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Would You Get a Colostomy If You Had a Healthy Colon?

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Posted: Fri May 17, 2013 3:09 am
When I was 20 I inherited a rare neuromuscular disorder. The nerves overstimulate otherwise healthy bowels and cause 12-25 BMs everyday, including 2-3 overnight. I am continent but get very little warning, so I always have to be near a bathroom. I always have small BMs that vary between hard and soft stools. It usually takes 15 min just to have one BM. I also have frequent painful cramps that cause sweating and shaking. The condition is debilitating but not actually dangerous.

In the last 5 years my symptoms haven't changed at all. I tested negative on all GI disorders including Chron's, UC, cancer, parasites, and food allergies. I tried an anti-diarrhea medication which had no effect. I also went to a surgeon and got a neurostimulator implanted. It cleared up a urinary problem but had no effect on the GI issue. Since I got sick I started exercising daily and eating the healthiest food you can get. Lifestyle changes have been great for general health but haven't improved the condition at all. Other than this disease I'm very healthy, trim, and fit.

I'm fortunate to be self-employed and able to work at home. But I may soon have to travel to keep my company running, and I'm unable to do that. I'm facing the possibility of losing my livelihood and ending up on disability when my savings run out. I finished college sick because I wanted to work, and I don't want to lose a job that is important to me. This disease has completely claimed my life. I haven't been able to date. I lost all my friends and hobbies. I barely leave the house once a week to go shopping. I haven't left the city in five years.

I'm in the strange position of being a fit, intact person who could live a full lifespan with no bag. But that might mean losing my career and would mean living alone with no hobbies, friends, or girlfriend. On the other hand I could ask my surgeon to sever the end of a healthy colon and give me a stoma. I could leave the house but would have to go through life with a bag and a 45% chance of hernia. Because my intestines are healthy I could get a sigmoid colostomy, which is supposed to be the least invasive. This also allows irrigation.

Seems like most people here had to get the bag due to life threatening illness. But what if you had a choice? Would you chose between life as a reculse or life with a bag?

Would your answer change if you were a self-employed, financialy solvent recluse?

Thank you very much for your time.
Posted: Fri May 17, 2013 6:05 am
THE BAG.  I could have had a colostomy reversed but I had IBS along with diverticulitis the bag gave me a life which I didn' have before.  I travel, go out and am having a blast.  If you are confined to your home due to this condition get a colostomy an enjoy life.  Best of luck, I love my bag.
Posted: Fri May 17, 2013 6:18 pm
I have had a permanent colostomy since 2004.  I travel a lot and live a very active lifestyle.  Get an ostomy and get your life back.  I have not found anything I cannot do now that I have an ostomy.  You can get your life back!
Posted: Fri May 17, 2013 9:56 pm
Hi J, Welcome to MAO~~
What is the name of the neuromuscular disorder? Is it only inherited? What does your surgeon say about your contemplating this procedure?
Would the sigmoid be reversible in time or permanent? Have you had to deal with this all your life?
I would have to think long and hard before I made such a choice. Having a "life with a bag" has both an advantage as well as disadvantages.
Posted: Sat May 18, 2013 6:15 am
Hi jpeters!

I am 33 and have had my colostomy for 18 yrs due to Crohns. I was 15 at the time when my doctors (and Parents) decided to do a temporary colostomy. As of today, it is still temporary. It is my choice to not have it reversed! I could never go back to the life I had before my pouch. Mapping out bathrooms, not eating so I wouldn't have "to go" etc. It wasn't a life for me, my family or friends.

I am extremely proud of who I am and what I have accomplished in life and career. This would have never been possible without my surgery. I have been married for 10 yrs to the most amazing man a women could ask for. I travel, swim, dance, work full time...there is literally not one thing I can think of that I could not do bc of my pouch. I have done more in those short 18 yrs then I could ever of imagined.

