Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Fecal Incontinence/Bowel Control


  • Please log in to reply
22 replies to this topic

#1 JeniGreat

JeniGreat

    Newbie

  • Members
  • Pip
  • 7 posts

Posted 25 October 2010 - 06:24 AM

Hello All,

I am new to the forum. I am currently undiagnosed. I have been told that I have one or more of the following diseases: Scleroderma, Rheumatoid Arthritis, Lupus and/or Ankylosis Spondilitis. I have recently been diagnosed with Raynaud's. I am on plaquenil for undiagnosed autoimmune disease, Vit. D3 2000 IU daily, Cymbalta for Fibromyalgia-type pains and depression and a Women's One A Day multivitamin. I have had fecal incontinence about 4-5 times in the last year. There is no warning of what is about to happen. When you realize you have to go, it is too late. It is rather embarrassing when you have to wrap a sweater around you, go to the restroom and clean up to the best of your ability and then go tell your employer you have to leave due to an emergency and you hope that they don't see or smell anything.

Being that I am undiagnosed I am trying to figure out if this is a symptom of any of the diseases I have mentioned above. I go back to my rheumatologist on Nov 15th and will mention it to him then but, in the mean time, has anyone else suffered with this? If so, what is your diagnosis?

Thank you,
Jeni

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 25 October 2010 - 06:45 AM

Hello Jeni,

Welcome to Sclero Forums! I'm sorry you are here because of concerns about your health, but glad that you have found us.

Please keep in mind that I'm not a doctor, in fact, I have no medical training at all, and verify everything I say with a reliable medical source. As it happens, I know that fecal incontinence can occur with scleroderma bowel involvement. I don't know about the other diseases, though.

There are also some treatments available for it, so do be sure to consult a proctologist (colon/rectal specialist) for advice.
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 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 25 October 2010 - 06:55 AM

Oh Dear Jeni,

Yes. I have experienced the same. My diagnosis is diffuse sysemic scleroderma (systemic sclerosis. My gastrointestinal doctor says that one or more of my medications may be causing my abdominal cramping and urgency but the incontinence issue was never directly addressed. I can't assume that the incontinence is also med related so I blame it on the disease because don't they seem to be two seperate things? Before my illness I never had incontinence with diarrhea, nor did I have the urgency.

You hang in there! And best wishes for a speedy diagnosis - hope your doctors can nail it down soon - and get your treatments tailored to what will be best for you.

((((Big Hugs))))
Barefut

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 25 October 2010 - 06:57 AM

Hello JeniGreat

Welcome again, I've just said welcome on your other post you see. We have a lot of information about scleroderma including symptoms, in particular gastrointestinal involvement. There are others on the forum who have experienced fecal leakage and they will no doubt join in, in the meantime have a read of a previous thread about the problem.

Take care and keep posting.
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)

#5 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 25 October 2010 - 07:36 AM

Hi Jeni,
I have diffuse scleroderma diagnosed in 2004. I have had bowel issues for most of my life. My latest development is that when I urinate, in the bowl will be a small piece of solid bowel. I do not feel it coming out. I talked with my general practitioner about it first, he called it incontinence and asked if I ever soiled my pants, which I haven't. My scleroderma specialist said the disease can damage the sphincter muscle and that might be causing it. My gastrointerologist checked the muscle and said it worked fine and told me to take a fiber supplement. I return to him in a month.So far there has been no change. I am on a lot of medications, mostly anti-rejection medications for my recent kidney transplant. One of them (myfortic) causes diarrhea which plagued me at the beginning but seems to have settled down.

I just chalk it up to the disease, as I do many issues I have that doctors don't seem to be able to give me an answer on. I'm fortunate, as I do not work and am on disability so I almost always have access to a bathroom, but I was a teacher for 27 years and know how difficult it can be to have access sometimes. Are you on a scheduled program of colonoscopies? Mine are now every two years. If you haven't seen a gastrointerologist yet, add one more doctor to your list.

miocean
ISN Artist

#6 Joelf

Joelf

    Star Ruby Member

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

Posted 25 October 2010 - 07:37 AM

Hello JeniGreat

A warm welcome to this friendly and informative forum.

I'm so sorry to read about the fecal incontinence you've been suffering with; it must put you in a very difficult situation whilst you're working, or in fact trying to do a lot of things in your daily life.

