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judyt

Thinking about a Stoma

10 posts in this topic

Hi Everybody,

It is a long time since I started a new topic but I have a question.   How many of you out there have opted for a Stoma as a way of coping with Bowel Incontinence?

 

I first asked a Colorectal Surgeon (Mr. A) to perform this surgery in 2011 and he insisted that first we should try an SNS.   I agreed although others had assured me it would not work.   Of course they were right and earlier this year Mr.A admitted to me that he had wanted the opportunity to try out the SNS with some Systemic Sclero. patients.   Apparently he did 3 surgeries and none of them have been successful so now he says that he will give me a Stoma whenever I am ready.

 

Well, now I feel ready but would like a bit more feedback from others who have gone the same route.   There are sites on the internet talking about this subject for all sorts of reasons but I haven't seen any coments or stories from any Scleroderma ladies.

 

If you have a Stoma or are contemplating one, perhaps we could talk about it here.

 

Judyt

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Hi Judy,

 

I'm really sorry to hear that you're having to contemplate having a Stoma surgery.

 

Thankfully, I've never had bowel problems, so can't advise you.

 

Buttons has had experience of bowel problems and surgery and so it's possible she may be able to give you some first hand advice.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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HI Judy,

I don't know anyone with scleroderma who have stomas, I know several who have them for other reasons. I know you have tried everything if you are at this point. Do you have any issues with healing? I imagine that would be the biggest concern about the surgery itself. I had some slow healing from my kidney transplant but believe it was due more to sloppy placement of the staples than my healing ability.

 

Thinking of you,

 

miocean


ISN Artist

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Hi mio,

 

Yes I have to say that I have had some misgivings about the process of having an Ostomy or Stoma.   Not sure what to call it, some sites say Ostomy is the right term and Mr.A said Stoma - whatever, I think we all know what I mean.

 

My misgivings about the process arose from the fact that I had such an ordeal after my open heart surgery in April.   You might remember that I acquired Inhaled Pneumonia and getting over that was a nightmare.  However, Mr A. said he would take every precaution!! and it could be done laparoscopically which is the least invasive method.  

 

I have an appointment to see him on 9 December and I want to be as educated as I can be by then.   I need to be very sure that it is the best thing to do and that is why I have asked for personal experiences from others.

 

I am sure there are plenty of others out there who have the same problem and would love to know how they manage it.

 

Judyt

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Hi Judy....I do know what a stoma is but I'm not sure for the reason.....meaning.....is this scleroderma caused?  Does the southern part of the body become harden like the esophagus?  I was under the impression that constipation was the issue with scleroderma.    Do the intestines stop working completely?  Just curious and wanting to learn more.

 

Have a good day, Everyone.

Margaret

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Hello Margaret,

 

In my case yes, the nether regions of the GI tract have become atrophied and have no interest in working properly.  

 

Diahorrea or Constipation makes not a lot of difference.   In one case it is impossible to control the flow which leads to some fairly disgusting deposits in the wrong place.   In the other case it is impossible to move things along, there is no muscle tone to bring into play!!

 

The first thing I noticed many years ago was a prolapse which was eventually repaired and a few years later the anus was tightened and both of those things helped (didn't cure anything) to a degree.   Now take a stool thickener daily - scared to miss it - so instead of uncontrollable diarrhoea I am verging on being constipated :wink:

 

When I was in hospital on antibiotics to cure the Pneumonia I had to wear adult diapers 24/7 and get help frequently.   I felt 20 or more years older so just imagine being a nurse with a 90 year old with the 'runs' to look after.   The prospect of that happening again has prompted me to try another solution.  

 

I suspect this is what I will choose but am hoping for some personal experience stories.   At one time I shared a hospital room with a young lady with Ulceritive Colitis who had just had an Ostomy procedure.   She was happy as a sandboy because her pain and other problems were solved.   Hers was only temporary to allow the bowel to heal - mine would be permanent because there is no way I know of to re-juvenate atrophied muscle.

 

Too much information! for you probably Margaret but who knows what is in store for Gareth, particularly if he has Systemic disease.

 

Best wishes from the upside down side of the world

Judyt

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Hi Judy,

 

Very sorry to hear how badly your gut and bowel are affected. The whole thing sounds very unpleasant and embarrassing!!

 

I can't suggest anything more to help you, but I do hope that if you decide to go ahead with the surgery, it does improve things a lot for you.

 

Margaret, here's hoping Gareth doesn't develop the complications that Judy has described!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Judy, I am so sorry you have reached this stage & are now having too make such a difficult choice. I have an SNS and it has helped me but my issues are more down to nerve damage. 

All I can tell you is that my brother has a permanent Stoma due to severe Ulcerative Colitis and he is really happy because he doesn't get the pain & other issues anymore.

 

Best wishes

 

Buttons

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Hello Margaret

 

Sorry but scleroderma can muller the bowel as well! It can affect the entire gastrointestinal tract. My dear friend's gastrointestinal tract is affected from beginning to end. Quite literally. However, as you know what one person has another doesn't.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Judy

 

Big step but what a relief it could be for you.

 

I have no personal experience and wish you the best.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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