Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

Bowel incontinence


  • Please log in to reply
16 replies to this topic

#1 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 02 August 2016 - 10:07 AM

Hi Everyone,

 

Back again in need of some advice.  :wink:   The group home told me today that Gareth is increasingly going through

underwear.  They say it's as if he doesn't feel a bowel movement coming anymore; that he doesn't feel the need to go to the bathroom.  It just starts coming and then, he says *Oh, oh* and runs off to the toilet, but too late.  This is not diarrhea, just regular stools coming and he doesn't seem to realize/feel the urge to get to the bathroom beforehand.  Is this the bowel incontinence that many of you talk about?   :dont-know: Is it a nerve thing, such as no feeling?

 

Thanks!  Off to buy more underwear... :sad:

 

Margaret

Mom to Gareth, 28 years old, DS/ASD



#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 02 August 2016 - 10:46 AM

Hi Margaret,

 

It would be a good idea to get Gareth in to see his gastroenterologist, to determine what is happening, and whether anything can be done about it.  Bowel incontinence can be caused by many things, including neuropathy which can occur with both Downs and scleroderma (and other illnesses, of course.)

 

In the meantime, would it be possible for them to try to have him go to the bathroom on a regular basis, such as near the time he usually has issues?  For example, one or two timed breaks in the morning and/or afternoon, which might help it be less of such a surprise attack.

 

I'm so sorry he's having more issues. Be sure to give him another big warm hug from me! :hug-bear:

 

:hug-group:

 

 


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 02 August 2016 - 05:06 PM

Hi Margaret,

I know just what Gareth is having to put up with, that has been the problem for me for many years. There is and there isn't any solution if you know what I mean.

When I was in my 40's it started like Gareth says but over the years it changed to more like diarrhoea and now I have a fair amount of control by using a proprietary stool thickener. I still can't predict when I will need to go but it is not as bad as when I was younger. For me it can be 7 to 10 times a day then tne next day nothing.

A couple of years ago I had an SNS implant it didn't make any difference, but I did wonder if I had one when I was much younger it might have been more successful.

Shelley's advice might be helpful, good idea to have it investigated but I wouldn't get too excited. :hug-bear: :hug-bear: Hi Gareth.

Best wishes
Judyt

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 02 August 2016 - 07:37 PM

Hi Margaret,

I'm really sorry to hear that Gareth is having another problem and such an embarrassing one to boot! :sad:

Unfortunately, I haven't got any more advice to help you (thankfully I don't have this particular problem; constipation tends to be my bugbear).

Like Shelley has suggested, perhaps if you can see Gareth's gastroenterologist, they might be able to offer some help to you and be able to suggest why this problem has occurred.

A huge hug to Gareth from me! :hug-bear:

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)


#5 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 07 August 2016 - 09:58 PM

Scleroderma or other autoimmune diseases damage nerves and this causes communication failure between brain and many organs which is responsible for incontinence. Also, scleroderma is known to damage internal organs such as stomach issues causing acid reflux, bladder losing elasticity causing urine incontinence and urge to go frequently, neuropathy pain  causing intolerable pain as inability of muscles to communicate with brain, etc., etc. this list can go very long. Even though sphincter muscles are normal, however bowel incontinence results from nerve damage.  There are very few options, one is colostomy (intestine is connected to outside bag, which is extreme) or find ways to solidify stool. There are several medications are available for your GI doctor to try out.

 

I know there is no easy or even difficult solution. Sometime psycho-therapy  bio feedback may help.

 

Good luck, this is difficult issue


Kind regards,

Kamlesh


#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 23 August 2016 - 04:29 AM

Sorry Margaret, it's another surprise hurdle thanks to scleroderma and secretly, it's the one we all fear at some point.

I hope Gareth's doctors can figure something out. Hugs a plenty to you both.
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)

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 23 August 2016 - 04:31 AM

Kamlesh, may I ask about your post? I've never heard that about the bladder losing elasticity and as someone who has had issues from another cause, I'm intrigued.

Hope all is as well as it can be.

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)

#8 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 23 August 2016 - 07:08 PM

I have chosen to open a new topic as this is pretty broad topic.


Kind regards,

Kamlesh


#9 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 08 September 2016 - 08:54 PM

Can anyone share, how are they managing Bowel Incontinence?

 

I have gone through several solution, and currently my GI doctor is trying:

Cholestyramine (4-12 gms): Solidifies excess liver bile.

Viberzy (1-2 tablets): This is used in Crohn disease to slow down flow in intestines to help solidifying

Imodium: Further solidifying

 

Has anyone gone through "sacral nerve stimulation or neuromodulation"?

