Dr. thinks I need surgery right away but I hesitate

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Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 3/16/2009 6:07 PM (GMT -6)   
OK Hi there. I usually go on the Crohn's site but I have been reading your site a little lately.
My GI Dr. thinks taking all of large colon and having bag would be good. I have precancer cells and he said it "could" get worse if they don't take it out. I saw the surgeon today for a second opinion and he said the same thing. I was really sick for the last three years and no medicines worked. Finally I got fed up with it all and got much better on my own with being really careful with diet and sleep and stress.

So I am feeling good and 4 months after tests the Surgeon finally sees the charts and thinks I should have the surgery too. They say I have pre-pre cancer cells. I don't feel good about this surgery at all. I guess if I was suffering as most of you seem to have done it would be different. (Although in the 3 year flare I must admit things got pretty scary and painful).

So now I'm thinking what's the big deal? My life has been changed forever from the disease and will not go back. The accidents sound worse than any I ever had with D.

Most of you seem very happy to have the operation but I am not ready now!!! So why should I listen to dumb Dr. now, when they haven't got one thing right for me yet?

Sorry to be so crazy sounding but I am upset from this news today.

I loved reading the "firsts" you have shared. There does seem much positive on the site. Your attitudes and courage are amazing. I hope you can shed light for me. Thanks

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 3/16/2009 6:24 PM (GMT -6)   

Trigirl--we all have positive attitudes because we are on the other side of our worst days!  You still have a lot to digest...precancer cells should not be taken lightly and it can be even more difficult to accept when you are feeling better.

I didn't feel sick when I had my colon removed, but after I was through my recovery, I realized how ravaged my body was...a surgery of this level is life changing and it is best done when your body is on the healthy side. 

This forum is great, and you will read both good and bad, but it is all relevant...ask questions, digest the information and educate yourself on colectomies...you can also go to www.UOAA.org for some really good links to everything from products to taking care of stomas.

You didn't mention whether or not your ostomy will be permanent, I assume with the Crohn's diagnosis it will be...also, from my personal experience (I've had my ileo for about 9 years) I've never had an accident even close to the ones I had pre-surgery...so that is a possitive tongue

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/16/2009 6:39 PM (GMT -6)   
Sorry to hear you have to make this decision.
having those precancer cells is a BIG deal though! you sure dont want to end up with cancer, when it is something that can be fixed.
I know that its scary to think of having your colon removed, and that you dont feel sick right now. But like Ohio said,k you wont realize until that awful thing is out just how sick you realy were.
Anyway as for the leaks and such, while they do happen, its not as likely. And if you think about it, say you are out inpublic and you have a leak, well its in the front of your pants. most people are not gonna think, OMG thats poop! they will just think you spilled something.

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 3/16/2009 7:52 PM (GMT -6)   
I certainly would take both opinions seriously... even if it is pre pre cancer cells. Like Summer said, you have an opportunity to take care of it w/o radiation, w/o chemo but it will require a surgery and recovery and most of all, adjusting to the "bag". It is life altering however it is up to you if you want to make it a positive life experience or a negative one. We all, and I mean ALL, have some bad days. Even normal people have bad days. We are normal, but our plumbing is just a bit altered! And I agree with Ohio, it is best to have surgery when your body is not ravaged by disease. It makes recovery a whole lot easier. But it also makes the decision to have the surgery a whole lot harder when you are not feeling bad. Do your research, ask questions, make an informed decision. We are here to help in any way that we can.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Veteran Member

Date Joined Dec 2008
Total Posts : 511
   Posted 3/16/2009 8:13 PM (GMT -6)   
I'm sorry too that you've received such strong opinions for your doctors.  The thought of surgery is something scary!  My husband and I always joked that I could go the 'cure' route for UC once I was Dx two years ago, but never did we think we would be here now. 
I'll also tell you something...though you feel good now, you probably don't realize how hard your body is working to give you that feeling.  It may be that your CD may improve after this surgery and you may just feel the best you have in a very very long time.  I realized that not only do I feel better, but that I've not felt this way since before my initial flare...even though I was maintained for a short time, I was still on a lot of medication and my body was full of nastiness. 
Anyway...do give yourself time to absorb this information and you could always write a pros and cons list.  If you would like to know more specific experiences regarding life with an ileo please ask away!  I'm glad you've voiced your concerns to us!  Keep the questions coming!  There are a few of us still in recovery from the surgery...some are extremely recent!
I hope to hear more from you!!!
: )  Robin
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
"Your mind is like a parachute, it only works when it is open."  -Unknown

Regular Member

Date Joined Mar 2009
Total Posts : 31
   Posted 3/16/2009 8:28 PM (GMT -6)   
By the time I got in the hospital and they tried everything (on top of the 18 months of trying everything else before that) I was left with no option but the ileostomy. Well ... it was made pretty simple: I asked (thank god a doctor friend was visiting me, masquerading as a civilian!) what would happen if I didn't let them operate. I was told they could pull the IV and send me home. I was pretty strong so they couldn't guess if I would die first of malnutrition or bleeding to death. I might last five or six weeks, no more. Talk about putting all the cards where I could see them! So that all said, the next problem was I was not strong enough to survive surgery right then and they wanted to put in a feeding tube for a week or so. Oh boy ... flat on my back, trapped in bed even LONGER. So another TG to my friend being there who suggested an alternative feeding method that would let me stay mobile. And TG again for having a surgeon with enough brains to listen! Well, after I identified her and said which hospital she was with, cause they sure were looking at her oddly before that.

Do what you've got to do for you - but don't not do everything you can to be well.

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 3/16/2009 10:32 PM (GMT -6)   
Absolutely appreciate the ideas and comments from everyone.

I will try the pros and cons list.

Glad to hear the accidents aren't so bad with the new plumbing as I thought.

I will go to the site suggested right after I thank you all for your understanding hearts and reat advice!!

Regular Member

Date Joined Aug 2006
Total Posts : 112
   Posted 3/17/2009 12:32 AM (GMT -6)   
I always thought the worse thing that could happen to me would be to have my colon removed.
I didn't have a choice. I felt so much better and now i don't have to worry about cancer either. I do
all the things I did before and my C.D has not been active since the surgery. You have done the right
thing by talking to people on this site. Everyone here is supportive and helpful. Having a bag is not so
bad when you consider it could improve your health and the quality of your life. I wanted to prove this so I am running a half marathon to raise money for the crohns and colitis foundation in july in napa,Ca.
I want to prove that your life does not have to change once you have a bag. Good luck and god bless
you. And stay in touch. Fruitcake

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/17/2009 8:59 AM (GMT -6)   
tirgirl-most accidents are user error also, and once you get the hang of it, you wont be near as likely to have one!
The worst one i ever had was becasue my stupid self hooked a bag from one set to a flange from another!
Thats like trying to hook a lego to a tinker toy!
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