Thankfully I don't have any gut involvement at present so can't advise you, but I do hope that your doctors will be able to confirm your diagnosis and then sort out the medication so that you're spared the ghastly problem of being caught short at the most embarrassing and inconvenient moments. :o

Keep posting and do let us know how you are getting on. :)

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)


#7 JeniGreat

JeniGreat

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 7 posts

Posted 25 October 2010 - 07:38 AM

Amanda,

Again, thank you for the assistance. The information you provided has been very helpful. I especially appreciate the previous thread. It is nice to hear that I am not alone, however, at the same time I hate to hear that so many people have had to deal with this.

Again, Thank you so much for your assistance and for the warm welcome to the forum.

Sincerely,
Jeni

#8 red

red

    Senior Bronze Member

  • Members
  • PipPipPip
  • 96 posts
  • Location:Upstate New York State

Posted 25 October 2010 - 11:26 AM

Hi Jeni, welcome to the forum, sorry about your health issues that have brought you here.

I am diagnosed with limited scleroderma and I have the fecal incontinence as you described. I have very little, maybe only a minute or so of warning, and if I've not gotten to a bathroom in that time, I can't hold back a bowel movement. I've had accidents in stores, in the car, at work, you name it -- terribly embarrassing, but yes you should mention it to your rheumatologist. I don't know if the other diseases you mentioned can cause the loss of bowel control, but your doctor can advise you. My doctor said it's definitely due to the scleroderma in my case, he said when someone has esophageal dysmotility as bad as I have, the rectal muscles are invariably affected as well. He's recommended seeing a rectal specialist but I haven't yet built up the courage to go, dumb I know, I am resolving here and now to put aside the embarrassment and make the appointment tomorrow!

Good luck to you and know that we are all here for you!

red

#9 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 25 October 2010 - 12:27 PM

Hi Jeni,

Welcome to the forum! I'm sorry you are at that "it might be this or it might be that" stage of the diagnostic process. It's frightening, frustrating, and at times aggravating too. Hopefully your doctor will have all the information he needs to narrow it down by the next time you see him.

You have probably already figured out that fecal incontinence isn't an uncommon occurrence. I don't know if it can be used to narrow down a diagnosis, though. There are so many things that can either cause or contribute to that problem. It could be scleroderma related, could be Irritable Bowel Syndrome (IBS), it could be lots of things. You might want to check out our Bowel Involvement section for more information.

As Shelley said, there are a variety of treatments available. I have recently developed IBS, but with some attention to my diet and and an anti-cholinergic/anti-spasmodic medication (which helps immensely with the urgency issue), things are vastly improved. :) I still carry a sort of adult diaper bag (wet wipes, clean undies, etc.) in my purse and usually have a change of clothes in my car, just in case! Well, I had to find some use for the nifty little gym bag a friend gave me, didn't I?:lol:

I hope you'll post often and we'll all be anxious to hear how you get on at your next doctor's appointment.

Best Wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#10 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 25 October 2010 - 03:14 PM

Hi Jeni,
I'd like to join the others in welcoming you to the forum! As you have already witnessed, it's a very friendly and informative place. You've been provided some great links and information so I'll just add one thing. Try to see if there might be a correlation between occurrences and diet, meds, stress or activity. By tracking the incontinence with these things I found that stress and certain foods (e.g. chips, whole grains) were trigger points. As a result I've been able to greatly reduce the occurrences.

Good luck Darlin!
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#11 JeniGreat

JeniGreat

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 7 posts

Posted 26 October 2010 - 03:03 AM

I would like to thank all of you for kind words and for making me feel so welcome to the forum. This is a very embarrassing topic and you have all made me feel very comfortable talking about it.

I plan to mention this to my rheumatologist on Nov 15th. I assume he will refer me to a gastroenterologist and if not, then I guess I will take it upon myself to find one. I have never had a colonoscopy but, I guess I will be having one in the near future. And probably on a regular basis thereafter. YUK!


Jeannie, I plan to take your advise and keep an adult diaper bag here at work and one in my car. Yesterday, fortunately, I drove the carpool to work, otherwise I would have been without a car and I'm not sure what I would have done in that case. I guess I would have had to call my husband to leave work or my son to leave school to come get me. I live an hour from work so I was gone about 2 1/2 hours.

Red, It is now 'tomorrow', have you scheduled that appointment yet? If not, build up the courage and make that call. Please keep me posted and I will do the same.

Again, thank you all very much. I know this is an embarrassing subject and its not exactly easy to talk about so I sincerely appreciate everyone's imput.

Sincerely,
Jeni

#12 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 26 October 2010 - 04:03 AM

Hi- Who'd a thunk that I would spend time talking to perfect strangers about bowel problems? But as you can tell, it is a problem for many. I have something that has helped me- It's to learn to feel better when "going" is coming (what a phrase.)

