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Primary /Secondary Progressive MS For those living with Progressive MS to discuss treatment options and lifestyle issues.

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  #1  
Old 08-20-2010, 03:03 AM
ddsanvic ddsanvic is offline
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Is Colostomy for Multiple Sclerosis patients with bowel Dysfunction?

Hi, I am 49 years old I have Multiple Sclerosis. I have bowel dysfunction. I was diagnosed in 1989. In 1998 I started to use the method of digital stimulation to remove my feces it would usually take 20 min or less to be done. In the last 2 years it is taking much longer I have constipation diarrhea fecal incontinence passing uncontrollable liquid flatus. I would like to know if anyone on this forum with Multiple Sclerosis has had colostomy surgery.


DSV
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  #2  
Old 08-20-2010, 03:38 PM
angel00113 angel00113 is offline
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Location: Saugus, Massachusetts
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colostomy

Yes, I had the surgery five yrs. ago.
I still don't know why I had the rectal/vaginal fistula, but
that is why I had to have the colostomy.
I have vto sign off now, but I'll answer any questions to
the best of my knowledge. Just ask.
hugs, angel
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  #3  
Old 08-20-2010, 04:28 PM
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jazzgirl jazzgirl is offline
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I have not had this surgery, but I want to encourage you to discuss it with your doctor at length before forging ahead. It's pretty drastic...
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  #4  
Old 08-20-2010, 06:05 PM
angel00113 angel00113 is offline
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colostomy

As to my previous post, I left out some important details.
1st, a visiting nurse was with me at the time. She was inserting my cathetar and saw b movement coming from my
vagina. At that moment my son happened to come in the
front door and the nurse told him to bget me to a hospital
right away. The rest is history.
Jazzgirl is correct; if this is something you're considering,
you absolutely must seek medical advice.

What you've been going through must be awful, and I HOPE
and pray that he/she will come to a decision that makes
your life a little easier. Please keep us posted.
hugs, angel
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  #5  
Old 08-21-2010, 08:13 PM
ddsanvic ddsanvic is offline
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My reason for wanting Colostomy

I know this is a life changing procedure but I have come to a point in my life that I can not keep up with this. It makes me very tired my hands and fingers are not as mobile, just imagine having to do this not 1 time per day but sometimes 3,4 or more. It has taken over my life. Our family just went to Chicago for my husbands parents 50th wedding anniversary. With our family and everyone else that is a total of 15 family members with 1 toilet! We had to get a hotel, in the past we have stayed at the house with all the family. As I said in the last 13 to 14 years I have used the method of DS. I just feel I can't do it anymore. I don't want to live my life around the restroom.

DSV
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  #6  
Old 08-28-2010, 06:12 PM
kebsa kebsa is offline
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have you spoken to a gastroenterologist to see if there are any other ways they can help you get better control??

I am sure there would be someone else on this board who has faced the same decision but if not, find a message board for people with spinal cord injuries as they do sometimes face this as a choice and you can get the opions of others who have perhaps had to make a choice and and how it works out

there are also Nurse specialists called stoma therapists who help with the education of new colostomy patients and provide ongoing support and they would be great to tell you what kind of problems you may face and help you work out if the trade off would be worth it-there is no perfect answer in this sort of situation, its often a case of solving one problem and they having to deal with adifferent but hopefully lesser problem rather than a perfect solution
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  #7  
Old 08-29-2010, 02:39 PM
angel00113 angel00113 is offline
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colostomy

ddsanvic, I can't imagine the difficulty you must be going
through; it sounds like a hardship you don't need.

I think you should see your neurologist (asap). As belsda
(hope I got your user name right) a gastroenterologist isn't
a bad idea either; get they're thoughts on your situation.
You need some peace from this.

Please keep us up to date. A big hug from me and the best
of luck with the docs.

hugs, angel
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  #8  
Old 08-29-2010, 08:57 PM
ddsanvic ddsanvic is offline
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Is Colostomy for me??

Hello to all,

Thank you for the replies Kebsa,Angel00113. I am actually going to see a GI doctor on Monday 8/30 at 3:30PM. I am very happy I get to finally talk to a GI doctor I have already spoken to my neurologist already and she advised me to talk to the GI doctor let him know how I feel, and how difficult it has been for me and let him give the recommendations he is trained to give.

