Last reply 5 months ago
Bowels – Urgency and Accidents

I find that I am always quickly running to the toilet as I don’t seem to get the message from my bowels until it’s almost too late. I had been managing this reasonably well and had been used to making it to the toilet before having an accident. I have been caught short only once or twice when out and about over the 12 years since diagnosis, however, recently these accidents have been happening more often, which is incredibly embarrassing and so humiliating. It’s gotten to the point that now I am getting extremely down about it all and thoughts of ending it all keep entering my mind.

Has anyone got any advice?

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vixen
6 months ago

Hello @charlotteaknightgmail-com. To start with the basics. Has anything changed about your diet recently? Upping or lowering carbs can make a difference, for example. You can find sphincter exercises online which might help. I hope others will respond with their experiences and advice x


itsmewithms
6 months ago

Many will likely say “been there” on this one and it can be hard. It was especially hard in a professional setting where my desk was a distance from the restrooms and the meeting rooms were awful.

I have noticed a big improvement when I started taking gabapentin and then gralise for “nerve pain”. I had never even really associated this issue with MS but it really is as our nerves aren’t communicating correctly or at all all. I think Gralise just helps my nerves work better and not get confused. My theory. I also started Ocrevus like a month ago so hope this helps some in the future or prevents it from getting worse. Some members in this group have noted they have established a schedule and been more regimented in their personal habits. That will work for some, I suppose.

I didn’t hear these solutions mentioned and the discussion was more on the physical solutions but they should be the first attempt I suppose and there is a good discussion from the MS society https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Bowel-Problems


Anonymous
6 months ago

look zi faced this problem in the psst but after yesrs i understood my body
o only need to go to once a day on breakfast time sfter i eat something and have a cuppa
then im rested all day lol


stumbler
6 months ago

@charlotteaknightgmail-com , you’re not alone with this problem, I can assure you.

You need to see an Incontinence Advisor or a Urologist, to assess the underlying problem. Then you’ll be able to discuss options, which include medications to help.


angela_panek
6 months ago

Hi. Everything had changed for me since I have moved from RRMS to SPMS the biggest issue being my bladder. I went to a Urologist. There are drugs that can help. I try to not add any unnecessary meds so I have used meditation and bladder training ( similar to kegels). I know it sounds crazy but I got desperate and have it a try. It works 75% of the time. I hope this was helpful.

Thank you all for all your advice. I’m seeing my GP tomorrow, so hopefully he can refer me etc. I’ve been so worried and nervous over the past couple of days that it might happen again, particularly at work today. Thank you for also making me realise that I’m not alone with this issue.


reid_taylor
5 months ago

I have the same problem. In fact, that is what first led me to the doctor, which six months later led to my diagnosis just 3 months ago. It is tough to deal with. I’m 37. I am pretty up front with people about it because I can’t hide it and I do have accidents from time to time. My wife and I joke that I’m getting into diapers just as my three year old got out of them. But it still wears on me. I wet the bed at least three times a week even though I get up 4-5 times a night. I do take Flomax and it helped some. I tried self-cathing but didn’t think it helped enough to deal with the discomfort and UTIs. So, I’m set to consult with a new urologist in two months. Until then, I’ll keep dealing with it as best I can and try to keep my sanity and sense of humor. Just know you are not alone.

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