Author Topic: Embarrasing and difficult situation  (Read 7398 times)

eyeamdry

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Embarrasing and difficult situation
« on: December 13, 2012, 05:20:33 PM »
I have been having a problem occasionally in the past 2 or 3 months and I hesitated to put it on the board.  But, what the heck, people put all kinds of embarrassing stuff on here.

I have had several occasions where I was unable to control my bowels.  This is like diahrrhea that "just comes" and there is no holding back, no finding a bathroom, no time for anything.  It has happened in a store twice (once tonight),  at my dinner table and even once during my sleep.  I know this type of thing often happens after a meal.  A few of mine were after eating.  The one that happened while I slept is a mystery as I am a light sleeper.

My colonoscopy doc (having a senior moment) is one I have to call back and get an appt asap.  I had an MRI done on some of the other problems I've been having (weakness, problems walking) and even though I've had a recent colonoscopy, the MRI seemed to show "some darkness" that maybe shouldn't be there.

I really am afraid to go anywhere.  Tomorrow I go to my hairdresser and then to the PT place.  Goody.  I was reading something about chewing gum may cause diahrrhea because of some ingredient in it.  I am also thinking that I am now using ORAMOIST at least once at night and maybe 2 or 3 each day.  This is made with xylitol and I've seen that causing diahrrhea, although there isn't much in those OraMoist tabs I take.  I haven't had a change in meds to tie in with this.  Helpl any ideas.

curtandy12

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Re: Embarrasing and difficult situation
« Reply #1 on: December 13, 2012, 05:38:37 PM »
 :) That has happened to me in a store as well, and also on a couple of more occasions,I didn't know at the time I had sjogrens, and all the other immune stuff, I still have to really watch it and just like you sometimes I feel safer staying home, on an up side your not alone and I am new to this since yesterday or so and am so glad I joined, at least I'm not alone. curtandy12

Scottietottie

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Re: Embarrasing and difficult situation
« Reply #2 on: December 13, 2012, 05:39:40 PM »
Hi Lucy

I hear you. I have not had bad episodes of this - but I have had episodes and most times =- when I need to go - I NEED to go. you know you have to ask the doc - and have the tests - and I hope you get some answers. It's a horrible feeling. Oddly enough the worst episodes have been when I was not aware I needed to go - but it happened anyway - but not in quantity.

I hope you get the answers you need.

Take care - Scottie  :)
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Joe S.

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Re: Embarrasing and difficult situation
« Reply #3 on: December 13, 2012, 08:46:33 PM »
I had that problem in the hospital and the nursing home. I was so happy to get out of diapers!
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Bobbie

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Re: Embarrasing and difficult situation
« Reply #4 on: December 14, 2012, 02:55:48 AM »
Hi Lucy,

This happened to my Mom.  She was diagnosed with Diverticulitis.  Does your stomach
gurgle and hurt when you eat anything with seeds?

Just a thought.  Hope you find out soon.

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gurs

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Re: Embarrasing and difficult situation
« Reply #5 on: December 14, 2012, 03:56:59 AM »
So sorry sweetie...I have major stomach issues, and cant eat out etc anywhere. I havent been out to eat in over 6 years. I have to be at home. I get extreme gas pain and stomach issues when I eat...anyways, my mom has this issue and its all from her anxiety..

Yours might be some CNS issues..best to have your stomach checked and go from there.

Any new medications or supplements you started when this began?

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LisaMarie

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Re: Embarrasing and difficult situation
« Reply #6 on: December 14, 2012, 04:22:33 AM »
This is one reason I stopped running.  I would get bloody diarrhea while running.  Burns like heck. 

Put a big pad on and carry extras.  And wipes.  That way if the accident happens, you can clean up easier without anyone knowing.  I do that if I run.
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anita

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Re: Embarrasing and difficult situation
« Reply #7 on: December 14, 2012, 05:21:27 AM »
No intention to hijack the thread, but want to address a posters comment.

Gurs,

I have seen other posts about your stomach issues.  I know you have gastroparesis.  Have you ever been checked for SIBO (small intestine bacterial overgrowth)?  It is a common complication of gastroparesis that causes intense stomach gas, bloating, and other GI problems.

The good news is that there is treatment for it...a special antibiotic just for this type of bacterial overgrowth.
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Tivia

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Re: Embarrasing and difficult situation
« Reply #8 on: December 14, 2012, 09:05:15 AM »
Lucy, is it possible that the sjogrens is attacking the nerves that control bowel function? Have you talked to the doctor about that possibility. I thought I read an article somewhere that sjs can attack the nerves in the spine that control continence. 

sissyjane

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Re: Embarrasing and difficult situation
« Reply #9 on: December 14, 2012, 09:12:40 AM »
I have had this since August, and a friend suggested that I try probiotics. I did, and it totally stopped. It's a box of pills, and I can't remember the name. I'm away from home, so can't look it up.

eyeamdry

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Re: Embarrasing and difficult situation
« Reply #10 on: December 14, 2012, 02:51:01 PM »
I haven't found out anything yet as I haven't seen the colon doc since this started.  I do not know what's causing it. When it comes, it just shoots out and nothing I can do to control it.  I was lucky last night because I at least had on a Pampers (adult diapers).  I had the forethought to do that even though we only went to a store.  I'll spare the details of how I dealt with it.  Was close to ladies bathroom.  That helped.

