Long life decision

by Lili
(New Jersey)

My fiance just had an ileostomy about a month ago after 25 years of coping with Crohn's. We were told by the surgeon that the procedure would be reversed in a few months, and then told by the GI that he would have to go back on medicine for maintenance to try and keep the disease quiet for a while. Even after the affected areas were removed there are no guarantees that the disease wont come back. My fiance has now gain back his weight, feels and looks strong, has energy that I have never in the 5 yrs together have seen. He is a new man!!! But just today he went for a consult to a top Crohn's specialist, and he was told that it would be best for him NOT to take any meds and consider keeping the ostomy.
The doctors reasons for keeping the ostomy were as follows: *Less chance of Crohn's coming back, *no meds, *less likelyhood of getting colon cancer.
Yes, all of these sound great right? The surgeon would have to go in to remove the ENTIRE colon..and my fiance would have a permanent ostomy, even thought he doesn't mind the "bag" and looks at it as a minor inconvenience.
Has anyone out there experienced this situation? Please give me some words of wisdom...

I am torn...is it right for me to feel like we've been cheated out of a normal life due to this disease?

Comments for Long life decision

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"Life long decision" update...
by: Lili(NJ)

Hi Michelle, Rich, and Vanessa
We are now coming up to the "1 year" mark of my now husband's colon resection...
Just an update: Since I last wrote in, We went off to P.R. and got married, we had 70 guest to join in the celebration of our new life together and my husbands new and healthy life....
He has not had his surgery reversed and do not think that he will anytime soon....He feels Great, looks Great, we can plan vacation and road trips without having to map out "restrooms stops" across America..
It has been great! he is not on any medications or treatments and has had NO problems or complications... We are now concentrating on starting a family, and with him not being on any steroids, or biologics it makes it so much easier.

by: V anessa

Good luck to your fiance and to you :) Please let us know how it went :). I am sending plenty of positive thoughts your way!

Thank You....
by: Lili

Thank you so very much for your comments....Even thought I work in the GI field and have dealt with hundreds of patients with Crohn's..I never understood it until it "hit home"...I am very proud of my fiance and I love him even more now after his surgery than ever before...It is a struggle to see the one you love suffer so much.
Rich, I understand what you are going thru, we do plan on having children and we were told that the possibility of our child having Crohn's is about 80% since my future mother-in-law has it also, and maybe even her mother..
Vanessa, we have come to the conclusion that we are going to ride it out for the year and hopefully have the surgery reversed.There are so many new treatments coming down the pipeline we are hopeful..
Michelle, thank you so much.. Our faith in God has taken us through this tough journey and has made us strong..
I hope that we all keep in touch and updates...Good luck to all of you....

Important decision
by: Vanessa

HMm what a hard decision to make. I am in the same kind of situation as your fiance. I have the CD since 13 years old and I had surgeries with complications in February and I have now an ostomy, they want to reverse it next year because there is still a happy part of my colon (a small one but still). I told my surgeon if I could keep the ileostomy forever and he told me no, it would not make sense since we do not know the future and there is still a healty part of my colon so why remove it. So next year, they will try to reverse it.
To be honest with you, I try not to think of this disease as something that stole my life because it is part of my life, unfortunatly it is part of who I am. So it is very important for you and your fiance to accept it (I know it is not easy trust me) and I know that sometimes, it is almost impossible to accept what is happening...
Good luck and please keep us updated.

by: rich

Being the husband of a woman with CD, we've been together for 28yrs, she started having symptoms after our 2nd child was born 24 yrs ago. It has robbed us of normal lives, robbed our kids of a well mother and robbed her of being able to work, and me a wife that had plans and dreams, that didn't come to be. I hate the disease with a passion. Our oldest son, 26 yrs old. was diagnosed 2 years ago and now we're dealing with that. After all the crappy things Crohn's has brought us, I could wish for a healthier life, but thats just stupid and not going to happen. sometimes you'll just want out, but if you're in love and willing to stick it out as we have, its all worth it. Have faith, pray and ask God for strength, he has an endless supply, I don't and neither do you and its there for the asking. With our son somewhat resenting his mom for not understanding all the disappointments, now understands what she was going through and they're closer for it. He doesn't have any kids and can't imagine trying to raise 2 toddlers and having CD. Sure its a curse, but with the right frame of mind and your heart in the right place, (in Gods hands) you can overcome all obstacles. Hang in there, but be ready, its a tough road, but never forget, LOve conquers all!! Good luck and God bless.
I hope this gives you some insight, it kind of turned into a rant then a preaching session.
Some people have somewaht normal lives, i guess it depends on how you deal with it and how well your partner deals with it.

Absolutely not
by: Michelle

Absolutely not, we have been cheated out of a real life because of this disease. I would get a second opinion if you are not comfortable with what he told you. Just because he is one of the top GI's dosen't mean he knows what he is doing.

Good Luck and Good Health to your fiance!!!


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