you my number if you would rather talk than type. Good luck with your decision. I hope you find the one that works best for you.
    DFW TEXAS- T-10 since March 20th, 1994

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