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Urine & Bowel control

amunoz22 Message
21 Apr 2014, 03:15 PM

Hello. I am new here. I first noticed something was wrong about 7 years ago. It has gotten progressively worst in the last couple of years. I have sudden urges to urinate, and have accidents. I've wet my bed, I also at times would have bowel movement, and within 30 minutes or so, have a sudden need and have no restroom nearby and soil myself. I am young, always been active, played sports, bicycle, and walked & jogged. Is anyone going through any of these symptoms. I was officially diagnosed 4 years ago at Shands hosp in Gainesville Fl. I am the only patient that they are dealing with, and therefore have no real experience with this condition. Thank you for reading this.
lowrider38 Message
22 Apr 2014, 01:00 PM

I was diagnosed about 2 years ago and have had similar issues as you for longer. They are progressively getting worst as time goes on. My doctors first put me on detrol LA taken at night which has almost completely eliminated accidents at night. They started with 2mg and then upped it to 4mg. I continue to have issues during day, saw urologist and found out my bladder isn't emptying completely when I urinate. Recently got put on flomax to help but it hasn't much. This is all for bladder, I don't think they can do anything about the bowel issues which I have also.
chrisphillips71 Message
22 Apr 2014, 01:17 PM

Though I can only speak from personal experience, I think that we you are experiencing is common with AMN. I had urinary issues for many years. Sometimes I had to go as many as 7 times before 10:00 in the morning. It was very inconvenient. I also had leaking. That is, my bladder would spasm and some urine would come out. A little less than two years ago I had a procedure done where they inject botox into my bladder to deaden the nerves. Now I have no leaking, and I generally only go to the bathroom 6 times a day. Actually, I probably need to have the procedure done again as the effects of the botox wear off after a while. However, I have not wanted to incur the costs. The only downside is that I can have to catheterize as I literally cannot go by myself. That is a pain and costly, but is much better than going to the bathroom all the time and soiling yourself. All in all, I highly recommend the procedure. I have also had bowel issues (i.e. bad diarrhea), which are even more troubling. In the last year I have had several instances of soiling myself away from the house. Of all the things in the world, that is probably the most embarrassing. One doctor recommended that I take Fiber Con to maintain regularity. I had previously tried Metamucil and Miralax, but had problems with both. Since being on Fiber Con (about three months), I have only had one instance of diarrhea and fortunately made it to the bathroom. Further, my bowel movements are much more regular. Hopefully this will work for the long term. So that is my story. AMN obviously sucks and bladder/bowel issues are a big concern. I would love to hear what others have to say about how they have dealt with these problems.
fdemiranda Message
22 Apr 2014, 04:25 PM

Same isues with the bladder... cathetherization at night does help to have a good sleep (I just do it at night). Nothing I have done about the bowel isues and am always hoping when it comes I would be near a bathroom.
lowrider38 Message
23 Apr 2014, 12:30 AM

I feel like fiber is helpful to a certain extent but be careful with the type of fiber depending on your issues. Insoluble fiber adds weight to the feces and helps move it through and out of the system. Soluble fiber absorbs water thickens and slows down movement and excretion. And I'm not a fan of Botox, I don't think most people realize that it is one of the most poisonous biological substances known to man. Google botulinum toxin.
justme2 Message
9 Jul 2014, 12:22 AM

I was recently diagnosed with female carrier AMN and I am 39 years old. I started having issues with my bladder a few years ago, but all docs blew it off saying it was due to having my 2 kids...I knew that couldn't be the case. At least now I have an answer. I sometimes have bowel issues, but more often than not it is constipation. It is the bladder issue that really gets to me. I am going to start trying medication soon, but wanted to mention a tip. I carry these little things called "Travel John"s with me, in the car, my purse, etc. It can work for guys or gals and is basically a baggie with an adapter on the top for a woman, and inside I guess has diaper material that turns urine into "gel" so it doesn't spill or have an odor. Those little things have saved me from major embarrassment at the kids' soccer games, stuck in traffic, etc. because when I get an "urge", I don't have very long to find a place to go...and even when I "think" I'm holding it, the next thing I know, I'm soaked. :( Will consider Botox but pretty scared to have to self-cath...
dryder845 Message
9 Jul 2014, 12:35 AM

Try Dextrol , it has made a huge difference for me.
dryder845 Message
9 Jul 2014, 12:36 AM

Try Dextrol , it has made a huge difference for me.
bakerbbb Message
20 Jul 2014, 02:24 PM

I also have AMN and have had many bowel issues. I am on a decatheter but it sucks because it leaks. I cannot empty my bladder and I was up at night having to go.
Aish Message
22 Jul 2014, 03:20 PM

Anyone with more advanced paralysis have trouble with bowel movements...i.e lack of muscle control resulting in not being able to empty bowels properly? Any solutions other than laxatives which don't give much control over when and where?