Embarrasing incontinence question

[Nymph]

Hi all,

Where else would I ask a question like this?

Whether due to Sjogren's or accompanying dysautonomia, I experience frequent diarrhea. There has been a time or two when I soiled myself. Thankfully I was at home and not at work, but it had me worried.

Yesterday a bit of stool got through and it was solid and I didn't even notice it until I went to use the toilet!     I cannot tell you how disturbing this is for me. I do have the flu and was in bed resting when it happened. But still.

So now I'm looking up all kinds of Kegel exercises and wondering what's wrong with me. I'm not in great shape as my new teaching job has been taking all of my energy and I have not been exercising as much as I'm used to. Sometimes I wonder if I have CNS involvement and if that could be an issue.

Help?   

[Nymph]

I've decided that being out of shape could not possibly be the cause because I've worked with plenty of elderly people who sit on their butts all day long and don't have this problem.

I talked to my sister who is an NP once I got over not wanting to talk to anyone. She says "That's not normal" and that I should see a neurologist. I talked to my rheumy once about neuro problems and she said if I had them she would send me to Hopkins. So I guess I should write her a note... see what she says. I have to have a lip biopsy first to go to Hopkins, right? I've had a handful of possible CNS symptoms over the last few years, none of them consistent enough to do anything about. Except for dropping things. I'm a regular clutz now.

[Rabbit63]

Nymph, I feel for you.  I went through a 6 month period where I couldn't leave the house without taking Immodium. I carry chewable pepto with me at all times. I believe I also have CNS issues.  I noticed you take probiotics.  I had digestive problems with them. Just a thought. Hang in there.  Rabbit.

[Nymph]

Thanks, Rabbit! It's a hard thing to talk about, or even to admit to myself.     It's not a great time in my life or career to need to deal with new issues. And it's personally pretty appalling.

[Jenny]

Try laying off the magnesium. I was having the same issue a while back and discovered that magnesium was causing it.

[Nymph]

Thanks, Jenny. I have tried that and it makes little difference as long as I don't have too much. Plus then I get more migraines if I don't take it.

[Jasper]

Nymph .....

This problem sounds neurological to me. Sjogren's neuropathy can cause these types of problems with both urinary function and bowel function.

Diarrhea can be caused by a number of things including neuropathy but being unaware that one is incontinent is not a usual scenario, even with diarrhea. That sounds like neuropathy.

I have never been incontinent of stool but I have had urinary problems, some of which are probably neuropathy or inflammation related. I have noticed that when I am in a flare, I will dribble urine even though I have no urge to go. I don't enev know I am dribbling until my pants are wet. This only happens when I am in a flare. It never happens when I am not in a flare. So, it has to be inflammation related and it could be that the inflammation is affecting the bladder or urethral nerves so that I have no sensation of dribbling.  When I am not in a flare, I can go hours without urinating and I have no trouble holding urine even if I have a full bladder.

As far as Magnesium goes, there are formulations that do not cause diarrhea. I take Magnesium Glycinate and it is known for NOT causing diarrhea.

I think going to Johns Hopkins Sjogren's clinic is a great idea. They will do a thorough job of testing for Sjogren's related neuropathy.

[Nymph]

Thanks, Jasper. I have started the process! I really appreciate you sharing your experience.

[Carolina]

Dear Nymph and all,

I have every conceivable incontinence problem.  Mostly due to botched bladder surgery (had to be done THREE TIMES, and never succeeded), but also due to autonomic neuropathy.   My bowel doesn't move things along correctly and it is almost impossible  to empty my bowel, as well.

So, I wear incontinence pads and they are a blessing, what ever the problem of the moment may be.

But still sometimes I 'overflow' the pad, so I wear dark pants, of course!   

The sense of shame is so closely linked to bowel and bladder problems.  We think our other 'conditions' are difficult to bear, but nothing is as 'shame inducing' as bowel and bladder problems.

