Choosing Between a Colostomy or a Reclusive Life?

When I was 20, I inherited a rare neuromuscular disorder. The nerves overstimulate otherwise healthy bowels and cause 12-25 BMs every day, 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 minutes 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 for all GI disorders including Crohn'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 choose between life as a recluse or life with a bag?

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

Thank you very much for your time.

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't 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 and enjoy life. Best of luck, I love my bag.

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!

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 advantages as well as disadvantages.

Hi jpeters!

I am 33 and have had my colostomy for 18 years due to Crohn's. 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 years to the most amazing man a woman 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 because of my pouch. I have done more in those short 18 years than I could ever have 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.

It's about quality of life. I think there was an article about someone getting an elective colostomy on ostomy.org.

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.

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

Bill

I would have the bag. Your life will improve so much. Let us know what you decide.

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 it's 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?

Hi Pintsize,

It's 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 minutes a day and keeps the bag mostly empty.

How do you handle swimming? Are you able to stay in the water for 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.

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?

Sinful,

I often have to go to the bathroom at 45-minute intervals and have cramps that cause heavy sweating. Traveling is possible, but it's a nightmare. Honestly, the stress would kill me.

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.

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.
It's hard to make such a big decision when your life is not on the line. But I think 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 inspiration from the latter. Both had Crohn's and diseased bowel with complications. Their ways of dealing with it were very different, and it comes down to a positive state of mind about the decision you make. Good luck with your choice.

Hi again,

No question for me is too personal. So let's get started!

I have never irrigated, believe it or not. I never felt the need to do so. I eat a regular diet and I empty my pouch, I'd say 3-4 times a day.

I am a water bug! My father was a lobsterman, so I was around water all the time. I have never ever had a leak. I will swim for a few hours at a time (floating around the pool, etc.) no problem at all. For peace of mind, I will change my flange and pouch after a full day at the beach/pool.

As far as the pouch making noises or smelling... I really can't say I have had any embarrassing tales. When you're in public, there is always background noise, so there is always something to muffle a gurgle or two.

I guarantee if you were to see me in public, you would have never guessed I have a colostomy! I consider myself pretty fashionable and wear the new trends... skinny jeans, etc. PS I forgot to mention I also do yoga. I wear yoga pants and a tank, and believe it or not, no one is the wiser to my pouch. I will post the system I have been using now for 18 years. It is a 2-piece from Convetec. It is comfortable and lays flat.

One thing I want to mention is if you move forward with surgery, ask your surgeon to put your stoma as far below your pant/waistline as possible. I truly believe this is why I have had such success with my pouch. It is very low, making it very easy to disguise and manage.

Take care!

Hi Pintsize,

Thanks for responding so thoroughly. Your answers have been really helpful in explaining what it's like to actually live with an ostomy.

It's great that you're able to swim without any restrictions. Is it obvious that you've got an ostomy when you're wearing a swimsuit? Do you wear any special gear when you swim to keep it securely in place?

Also, where exactly do you recommend putting the stoma? Do you feel like the low position puts less pressure on it? The surgeon mentioned a 40-50% chance of eventual hernia, so I'm really trying to minimize the stress on it.

I've got a thin build, and my stomach always sticks out after meals. Do you ever have problems with a full stomach putting stress on the stoma? Are you careful to only eat small meals?

Thanks again.

Good morning.

It is not obvious at all when I wear a bathing suit! I wear tankinis or a one-piece that is a swimdress style. This is exactly what I wear - http://www.zappos.com/athena-heavenly-bandeau-dress-black?zfcTest=fcl%3A0. I will not settle for anything frumpy or not appealing on a 33-year-old. I do not wear special gear (ostomy belt, etc.). It stays in place on its own, so I do not feel the need for it.

