I can tolerate most things about my MS. There are really only two things that just downright disgust me. Bladder and Bowel Incontinence!
About 15 years ago, I had my Gallbladder removed. Ever since then, if I go too long without eating, or, if I eat the wrong things, I get diarrhea. As long as I'm home and close to the bathroom it's not a problem. The problem is when I'm not home, I'm driving and I have the sudden urge to go to the bathroom, or, I'm in a Dr.'s office and have the sudden urge to go to the bathroom and can't make it, then I have a dirty, stinky mess.
Today was one of those days!!!!! I had to take my Mom to her Dr and as I wheeled her to the desk, I was horrified at the sudden urge and Bowel Incontinence. I wear Depends but................well, sometimes they just aren't enough. All over the back of my shirt and I didn't realize it. I thought I checked good enough but........you guessed it, I didn't see it. There was a lady that kept staring at me. I felt like such a fool. I'm sick of this. I can't even begin to tell how many times in the last month that this has happened to me. It's bad enough that I have Bladder Incontinence, but now, it seems like the Bowel Incontinence is just as bad.
I know this is a very graphic and personal issue but if anyone has any suggestions or just plain words of encouragement, I sure could use them. I'm just so discouraged and disgusted. I feel like I can't even have a normal social life. It's very depressing!!!!
I'm so sorry this happened to you! I don't have severe bowel or bladder problems from MS but your story took me right back to my teenage years (long ago, in a previous life). More than once I didn't realize my period had started until I got home after school and discovered a big stain on the back of my skirt. Once or twice someone clued me in but I don't know which was worse - having someone point out what I couldn't remedy or wondering how many people remained silent all day as they laughed behind my back.
This must be terrible for you! I hope we can come up with something to help. Have you ever tried cholestyramine (Questran or Prevalite) to control the diarrhea? It's a powder used to lower cholesterol but it is also VERY effective at controlling the diarrhea that can occur after having your GB removed. You need a script and would need to check with your doc before taking it anyway but...... it could get you loads more comfortable in social scenes AND with yourself.
By the way, KUDOS to you for hanging in there, helping Mom AND continuing to get out there after fifteen years with this.
I have had a few similar experiences in the past.... one time I had to get my (then) 8yr old daughter to check the back of my pants as we were out at the playground and I lost control of my bowels. I made her walk behind me to hide my pants from view until we could get back to the car.
The only thing I can offer by way of suggestion is something I considered for myself when it was happening, which is an adult version of a pilcher (a thin washable waterproof covering normally used over a baby's cloth nappy). I'm almost certain you can get these online. I also made sure I had a small "kit" in my handbag that contained a few odour-proof plastic bags, some wetwipes, and a change of underwear.
It obviously won't help with the smell, but may prevent the rest of the world from seeing the extent of your problem and help preserve your dignity.
I truly hope you manage to find some relief from this issue.
I know - I hate to drive long distances. And the first thing I do when I go in somewhere is see where the bathrooms are located. When it's hard or regular I can't get it out. But when it's soft, I can't keep it in - I have to move quickly - which sometimes isn't that easy.
One time I was out basically in the middle of nowhere at some big outlet store my friends wanted to go to. For some reason they didn't have a bathroom - at least not one for customers ??? I had to opt for going outside behind their big dumpster against the wall. It was sooooooo embarrassing. They're probably going to get me for indecent exporsure or something. I didn't want to go all over my clothes and there was ABSOLUTELY no way I could hold it. :-(
Bladder/bowel issues can be downright mortifying. For me, it's been really inconvenient attacks of gas. I didn't even want to leave the house for a while - until I realized I could use it to my advantage.
You see, what I like to do is visit a snotty, upscale grocery store where people literally look down on me for my clothes, or if i'm dragging my leg.If they decide to pull the same routine again, and especially if several are clustered, I just..I dunno, I let go.
The great part is that I can also blame my partner. He just looks like the goofy, farty type, and i'm just so sweet and mild mannered.Gas spares no one!
However, I have discovered if that wants to act up and I don't want to create a "stink" so to speak, maxi pads work fairly well.
So those are my solutions so far to try to put a cherry on top of a rather crappy situation, no pun intended.
I used to have the runs so bad last summer, I could not make it to the bathroom even in the house. My husband used to have to throw me in the shower and hose me off. I use to wrap up in bath towels with a chuck on the inside.