And yet, they are often part of the neurological damage of Immune Disorders. 

Since mine began before my Immune Disorders were raging (with my bladder) I've pretty much gotten over the shame part.  But when there are accidents it is still very unsettling, to say the least.

I even bought the adult diaper (which is really like underwear, but disposable of course) which I could wear with the pads, for double protection.  I haven't really worn them much, because I forget about them.

And then there's the disposing of the pads to deal with.  Plastic bags are best, so I always travel with lots of them, and the pads take up a great deal of my suitcase when I travel, too!

It's always something, and then, wouldn't you JUST know it, it's something else!

Hugs,  Elaine

[trc1962]

I am  a bit incontinent with urine, but not the other. I do think mine is related to the neuropathy and possibly could be some CNS involvement as well. I am okay if I wear a mini pad, but a hard sneeze or cough and I have leakage. Hopefully it doesn't transition to my colon and I develop issues there. I wish you well and hope you can get answers to try and stop this as it must be quite distressing.

[Nymph]

Thanks for sharing, all. I appreciate the solidarity.

I am sure that there's no mechanical reason for it. I have some minor hemorrhoids but that's about it.

But before I jump straight to lesions on my spine, someone on my dysautonomia forum found that MCAD was the culprit for her. I definitely have that. So far I only take a daily antihistamine and quercetin. Maybe I should add a daily H2 blocker as well, see if that helps the diarrhea. I don't know about the incontinence part as it wasn't an urge thing at all, and I did not have diarrhea that day. But at least that would help me feel more confident, along with wearing pads to work of course, until I figure this out.

My sister said, "Maybe this is a one-time fluke thing." And I am hoping that it is. I have had a bunch of other weird neurological one-time flukes. So this could be one, too. Here's hoping. I'm not ready to give up what's left of youth, my femininity, and my sexuality. While I know that there are plenty of people who live with this and still have those things, it's hard for me to get my mind to that place! I was going to ask this guy out at work and now I'm like.... dating? What dating? I'm just trying to stay out of the nursing home! Lol. (And stay employed and insured... you know.)

[warmwaters]

I have IBS that is likely due to autonomic neuropathy (per my gastro and neuro doctors).  Problem for me is days with high frequency bowel movements (as many as 10-12), and loose ones.  Doesn't happen every day, but happens a couple of days a week.

In addition to the immodium, I used the FODMAP diet to figure out which foods were problems for me. FODMAP focuses on naturally occurring sugars that can be a trigger. Lactose intolerance is the best known example, but fructose, that occurs in a lot of fruits, can also cause me problems. Anyhow, google it, and don't get overwhelmed by the info. If you break it down and see what might be triggers, it can help.

[Nymph]

Thanks, Warmwaters. My mom has IBS and uses the FODMAP diet. Her biggest triggers are onions and garlic, which do not seem to bother me at all. I have such difficulty maintaining my weight that I am resistant to diet restrictions, other than being gluten free. Maybe I need to revisit that.

I talked to my dad (neurologist) about all this. At the end of the day, he thinks I need a brain MRI. I might have partial seizures. I might have been having partial seizures for the last 12-15 years. I read about it and it sounds like a summary of all of the weird things that I experience off and on that have no logical explanation. According to the Epilepsy Foundation, which has a page on their site dedicated to us Sjoggies (!), seizures are a thing for us and the most common form being partial, otherwise known as focal.

My dad has known about some of these things for years and called them atypical migraines. Which is basically saying that they're exactly the same as focal seizures only my driver's license won't be taken away. But the only way to know for sure is to either catch one with an EEG strapped to my head, or to induce one with electrodes stuck into my brain. Neither of which sounds particularly appealing and I am not really sure if I want to know...

[Screaming inside my head a little bit right here]

Okay, thanks for listening. Anyone here have seizures?

[warmwaters]

RE the seizure possibility - Wow.  That gets you thinking, doesn't it?

[Nymph]

Yeah