I can't recommend where to put the stoma; I can only tell you what worked for me. A little background: I had my first surgery when I was 15 to rest my bowels for a year or so and a bowel resection. A couple of months after my surgery, I was experiencing a lot of pain and swelling under my stoma. I came to find out I had developed an abscess the size of a grapefruit. So back in I went to have the abscess drained. Prior to going back in, my mother asked the surgeon if they had to move the stoma to move it as far down as possible because it was falling on my pant/waistline, making it hard to disguise, and it was a bit uncomfortable having my pants rub against the stoma. Besides helping me make the decision of a temporary colostomy, this was, I think, the best decision or request my mother had! I could have totally made it work if it was higher, but it is just so much more convenient falling below my waistline.

I am 5'0 foot and 120 lbs. So I'm on the petite side. The size of a meal has absolutely no effect on my stoma. Again, because I feel the placement of the stoma is so low, when I eat a large meal, you see my full belly, not my pouch haha. I eat three times a day and a snack. This has absolutely nothing to do with my Crohn's or pouch. It is just what works for me and my schedule. Since I only eat three times a day, I do have large meals. When I had the bowel resection, they took the majority of my colon. They left 7 inches, which was a blessing as well for me. A colostomy has more of a thicker output versus an ileostomy. I do not curb myself or deprive myself of anything. Well, except corn, celery, and peanuts. I stay away from those. When I know I'm going out, I will eat light and I stay away from soda or gassy veggies. It's a choice, not a necessity.

I told you I would share what system I have been using for 18 years. I use the Convatec SUR-FIT Natura Two-Piece system.
Item number 413166 Durahesive flexible (very important) in tan.
Item number 411290 10 pouch with 2-sided comfort panel in opaque.

I feel there is no need to have a transparent pouch. I like the tan flange and opaque pouch because it is skin-tone, making it easy to disguise under light or white pants. I do use closed-ended pouches but not often. I would also recommend the mini pouches for intimate moments. Oh, and just to point out, pouches will come in different lengths. I use the 10 because I'm short.

I have a question for you. Since you are self-employed, have you researched what your insurance will cover for your ostomy supplies?

I'm signing off for the day. I will be back on later tonight if you have any more questions. Have a great day! ;

Hi JP. At the early age of 60, I decided to have an ileostomy when my GI reported that there were bad tissues in my colon which might turn cancerous. I was not interested in playing Russian Roulette, so I had the surgery within a month. For the preceding 25 years, I had suffered on and off with Ulcerative Colitis which put a real damper on many of my activities. I had to live my life from one toilet to the next. (Ed, I felt like Tarzan but swinging from hopper to hopper.) In retrospect, JP, if I had a bag during all those years, the quality of my life, and that of those around me, would have been much better. That's my opinion and experience. Good luck with your decision. PB

I am also an "elective" colostomy person after years of suffering, very similar to your own. Reading your post brought back the years of not eating to go out, plotting bathrooms, occasional incontinence, sore, sore rear end, and nightly soaks in the tub to relieve the pain. I went into therapy to resolve what to do and decided to have the surgery. I have my colon, and should science come up with something for my stricture in the rectum, it could be reversed. I exercise with my colostomy, have never in five years had a hernia, swim, have traveled to England and Africa, and would never go back to the fractured, sad life I lived. I only wish I hadn't waited eight years for the surgery.

Good luck with your decision, and I do advise seeking therapy to work out the issues for yourself if you can't come to a decision you feel happy with.

Lynn

Hi Pintsize,

Thanks for responding so thoroughly. I'm going to purchase a few different pouches to find the best fit during recovery, and I'll definitely include the SUR-FIT. Most people seem to prefer the two-piece, and many people have said good things about Convatec.

The surgeon mentioned that they locate the stoma where it minimizes the strain on the abdominal wall, but he didn't go into details. I'll talk to him about getting it positioned lower down. I'm really interested to hear you say that the lower position works so well for you. Do you have any difficulty fitting the pouch into your underwear? It seems like it would be easier to just get it higher up and tuck it under your shirt, although it would definitely be more visible.

