Considering a colostomy - Seeking advice and experiences

Hi! I am considering having a colostomy and would like to know the good, the bad, and the ugly. I have a spinal cord injury at the C6-7 level, so I have no control over my bowel. It has been 16 years now, and I have been manually evacuating my bowels, but now things are changing, and I am considering a colostomy. Right now, I do manual evacuation every other night, and it can take up to 2 hours to complete, so it really cuts into what I can do socially. I am hoping that the colostomy will give me more freedom to go out and do things, but I am also afraid of the unknown. I see a surgeon on Monday to discuss the surgery, but I know that the best source of info comes from the people that have been there and done that...so I am hoping you will give me feedback and let me know all the good, bad, and ugly things that can come from having a colostomy.

Thanks!

Hi Sissy, I am far from an expert on colostomies. But I have had one for 5 years now. I have never had any problems with it other than a blockage one time from eating peanuts. But if you have been taking care of it every night for 2 hours, then I would have to say that I would definitely get one. They are not hard to take care of (well mine hasn't). So just a little piece of my advice. Good luck in whatever you decide. God bless you!!!!

For some with colostomies, a two-hour ritual approximately every 48 hours and otherwise no output in between is time well invested.

Yes! Yes! Yes!

Texas Girl - Thanks for your input! Can you tell me a little more about what it takes to care for a colostomy and how long it approximately takes? Any info you are willing to share would be appreciated!

Sinfulsot - So are you saying that you would rather do the 2-hour routine every 48 hours than to have a colostomy?

Three - Are you agreeing with Sinfulsot or what exactly are you "YES"ing about?

Words of Encouragement from Ostomy Advocates I Hollister

Hi sissy ~ Yes, I definitely agree with Sinfulsot.    A 2-hour routine every second day with no output the rest of the time, and no unexpected "funny noises" in quite public places, and no expensive ostomy supplies to buy, and no chance of leakage, and no appliance to change, and no hyperawareness of odors, and no ballooning bag that needs to be vented, and no possibility of developing a hernia at the stoma site, and . . .

If the conditions three listed are all true, and the only time you have to deal with poop is said 2-hour routine with no continent accidents, then yes.

I could deal with farts and other strange noises, but that's just me...

Colostomy - Love mine - works great.
I have trained myself to watch what I eat and to take magnesium every evening so that I only have output once a day in the morning. I have very few noise issues, I watch what I eat if I am going to be in a group. I tried every pouch on the market before I decided which one worked best for me. My choice was convenience, closed end, I also don't use any other product including skin prep, removers, paste and glue etc. A couple of times a week I take off my pouch to allow my skin to have air. When I change my pouch I only use baby wipes, fragrance and alcohol-free to clean the stoma area. I have had very few leakage problems, I make sure my bag is on secure from the start.
My colostomy has allowed me to lead a normal life - I had IBS and diverticulitis.
Hope this helps - I like being a bagger instead of a flusher.

Hi Sissy ~ Yes, I definitely agree with Sinfulsot.    A 2-hour routine every second day with no output the rest of the time, and no unexpected "funny noises" in quite public places, and no expensive ostomy supplies to buy, and no chance of leakage, and no appliance to change, and no hyperawareness of odors, and no ballooning bag that needs to be vented, and no possibility of developing a hernia at the stoma site, and . . .        

Hi Sissy ~ The above is a worst-case scenario, and each of the descriptors has been mentioned at least once by someone on this site over the last two years. The odds of any person having all of the above may be slim, but I'd rather you hear all the possibilities when you make a decision that may not easily be reversed, and of course any operation/hospital stay also has possible complications.

You said you have been managing with manual evacuation for 16 years now, and the only downside you mentioned was "up to" two hours spent every 48 hours. Now you also mentioned "but now things are changing"; however, you did not give details — perhaps those details would influence how each of us responds to your question.

For me, a colostomy is no big deal, but for others, it is horrible.

Hey Sissy -

Three is right! Check the positives! What are the reasons things are changing?

I have an ileostomy so it runs all the time 24/7. I also am very strict not to eat anything past 5:30 p.m. or I am up all night going to the bathroom 4-6 times to dump the bag. No way would I tell someone to get what I have for convenience sake!!!!

