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I would like to exchange emails with another person who has had to have major surgery due to MS causing a complete loss of control of either one or both their bladder and/or bowel. I have connected with people who have had either one or both surgeries, but the need for their surgery was NOT due to MS. I was diagnosed with MS in 1986 and had to have an urostomy in 1999 and a colostomy in 2002. Both surgeries were needed due to my total loss of control due to MS lesions on my spinal cord. I… read more
Answer Summary
Members responded to a post asking about urostomy and colostomy surgeries caused by MS, with many sharing that bladder and bowel control... Read more
@MyMSTeam users... I was hesitant to have the urostomy and then colostomy, but both have been a blessing. No more fear of an accident when away from home. They are not noticeable and are very easy to take care of them They gave me a part of my life back. Plus I rarely have had an UTI since the urostomy. By the way, the urology surgeon also called the surgery an "illio conduit bypass" (not sure of the spelling, but any doctor would recognize it). Recovery from both surgeries was just a few weeks each time. If anyone wants more info or to know more about my experiences, feel free to contact me.
@A MyMSTeam Member Hi, I am so sorry you too have these same problems. The happening, and fear of losing control, really do change your quality of life. As for your hand strength and its effect on working with what they call appliances (bags, wafers, etc.) shouldn't be too hard. Everything either glues on (they come ready to stick to the skin-- like a stamp on an envelope).or snaps on (like a Tuperware lid). The appliances last 3 to 5 days, so it isn't something you do real often. The empty process is done as needed and are easy. I suggest you see either an Urologist or a colon-rectal doctor, just to talk about the surgeries. They also have nurses who can show you, and let you try the appliances. That way you will know if you can do what is needed with your hands. The appliances are very similar for both surgeries. Another thing you could do is call a local medical supply business and ask for names and addresses of companies that produce the needed appliances. Then write or call the companies, asking for both samples and a video of how to care for stoma's.The medical supply store may also have video's. The video's along with nurses were what convinced me to proceed with the surgeries. I am SO HAPPY I had the surgurey's. I no longer fear accidents and go out whenever I want. Good luck to you. Please let me know hat you decide to do. I am not sure how to send a private message here, that only you would see, as I would then be happy to send you my phone number and email address so we could talk. Take care.
I'm sorry you are facing this. I also have these problems but for the time being they come and go. However, It's keeping me home more and more and effecting decisions I make about going places etc. There should be more talk on this subject I think it is more common than we hear anything about. I'd like to be able to know the facts better and coping mechanisms. It gets my mind in a turmoil and I don't know what to say when I get the "but you don't look sick" and know that I have been locked in my house for a few weeks because I'm afraid to venture out and about. I only know that are a lot of us out in MS land both male and female that need helpful answers. I really appreciate your sharing this with us. yeaster
I am so glad I found this post and your answers. I have this problem often and I really don't know if I could handle the surgery options. Literally! I have severe Osteo in my hands and have lost most of the stength. Are these options mentions hard to "handle" both physically and mentally. I don't like being a 'potty pooper" . I stay home a lot!
SO GLAD this ? Has been addressed. I have constant watery bowels with no warning. No cramping, and heaven forbid if I think I need to pass gas. It's been 8 weeks, constant and is RUNNING my life. I hate leaving the house due to accidents, and am horrified to be intimate anytime within 6 hours of eating or drinking. Asked my Neuro, doing more MRi's and blood work. I'm 12 years in, what do I do. Am turning 43 in Sept. Would rather be having a mid life crisis than on potty 1/2 of the day
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