I'm very relieved to hear you say that eating larger meals isn't a problem. I usually just eat one fairly large meal in the evening, and with a thin build it always makes my stomach stick way out after dinner. So I've been worried about having to switch to several smaller meals, which really doesn't work for me. Maybe the lower stoma location helps to minimize the stress of a full stomach. The pubic area stretches much less when you're full than the stomach area.

That's a good question, I'll check with Aetna to see what supplies they cover. I'm hoping to start irrigating as soon as recovery permits, which should significantly reduce the amount of needed supplies. I'm also doing pretty well financially so unless the cost is outrageous, I'm not too worried.

Thanks for the feedback, PB. Glad to hear that the ostomy improved your quality of life.

Hi Lynn,

Thanks for sharing your experiences. They do sound very similar to mine, although I think that I'm more isolated but in less pain than you were. I probably will go to therapy after the operation. I've been alone, self-employed, and completely isolated for years. It does take a major toll. I have a lot of nightmares and decided on the ostomy because the alternative was suicide. Talking to a psychologist would probably do a lot of good. Congrats on getting your life back.

I actually prefer not to tuck my pouch into my panties. I find it uncomfortable and awkward. I wear bikini type and they ride right under my flange, keeping the plastic off my skin. I also roll my pouch up so it is not resting on my thigh.

Have a good night!

Hi Pintsize,

Thank you very much for answering all my questions so thoroughly. I know I asked a lot, and really appreciate your patience in responding. I have a much better understanding of what it's like to actually live with an ostomy and am much more prepared for the surgery.

Best regards,

John

Hello John, I read your story and the responses and think that you are making a good, well-informed decision by going through with an ostomy. I realize that I am late to respond but wanted to make a few points.
First, you said you have 12 to 24 BMs a day at 15 to 25 minutes each. I am not a math wiz but that is a good portion of the day! Your quality of life is going to increase so much when you can spend that time doing things that you enjoy! And not having to be chained to the lav!
Second, you probably have not had a good night's sleep in five years!? We all know how important sleep is to both physical and mental health.
The last thing is I can see that you are concerned about hernias. I've had my ileostomy going on four years now, no problems. Your Dr's numbers at 40-50% chance seem high to me. I'd definitely research that. I will also. But even if it is correct, there are preventative strengthening exercises that can be done and you can learn proper lifting techniques.
I believe that your life is going to be so much better and more fulfilling in the next 6 months to a year that you will be amazed!
GOOD LUCK!!! Keep us posted.
Steve.

Hello John, I read your story and the responses and think that you are making a good, well-informed decision by going through with an ostomy. I realize that I am late to respond but wanted to make a few points.
First, you said you have 12 to 24 BMs a day at 15 to 25 minutes each. I am not a math wiz but that is a good portion of the day! Your quality of life is going to increase so much when you can spend that time doing things that you enjoy! And not having to be chained to the lav!
Second, you probably have not had a good night's sleep in five years!? We all know how important sleep is to both physical and mental health.
The last thing is I can see that you are concerned about hernias. I've had my ileostomy going on four years now, no problems. Your Dr's numbers at 40-50% chance seem high to me. I'd definitely research that. I will also. But even if it is correct, there are preventative strengthening exercises that can be done and you can learn proper lifting techniques.
I believe that your life is going to be so much better and more fulfilling in the next 6 months to a year that you will be amazed!
GOOD LUCK!!! Keep us posted.
Steve.

You're absolutely right, Steve. I haven't had a good night's sleep in years. I usually get up 2-3 times/night to use the bathroom, and half my dreams are nightmares about being sick.

Glad to hear you never got a hernia. The doc said that the 40-50% number came from a long-term study that followed people who had ostomies for several years. He said the shorter studies under-report the number of people who eventually get hernias. It's also worth keeping in mind that the average age for someone with a colostomy is 71. That's kind of a good news/bad news. The good news is that if you're younger, you're currently at much less risk. The bad news is that you'll have many more years to live with your ostomy during which you run the risk of hernia. Building up core strength is a good idea. That should take a lot of pressure off the stoma. It'd be interesting to know if colostomies are more likely to herniate than ileostomies, since they're in a different location...