Concerns about getting colostomy

[et8683]

I am scheduled to get a sigmoid ostomy in a month and I am having some second thoughts about deciding to get one. I am a C4/C5 tetraplegic and have undergone a daily bowel program for almost 15 years which involves digital stimulation. I have been dealing with rectal pain and bleeding for several years now and has gotten bad enough where I felt like I needed to do something. An EAU that I had in September revealed significant inflammation and polyps. Pain and bleeding has gotten significantly worse since then.

Prior to my consultation with the surgeon I read a lot, looked at studies, read message boards, and did as much research as I could about colostomies so I went in prepared and informed about making such a big decision. The surgeon felt like a colostomy would help improve my quality of life and I felt that way too prior to going in.

The thing that concerns me that most is mucus discharge and management of the rectal stump. After the surgeon said I can expect mucus discharge daily or multiple times a day I read more about those issues here on this message board and it really sounds like it can be a major issue. My question is how effective is anal irrigation on managing mucus discharge? I've read that doing it too much can make things too moist and lead to bacterial overgrowth, causing other problems. After irrigating does the mucus and water just come out on its own immediately or does it take a while? Will I need to continue doing digital stimulation to get the mucus out after irrigating? Any advice on how to manage a rectal stump and mucus discharge would be greatly appreciated, especially for someone with a spinal cord injury like myself. I know my current situation isn't going to get any better doing my current regimen and a change is needed, I'm just really stressed out about the changes to come. I'm sure a lot of it will be trial and error.

Thanks.

[darick]

I had cancer on L4 about 23 years ago. From the tumor and surgery damage, I lost control of my bowels. I was doing digital stimulation for awhile to clear the rectum out for awhile. Also had a cecostomy for while, which was a tube near the top of the bowels to sorta do a top down enema. But since the sphincter was not working, I couldn't stop random output. All this was while I was going to high school, had a few shit my pants incidents, was not fun. I didn't want to be social, etc.

I eventually got a colostomy, mostly for quality of life, and it improved things majorly for me. I still have the stump, and the odd mucus output, but in my situation, the output is maybe once a year or so. Usually if I get a cold, and am coughing a lot, that triggers whats in there to come out. I end up wearing a pad in my underwear for up to a week while it slowly comes out. After the stump has healed, and stool is going through the stoma, I'd expect mucus from the stump to slow down; reports of daily output there seems odd to me. But there is always risk of issues with that remaining tissue, even anal cancer some day.

There is the option of removing the stump completely, what some people coin the 'barbie butt' since you won't have a butt crack anymore. They remove the colon pieces after the stoma point, so there is no risk of stuff happening there. That takes longer to heal from, and could affect other things since removing all that is so close the prostate and such.

Second opinions are also very natural for this much of a life change. Nothing wrong with seeing another doctor as well for their thoughts.

[ot dave]

I don't have a rectal stump. I had a total APR due to my cancer being so low in the rectum that the sphincter muscles had to be removed as well. So, I have the closed up back end and have never had to deal with the mucous output from a residual stump.
I have been on this board for about 10 years now and I know that mucous output occurs, but I think it is rare that it would be a daily occurrence...at least in the long run. I suppose your surgeon was giving you the worst case scenario, which they should do.... Hopefully others with a rectal stump will chime in and give you their experiences.
From a waste output standpoint, I think that you would find a colostomy much easier to deal with over digital stimulation. The variety of different appliance set ups will enable you to choose a system that works best for you. As an occupational therapist, I occasionally work with folks with spinal cord injuries, and I definitely see the benefits in having a colostomy. You just have to weigh the pros and cons. It won't be a perfect solution, but it might be better than what you are dealing with now.
Hope that helps some.

