Colostomy questions

[ChesBay]

pfcs49, After 5yrs I started getting a lot of leakage. Its not a ton but very worrisome. Mostly clear with a tint of brown. I am going to try the immodium.

I don't usually get involved in colostomy discussions, partially because it depresses me that I made the choice to get one in 08'.

I thought I had done my homework, interviewed 4 different surgeons , read several positive articles, New Mobility, CC discussions etc.

I'm glad it works for most folks but it has been a very discouraging decision for me. I too am getting drainage, especially at night. I developed a hernia. The uncertainty of when I am going to have 3 bowel movements in a day versus 3-5 days without a bowel movement is a deterrent to making plans like I used to.
The idea that things are reversible seem a bit of an oversimplification there is a lot of scar tissue, adhesion ,etc.

The surgeon I had planned to do original surgery went to teach @ Vanderbilt shortly before I made my final decision, I liked the practice a lot and though the new surgeon assured me of his competency and experience with SCI I think he was out of his league.

It's a serious surgery. You can't trick the body. My primary objective now at 38 years post injury is to try and avoid any surgeries or hospitals. Don't mean to be a downer but it's how things left me feeling and the impact on quality of life.

[SCI-Nurse]

Not everyone has a positive experience with this - or anything for that matter. You are certainly entitled to your opinion and to sharing here. I think it is important to know the pro's and con's of anything.

I am sorry that your experience has not been a positive one. You may try going to an ostomy nurse (again) and seeing if there are any suggestions they can make.

ckf

[TheRainman]

pfcs49,
I was having the same problem and think I might have solved it. Prior to the problem I changed my eating habits due to weight gain. So instead of eating throughout the day and before sleep I was only eating two big meals a day and going hungry. Which cause me to be gassy. So after about six weeks of this problem I just went back to my old eating habits and about a week later I started to see less discharge. And now its getting to be very little. So I think it has something to do with acid buildup in the stomach.

[pfcs49]

I'm interested to hear how this goes for you, Rainman.

Meanwhile, after consulting w/colo-rectal surgeon, I followed up with the surgeon who did my flap surgery in 2012 because he would need to be involved in removing lower bowel: he would have to do a supporting flap so the upper bowels don't descend into and adhere to lower abdomen.
He told me he would take an erectus muscle (one of the abdominal "six-packs") for that. Since one of my major remaining pleasures is playing the trumpet, I was immediately scared that I would be losing a major element in supporting my air column when playing! Would I trade music for a dry butt?
I visited my primary care dr who is a pulmonary guy and he couldn't answer the question.
I'm in a holding pattern-as much as I hate the diaper, major surgery and the possibility of losing what I value is not on the table at this time.
Boy, this (lack of) shit sucks!!

[Patrick Madsen]

I found taking one Imodium tablet a day stopped all the leaking and watery stool issues. I have ziltch problems associated with the C. since adding the tablet to my daily intake.

[TheRainman]

I found taking one Imodium tablet a day stopped all the leaking and watery stool issues. I have ziltch problems associated with the C. since adding the tablet to my daily intake.

Weeks ago I was going to try that. But my bowel movements are already firm so I was worried about constipation.
Eating seems to be clearing it all up.

[pfcs49]

Weeks ago I was going to try that. But my bowel movements are already firm so I was worried about constipation.
Eating seems to be clearing it all up.

I don't understand how ammonium OR diet would substantially change what kind of effluvia comes out my un-used lower colon/rectum.
Am I wrong?

I have no problem with what exits my ostomy.

[TheRainman]

I don't understand how ammonium OR diet would substantially change what kind of effluvia comes out my un-used lower colon/rectum.
Am I wrong?

I have no problem with what exits my ostomy.

I have no idea why. But when I go hungry I get gassy. And those are the times it seems I have large discharge. I don't like the weight gain, I can tell you that.

[Patton57]

I've had a colostomy for 22 years. Drainage is unpredictable and I don't think it can really be controlled despite the anecdotal observations mentioned in this thread. Diet is key to most happenings with SCI folks. When I eat whatever I feel like my colostomy does whatever it feels like. If I eat a balanced diet of 1800-2200 calories per day things go well. If I eat 2500 one day and 3500 the next and ignore balance I get colostomy surprises. When I drop to 1600-1800 calories per day and my diet is balanced I tend to have days with no bag activity and low volume when it does come.

If I eat an entire Chef Boyardee pizza I can fill two large bags within several hours. This is what I consume when I want to clean myself out.

When I have drainage I get a flush feeling in my face about 15 minutes before it occurs. This happens 1-2 times per year and started in my 5th year. I haven't had it occur in the last 18 months.

[pfcs49]

After 3rd GI opinion, I am reluctantly getting lower GI removed

Colitis is in all likelihood not related to the colostomy. Unfortunately, it occurs in both able bodied and SCI'd people. Having had a colostomy myself, I can tell you that there was NOTHING I did not do when I had it, including swimming. (Mine was reversed and was for other problems than SCI.)

Remember nothing is perfect and it will take a little while for you to work out the kinks in this. But, almost everything I have read or heard from people is positive.

Good luck in your decision - it is one that only you can make.

ckf

As explained to me, I have "diversion colitis" caused by lack of nutrition (poop) to surfaces/colonies of lower bowel and rectum because nothing goes there anymore.
I have dealt with chux and diapers for ~1year now and have lost the ability to be acceptant about it. Last GI Dr says there is high possibility that reconnecting the bowel would resolve it, but NO THANKS!
I guess I'm putting this out as an invitation for a miracle!
This will be complicated surgery: in addition to removing lower bowel, my plastic surgeon (who did my flap in 2012 when I got the colostomy) will need to pull an erectus muscle into my gut to create a support to replace what will be removed. Otherwise, existing intestines, etc will descend and likely become attached to abdominal wall, creating another huge problem.
Comments?

PS: I am very happy with the performance/convenience of my colostomy; the only problem is almost daily mucosal and bloody discharge from butt.