JeniGreat

Fecal Incontinence/Bowel Control

23 posts in this topic

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)

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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

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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

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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

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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

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Hi Jeni

 

I had problems for sometime, after my first visit when they did all the tests I had to start doing biofeedback for about 6 months & then was tested again there was no improvement. Then I was put forward to have the nerve stimulator put in place, I had a trial one put in for 2 weeks to see if it helped, before & during this time I had to keep a daily monitoring record and have had regular monitoring done since.

 

I was told it was used for bladder incontinence & pain management but my consultant had done trials for using it with bowel incontinence and had a lot of success with it. I'm certainly glad I had it done because it has made a big difference to me.

 

Buttons

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Hi Jeni,

 

Oh, how this thread :wacko: hits home

 

It's unfortunate that so many of us have this troublesome problem in common. I too, deal with this on a (mostly) daily basis.

Because my internist moved to Hawaii (poor thing...tongue in cheek!), I was once again, forced to seek out, yet another, which is difficult for those of us with chronic illnesses).

My "doc of choice" turned out to be my husband's dr. Even though he knew my health history (having stepped in for previous doctors on two occasions), I must have overwhelmed him with my questions, on the first visit.

This happened to be one of the problems I "tossed" to him and he told my to do kegel exercises....YIKES!!!

It was as though he stuck a pin in me...and I was a balloon :o

I have spoken to three doctors, prior him and (coincidently), they were ALL men and I received a cool response, which left ME stunned, as two of them were gastrointerologists!

Needless to say, I surely can understand your frustration/desperation, concerning the "lack of compassion" and resolve, on the part of the doctors you also have come to with this problem.

 

At any rate, as you have mentioned...you don't stand alone on this issue, Jeni, I'm sorry to say.

 

By the way, this has GREATLY affected MY outings (too)as well, as the first thing I do is scope out the locations of the restrooms.

 

Fingers Crossed, my (female) rheumy is able to be more compassionate and I hope you have better luck too!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Jeni, go t a Gastroenterologist. They make you feel so comfortable and talk easily about bowel incontinence. My family doctor really didn't understand how bad I was doing with incontinence but my gastro doctor has helped me out on several occasions. Sometimes it is simply bacterial overgrowth and a regimen of antibiotics puts you back to rights and no more surprises of running to the restroom or changing clothes a couple times daily. There are several medications out there that really work well if you are having problems. My Gastro doctor said that many people with Scleroderma have these issues. He is the doctor who informed me I had Scleroderma. We have been through a lot together. He is my favorite doctor. Make and keep your appointments. You will be happy to have this issue over and done with. No more sleeping with baby mattress pads protecting your bed. No issues at all once the problem gets under control.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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