Colostomy for 10 years

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Cypress Willow
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Date Joined Nov 2006
Total Posts : 1
   Posted 11/30/2006 8:51 PM (GMT -7)   
I have had a colostomy for 10 yrs, and I am only 45. I have it because I had (overly) excessive radiation, and as a result my colon was actually dying inside my body from the rectum up. I had my sigmoid colon removed, and because of the radiated tissue, the resection didn't work, so a fistula was formed, and to avert feces from further infecting my tissues, a colostomy was performed. The irradiated tissue will never heal, as radiation lives on for longer than an average human lifespan, and so the colostomy is permanent. Here are the things that those of you who are just beginning to deal with one should know: It is much more difficult, if not impossible, to regulate your bowels without a special diet which causes you to have a bowel movement after every meal and snack. This option, obviously, would regulate your day causing you to either not eat properly or be tied to someplace where you can be comfortable taking care of bowel business. If you decide to live less structured to your colostomy, then you must put up with embarassing moments like this - I was coming back from a snowmobiling trip, in the truck back to the hotel when my bowels decided to suddenly work. I was still wearing a one-piece snowsuit besides being in a moving vehicle with no immediate options. Because there was pressure on the bag from the clothing, and the amount, the bag broke at the seal. I was aghast.
Or the phone might finally ring while waiting for an important call and you cant even run to answer with your pants down because you are cleaning your bag.
I mention these irritations because until finding this chat, I have had no one to complain to. For 10 years. I still deal with a lot of pain everyday because the area below my colostomy is severely damaged from the radiation and slowly disintigrates every day. The pain gets worse. I don't know, it seems like I am such a prisoner of this thing, a lifer at that. <sigh>

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Date Joined Feb 2006
Total Posts : 5698
   Posted 12/1/2006 7:10 AM (GMT -7)   
I am sorry to hear of your troubles. I know, from my own personal experience, that living with bowel problems can be shameful and or embarrassing. I have a jpouch due to refractive ulcerative colitis. I don't know what your health history is but have you thought of converting from a colostomy to a j-pouch? Some of the problems you have currently (having to use the loo after each meal) might continue but you won't have to worry about accidents with a bag failure. A trick I use when I am involved in all day physical activity (I hike 100-200 mile stints) is to take lomotil. It slows down the peristalisis and allows me to reduce my frequency. I could take it daily but I prefer to use it only when I am involved in excessive physical exercise.
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free

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Date Joined Feb 2003
Total Posts : 1250
   Posted 12/1/2006 9:40 AM (GMT -7)   
Hi Cypress Willow

Since you have a colostomy, has your stoma nurse mentioned the possibility of you being able to irrigate? This would mean giving yourself a water enema via the stoma every 24 - 48 hours and that would return the stool all at once leaving you stool free the rest of the time. A lot of colostomates love this option because it means that many of them can go bag free, just wearing a small patch over their stoma rather than a bag. DO NOT try irrigating though without a stoma nurse guiding you through when you first start.

I've had an ileostomy for 30 years (I'm 40 years old) and ileostomates aren't able to irrigate so this isn't an option for me, but I know many colostomates who love the freedom that irrigation gives them.

Good luck.
I have had an ileostomy for 30 years now due to UC.
I'm not a complete idiot - some parts of me are missing!

vette guy
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Date Joined Nov 2006
Total Posts : 650
   Posted 12/2/2006 11:09 PM (GMT -7)   

I was given a colostomy in '89 which was converted to an ileostomy in '04. both times were due to fistulas as a result of crohn's. I had my share of embarassing moments BEFORE my surgery. I had so many perianal(probably spelled wrong) fistulas that often if I had flatulence it would pass through the fistulas with a high pitched whistling sound. It sounded like Mariah Carey stuck in a bear trap!!! And the pain was incredible. I can honestly say that after 17 years with an ostomy I wouldn't switch back if I could. It's like the devil you know versus the devil you don't know. Sure there are times when I want to shout out loud and feel sorry for myself. Luckily that doesn't happen very often. I too am very active and play physical sports. And yes I make certain concessions about what I can and can't do. But it's nothing compared to the emotional prison I was in before my surgery.

New Member

Date Joined Dec 2006
Total Posts : 4
   Posted 12/12/2006 1:25 PM (GMT -7)   
Dear Cypress Willow:

I am responding to advice from another who advised using Lomotil to slow down your peristolisis movement. Lomotil is for people with normal colons who are having
a 24 hour grip and for use on a short-term basis. It is not advisable to use Lomotil on a regular basis. Do NOT MESS with your peristolisis normalcy. If it's used on a regular basis, your body's peristolisis will become sluggish and you will develop intestinal problems from it.
Just a warning.
And as advised from another. Dealing with what you have now is a lot better than what you dealt with before.
I've had an ileostomy for 10 years now and I live a normal and healthy, drug-free life. I had ulcerative colitis.
Shaz's advice is something I've heard about with people with colostomies. Irrigation. I agree. Go with that. I've heard also that people with colostomies can just wear a patch, depending on how much colon has been removed.

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 12/20/2006 4:14 PM (GMT -7)   
I too wouldn't go back. I've had mine for 15+ years. I now have a life, I ride horses, I go to school, I work, I can leave the house, what a concept. Yes there are embarassing moments, but they are worth it to me. I have a colostomy, but only about 8 inches left of my colon, and who knows how many feet missing from my ileum after 5 surgeries, so it pretty much works like an ileostomy.

I'm 48, so clost to your age, and while I didn't have cancer, I've had so many surgeries that my stoma is a real problem, but with experimenting with different products have found solutions to just about all of them. Maybe you need to see an ostomy nurse to give you ideas about the skin below your stoma, there's so many new products out there, you may be able to find something to help. If you have questions, I used to sell the products, you can contact me directly if you like.

Anyway, I don't do anything to regulate my diet (except for when my crohn's is active of course). If I'm pretty active, I find that slows things down anyway (a physiological response). So while I do regret the need for one sometimes (especially when clothes shopping) I know I'm much better off than I was before I had it done.
25+years diagnosed with CD.  5 surgeries,permanent colostomy (which I'm glad I have, I can actually leave the house)   have taken every drug available, now on Remicade, seems to be keeping it controlled.

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