Worst MS Symptom – 5/18

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This post is about a crappy topic (no pun intended). This is about bowels so if that kind of talk bothers you please don’t read any further.

Most people probably would say that losing the use of their legs would be the biggest handicap with MS but I don’t agree. In the past two years I’ve lost control of my bowels. My bowel problems have turned out to be the most challenging and worst of all my symptoms. It has changed my lifestyle dramatically and life has slowed to a crawl.

In June of 2016 and still continuing today I’ve become a bit of a recluse. I don’t know when I’m going to have a bowel movement anymore. As a result, I don’t like to leave my apartment too much. To clarify, I know when I’m going to have a BM but I have roughly 30 to 60 seconds to get on my toilet otherwise I’m making a mess. It’s like when a person has diarrhea with the flu except I can’t run to my toilet anymore! Nerves control muscles and the sphincter muscle in my rear end is affected by the lesions on my spinal cord.

If I’m sitting on a chair or couch when I feel a BM coming I have to transfer three times before my butt hits the toilet seat. First, I transfer to my scooter and scoot to my bathroom. Once I’m in the bathroom I transfer to a stool that is the same height as my toilet seat for my second transfer. Lastly, I transfer to my toilet seat. This all has to happen in that 30 seconds to a minute. Lest I forget, I also need to take off my pants and underwear.

Often, I don’t give myself adequate time and accidents happen. I’ve even woken up in the middle of the night and had to rush to my toilet for a BM. If that doesn’t interrupt a good nights sleep I don’t what does. Other times, I’ll be dreaming that I’m looking for a bathroom for a BM and when I wake up I really do need a bathroom! lol I also have times when I get to my toilet in time but I can’t get my pants or underwear off. I’ll have an accident a foot from my toilet seat. That really burns me a new butt!

Just this morning I was about to urinate and had my catheter inserted. Suddenly, I felt the urge that I was going to have a bowel movement. Luckily, I was facing my toilet. I only had about 20 seconds to turn around and as soon as I sat down I was having my movement. Then 30 minutes later I had to rush to the toilet again and as soon as I landed on my toilet seat I was having another bowel movement.

With my bowels like this it’s hard to plan anything. This past weekend I drove 5.5 hours to visit my Mother. The hotel beds were huge and difficult to get on and off for me. On Sunday morning about 4am I woke and needed the bathroom like now! I couldn’t get off my bed in time and crapped right there. Yup, crapped right on the hotel sheets! How embarrassing!

Another problem I have is that I never seem to empty my bowel completely. I can bear down all I want and nothing more will come out. Constipation is the third problem for me and is a very common problem for people with MS. Because I don’t like having accidents (my wife has to clean those up and I feel just terrible), I have a tendency to sit on my toilet for long periods of time. Often nothing happens.

During the course of a day I get many false alarms. I think something is going to happen but nothing does. I bet I spend 2-4 hours per day sitting on my rear end in the bathroom. That’s not all at one time. I may visit 2-5 times a day. I’m continually faked out by my bowels, too. I’ll think I’m going to pass gas but I find myself really needing a toilet or I rush to the toilet and then I sit for 30-60 minutes.

I can’t seem to get regular as much as I try. I wake up every morning and it feels like I better get to the toilet ASAP. Then I sit on the toilet and nothing happens. The only thing that makes me feel good is that I know I’m not the only MSer with this problem. Now you can see why I’ve developed reclusive tendencies.

My gastroenterologist has prescribed Miralax for me. I take it everyday. It helps with the bowel movements but the BMs are not the same time every day. It seems I’ve drunk more water in two years than I have my entire life. I’m eating more fiber in my diet. Fig Newtons seem to help but not a guarantee. I see beach commercials on TV and think, “that must be fun to do.” Then I think of my problems and say to myself, “that will never happen.”

I used to read newspapers on the toilet to occupy my time but now I do crossword puzzles. I bet I’ve done over 2,000 crossword puzzles in the past two years since my bowel troubles started in June of 2016. Another thing people don’t think about is this. All the transferring to and from my toilet makes my fatigue worse! My MS fatigue seems worse anyway and my bowels are not helping any. Stay tuned for more posts.

Scooterjon