I wish you the best of luck. Please feel free to ask ANY questions. The more you know about it the better you will feel about your decision.
  Past Member
Posted: Sat May 18, 2013 9:02 am
It's about quality of life. i think there was an article about someone getting an elective colostomy on

If you can live with wearing an adult diaper in the event you cannot find a bathroom, i think you can travel to maintain your livelihood.
Posted: Sat May 18, 2013 9:35 am
Hello Jpeters.   My own colostomy was what they term 'elective' surgeryIn that I had a similar choice to the one you are facing at present. I was severely incontinent of faeces from the time an incompetent surgeon made a mess of a fairly straightforward haemorrhoid operation.  I lived with this and the accociated pain of a prolapse for many years. Each time I went to see someone they couldn't beleive what |I was having to put up with and each one recommended an ostomy.   Eventually the pain and inconvenience ( excuse the pun) got the better of me and I agreed to have the op.   Of course my life changed,  but I now have a life that is relatively free from pain and the inconvenience is confined to about one hour per evening when I irrigate.  The rest of the time is my own to do whatever I please. I have had several jobs and the ostomy has not been a problem with any of them.   I did want to do some evening work at one stage but  thought better of it as I quite like the trouble-free life that the evening routine offers me.  I'm not much for giving (or taking) advice but a site like this offers opportunities to simply say it as it is.  I was not 'forced'  to have an ostomy but I do feel that the advantages far outweigh the disadvantages that I faced before.
Best wishes
Posted: Sat May 18, 2013 1:52 pm
I would have the bag. your life will improve so much.  let us  know what you decide.
Posted: Sat May 18, 2013 3:51 pm
Re: Mrs. A
The disorder is one of the pelvic floor nerve disorders. Several of my cousins have it, and we didn't grow up together, so its probably hereditary. The condition isn't well understood, but it only affects the nerves at the end of the rectum. The colon and sphincter are actually fine, so I could get a sigmoid colostomy and solve the problem. I can keep my sphincter so it would be reversible. People are talking a lot about the advantages. What are the disadvantages for you, and what type of ostomy do you have?
Posted: Sat May 18, 2013 3:57 pm
Hi Pintsize,

Its great to hear that you are able to live such a full life with a colostomy. If you don't mind I would like to ask you some questions.

Do you ever irrigate? People say it only takes 45 min/day and keeps the bag mostly empty.

How do you handle swimming? Are you able to stay in the water a full hour? Do you have to change your flange afterwards? Have you ever had a leak in a pool?

Are people ever aware of the bag when you're in public? Is there ever a strange noise or smell coming from it?

Hope these questions aren't too personal. I'm just trying to get all the info I can.
Posted: Sat May 18, 2013 4:00 pm
Hi Bill,

Thanks for sharing your info. I'd be getting a sigmoid colostomy and am very interested in irrigating. If you don't mind I'd like to ask you a few questions about it.

1. How soon after surgery were you able to begin irrigating?

2. Have you ever had any problems or complications from irrigating?

3. Do you have output between irrigations?

4. Do you wear a mini-bag or stoma cover? Does the mini-bag contain stool and odor effectively?
Posted: Sat May 18, 2013 4:02 pm

I often have to go to the bathroom at 45 min intervals and have cramps that cause heavy sweating. Traveling is possible but its a nightmare. Honestly the stress would kill me.
Posted: Sat May 18, 2013 4:04 pm
I would never have posted personal details about bowels if I wasn't desperate, and it looks like I need to go ahead and get the bag. Things couldn't get much worse and it is reversible if doctors find a cure in the future. I'm going to do it in the next 3-4 months.
  Past Member
Posted: Sat May 18, 2013 4:25 pm
I didn't know about the cramps and sweating.

There is a learning curve to the bag and whatnot and with a colostomy you might be eligible for irrigation.

It's a big decision, but you should be able to live your life regardless of the distance to any bathroom.

Other resources you might find useful:

Good Luck.
Posted: Sat May 18, 2013 5:42 pm
Hi Jpeters
I get the situation you are in, I was offered the transmitter implant a long time back, but it would not  work now as I have had more muscle removed from my rectum.
Its hard to make such a big decision when your life is not on the line. But Ithink you have suffered enough already so it cannot be any worse to go with an ostomy. I saw my mother not cope with the bag and have a reversal after emergency surgery and my BF mum loved hers and was really positive about it.  I will take my insparation fromthe latterr. Both had Chronns and diseased bowel with complications. Their ways of dealing with it were very diffrent and it comes down to a positive state of mind about the decision you make. Good luch with your choice.
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