Fecal incontinence

[Nymph]

Hi all,

Well, I haven't been here in so long since I've been doing so "well..."

Actually it's amazing. I have been able to teach full time and have only greyed out/ seen stars a handful of times.

And then I got into a little Sjogren's flare, caught a virus, was home, off of work, watching Netflix in bed, when I went to the bathroom and there was a small but significant piece of stool in my underwear! I had no idea!!!

Now, I have frequent diarrhea coinciding with POTS and a couple of times THAT has happened... but never solid! And what's up with not even knowing?!?!? Now I'm really paranoid.

Kinda freaking out here. 

I searched and know that a few of you have experienced this. Can you tell me whether you think it was a weird dysautonomia fluke or is my spinal cord slowly disintegrating or something? Apparently you can get lesions with Sjogren's. So I am freaking about adult diapers and very expensive immunosuppresants in my future. A future that also happens to include a search for a new job since I'm leaving my school. 

Help?

Nymph

[Katybug]

Nymph,

I'm so sorry. I had an episode of fecal incontinence early on in my illness and it was the one moment I wanted to go crawl under a rock and never come out again.  It was on Christmas morning and thank goodness I was at my mom's. I was expected at my dad's and had to call and say I'd be late. He pressed me on why and when I finally shouted at him what happened, I think he wanted to find his own rock to crawl under.  

I continued to have bowel urgency until we started getting control of my diarrhea and abdominal pain. First, it was artificial control with meds, and, now it is a combination of avoiding foods I am allergic to (although not in the classical food allergy sense) and meds.. I do have MCAS and finding the right MCAS meds was important. The combo that most people talk about didn't help me. I take Cimetidine, Ketotifen  (which has to be ordered via Canada online), and Singulair. Figuring out the food issues was a pain in the neck but so worth it. 

I'm finally at a place where I still have 4-5 bowel movements a day (my immunologist would like it to be 2-3) but they are normal. I do have occasional minor urgency but I don't feel like I will actually lose control. I might have diarrhea 1-2 times per month and I believe that there still might be a food out there we haven't identified. 

So, there is hope! Don't give up! Work with your doctors. Tell them this is a big stressful problem and that you need their help! I know it's tough to talk about but they've heard it before and they can help!

Take care,

Katie 

[Nymph]

Katie, thanks for your reply! Yes, it really does something to your sense of self, right? I had about a day of straight-up denial and then I decided to post about it on my Sjogren's forum, tell my sister, tell my doctor, and post here. Just doing that helps, because it's out there and I am doing something about it.

Thanks for mentioning MCAD. I have that too and didn't even think of it as a possible cause. Went straight to autoimmune spinal lesions, lol. Guess I should call that doc, too. 

[Katybug]

My GI issues are at least 90% related to my mcas.  I spent nights on the floor of my bathroom because of it. Everyone was convinced it was gluten. I went staunchly gluten free for 4 months with no improvement. I had just started working with an immunologist at the end of that. He did food allergy skin testing and blood testing. The blood tests said I wasn't allergic to anything.  The skin tests said I was allergic to everything except for fish, chicken, and beef. The immunologist was practical and recognized that was not a liveable diet. He had me quit all grains including corn and rice and all nuts and seeds. After 6 months, he had me add one thing back at a time. It turns out rice is my nemesis.  I'm fine with gluten, nuts, and seeds. Then we did the same with fruits and veg except I didn't stop them for 6 months. I just started by only eating one fruit, then each week, I would add another fruit or veg. We discovered things that I had eaten all my life with no problems,  had suddenly become a problem, like grapes for example. I still have lots of food I can eat. We cut about 5 foods out and I am so much better. The process is long and tedious but I don't miss my bathroom floor at night. ?

[Nymph]

Good to know! Maybe I'll give that a try this summer.

Talked to my dad (who's a neuro) and we think maybe a partial seizure. Actually I have a lot of symptoms that could be chalked up to partial seizure, but it's hard to dx. I don't think that he has ever tried to dx it because he doesn't want to ruin my life. I'd lose my driving license. But now I have a neuro appt about this so we'll see,

[htberg]

This has happened to me more than once unfortunately (and 2 days ago so I'm glad for your post). I am chronically constipated--started at birth and have always been on laxatives, enemas, prune juice, etc., although this part (accidents) just started about a year ago and fortunately only a handful of times.  Part of my dysautonomia is neurogenic bladder (no urge to urinate unless a UTI, have to self-cath) so I was hoping it didn't mean that my bowels that are clearly shut down and the muscles don't coordinate to push, now aren't affecting my rectum so I can't feel it.  That was the odd part--didn't feel a leak and didn't feel it afterwards either.  I go to cath and then realize there is some solid stool in my undies.  Very embarrassing.  I haven't gone back to my GI to ask and don't presently have a neurologist and I don't have MCAS and to my knowledge no seizures.

[Nymph]

Sorry this is happening to you, too. I have not had any particular bladder problems, except maybe stopping before fully emptying and I have to push to start up again. I haven't even noticed that lately. Not sure. Honestly, I hope I am not having seizures and that there is some other explanation. But what can be done? I know that this is frustrating! I sure hope we find answers. I am seeing a neuro and getting a workup. Will share when I find out anything.

[corina]

I'm having both fecal and urine incontinence which comes and goes without any reason. Feel very embarrassed about it. I won't leave home without pads. Sorry you  are experiencing this too (the fecal part which is the most embarrassing imo)

[Don]

I too have both urinary and fecal incontinence.  I have very poor control of either.  I use pads (briefs/diapers) to manage my condition.  The urinary issues generally are easier to handle over a public bowel event.  That can be extremely embarrassing.  To manage odor, there are herbals you can take that could make living with such a condition much less traumatic.  One product is called "nullo", or cholorophyllin copper.  The other is called "devrom", or bismuth subgallate.  These organic compounds neutralize fecal odor.  They are generally pretty popular in communities centered around incontinence.  They are relatively inexpensive.  I get mine from my local VA pharmacy.  You could also ask your gastroenterologist about them.  These are also used in ostomy communities as well. Just a thought.  

[Nymph]

Thanks, Don and Corina! So far this has only happened the one time, and the more I think about it the more I think I may be having partial seizures, most of which are either olfactory hallucinations or deja-vu types. But if this is happening in different parts of my brain with different incidents then anything could happen! I wore a pad today because we were taking the kids on a field trip. Ironically the field trip was to a self-contained special education school where all of the students are probably incontinent! I fit right in.   But today I was fine other than some usual POTS symptoms and fatigue from a crazy week. I guess I am about to launch into a new diagnostic journey and trying to psych myself up for it. I need to start a new job search at the same time and feeling totally overwhelmed by that. Good to know about the herbs, Don. I have a friend with a colostomy... I guess I could ask her about that. I always wondered how they deal with the odors!