Thank you very much,
DDSVIC
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  #9  
Old 09-18-2010, 04:23 AM
kebsa kebsa is offline
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just wondered how you went with the GI doctor, whether they were able to give you any advice or not??

if you are still thinking in terms of a colostomy itwould be a really good idea to speak to a stomal therapy nurse, they actually help the surgeon by advising the best skin site to place the stoma so that it has the least impact on things like clothing and sitting position (nothing worse than finding its sited in a skin fold that is not apparent when lying on the operating table but is apparent as soon as you are sittin up!!) they can also advise you on what the day to day care and management would be like - basically they spend much more time dealing with the day to issues of life with a colostomy than the surgeons do. Its been a long time since i worked on a gastro ward but when it was not done as emergency surgery, one of the 1st things that would happen when the patient was booked in for surgery was that they were booked into see the stomal therapy nurses
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  #10  
Old 09-18-2010, 08:23 AM
bosoxer bosoxer is offline
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Hi. I am 48 and I have spms. I had severe constipation issues and I had a colostomy performed this past April. It has made my life so much better. I wish I had done it several years ago. I am either bedridden or in a wheelchair and I must rely on my husband or medical aides to help me with ostomy bag changes, but it is all so worth it. Feel free to e-mail me with questions. Make an appt. with a surgeon and discuss it. It will change your life. God luck!!
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  #11  
Old 09-20-2010, 07:31 PM
angel00113 angel00113 is offline
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need to hear

ddsanvic, I've been thinking about your situation and was
wondering the outcome of your decision.

Please let us know what's going on.

hugs, angel
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  #12  
Old 10-05-2010, 10:03 AM
wendy18
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I would think

it would be a last resort. I have a friend with Progressive MS who had a twisted bowel so it was quite an emergency.
I would weigh all the options and discuss with your neuro and get a good GI doc. If it would be easier for you, it could be an option. But there may be other ways or meds. There is something called Enemeez that is supposed to be good. I use the liquid glycerin by Fleets, and seems to work fast.
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  #13  
Old 02-02-2011, 03:09 PM
Nelmaree Nelmaree is offline
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Has colostomy made your life better?

Quote:
Originally Posted by bosoxer View Post
Hi. I am 48 and I have spms. I had severe constipation issues and I had a colostomy performed this past April. It has made my life so much better. I wish I had done it several years ago. I am either bedridden or in a wheelchair and I must rely on my husband or medical aides to help me with ostomy bag changes, but it is all so worth it. Feel free to e-mail me with questions. Make an appt. with a surgeon and discuss it. It will change your life. God luck!!
My sister-in-law, age 66, has ms (diagnosed in 1984) and had to go to the hospital today because of severe constipation. The aides that take care of her think she may need a colostomy. She looks to me for advice. I was encouraged to read that it has made your life better. She is bedfast and has to be taken out of bed using a hoist. She already has a supra-pubic catheter. Do you have any other advice for me to help her? I just signed up at this website today and couldn't figure out how to email directly.
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  #14  
Old 02-03-2011, 12:46 PM
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DancesWithPugs DancesWithPugs is offline
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Quote:
Originally Posted by Nelmaree View Post
My sister-in-law, age 66, has ms (diagnosed in 1984) and had to go to the hospital today because of severe constipation. The aides that take care of her think she may need a colostomy. She looks to me for advice. I was encouraged to read that it has made your life better. She is bedfast and has to be taken out of bed using a hoist. She already has a supra-pubic catheter. Do you have any other advice for me to help her? I just signed up at this website today and couldn't figure out how to email directly.
I have no experience with colostomy, but wanted to let you know that you can put your email address in your profile (not allowed to be posted openly), and perhaps someone will be able to email you with the info you seek.

Your SIL is blessed to have someone like you who is so willing to help her.
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  #15  
Old 04-15-2014, 02:01 PM
henryhockey21 henryhockey21 is offline
 

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Location: Chicago, Il
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Severe constipation

I'm 48 years old, I have SPMS. I'm wheelchair bound and bed bound. I have severe constipation. It's been 3 weeks since my last bowel movement. I've tried prunes, Metamucil, stool softener and a prescription laxative. I don't want a colostomy but I'm afraid that I might not have a choice. Can someone who has received the procedure let me know what your situation was that led you to decide to have this procedure and how is your daily life now. I appreciate anyone's help
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