The title of the post may sound somewhat ghastly, but I intend to get even more detailed here in order to try to hopefully get some advice from someone who’s gone through before what I’m going though now. If you can’t stand the disgusting details, please don’t read the rest of this post. I don’t mean to offend anyone.
It’s been 29 years since I was diagnosed and I’ve been secondary progressive for a number of years. I suffered from severe constipation for a number of years, starting as early as 2005. I managed to cope with laxatives, Metamucil, etc., getting stronger over time. A little over a year ago the spasticity in my right leg increased tremendously, including my glutes and eventually winding its way into my rectum and I suspect my colon (I just had a colonoscopy and my gastro guys comment was “every thing’s ok, though it’s long and twisty”.
Somewhere around the time that the spasticity increased, my muscle strength in my pelvic muscles had gotten so weak that I was no longer able to defecate. I began to need to manually extract feces from my anus (not a pretty picture) in order to have a bowel movement. I saw a gastroenterologist about this and after many months (6 or more) and a series of tests (ever heard of MRI Defecography? – yup, an MRI of you pooping a gel they put in you) he came to the conclusion that my pelvic muscles were weak and sent me to a PPT (Pelvic Physical Therapist). The PT sessions did strengthen the muscles but unfortunately, didn’t do enough to make a difference.
Hopefully that’s enough background information for the question that’s the reason for my post. I’m contemplating a Colostomy to get out of this current situation which for all intents and purposes is kind of the same, but takes 45 minutes to complete and is probably messier. Is there anyone out there who has been in the same situation and has done this? If so, are you glad or do you regret it and why. I’d greatly appreciate your input.
On a side note, I’m also pursuing a Baclofen Pump, which possibly might reduce or eliminate the spasticity in the rectum and colon. That may be wishful thinking however.
It’s been 29 years since I was diagnosed and I’ve been secondary progressive for a number of years. I suffered from severe constipation for a number of years, starting as early as 2005. I managed to cope with laxatives, Metamucil, etc., getting stronger over time. A little over a year ago the spasticity in my right leg increased tremendously, including my glutes and eventually winding its way into my rectum and I suspect my colon (I just had a colonoscopy and my gastro guys comment was “every thing’s ok, though it’s long and twisty”.
Somewhere around the time that the spasticity increased, my muscle strength in my pelvic muscles had gotten so weak that I was no longer able to defecate. I began to need to manually extract feces from my anus (not a pretty picture) in order to have a bowel movement. I saw a gastroenterologist about this and after many months (6 or more) and a series of tests (ever heard of MRI Defecography? – yup, an MRI of you pooping a gel they put in you) he came to the conclusion that my pelvic muscles were weak and sent me to a PPT (Pelvic Physical Therapist). The PT sessions did strengthen the muscles but unfortunately, didn’t do enough to make a difference.
Hopefully that’s enough background information for the question that’s the reason for my post. I’m contemplating a Colostomy to get out of this current situation which for all intents and purposes is kind of the same, but takes 45 minutes to complete and is probably messier. Is there anyone out there who has been in the same situation and has done this? If so, are you glad or do you regret it and why. I’d greatly appreciate your input.
On a side note, I’m also pursuing a Baclofen Pump, which possibly might reduce or eliminate the spasticity in the rectum and colon. That may be wishful thinking however.
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