Colostomy Questions

[StarLord]

Due to my relatively ineffective BP, it has been suggested by two doctors, an greater number of nurses, and some others that I get a colostomy. I've checked the threads and it sounds like a good idea but I have a few questions for which I couldn't find answers.

1. I often wear a back brace for trunk stability and I am concerned that it will interfere with the colostomy bag (or vice versa, take your pick).

2. Which is better, an "assending" colostomy or a "descending" colostomy?

3. How does one empty a colostomy bag from a chair? Transferring to a toilet might not aways be an option.

4. WIll it interfere with a SP catheter? I am, perhaps unneccesarily, concerned with cross contamination.

Thanks.

[Patton57]

I'm a low complete quad 22 yrs post SCI and 17 yrs with a descending colostomy.

Overall, I'm glad that I got it back in the early 90's but there are trade offs which I'd be happy to PM to you. Just send me an initial PM and I'll respond to your questions and give you the pros and cons that I've experienced.

[rdf]

Why use PM? I'm sure there are many here, including myself, who'd like to hear about your experience. Unless you don't feel comfortable, then I understand.

I'm a low complete quad 22 yrs post SCI and 17 yrs with a descending colostomy.

Overall, I'm glad that I got it back in the early 90's but there are trade offs which I'd be happy to PM to you. Just send me an initial PM and I'll respond to your questions and give you the pros and cons that I've experienced.

[robeec]

i have a "collectomy" since '90; i'm c5c, 28yrs post. i also have a supra, and i thought the same re contamination. every once in awhile i would get a wicked odor wafting up. turned out it was certain foods like onions retain on the supra's stoma and not the colostomy.

advice: learn to irrigate your crap-detour, and you will be very glad you did.

[robeec]

http://www.youtube.com/watch?v=g14kbuw1fU8
check this bloke out

[Patton57]

Why use PM? I'm sure there are many here, including myself, who'd like to hear about your experience. Unless you don't feel comfortable, then I understand.

Okay, here goes!

Background:
I'm a complete quad, 22 yrs post SCI with spotty C8 function in my left arm and mostly C7 function in my right arm (diagonal burst fracture of C7; the surgeon who stabilized, said cord was pretty much demolished at fracture site). I would describe my lifestyle as totally independent (as much as you can be at this level at least).

I left rehab with an every other day bowel program. I maintained it pretty well for three years. I pretty much ate a meat and potatoes type diet (2-3 fruits and vegetables a day). My bowel program and shower combo took 45-60 minutes every other day for the first three years. After three years, I started to really hold myself to a pretty tight schedule to prepare for going to work after completing university. I developed pretty severe hemmorhoidal bleeding then. I'm guessing I was losing 1-2 pints every other day. I had to lie down for 2-3 hours after every BP for a year to regain my energy. I then had a hemmorhoidectomy, went on a better diet and didn't have problems for 10 months. The bleeding came back and I had another surgery and it didn't really take.

Colostomy experience:
I then researched the colostomy option quite a bit and had the surgery for it a few months later. I had a general surgeon do the surgery. We had a preliminary appointment and he said that a descending colostomy would probably be best. The stool smell is less strong the further you go down the intestine. This can also help with odor control if you use a bag. I chose to have the stoma (1-1/8 inch diameter) located, 1-2 inches lower than and about 4 inches to the left of my belly button. The incision is a vertical six inch line starting at my belly button. After my surgery my surgeon said he also removed some redundant large intestine (I haven't needed it yet but I'll be looking him up or his lawyer if I do).

The ostomy nurses were mostly helpful for the months surrounding the surgery. A month or two after the surgery, I reached the limits of the ostomy nurses and realized that this was now my problem. There are two different ostomy management programs out there that I have heard of. I'm mostly familiar with using a pouch to continuously collect waste whereas others irrigate once a day. After studying the two methods I thought that using a bag and draining it would better compliment my other limitations and lifestyle. I have never irrigated, so I won't even try to explain it.

I use a drainable pouch and usually empty it in the morning when I'm tending to all the other SCI stuff. I apply a new bag every 2-3 days and drain it 1-2 times a day in between changes. I try to apply a new bag when I shower (try not to eat within 9 hours of showering and leave old bag on until the end of your shower and then remove it). It takes about 20-30 minutes to apply a new bag well and about 10-15 minutes to add water to the bag and drain it into a Ziploc bag. If you have a quad-slip/drop or other mishap you'll being cleaning up crap for a while (this is one of the bad parts about being "totally independent").

