Choosing Between a Colostomy or a Reclusive Life?

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...