It is now something that I do not ignore- which is so easy to do when you are busy and occupied and young and healthy. But, for me, I found that there are "feelings" that give me some warning- they are just much less than used to get my attention. Used to be that these early warnings were not so urgent an issue but now I act on them. No more just need to get this done then I'll take care of that.

It takes time to adjust - things can get better with meds and practice, so don't think this problem is unresolvable.

I hope that you find answers soon and they are good ones.

#13 red

red

    Senior Bronze Member

  • Members
  • PipPipPip
  • 96 posts
  • Location:Upstate New York State

Posted 26 October 2010 - 11:19 AM

Hi Jeni and all, I did take that first step and made an appointment with a rectal/colon specialist, will be seeing him Nov 24! I knew if I posted that promise yesterday, I'd have to go through with it!! I'll let you all know how it goes. I've already had a colonoscopy and am due for another next summer, but at least for that you're sedated - no embarrassment there! It's a whole 'nother ballgame relating bowel problems face-to-face. And the worst part about it is that I blush super easy, which makes me feel even more embarrassed that everyone knows I'm embarrassed!! You'd think at 51 years old, I'd be too old to blush like a teenager, but it's the truth. Oh well, maybe it makes me look younger...

red

#14 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 26 October 2010 - 11:46 AM

Red, I am so proud of you! Major congrats on making an appointment with a rectal/colon specialist.

I know how you feel about being embarrassed. I had really major problems many decades ago (nonstop bloody diarrhea, every day) for over a year before I told my doctor about it, because I just didn't know how to talk about things like that. You'd think giving birth would have gotten me over issues like that, but it hadn't. I was very concerned about the face to face encounter.

Low and behold, I discovered that proctologists are also uncomfortable talking about things face to face, as like as not, they see you only when you are bent over, with your back facing them! :o

Needless to say, dealing with ulcerative colitis for a very long time left me completely at ease with stuff like that. I am just extremely fortunate that was all it was, and not bowel cancer. My fear of disease should have been greater than my fear of embarrassment. Luckily I overcame that in time, but I often wonder if I wouldn't have suffered as much if they had started treatment for me the first week that I developed it. As it was, it really wore my system down which seemed to bring on all sorts of other problems.

So I'm sending a huge "good for you!" bouquet of flowers for now, and some warm hugs for later. You'll be okay! And remember, you are not alone. Go ahead and blush, nobody ever died of embarrassment, but the embarrassment of uncontrolled bowel issues could be an awful lot worse.

:flowers::emoticon-hug:
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.

#15 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 26 October 2010 - 01:25 PM

Hi Jeni

Welcome...just a tid bit, in case you are thinking about it,don't give the colonoscopy any worrisome thoughts...they are not difficult to do...and you pretty much have no clue that anything is going on and then suddenly it's all over!! Some doctors even even fully sedate. I've always been slightly aware but so drugged, totally clueless and pain free.
Sending good wishes your way!

#16 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 26 October 2010 - 03:11 PM

Hi Jeni!

Welcome to our family. I'm so glad you have joined us. I personally have not had any problems with this, but I do know of several on here that have, and I'm sure they will share their experiences with you.

So glad to have you! :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#17 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 26 October 2010 - 03:29 PM

I've had such long history with doctors and hospitals that I have overcome embarrassment and modesty. All this leaving the room while I take off my clothes for an Echo makes me wonder why? The tech is going to see me anyway. My gynecologist holds her conference with me while I am half naked on the table with a cover over me, which at first I found uncomfortable because I was used to the doctor conferencing with me in the office and then examining me, but I am used to it now.

My gastrointerologist and I have an 18 year relationship and although he is not an expert on scleroderma, is familiar with me. I first started going to him because when I was running a couple of miles at a clip (those were the days) I would sometimes have to duck in the bushes (it was very early in the a.m. so there wasn't anyone around, but still illegal) or I would mess my pants. When I saw him about the recent incontinence he used a very colloquial term!" The doctors in the field know it is an embarrassing topic but think about how many people stay away from their doctor and medical issues because it is, and end up with really serious problems like dying of colon cancer. We all have been poked, prodded, stuck, and embarrassed because of this disease. I wouldn't walk down the street naked, and appreciate the covering provided during an exam or test, but more for warmth than modesty. With a doctor or in a hospital setting I figure I don't have anything they haven't seen or probably heard before.

By the way, the fiber supplement has done nothing to improve the piece of stool that constantly shows up in the bowl. I hope I'm not being too complacent but there are somethings I just chalk up to the disease.

