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Update On My MS

I'm scheduled to have my bladder removed on October 17 due to my bladder damage from Multiple Sclerosis.  I wear Depend underwear every single day, but they leak onto my pants. It's very frustrating, because I can go to the grocery store & I can get a sudden urgency that causes me to wet my Depend. I'm constantly concerned that my pants will become wet. 90% of the time, my pants will become wet. On my way to anywhere, I, 85% of the time, have to turn around to go back home due to wet pants. Needless to say, I have become somewhat home-bound, for fear of soaking my pants. I have to protect anything I seat on.  

Also, I have chronic Urinary Tract Infections. Those are possibly due to the bladder holding urine, but when I have a post voidal ultra sound, it only shows a small amount of urine. I know everyone is different & wonder if even the small amount is just too much for me. Who knows? In my May 17, Uro-Dynamics/Cystogram, a Diverticulum was thought to be found. Today, the Dr. thought it may be where my sphincter stretches & has become a huge stretched area that is causing urine to sit. I'll add that the Dr. & his associate aren't for certain.

Anyway, I've known for a year that this Cystectomy was very possible. In speaking to my husband's family, they are not supportive at all. They say things like, "I wouldn't do that!", "Oh, you don't want to do that!", "You need to do everything you can to avoid that!" They have no idea the psychological affect this has had on my during the last 10 years. Just today, after scheduling the surgery, my husband has mentioned a small amount of support for me. I think his small amount of support is due to me talking with him. I've told him that only I am capable of making this decision, that no one (even though he sees what I go through) will ever understand what I go through. My Neurologist's Nurse Practitioner fully understands and agrees 100%, with what I am saying. I also read alot of things online. Have any of you had your Dr. suggest a Cystectomy or Urostomy?
4 Responses
987762 tn?1331027953
COMMUNITY LEADER
Babe *HUGS*,

It's definitely uncommon with MS to require your bladder to be 'removed', removal is not really a solution it's literally a drastic last resort and not a road to go down unless 'all' other options have been exhausted and failed!

Options: botox, indwelling catheter, trying the dozen or so medications in a variety of forms for specific bladder issues, pelvic floor physical therapy uses biofeedback, neuromuscular stimulation etc, percutaneous tibial nerve stimulation (PTNS), Intermittent self-catheterization (ISC), InterStim® is a small device surgically implanted under the skin.....all are less radical than surgery to remove the bladder.  

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Clinical_Bulletin_Surgical-Management-of-Bladder-Dysfunction-in-MS.pdf

I understand you've had a huge psychological impact from dealing with this for so long, it's really taken it's toll on you but please please don't make 'forever' decisions whilst you are not psychologically at your best, depression is known to cloud decisions and before you go ahead with surgery to remove your bladder, i would highly recommend you consider seeking psychological support with a therapist, so you can be more prepared and strong enough to handle the emotional issues that will come after this type of surgery has happened....

Your absolutely right, this is a decision only you can make, please consider getting a second opinion on exactly what the problem is and what alternative options you haven't tried before going through with this, it definitely won't hurt to be sure this surgery is all that's left for you, it's more likely to help in the long run knowing for sure this is the absolutely right thing for you to do right now!  

HUGS.........JJ  

1 Comments
I did fail to mention that I've tried many bladder medications for the incontinence. Since I have infection after infection, I'm now, not able to take the medication that has seemed to help some. At night, I may be up every 20 minutes up to every hour on the hour. My bladder doesn't hold very much urine at all.                                  I have the Inter-Stim implant, now going on my 5th year. It hasn't helped as much as I had hoped. The only thing it helps is that I'm able to make it to the toilet & can pull my pants down without wetting all over the floor, my clothes and toilet seat. Pelvic Floor therapy for almost a year was not helpful at all.                                          Botox injections were mentioned, but because of the pocket in my bladder & constant infections, he felt this wouldn't help at this point. Sex is almost impossible as I have to get up many times during foreplay and urinate upon orgasm. How sexy is that? Uggggg                                              My Dr. is the main Urologist/Professor at a teaching hospital.
5112396 tn?1378017983
Has anyone spoken to you about botox injections? A cystectomy IS extreme. I'd be getting multiple specialist opinions on this. I acknowledge that what you've been having to live with is also extreme, but I would exhaust every option before going an irreversible root. Competent medical professionals should be facilitating this approach as well. Has anyone been offering you psychological support in this situation? Drastic medical decisions aren't best decided if there's a potential dimension of depression in the situation. And without professional support, I'd certainly be at risk for a depressive episode in your situation! Frankly, I'm aghast that someone has agreed to perform this surgery without evidence that everything else has been tried. It seems negligent. Perhaps not in the legal sense, but in the "that's disturbing" sense.
667078 tn?1316000935
I have a friend with MS who has a  bladder bag she is happy with it. Like you said she can go out with out worrying. I have emptied it for her. She has no use of her hands. It is about quality of life. You do what will help you and do not worry what anyone says.  People see our outsides and do not know how hard it can be us. Take care of you.
Alex
Avatar universal
Thank you, Alex, for your support. I really think things will be much better for me!
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