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darin
@darin

Posts: 2
Joined: Nov 20, 2018

Doctor is telling me I need a colectomy.

Posted by @darin, Tue, Nov 20 9:25pm

Wondering if theres any good reports of this. Have had colitis for 5 years and tried alot of drugs but the only one that worked was simponi. Unfortunately I was diagnosed with skin cancer after being on it. So after 3 surgeries to remove my melanoma and glands from my armpit, I am on entyvio and it is not working very well. So now I am worried I may need this procedure and I have a very physical job, and worried I will have to carry a bag the rest of my life. I'm only 43 and wondering if anyone has some advice or maybe something like this.

REPLY

@darin Welcome to Mayo Connect,

I am sorry to hear of your longstanding problem with colitis. I can understand your concern regarding surgery.

We do have a discussion group on Connect that deals with ostomies I would encourage you to read those posts. Here is the link to those discussions, https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

If surgery seems to be your only option, will you be getting a second opinion?

@hopeful33250

@darin Welcome to Mayo Connect,

I am sorry to hear of your longstanding problem with colitis. I can understand your concern regarding surgery.

We do have a discussion group on Connect that deals with ostomies I would encourage you to read those posts. Here is the link to those discussions, https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

If surgery seems to be your only option, will you be getting a second opinion?

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Yes. I am trying to see my doctor in mayo to see if there are any other options. I currently have been seeing a gi doctor at sanford in fargo

@darin

Yes. I am trying to see my doctor in mayo to see if there are any other options. I currently have been seeing a gi doctor at sanford in fargo

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I'm glad to hear that, @darin. While I'm sure each individual case is different, I've noticed that a lot of people who have colostomies, etc. tend to have it reversed after 6 months or so. It is not always permanent.

We also have a discussion group on colitis, here is the link, https://connect.mayoclinic.org/discussion/recurring-diverticulitis-colitis/. I would like to invite @suez and @lisabeans who have both discussed colitis treatments and meds they have taken.

I would like to know how this all works out for you. Will you keep in touch?

@hopeful33250

I'm glad to hear that, @darin. While I'm sure each individual case is different, I've noticed that a lot of people who have colostomies, etc. tend to have it reversed after 6 months or so. It is not always permanent.

We also have a discussion group on colitis, here is the link, https://connect.mayoclinic.org/discussion/recurring-diverticulitis-colitis/. I would like to invite @suez and @lisabeans who have both discussed colitis treatments and meds they have taken.

I would like to know how this all works out for you. Will you keep in touch?

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I have no input/experience with colostomy. I take Lialda for my colitis and it seems to be helping in that my flares are not as painful and intense as in the beginning. And, of course, I watch what I eat. Sorry not to be of more help. Good luck.

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