Has anyone found a colostomy to be th... - Pelvic Radiation ...

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Has anyone found a colostomy to be the solution to incontinence. I wondered if it made things more controllable ?

nBnw profile image
nBnw
15 Replies

I have had worse and worse incontinence since radiotherapy in 1999. A doctor I saw during this time suggested I might need an 'operation'. Should I abandon the proposed rectal prolapse surgery and have a colostomy?

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nBnw
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15 Replies
jude-the-obscure profile image
jude-the-obscureCommunity Pioneer

You need to consult your surgeon and your GP (family doctor)

We cannot advise on such a serious choice. So sorry you have this pressing problem. Have you discovered why you are incontinent? The underlying problem may be constipation with fluid motion running around the hard stool. Straining may be the source of your prolapse. Only you and your medical advisors can decide what is best for you. Have you seen a dietician?

I do hope that you find a good solution

Very best wishes

Jude

Mariecapp profile image
Mariecapp

Thanks for sharing. I'm sorry that your incontinence is so bad that this would be an option. I can identify with you though. I have thought about this option a few times. Best to you!

SpaghettiBetty profile image
SpaghettiBetty

I was at the stage that my bowel issues had completely trashed my quality of life and I asked my gastro for a colostomy.

It’s a very personal decision and definitely a discussion to have with your doctor/surgeon, but I can say that for me personally it gave me my independence back. My confidence had completely gone as I had no control, having a colostomy gave me back that control.

Happy to answer any colostomy questions.

nBnw profile image
nBnw in reply toSpaghettiBetty

Thank you Betty for this. Have there been any issues regarding size and volume of stoma bag - ease of getting supplies. Many thanks again. Best wishes

SpaghettiBetty profile image
SpaghettiBetty in reply tonBnw

I’ve had no issues getting supplies and as it‘s a result of cancer treatment I am exempt from prescription charges.

It isn’t noticeable under clothing. The only people who would know I have a colostomy are the people I tell. Even when it is getting full people won’t know. One thing people ask is do they smell, the answer is no, they have charcoal filters to allow gas to disperse without the smell. Obviously they smell when you change/empty them but then so does everyone else’s poop! I use a nifty deodoriser for ostomies which neutralises the smell.

There are little things to get used to, for example you cannot control trumps, or stool output but you can generally tell it’s going to happen and put your hand over the bag which muffles the sound.

I take loperamide at bedtime to slow bowel transit while I sleep to get a full nights rest but this can be a bit of a science to get right initially.

nBnw profile image
nBnw in reply toSpaghettiBetty

Many thanks again. How long have you had it by the way? Kind regards

SpaghettiBetty profile image
SpaghettiBetty in reply tonBnw

I’ve had a colostomy for 4 years now. I’ve learned a lot from online stoma groups if you feel that would help you.

I think a lot of people view a colostomy as the ‘worse case scenario’ but for me living with an uncontrollable bowel was that scenario. Like I said it’s a very personal decision and only you can decide if it’s right for you. ❤️

nBnw profile image
nBnw in reply toSpaghettiBetty

Many thanks again.

Linderella2144 profile image
Linderella2144 in reply toSpaghettiBetty

I was very happy to read about your life after your colostomy. I have been considering this as an alternative. Although I am 65 and had my cancer therapy 27 years ago the problem with my digestive system is getting worse by the day. I was very active but for the last few years I have had many accidents which have embarrassed me to the point that now I hide in my house, even doing the weekly shopping for food scares me. I can be fine one minute and the next I have explosive diarrhea.

Whittlestone profile image
Whittlestone in reply toLinderella2144

Hi, like you I had my cancer treatment a long time ago (23years ago) and have a similar problem with my bowel. As has already been said, it is a very personal decision as to the route taken to help you cope. My route has been medication, via a gastroenterologist and several tests eg for bile acid malabsorption, Crones etc). Also dietry advice has been really, really helpful. But I expect you have explored these options already. It has taken me about 4 years to get to a point where, through medication and diet, I feel much more in control. I have seen a surgeon and a colostomy was discussed. But for me, now does not feel like the right time as my control has improved. However, when I go through a 'bad patch', I always think about this again. It is such a complex, personal decision to make. I hope your medical team are exploring all your options with you.

Linderella2144 profile image
Linderella2144 in reply toWhittlestone

I have been considering this for quite a few years, I have tried diet, pills, relaxation techniques. I think Colostomy is the only way for me to get my life back, to be able to go shopping or hiking or even for a drive in the country with my husband. It is time for me. I just hope they can do the operation because radiation can mess up the tissue to the point that surgery cannot be performed. I had a prolapse repair and a hysterectomy a few years ago so I am hopeful they can and will do a colostomy.

SpaghettiBetty profile image
SpaghettiBetty in reply toLinderella2144

Hi Linderella2144 I’m so sorry that your symptoms are causing you so many issues. It’s awful when you feel so restricted by unpredictable bowels 😢 Whittlestone has made a great point that it’s important to explore all options to try and manage things as having a colostomy is a big decision. In my case I had tried many things but in the end the decision was taken out of my hands and I had to have the procedure as an emergency.

nBnw profile image
nBnw in reply toSpaghettiBetty

Thanks very much - it is really helpful and I definitely need to discuss further with my surgeon. Very best wishes.

you are brave! i am terrified of surgery and not being able to heal after all that radiation. Blessings

nBnw profile image
nBnw in reply toaccidentalcarnivore

Actually I am terrified

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