Meeting with the colorectal

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songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 5/14/2010 10:06 PM (GMT -7)   
Well I finally get my Medicare on June 1st and thats my first appt with the colorectal. I have not had much success with my GI who has tried every drug out there to try. The pain persists and my symptoms go from constipated to D every other day. I am wondering if they will finally decide to operate after 5 yrs and whether that will actually be a good thing.

My grandmother died from her Crohns. She had that first operation and then it went downhill from there. 10 yrs and she was left with failing organs and passed away at 70. Yes I know I am way younger but I do have worries about will one surgery lead to two then more...what intestines will I have left by her age? These are things I think about. Any thoughts?

I was kinda hoping for surgery so maybe I could go into remission for once!
Psalms 9:18
But the needy will not always be forgotten, nor the hope of the afflicted ever perish.

Finally awarded disability after 4 long years! Thank God for attorneys!
Dx'd with Crohn's colitis May 05, spread to ileum as of 08'-- Currently on Humira every 2wks, Pentasa, Entocort, Phenergan,Zantac, Ambien


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/15/2010 8:07 AM (GMT -7)   
Most do go into remission afterwards, but I will be honest not all. I think you Gma's case sounds a little extreme and think you will do fine. Most important thing is to be sure you are always on maintenance meds afterwards. Good luck
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/15/2010 8:31 AM (GMT -7)   
I totally agree about the maintenance meds
it is imperative you stick with a good med regime
keep posting
lyn
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf
MEDS.....LYRICA..DILANTIN.. PENTASA.. FOLIC ACID.. MTX..ATIVAN PRN..DIAZEPAM BID...TRAZADONE

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Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 5/15/2010 8:29 PM (GMT -7)   
Remember that Crohns treatments have come a LONG way just in the 6 years I've been diagnosed! I know it's hard to not compare yourself but remember that in just a few years, new ground breaking drugs have come onto the scene.

I had a resection on Feb 3 that I fought tooth and nail against for several years. I had the same fear as you - if they start taking pieces, what will I be left with in the end? Reality was that a life lived on Vicodin and extreme exhaustion wasn't worth the possible saving of the segments of completely hardened (and perforated, I found out!) intestines. They weren't doing me any good anyways, and obviously doing a lot of harm, so they needed to come out. By having it out, I can start over again. And my disease is already back... my remission lasted about 35 days... but at least I start over again with a fresh start. And with great meds, perhaps it won't escalate as quickly this time. And I'm completely pain free and even enjoying salads, popcorn, and nuts! It's been nice.

At the point that I hit rock bottom is was when we had tried it all and nothing made a difference. That's when I knew my only choice was surgery.

Good luck with your decision.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/16/2010 5:05 AM (GMT -7)   
My Crohn's disease was active and w/o let up for 2 1/2 years until I agreed to a resection.

I was blessed w/a TWENTY YEAR REMISSION of symptoms and disease activity after that resection!!!

That resection was SOOOOOOOO WORTH IT!!!

If the consensus for you is a resection may you be similarily or even more blessed!!!!
My computer says I need to upgrade my brain to be compatible with its new software.


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8544
   Posted 5/16/2010 8:30 AM (GMT -7)   
If you're meeting with a colorectal surgeon, does that mean you're considering surgery of the colon rather than the small bowel?

I'm in a position where apparently I'm not suited for surgery for any part of my GI tract. I have Crohn's of both the colon and the small bowel. I had a recent colonoscopy where the colon was shown to be severely diseased. The surgeon who did it told me afterwards that surgery was indicated, but when I went along for my post-colonoscopy appointment the GI told me that surgery of the colon wouldn't be suitable because I have disease in the small bowel. In an appointment previous to that, she had been against small bowel surgery as well but I don't remember her exact words any more; just something about it coming back and more surgery being required, I think.

Bear in mind, I'm in the UK and under the "care" of the NHS, whose treatment protocol in the case of IBD seems to be patching you up just enough to ensure you don't actually die on them. Except in my case I have severe doubts they can actually manage that. I've been put onto a treatment regime of entocort and 6MP, with a view towards taking Remicade in 3 months. But Remicade isn't licenced as a maintenance therapy here, so I'm only allowed up to 3 doses. Both the Remicade and steroids are used as short-term treatments, with eventually only the 6MP being used as the long-term maintenance drug. But 6MP already failed on me once, so whatever.

"but remember that in just a few years, new ground breaking drugs have come onto the scene."

No! Not on the NHS they haven't. Even in the US, the alternatives don't seem that great; you have a few more biologics than us, and biologics seem to be notorious for eventually failing. But that said, the quality of care for IBD in the US does seem to be much higher - provided the insurance is good enough.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/17/2010 12:55 PM (GMT -7)   
Nicecup: My colon was completely diseased as was my rectum. Both were removed along with a foot of small intestine. If the disease is going to be bad it's going to be bad - what are you hanging onto to diseased colon/small intestine for??? Your GI sounds like a ninny.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8544
   Posted 5/17/2010 4:28 PM (GMT -7)   
My rectum is actually okay, so they could leave that part! The disease goes all the way to the sigmoid colon, but the truly knackered half of the colon is the right side. I suspect the terminal ileum is probably in a pretty terminal state too. (They didn't view that on my recent colonoscopy, not sure why.)

My GI was the one who told me that my Crohn's would "kill me" if I continued to not take anything for it. That has been stressing me out for the last fortnight, but I think I'm becoming more accepting of the current situation, albeit slowly. I don't have much choice - it's that or live in fear, and that gets exhausting fast. I just have to presume that the medication will work to some degree and that my diseased intestines will hold out, at least for the foreseeable future.

And then find something to hold onto which gives me a degree of optimism and courage.

songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 5/19/2010 1:41 PM (GMT -7)   
I have a psuedo obstruction constantly in the terminal ileum and have never had blood free stool in 5 years, the pain is horrible and makes me vomit. My GI is reluctant because he believes it will return after resection....Ive had it with all the drugs....Im like cut me open..ya know...and take it out. You can actually feel on my left side where food hardly gets through and you can push on it and hear the contents struggling to pass...its disgusting!

ps: I would love to have a salad, popcorn, or a steak....mmmmmmmmm
Psalms 9:18
But the needy will not always be forgotten, nor the hope of the afflicted ever perish.

Finally awarded disability after 4 long years! Thank God for attorneys!
Dx'd with Crohn's colitis May 05, spread to ileum as of 08'-- Currently on Humira every 2wks, Pentasa, Entocort, Phenergan,Zantac, Ambien

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