I have used Edgepark Surgical's mail order service for monthly supply orders and know every good pharmacy (none of the chains) within a 50 mile radius of wherever I happen to be living or visiting, in case I'm running short on supplies. For my program I use:

- A cut-to-fit 10" inch drainable (clear; use opaque if clear takes away from sex) pouch
- One skin prep
- Stoma paste

Some tips that I've learned along the way are:
- Don't take short cuts when putting on a new bag (like skipping using skin prep and stoma paste)
- Don't empty your bag or the air that builds up in your bag in workplace bathrooms
- After every transfer make sure your bag clip does not come undone
- Empty your bag before sex
- Don't bend over in your chair and pick something up off the ground on your colostomy side (breaks down the seal gradually)
- Keep your elbow against your side and ready to muffle any sounds in public situations (meetings at work, during prayer at church, weddings, funerals,...)
- You'll become a little paranoid about random foul odors (it will often be you and you will want to be the first one to know it is you)
- A good diet makes everything that much easier and more predictable

Complications that have arisen with me are:
- Developed eczema from the outer tape ring on the colostomy bag
- Skin breaks down around stoma and can't get a good seal for your bag
- Didn't check the clip and it popped loose
- Pungent mucus drains from rectum even though you have a colostomy (for me it is 2-3 times a month and mostly occurs during showers; my doctor said this is actually healthy)
- Pants zippers and bags don't play well together (can puncture a bag when getting dressed and you won't know until the bag fills later in the day and there is an air leak)
- Exaggerates a quad belly a little more than normal

Misc points:
- If intestine is healthy it can be reconnected if need be (if a cure comes around, perhaps)
- Don't go on an eating binge at Taco Bell unless you are prepared for the consequences
- Most types of nuts complicate the wave patterns in your intestine (for those with colostomies this can create spasms or tugging around the stoma site and jeopardize the bags seal)
- You'll quickly learn the foods that cause odor and gas and eliminate them from your diet
- The literature about folks that have had a colostomy for a long time (10 years +) is a little thin

Answers to your questions:
1) If the brace covers your colostomy bag then it could cause problems with your bag as it fills (Is the brace a spandex type material or is it a plastic shell of sorts?; If it is a spandex material it could cause odor issues; I've found that if the bag is squeezed by clothes or contact during sex that the bag's odor is easier to smell)
2) Waste is less pungent and more formed the further you go down the intestine
3) I've found a good Ziploc bag that seals 100% is most effective but it must be removed from the house or car quickly
4) I do a straight catch once in the morning and wear a Texan with a leg bag throughout the day. Occasionally, the colostomy bag will blow out/off (usually associated with eating binges and/or excessive gas) and waste ends up everywhere around the midsection (this can be worked around by showering first and then tending to your other urinary needs when you are more clean)

Good luck with what you decide and I hope that it all works out for you.

[StarLord]

robeec and Patton thanks for the great advice, it's greatly appreciated and helps alot.

It sounds like you both have the "descending" kind.

As for my brace, I'm a T5 incomplete and have scoliosis, and it's a plastic TLSO shell type thing and front ends up kind of low. I suppose I could have it altered.

I think the baggie idea as an intermediary container is a great one for emptying from a chair. The only way I could figure it out was to take the bag off and empty it, but it seemed "dangerous" and subject to mishaps.

I already have a SP catheter. Patton, you said that you have occasionally had a blow off and I was wondering how often? robeec, have you ever had a blow off and, if so, how did it affect your SP stoma?

Thanks again for the great advice.

[sjean423]

The baggie bit works best when away from home, as it is easy to always have one available. But at home I find a large plastic cup (the disposable kind, like the "solo" brand) works better. It is easier to hold on to. Empty into the cup, and then into the toilet. Directly from bag to toilet it too far from a chair. I wash it out after, and reuse it a few times before throwing it away.

[Patton57]

Patton, you said that you have occasionally had a blow off and I was wondering how often?

It really depends on your diet. I'm defining a blow out/off as the bag's capacity being exceeded either with waste or gas. If you are awake and you notice it occuring then you can intervene and it's not a problem. If you are a sleep then you might wake up too late.

If you want to eat without accountability and you occasionally do so excessively then you can probably expect a potential blow out/off. Hopefully, you'll catch it in time. I've found it is wise to eat moderately.

An example of two things that give me trouble are:
1) If I eat one bowl of cereal then I am fine. If I have two or more then that will create too much gas and I can expect to have to empty the air in my bag in 4-12 hours. Air is easy to empty.
2) If I have one bean burrito at Taco Bell I am fine. If I have two or more then that will create too much waste and I can expect to have to empty the volume in my bag in 4-12 hours. Volume is a little more involved when emptying.

Again, good luck with whatever you decide.

[rdf]

Thanks Patton, good stuff. Appreciate it.