I have been thinking all day about the XYLITOL that is in the OraMoist I've been using.  Even though you would think the small amount in one of the tablets could not cause trouble, I sometimes use 3 a day.  These melt in your mouth usually while you sleep.  I had two appointments today that I cancelled.  One to the hairdresser and one to the Physical Therapy place.  I was afraid this might repeat while I was at one of those places and I couldn't risk it. 

It is possible Sjogrens is causing problems with the nerves that control this.  I will be checking for anything as soon as I get in to the colon doc.  This is not regular diarrhea as it happens once and then not again until an episode happens a week or two later.

lighthouse33

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Re: Embarrasing and difficult situation
« Reply #11 on: December 14, 2012, 03:13:59 PM »
I have had this since August, and a friend suggested that I try probiotics. I did, and it totally stopped. It's a box of pills, and I can't remember the name. I'm away from home, so can't look it up.

Are you thinking of Align?  That is what I take. 
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jazzlover

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Re: Embarrasing and difficult situation
« Reply #12 on: December 14, 2012, 04:37:30 PM »
I have had this since August, and a friend suggested that I try probiotics.

-

Do that and stop the Xylitol ASAP! See if it solves your problem.

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irish

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Re: Embarrasing and difficult situation
« Reply #13 on: December 15, 2012, 12:08:33 AM »
Lucy, I am sorry to hear this. I will tell youo that my friend with sjogrens and diabetes had this happen a couple of times when she was in a store. She had been telling me that she had constipation and problems with her bowels.

I informed her that when I worked at a nursing home we would give the people stool softenors at bedtime for 2 nites and then on the third night we would give them some milk of magnesia. This helped to keep the colon cleaned out on a regular schedule. Sometimes when a person is contipated they can have a loose or watery bowel movement that literally slides around the hard stool. Sort of like a pipe that is plugged up with water pressure behind the plug. Remove the plug and everything works better.

I would speak with your doc if you want to try this. Also, neuropathy in the colon can cause this. Diabetics can often be afflicted with this. It is very possible that you are having this from neuropathy that also seems to be affecting your legs. Or whatever, is affecting your legs.

I still am of the opinion that something is going on with you. Have you tried a second nuerologists opinion yet??? So far it sounds like the legs, bowels, breathing are affected. Have you noticed arms or swallowing being affected at all??? Keep on those docs to dig in and diagnose this issue. My thoughts and prayers are with you. Also, put on some Attends and have a contingency plan in order for those trips out. Maybe use an enema the night before going for an appointment. Just a thought. Irish

quietdynamics

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Re: Embarrasing and difficult situation
« Reply #14 on: December 15, 2012, 03:33:14 AM »
Hello Lucy...
Embarrassing and difficult ... absolutely.  :(

4/11? After a clean colonospy, the GI prescribed  a regiment of Dicyclomine and Metamucil. Since the GI found nothing conclusive I did ask what he was going to put down on insurance; IBS.
Dicyclomine is used to treat the symptoms of irritable bowel syndrome. Dicyclomine is in a class of medications called anticholinergics. It relieves muscle spasms in the gastrointestinal tract by blocking the activity of a certain natural substance in the body.

Interestingly, it was after my chronic headaches/migraines were treated by a Nuerologist (consulted when I had a jaunt to ER) and I was weaned on Topamax, I was able to not have to take the Dicyclomine everyday. As a precaution, I did still take the Dicyclomine before I went out on errands ( I am disabled per SJS), then I felt confident to try not taking it..but, carrying it with me.

Background: I had some gastro episodes, then one that lasted for months. Drank Gatorade to try to keep hydrated and was homebound.  Talked about it to Rheum..who said that what not her area..she got me in to see the GI. I only would take one dose of Dicyclomine..as it would leave me constipated...thus the Metamucil.

After comming under the care of the Neuro; I found that I was not having GI episodes as before.

During times of high physical/emotional/mental stress I may now need to take a Dicyclomine, but the gastro event will now last 1-2 days (and I rest). I started Topamax 11/11?...so based on my experience (and keeping the Neuro diary) I feel strongly that my disabling symptoms are CNS. I did inform the Neuro of the areas where his care has helped me (whereas Rhuem has been a bandaid in comparison.)

In addition: I do try my best to adhere to an anti-inflammation diet. Fresh salads, fruit, fish, no high salt, sugar, processed foods....and when I slip ..I really feel the difference, skin dries out, fingers swell, edema around eyes, tendon pain.

Lucy these are the events/things that have helped me. To date I have had few  GI problems, and those are minor compared to before.
...and of course prior to SJS ...I was a rarely ill, no gastro issues noted.



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