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kipcakes

Bowel Incontinence

22 posts in this topic

Hi Kipcakes,

 

I've just been catching up on threads after just arriving back from holiday. Bowel incontinence is not easy to talk about, I left it for ages before saying something and now I'm glad I did. Like others have said there can be a variety of reasons why your having this problem, mine was because of my nerves having been damaged so didn't have a feeling and needing to rush to the toilet - couldn't hold on as it were. I've now had my implant for about 10 months and it has changed my life somewhat, I do have the occasional problem but I can deal with that.

 

If you want to ask anymore questions feel free to pm me.

 

Buttons

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Sorry been away so long, however finally saw my new GI doctor, and had a colonoscopy yesterday. Colon looks fine however he feels my involuntary anal sphincter is not working properly and wants me to have a anorectal manometry. Believes this is a secondary condition due to scleroderma. Says very hard to correct and not too many doctors deal with this issue. After second test is done he suggests some biofeedback work. Not sure if will help situation because its the involuntary muscle and I have no control over it. Anyone have similar or like diagnosis that they have had any successful treatment for?

 

Thanks in advance for any help.

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It is so hard to bring this topic up isn't it?

 

I have told no one I know about it. I infer I have a weak bladder, as a reason I am always rushing to loo. I think I have found this the single most difficult thing to deal with as part of Scleroderma. When I was being tested for possible Pulmonary Hypertension (a really really nasty development) I felt better able to handle that than the bowel incontinence.

 

Although I am now in Australia where I have done nothing about it, in London I was referred to a clinic with a specialist unit. I missed the appointment due to a family emergency and lost my place in the clinic. I only realised it was part of the Scleroderma via one of these Forums, so thanks to all of you who share these things publicly. It really affects my life. I had some chance of a relationship with someone when I looked for help three years ago in London. I gave any idea of that up when I lost the place in the clinic. It is one of the times when medical people say things like 'you can lead a normal life' that I want to scream "No I can't".

 

I live my life by referring to the disease as little as possible, but this is one aspect I find doesn't fit the strategy.

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Hi Kipcakes,

 

A timely post for us here at Scleroderma Australia.

 

We have been putting together a brochure named Dealing with Bowel and Bladder Problems.

 

For some years we had noticed how this problem was never talked about. Then we had one of our members write a wonderful article for our newsletter. The response was huge. So many people with these problems.

 

Speaking to people who said they never go anywhere due to this problem was very upsetting.

 

Pleased to say that our brochure will be going to the printers very shortly. We hope it helps deal with this so common problem.

:emoticons-group-hug:

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I will look forward to the leaflet. Just having other people talk about it is helpful. It took me about 6 years to even mention it to the Consultant at London hospital, and only when I saw the female. I work so hard on trying to sound well and positive when I make a hospital visit that I seldom mention these 'small' inconveniences. Now that I realise that many of these are signs of Scleroderma developing I know I MUST talk about them when I see medical people. I see the specialist nurse in Melbourne hospital deals with bowel incontinence (via a link on this Forum) and I rang her yesterday and will see her about it in a month with my next hospital appointment. Again, thanks to you all for giving me confidence to do this.

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At my first consultation with my rheumatologist, he asked me directly about bowel symptoms, urgency and incontinence. I blushed my way through the entire consult, but honestly asked his questions, as yes, I had been experiencing lots of "accidents" of not getting to the bathroom quickly enough. Still took me a couple years to get to the rectal specialist he recommended :P

 

But I finally did, and am having some improvement with added fiber, a change of one of my medicines to lessen diarrhea, and biofeedback therapy.

 

There are treatments out there, don't wait any longer!!

 

Good luck to you!

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