David

[BillGK]

One risk that you run by having a rectal stump is the onset of proctitis. This is what has happened to me. I have a long stump, probably about 7” or so. I have to deal with proctitis on a continuing basis. It does not go away, it does not go into any sort of remission. Conventional means of dealing with this condition - known as diversion proctitis, google it - are limited and not always effective. So think about this, and do some research, and discuss the possibility of proctitis with your surgeon.

I don’t know the probability of you having the problem. I have read that most people with a diversion have it, but that it isn’t highly symptomatic in many cases. So I don’t want to cause you alarm.

If you are going to have this done, why can’t they give you a very short stump so as to spare the anus but not have a lot of extra colon to cause trouble. I don’t see why this would be any more difficult for you than getting a long stump, and perhaps a short stump is the default in your situation. The real dividing line is the removal of the anus, which is a much more involved surgery and a more difficult recovery. The reason they gave me a long stump was that they wanted to leave the option for re-connection. Since my surgery was emergency and since I had no experience with a colostomy I had no opportunity to tell them - Stop, don’t leave a long stump, I don’t want to get re-connected. A short stump is going to be easier to manage in the event that you do develop proctitis.

[et8683]

Thanks for the replies. I heard about disuse colitis/proctitis from this message board, and will research it further. I was wondering if a shorter stump would lead to fewer problems so thanks for that information. I'm doing my best to be prepared for the potential issues to come and just hoping that things go okay. I appreciate the feedback.

[ot dave]

Another thing to keep in mind is that we are all..., just like our individual paths to getting an ostomy..., unique. What happened to one person may not happen to the next and vice versa. What works for one person, might not work for another, etc.
Have a "no holds barred" conversation with your surgeon about your concerns, and figure out the pros and cons to each choice. It's a lot to think about. If you remove all of the distal plumbing, there is no going back. But if you leave it intact, you could endure the issues you have discovered...or you might not! You might also get a surgeon who won't remove the distal structures, leaving you no choice but to have a residual stump. I was lucky in the fact that my surgeon is the one who teaches all of the other colorectal surgeons at UAMS (University of Arkansas for Medical Sciences) how to do these surgeries, so he's had a lot of reps over the years, and he left all of my nerves intact, and I retained all previous functioning without any deficits. But, anytime you cut, you could have issues.
I'm not trying to discourage you at all. Just giving you the facts that I know. Honestly, knowing what I know now about ostomies, if I were paralyzed and had a neurogenic bowel, I would definitely have an ostomy placed....but that's me. I've learned to not only live with my ostomy, but live my best life in spite of it...
Hope that helps some.

David

[bbehrends74]

hello everyone i am scheduled to have surgery to get a ileostomy thursday feb.13th and am scared i have never had any surgery at all i am haveing a colon completely removed as well as my rectum i am so nervous about the rectum surgery because of all the stuff down down there and am concerned with losing functunction ..any question i should ask my surgeon she came highly recommened and is one of two that do it in the hospital any helpful words or words of encouragement would be very greatful thankyou everyone

[nickolas]

hello everyone i am scheduled to have surgery to get a ileostomy thursday feb.13th and am scared i have never had any surgery at all i am haveing a colon completely removed as well as my rectum i am so nervous about the rectum surgery because of all the stuff down down there and am concerned with losing functunction ..any question i should ask my surgeon she came highly recommened and is one of two that do it in the hospital any helpful words or words of encouragement would be very greatful thankyou everyone

Good luck with your upcoming surgery or I guess it is today. I had rectal cancer and had my rectum totally removed. That was almost 16 years ago. I'm doing fine with out it. Best advice I can give, walk, walk, walk those hospital all and keep walking when you get home. It really does help in the healing process. Also bring a wrap around robe for walking those hall. I was only allow to wear 1 hospital gown and we all know how exposed they are in the back. A wrap around robe is easy to deal with IV's that you will probably have. Also good pair of walking slippers.

Give yourself a few weeks to recover. I was cut open and it was probably a month out before I started feeling something close to normal. I know that recovery from a lapro is a lot faster.

Again, good luck,

Nickolas