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can't take it anymore: surgical options??

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Crohn's Disease
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Posted 3/15/2008 5:31 PM (GMT 0)
I've been a mess for the last 8 years. none of the standard meds are working... remicade... humira... Tysabri... i've been on 20-80 pred daily for 8 years. even that isn't working anymore. getting up in the morning has gotten harder and harder. before i ask my doctor about surgical options for my crohns, are there any that will 'fix' the problem? can i just have my colon and intestines removed and other than a nasty external colostomy i'd be fine? or is that trading one set of problems for another?

the depression aside (and no, the anti-depressants don't work) it has been a really hard year. any thoughts on surgical solutions before i approach the doc?
Posted 3/15/2008 5:39 PM (GMT 0)
Sounds like your quality of life is at the bottom. I would seriously sit down with your GI and express how bad the "quality of life" is for you these days and tell him that nothing is working and you think its time for a resection. That is where they go in and cut out the diseased areas. I know my resections have brought some quality back to my life. It doesn't cure your Crohns but can help you to feel better. I don't understand why some docs keep throwing drugs at people such as yourself, when you never get relief. I think that is pure torture. Maybe you need to get a 2nd opinion. I can't imagine living 8 yrs without any relief. God Bless you and I sure hope you get some help soon. Keep us posted on how things go.

(((BUG HUGS)))
Gail *Nanners*
Posted 3/15/2008 6:55 PM (GMT 0)
jid,

Scared me to death there for a minute when you said your wanted everything removed. You cannot have everything  removed, only the diseased sections that need to be removed.

I guess I have a very lucky husband as he has had 3 resections, His first was the one that gave him his diagnosis in 1977, second one in 1982 and thrid one in 1992.  The only med he has been on was Prednisone for a short time and 6 weeks of full liquids and antibiotics for an abcess to heal.

He takes no meds at this time for the Crohns.  He does not have a colostomy but he does have a stricture. He of course lives with the knowledge that he will probably need surgery for the stricture if the need arises.  He will tell you he will choose the surgery over the use of any more prednisone.

Now this is just his story but for him surgery gave him many good years.  Every single person with Crohn's has a different outcome.

I wish you the best and bless you.

Kitt

Posted 3/15/2008 8:55 PM (GMT 0)
Hi jid, I am so sorry that Tysabri is not helping. And, with nothing super close on the FDA approval horizon, I understand why you're considering surgery. Me too if Tysabri doesn't work. I just don't think I can keep this up for years more waiting for something to be approved and hoping it will help. All the while, life is passing by... Where is your disease located? I've started watching ostomy support videos online in prep for taking a better attitude toward an permanent ileostomy (which is what my surgeon is pushing for me). I've spent all these years fighting to stay intact, hating the thought of an ostomy, when maybe that is my best option. I am curious to hear others' responses. I've also been reading on the ostomy board.
Posted 3/16/2008 12:59 AM (GMT 0)
I have had 3 resections and I have a pretty good quality of life. I don't let my CD stop me from doing too many things that I really want to do, I may have to adapt them, but I find a way. It sounds like it is time to have a serious talk with your doctor, and if that doesn't produce some sort of forward progress then maybe its time for a 2nd opinion. But I would say that 8 years is more than enough time to have given to this disease. It is time to reclaim your life. There are things that change after resections, like the likelyhood of more D, and possibly a more restrictive diet, but you can adapt to that. You CAN get back to a very good quality of life. I work, I've raised 2 daughters, volunteered at their school, in town, at church, belong to a book club, babysit for friends, exercise, quilt, cook, take classes, shop (way too much), go out with friends, travel, basically everything I want to do, and you can too!

I wish you good luck and hope that you can find a way to make your doctor understand how much this disease has taken away from you, and hope that you can get back a major portion of that!
Posted 3/16/2008 10:36 AM (GMT 0)
my word 8 years thats way too long for anyone to suffer,i wish i had my resection sooner,i was in so much pain,couldnt even eat mushy stuff hurt like hell going through.Had a resection with a tempoary illeostomy,which i just had reversed.The surgries were hard but certaintly worth it.I think its not right for your doctor to leave you like this maybe time for a new gi?

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