wants to take whole colon

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sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/15/2009 7:56 PM (GMT -7)   
I am so shocked and upset. My surgeon called today and says after reviewing my films he wants to take out my whole colon. A few days ago, it was just the terminal ileum and some of the right colon. The left looks diseased to him and he is the first of many folks who have looked at my films to actually see the rectovaginal fistulas--he said they're on the left.

I will begin to research but I'm freaking out. Will I need an ostomy? Will it be permanent? Has anyone had this surgery lately?

I will hopefully talk to my GI tomorrow. I am about to jump out of my skin.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08; cipro; supplements: MSM, e, selenium, C, B complex, multi, iron


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/15/2009 8:10 PM (GMT -7)   
Oh Sammies!!

I really am so sorry to hear this!! What you must be going through! I'm assuming you are you having significant problems right now. Shame on your doctor for telling you this over the phone!! And then not give you all the information. Please see him ASAP to find out more about what he is suggesting. Of course, get another opinion if you need to.

I've read posts from many people who talk about the relief they got from temporary and permanent ostomies. If it is necessary, I hope it really helps you too!

Let us know what you decide. Praying for comfort and peace for you!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/16/2009 4:36 AM (GMT -7)   
Hi Sammies I hope your Dr. can give you some answers today to what is going on. I am a bit lost for thoughts but keep posting and know you are not alone. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 1/16/2009 6:49 AM (GMT -7)   
sammies--take a breath...you are at the right place to ask all the questions you have and read past posts! The ostomy forum has a lot of people that have been in your position and made many different decisions...First and foremost find out what your doc thinks is best for your situation. Second, educate yourself on all the pros/cons and eventual outcome. Third, get a second opinion if you think it is needed.

Most importantly, make sure you have a ColoRectal surgeon and that they are familiar with Crohn's...it does make a difference!

I am a regular poster on the ostomy board, but was diagnosed with Crohn's more then 20 years ago, lived with fistulas and opted for a proctocolectomy...I'd be happy to help with questions.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/16/2009 8:46 PM (GMT -7)   
Sorry to hear this Sammies, hopefully by now you have heard whether this is permanent or temporary. Please keep us posted.
Prayers and (((HUGS))) your way
Jo

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/16/2009 10:30 PM (GMT -7)   
thank you for the responses and the support. GI called today. Will send me to nationally known doc for second opinion. However he completely agrees with my surgeon---terminal ileum through rectum should be removed. permanent ostomy. I am have such a hard time digesting this. He was very patient and kind on the phone. Setting me up with a patient who had the total colectomy 35 years ago when they had just started this surgery. Wants me to ask her everything and anything. I have had had 25 years of crohn's with no surgery. I didn't think I'd be "here" for several more years. I had never even thought an ostomy was a possiblity for me. Any and all advice is welcome. I read several ostomy board posts last night and a few online articles. Trying to get educated and fast.

THANK YOU!!
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08; cipro; supplements: MSM, e, selenium, C, B complex, multi, iron


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/17/2009 7:01 AM (GMT -7)   
Hi Sammies I am glad your Dr. is setting up a second opinion. At your age I think it would have come as a big shock. Glad you are finding lots of info on things and will be waiting to see what the other Dr. has to say about your situation. Hang in there and learn lots. Hugs..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 1/17/2009 12:36 PM (GMT -7)   
Sammies sorry to read your news. I would still want to speak with soneone that has had their colon out recently. I would think alot has changed in 35 yrs since that patient had surgery, at least I would hope so. Inspite of it all knwledge is your best weapon. Read as much as you can and learn. Just don't overload the brain. I would be tempted to select one or two large reputable medical sites and then take it from there, rather than reading from several different sites. Good luck Susie

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