Another question....when and why did they finally decide to operate?

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songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 4/26/2008 5:34 PM (GMT -7)   
How much is enough? When do the docs give up and decide to cut out the bad part?? Ive had numerous surgeons look at my file...say you have severe Crohn's and we will probably operate before your 40 but always say....no way!!! no way am I cutting on you..it will come right back..you will get fistulas...noway!!!  When do they decide that steroids and everything else is not doing its job! I can't even keep a job anymore!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 4wks, 20mg Pred, Asacol, 75mg Imuran, etc.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/26/2008 6:15 PM (GMT -7)   
Hi Songstress They decided to operate on me when I had a very narrowed problem in my small intestine. I had a Dr. wanting to operate a year before that. You must be feeling a bit fed up .What is going on in your intestines? I had the fis. as you probably have read. Hope things get better I wish I had something better to say about it but I sure know that a person gets a little discouraged if you need to know what symnptoms people had just ask. lol gail

songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 4/26/2008 6:43 PM (GMT -7)   
yeah...gail..if u wouldnt mind what symptoms were u having?

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 4wks, 20mg Pred, Asacol, 75mg Imuran, etc.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/26/2008 6:57 PM (GMT -7)   
You need better colorectal surgeons. YOU are the one who knows WHEN you are ready for surgery. Where are you located? Have you checked the US News & World Report's annual listing of the top 50 teaching hospitals in the USA by department? Will your insurance allow you to go to the closest top rated gastro department listed?

Understand that aggressive Crohn's disease reduces the chances of long lasting remission after surgery. Do you, at this time, have fistulizing Crohn's disease? (((hugs)))
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 4/26/2008 7:54 PM (GMT -7)   
I live in Kentucky.....no fistulas yet THANK GOD...but recurring thrombosed hemmes and fissures and bladder and vaginal issues due to the crohns...right sidee thickening that never gets better and now the spreading of the crohns into the small intestine and ileum doesnt make me feel too good

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 4wks, 20mg Pred, Asacol, 75mg Imuran, etc.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 4/27/2008 12:51 PM (GMT -7)   
My GI wanted me to have surgery done some time ago... but... the doctors at the hospital I went at didn't want to do it... said I was too young... said that they'd end up keep cutting and cutting... and... pretty much all the same things you said...


Personally, I would like to avoid surgery as long as possible... but man... I want to feel better... *I just recently got out of the hospital... I was put in there Thursday by my doctor when I went to go see him... Gonna have an outpatient colonoscopy done next Monday... (not this Monday)...* My prednisone dosage was bumped up again...


Was taking 20 mg... now I'm up to 40 mg.... But I think whatever was going on with me (thankfully, it didn't look like on my CT scan that there was any sign of a blockage or anything)... Flare-up and whatnot... think the prednisone is helping because I'm not in as much pain as I was.... and my face is beach ball-sized... so... *lol*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 4/27/2008 3:24 PM (GMT -7)   
How long have you been on prednisone? One of the determinants that swings the pendulum on the side of surgery is steroid dependence. Have immuno-suppressant medications been suggested for you?

All three times I have had surgery it has been to relieve obstructions. Twice my bowel was basically occluded and nothing was getting through anymore. But surgery is contemplated for other reasons as well. It doesn't sound as though you have primarily stricturing crohn's like I do. I would expect to see more aggressive medical management of your crohn's before surgery is offered as an option -- unless you've run through the gamut of medical options and are still getting no relief (except from prednisone).
Belleenstein:

30+ years living with Crohn's.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/27/2008 4:14 PM (GMT -7)   
Hi Songstress Well it started around xmas with loads of D then I got very bad pains and couldn't due much for awhile ,eating little,incontinent at night when sleeping ,constantly not making it to bathroom I had to always wash clothes . Gurgling like crazy all the time ,loud ,running water sounds, pain ,bulging at times here and then it would be somewhere else it was getting scary.So are you having these symnptoms ? Not everyone is the same though so what made me need surgery might be different for others. Hope this helps in some way. lol gail

CheerDad
Veteran Member


Date Joined Apr 2004
Total Posts : 2284
   Posted 4/27/2008 9:41 PM (GMT -7)   
I agree with C2, if you have a qualified colorectal surgeon, they would know the best way to deal with the complications associated with surgery. I know that my last surgeon took the time to examine the intire bowel to ensure all active disease and fibrotic strictures were removed. It is your body and you have the right to get and ask for the care you deserve.
We can respond to irritation with a smile instead of scowl, or by giving warm praise instead of icy indifference. By our being understanding instead of abrupt, others, in turn, may decide to hold on a little longer rather than to give way. Love, patience, and meekness can be just as contagious as rudeness and crudeness.

 
Randy

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

Dx'd with Crohn's at age 12. Symptoms since age 5.

Learning to live with this Disease rather than be its victim after 36 years.

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