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    Colostomy

    Have any of you with progressive disease had a colostomy and did it improve your quality of life ?

    #2
    Originally posted by marlie4334 View Post
    Have any of you with progressive disease had a colostomy and did it improve your quality of life ?
    marlie

    I have progressive MS, but no experience with colostomy, so I'm unable to help with that.

    Just want to say Hello and Welcome! It appears that you've been a member since 2012.

    Are you considering a colostomy procedure due to bowel issues affecting your quality of life?

    If that is the case, I'm sorry that you are dealing with these issues.

    Wishing you all the best, with whatever solution works for you.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Marlin,

      Neither I or my wife who is the one with MS have had a colostomy but I felt the need to respond to your thread.

      First of all, I am very very sorry you are going through this ordeal and before you take such a drastic step I want to tell you a little of what my wife went through.

      My wife had unbearable pain which she described as being in her rectum By unbearable I mean unable to sleep at night, couldn’t function during the day, crying all the time etc. she always said her pain was a 10 out of 10. She was admitted several times from the emergency room to the hospital for pain control. She had test after test and couldn’t get a diagnosis.

      We went everywhere, Penn, Jefferson, Temple etc. this went on for two years. We finally did get a diagnosis from Johns Hopkins, inflamed pudendal nerve. The doctor who gave us the diagnosis said it couldn’t be treated at his facility. The hospitals in Philly wouldn’t touch it. Doctor after doctor had no answers. Apparently there were only two doctors in this country that treated her condition with no guarantee of success.One doctor in Philly suggested she have the pudendal nerve removed. I asked what would happen then? He matter of factly said “ she will need a bag”. My wife was willing to go along with it, “It is better then the pain I am living with”.

      I asked her to give it a little more time. We kept good records and we went to 39 doctors (we had great insurance) including all the “big guns” in the city as well as local docs and from out of the blue our savior appeared, an internist/psychiatrist and of all things a nun. Within a few months she was able to put a cocktail of drugs together that started reducing her pain level and within a year or so her level went from ten to one where she remains today. Every so often she try’s to reduce the drugs and the pain starts to creep up so it’s under control but still there.

      I know you face a different set of circumstances but I who am not a physician feel there is some other solution then what you are considering. May I suggest you give it one more year and in that time visit every type of doctor available to you not just neurologist especially young doctors recently out of med school as well as all the big guns in your area. Put your situation out on social media and see if anybody had the same problem and found a solution. Check with nurses every place you go, you never know where the breakthrough will come from.

      I wish you all the best.
      Bob

      PS: you do not live in the Philadelphia area by any chance?

      Comment


        #4
        I personally don’t have a colostomy, but my sister-in-law had to have one after a cancer removal. She does just fine, has had it for three years, and had no plans on reversing it.

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          #5
          Colostomy

          Marlie,
          I have had my colostomy for nearly 15 years now. For me it was one of the best decisions I have made. I struggled for the longest time getting to the bathroom in time. One night while trying to get to our toilet I sat down so hard it broke and water was everywhere and I knew it was time. Deciding to get it done was one of the best decisions I have made. It has really helped my quality of life.
          Rich

          Originally posted by marlie4334 View Post
          Have any of you with progressive disease had a colostomy and did it improve your quality of life ?

          Comment


            #6
            I'm following this thread with interest. I currently do not have a colostomy. Or a suprapubic catheter. But its been discused as a solution for a few years now. For many years I was able to maintain a bowel program. But once My ability to swallow on My own was gone. I had to have a feeding tube installed. And I've needed a ventilator full time for a few years now. My bowel incontinence has gotten so much worse. And also after years of using a foley catheter. Frequent UTIs which I simply can't afford to continue to have.

            My body reacts poorly to anesthesia. I don't want to lose any more function if I can avoid it. And I'm not real excited about the prospect of having more holes in My body. Yet I'm just so sick of adult diapers pads etc. I was in a long term care facility for a while. There was a lady there in a similar situation with ALS. She had a colostomy. I'm not sure how She felt about it. She had trouble communicating. So I'm at a crossroads I guess.

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