Just an FYI, after my kidney transplant my wound bled for weeks and even with bandage changes I was ruining underwear so I had my husband pick up disposable ones. There was one or two occasions they came in handy for sudden diarrhea from the Myfortic. If you are really having problems they could help you out. They are a little bulky and I found them hot, but if an accident happened you could just toss them, clean up, and put on a new pair.

miocean
ISN Artist

#18 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 26 October 2010 - 08:32 PM

Hi Jeni

Dealing with bowel incontinence is hard but you've taken that first step now and it will become easier for you to discuss it with your health professionals. I have been through the colonoscopy and all the other tests that they do and it was embarrassing at first but it does get easier. I have had a Sacral Nerve Stimulator put in and it has really helped me, by giving me a little more time to get to the toilet. I do sometimes still get a slight leakage after I have been because it doesn't cure it altogether but I have seen about 98% improvement so I just see the odd time now has a blip. I do carry spare undies and toilet wet wipes with me etc.

PM me if you want to ask anything more.

Buttons

#19 JaneLesley

JaneLesley

    Bronze Member

  • Members
  • PipPip
  • 27 posts

Posted 26 October 2010 - 11:34 PM

Hello,

I am so very sorry to hear about the problems you are experiencing. From the responses you already have received you are going to have a lot to take in but I wanted to let you know that I started on Plaquenil back in January and within weeks experienced my first bowel incontinance. I found that once the cramps started I had a maximum of 6 minutes to get to the nearest bathroom and very regularly didn't make it.

I stopped taking Plaquenil eight weeks ago and have to say that I am feeling oh so much better and have not had a stomach attack since. I have had IBS since 1996 but taking the Plaquenil took this to a whole new level. A place I do not wish to visit again. I work full time and travel an hour each way to work - I often had to go home, clean up and start out again - not easy to explain why you are so very late for work!!

I was obviously fortunate in finding a quick solution to my problem - I sincerely hope you are able to do so as easily.

My very best wishes to you.

Jane

#20 JeniGreat

JeniGreat

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 7 posts

Posted 27 October 2010 - 03:38 AM

Red, I'm so happy that you made the appointment. I look forward to your update after your visit. I was embarrassed by everything when I was younger. Not a whole lot embarrasses me these days but, it took a lot of nerve to post a topic like this. I was desperate. After talking to so many of you though I have come to see that it isn't such an isolated issue and I think I will feel much better discussing this with my physician knowing that this could be another symptom to the "unknown" disease. Maybe this could help determine what I have.

Snowbird, My husband had to have a colonoscopy once and the anesthesia they gave him erased his memory of the entire thing. He didn't remember anything from the drive home or for the rest of the day for that matter. My mother on the other hand, made me drive her straight to Red Lobster and go shopping when she was done with hers. I guess that was my treat for her not being a very good host the night before being that she spent the entire evening in the bathroom while I watched TV by myself. I assume that is the worst part of the entire thing. LOL

Shelley, I'm so sorry that you had to deal with that. I think the blood would have scared me half to death.

Sweet. Thank you for the warm welcome. I'm very glad that I joined this forum. It has been so very comforting and informative.

Miocean, Not to complacent at all. You're right...I need to just chalk it up to the disease and deal with appropriately. It can't be ignored so I will definitely discuss with the doctor whether I'm embarrassed or not.

Buttons, I had never heard of that procedure (sacral nerve stimulator)before. Was this something that you dealt with for a long time and medication didn't help before this procedure was recommended to you? Interesting...I had no idea something like this was possible. Technology is an amazing thing.

Jane, I don't think its the Plaquenil because I've been on it for 2 years and the first year I had no problems whatsoever. The problems started right around a year ago. I remember exactly when it was because I had gotten my first (and only) tattoo on my foot in memory of my aunt who had been killed in a car accident. I got the tattoo on her birthday (November 28th) and we (4 cousins and my aunt) went to the store to get the cream we needed. Well, someone was in the women's restroom so I ran in the men's but it was too late. Anyway, I don't think it is the Plaquenil for that reason. I mentioned to my family doctor that I had fecal incontinence but he just said, "Its IBS" no questions asked...and prescribed me Hyoscyamine. I've used it a couple times when out to dinner but, I will be using it more often now. I also work full time and travel and hour to work each way. Fortunately, we have a Rest Area on my way to work and I have used it a couple times. Never late for work because of it but, I have had to leave work twice now due to it. I just say, "personal emergency...I have to go home" and I head out as fast as I can. I now take my cell phone to the restroom with me and take my purse so if I need to leave I can call from my phone and head straight out the door from the restroom.

Again, I thank you ALL so much for your comments, concerns, warm welcomes, advice and most of all the comfort and understanding! You ALL are wonderful people and I sincerely appreciate each one of you.

Jeni