If so, did it help?


Kind regards,

Kamlesh


#10 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 08 September 2016 - 11:57 PM

Yes Kamlesh,

 

Been there, done that, got the T shirt!!!

 

Actually I haven't actually tried two of the medications you mention but I have tried Immodium and that just makes me vomit so is no solution for me, but I believe it can be for others.

 

I have had a Sacral Nerve Stimulator and it did not work.   Still have it under my skin but it is turned off.

 

In the end, the best result for me has been a daily dose of Psyllum powder which is marketed under several trade names.   Metamusil and Konsyl D are two names used here in NZ.

 

I guess I do actually, unconsciously, restrict my diet too.   Not too much fibre, enough fluid but not too much.   Because I also have Achlasia, which is lack of peristalsis and tone in the Oesophagus I eat almost nothing which is not cooked so once again not much roughage.  As well I don't have much appetite, if you are still hiking then you probably get hungry whereas I don't.   So not so much going in means not so much to come out.

 

It has taken a long time to get to this point and I do sympathise with you, I do remember the bad days.

 

Best wishes,

Judyt



#11 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 09 September 2016 - 03:13 PM

Hi Judy,

 

How difficult was the  trial? Should I consider trial of  Sacral Nerve Stimulator? Is trial data useful in making decision to have it installed?

 

Thank you and your experience gives me significant insight.  I need to make an habit to take Psyllum powder. My doctor has asked me to do trial and error and figure out which is correct dosages for:

Cholestyramine (4-12 gms)

Viberzy (1-2 tablets)

Imodium (1-2 tablets)

 

Last night, I took Cholestyramine (8 gms), Viberzy (2 tablets) and 1 Imodium. It was horrible night with extreme stomach pain. I also have small bowel obstruction and that makes situation even more difficult. 

 

Thank you and appreciate your insight.


Kind regards,

Kamlesh


#12 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 10 September 2016 - 05:20 PM

Hi Kamlesh,

 

Can't say really that my experience with the SNS was particularly helpful.   It never did work but the surgeon who treated me was determined to try.   Later on, a year or two on actually, he admitted that he wanted to do trial and actually implanted 3 Sclero ladies.   None of them worked which didn't surprise me, but I have heard from some people that they did find their implant worked.

 

I wonder if your Doc. really expected you to try all of those meds at once!!   Ouch! Immodium by itself is more than enough for me.   At least the Metamusil I take doesn't cause side effects like that.   It slows things down quite consideraby for me and that's just fine.

 

Best of luck if you decide to do an SNS trial.

 

Judyt



#13 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 10 September 2016 - 08:28 PM

Yes, I  have tried each individually without any success, and combination sometimes causes severe stomach pain.

 

Either Scleroderma has damaged my guts so badly or ?


Kind regards,

Kamlesh


#14 pamb

pamb

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 12 September 2016 - 06:36 AM

So glad I found this site. My approach to healthcare up to this point has been to ignore things and hope they go away. I tried exercise and alternative stuff. Minimal success.  I've finally given in and now I have a rheumatologist, cardiologist, gastroenterologist, dermatologist and a primary care doctor who are all helping me to deal with the symptoms related to CREST/Raynaud's, Barrett's Esophagus.  I hadn't thought about the bowel incontinence being part of this whole thing.  I've been doing Kegel Exercises and just sort of watching my diet. I haven't been embarrassed in public yet but guess I'll have to face this head on and see what can be done.  This being human is a humbling experience, isn't it!



#15 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 13 September 2016 - 02:50 PM

Hello Pam,

 

Welcome to Sclero Forums!  It's too bad you have such health issues, but wonderful that you are taking charge and tackling the issues head on. Getting the right medical team and becoming educated about your healthcare options can do wonders in improving our happiness and quality of life. 

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#16 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 14 September 2016 - 09:59 AM

Hi Pam,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with unpleasant symptoms and I hope that the bowel incontinence doesn't become too much of a problem for you.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialised knowledge and expertise.

 

Kind regards,


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)


#17 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 07 October 2016 - 08:52 PM

I have bowel issues & had an SNS fitted 6 years ago! It has helped by giving me those extra seconds to get to the toilet but I do find now that that I have an issue with leakage after passing stools which I find a bit difficult at times. Seems to be when I have days when I pass stools at least 4-5 times a day but then the day after may not go at all! I was told mine was due to nerve damage. The SNS helps I feel but not totally.

I do use Imodium on bad days but only in small amounts because then it can swing the other way.

Buttons