It turned out I had picked up C-diff in the hospital and did not know it. After it cleared up so did everything else.
Sometimes, it is difficult to differentiate between MS and a totally different issue, because no one is immune to those, either.That is a really good point.That is a very insightful story;I feel for you and yet i'm laughing at the same time.
I never asked a dietician, but sometimes I can get a little relief with greek yogurt. I find that the chobani brand, as well as the oikos brand are the best. I didn't really notice a difference with the others - oh, and there is a supplement called digestive advantage that helped, but i've heard that the formula was changed.So, probiotics can seem to make a bit of a difference, but it isn't a cure all.
My experience tells me to limit certain combinations of fresh vegetables -- onions, for example -- with root beer. Sad, because that has always been one of my favorite beverages. I love onions, too, and pepperoni, which can seem to have similar effects.
That feeling of having to get to the bathroom RIGHT NOW is frustrating, and the fear of a seriously embarrassing accident merely adds to the tension. I suspect that only adds fuel to the fire, as one's system can certainly be stimulated by nervous issues. I can identify with the idea of locating the restrooms when entering any public place, just to know where they are, in case.
I surely feel for those whose experiences include such awful urgencies.
I just went ot my GI doc due to the same problem, mine from my newly diagnosed autonomic dysfunction. I was told to try one of several prescriptions the doc gave me and said to see which one worked best for me. the cheapest, cholestyramine as twopack suggested, then Welchol (also a cholestrol lowering drug) in 2 different forms -powder or pills.
The powder dissolved in liquid was as far as how it made me feel. Thought I had swallowed stones that just sat in my stomach and made me nauseous. It stopped the diarrhea though. Next was Lomotil (generic) which was inexpensive but I did not like the way it made me feel . Sort of dizzy or like you just got off a carnival ride. Lastly, I took the Welchol pills but only one dose and problem cured . No ugly side effects either.
My suggestion is visit a gastrointestinal doctor and get some advice. It feels good to have control.
I went to a GI doctor and she did a rectal exam. She says that my muscles there are 0/0 for strength - hence why I can't go when it's hard/regular, but when it's regular/soft, I can't keep it in.
They also said that I have Celiac's (I meet the gold standard based on their biopsies) but then the Mayo Clinic did another biopsy after I had been gluten free and said I didn't have Celiac's and said that the 2 months I had been gluten free wouldn't have made a difference in their biopsy. My doctors can't agree on anything.
I also have malabsorpsion so I have to take pancreatic enzymes - I had a 72 hr fat stool test which showed 27 grams and the max should be 21 grams (esp since I wasn't able to eat the 100 grams of fat each day). The GI doctor says that's not too high and I don't have fat malabsorpsion, but yet again, my oncologist says that it is too high and I do have fat malabsorpsion. Ho-hum....
That's funny - root beer always makes me sick, too.
Oh yeah, that's another thing. Apparently Celiac and MS often go hand in hand, indeed, it is common for autoimmune diseases to cluster together.
My tissue transglutiminase tested positive, although I didn't do the endoscopy. I decided to just avoid wheat altogether.A few years ago, my potassium levels bottomed out and I was rushed to the emergency room. My problems all seemed to start in my stomach.I got some sort of odd infection in 1996 that really messed me up. No one could figure out what was wrong with me, so I went three months with it until my old pediatrician found the infection and also ordered a barium swallow. My esophagus was very inflamed.I never felt the same after that particular illness, and I did wonder if it is possible that there was indeed a connection.
I have also heard that there's a linkage with a failure to assimilate trace minerals, although that isn't from a scientific source. With me, however, I do think that there is definately something going on in that area - it's just hard to differentiate the chicken from the egg, so to speak.
I am so sorry. I have had a few issues here ant there with this kind of thing. Thankfully it has never been a BM issue in public. I did try pelvic floor physical therapy for urinary hesatance, incontinance and urge problems. It was slow and seemed pointless for a while, but it did work, and I am thankful that I stuck with it.
See if your doc will referr you to a pelvic floor PT. It cant hurt anything but the pocketbook.
I had pelvic floor PT for about 6 months. Unfortunately, it didn't help me at all. I ended at the same point where I started. Plus, I have a problem with spasticity in that area - you're regular relaxed muscle tone should only be about 1-1.5 mcv and mine is close to 14 mcv.
When she would work internally, she said that the muscles around my urethra were just spasming away - I couldn't even feel it - which I thought was odd.
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