A lot of the colostomy friends on here irrigate - so as to have little or no output - DAILY. Two hours out of every 48 probably doesn't sound so bad to them. Maybe you should read their posts about irrigation and see how you feel about what they are doing and experiencing?

From the way your post reads you were due to go to the Dr. today. Can't wait to hear how this went for you!

Melissa

Thanks for all the input! I did see the doctor today and have scheduled surgery for Aug. 10. I still want to hear all the good and the bad though!

I considered the surgery as I have a spinal cord injury at the C6-7 level, so I am paralyzed from the chest down. I have no control over my bowel or bladder for that matter. I am confined to a wheelchair all day long, and I am looking for something that would help me be more independent. I have a stoma for my bladder, so I have control over that, but I need help with my bowels as I am not able to do the manual evacuation on my own. I also started to have blood in my stool, so I was afraid that I was creating damage from the manual evacuation all the time. The last reason was that it seemed to be keeping me from going out at night because I would have to be at home doing bowel program for 2 hours and not able to go out with friends or making friends for that matter. So, as you can see, there are a few different reasons for considering the surgery.

Please continue to let me know what you think and provide any best practices or anything else I should know.

Thanks so much!

Sissy, hi it's Tammie. Sorry it took so long to get back to you. Let me tell you about my colostomy. I had stage 3 cancer and had to have everything removed. I also have a stoma for my bladder. My colostomy has never given me any trouble. For the last 5 years, I use a two-piece appliance. When I go in the bag, I pull it off and put on another. I change my flange every 3 to 4 days. I do have private insurance and Medicaid, so I do not have to pay for any of my supplies. I am very lucky for that. I am not telling you, "Yeah, go get a colostomy." But if you have to have one and are asking for some input, I am just saying with me it saved my life and I am happy with it. I wish you the best of luck. God bless you, Tammie.

ps...I do not have a problem with noise, smell, or leakage. Maybe the men on here need to watch what and how they eat. Duh.

Agreed!

To the thread author:
Just be aware of all your options; the best outcome is non-decreasing quality of life.

Hi - it would be worth checking with your surgeon prior to your decision whether your colostomy would be a candidate for irrigation.

I have to agree with others here who have said they would rather do a 2-hour ritual every other night and be "product free" the rest of the time. That is why I irrigate - so I can do a one-half to one-hour ritual every day and (mostly) be free of output the rest of the day - not always though!

With your spinal and nerve injuries, you may not have the irrigation option, but if you are seriously considering a colostomy, I'd check it out first! Best of luck!

Sissy, if you do get a colostomy, irrigation is still an option. I don't always irrigate, but it is still an option. I have had my stoma for a little more than 4 years and outside of having 2 hernias, it hasn't been that hard to adjust to. I wear a two-piece closed system and when I do poop, I just change my pouch and off I go. I change my flange every 5-7 days. I never leave home without an extra pouch, flange, and even a stoma cap if I irrigate. But I have had very little problem with my stoma, getting appliances to fit, filling with air, leaks, etc. I have read lots of issues others have, but I feel very fortunate not to have those problems. I hope if you move ahead with your surgery that you too will be blessed and not suffer like some of the others.

At first, you have to wait for the stoma to get the swelling down before you can order the precut flanges, and cutting the flanges is a little difficult at first, but once it is stable and the swelling is gone, you can order precut ones and it makes the whole process much easier.

Good luck in whatever you decide.

Hi, I have had C6-C7 removed and cages put in, and fusion in May 09. In October 09, I had to have a lower back operation which gave me nerve damage to my bowel and bladder. I have asked to have a colectomy. It should be in June sometime. I would love to keep in contact with you to help each other if you need someone to talk to.

A colostomy would give you more freedom, and you could irrigate. This would free you up further. I have had both a colostomy and an ileostomy. If I had a choice again, I would go for the colostomy. The best of luck on whatever you choose to do.

Star/Trish

Sissy, Mike is absolutely right. You do need to be able to consider both your spinal injury and the colostomy and how this will impact on your management of it.