Can't sleep so worried!

[30yrsofcrohn's]

I recently was hospitalized for anemia, due to strictures in my colon. I get remicade treatments every 8 weeks and I respond really really well. Here's what has me so worried: My gastro doctors suggested that I need to have a colon resection to remove a polyp and Lo and behold, the colon surgeon stated that I have my ENTIRE colon removed!!! What??? I'm not in any distress, I have normal bowel movements, remicade is really helping me and I lead a active life with very little Crohns's flare ups. I was just so SHOCKED when he suggested removing my colon and possibly saving my rectum that I had a serious meltdown. I made another appointment with a second colon and rectal doctor and he made me feel a little better by saying that he may be able to do a strictureplasty and resection and save most of my bowel. I'm so confused and torn and i really don't know what to do.
Should I just monitor the polyps and get a scope every year. The strictures don't bother me at all and the only problem I has was the internal bleeding, which responded well to a transfusion. I really don't want to have my entire colon removed, as I am living symptom free and I've read some horror stories about bowel incontinence after surgery. I'm plenty plenty scared right :stinks:

 

[Slim Johnson]

A colectomy over a polyp sounds extreme! Did he give any other reasons?? Is there a concern for cancer? I would agree that another opinion is in order.

The whole idea with surgery for CD, is to preserve as much intestine as possible...

Follow your intuition. You know what's good for you better than a doctor that sees you every couple of months. Some of these doctors don't have our best interests in mind..

 

[Zeing]

I agree with Slim, a colectomy over a polyp is way to drastic. I'd find out if he saw anything else in there that might have driven him to that option. You so get second and even third opinions. You are your best advocate.

I feel you when it comes to surgery, I had to get surgery for a stricture. The surgeon was caring but truthful. He told me before the operation that he didn't know what he would find and didn't how how much he would have to remove. He did reassure me that his goal was to preserve as much of my intestine as possible, but the unknown is never a good feeling.

Try to keep your head up, look for other options (and doctors) and remember that we are all in this together and are here for each other. I wish you the best.

 

[30yrsofcrohn's]

Thank you both for your encouragement!

I went in for my remicade yesterday and all the nurses had read my chart and they kept coming over to me offering condolences. One nurse even went as far as telling me to make sure you bring someone with me when I go in Monday to talk to my Doctor! Im horrified because I was told that I dont have cancer but they want to remove my entire colon due to a polyp and strictures! I overheard the remicade nurse tell another nurse that she's not gonna bother with scheduling me with another remicade treatment because I probably will have had surgery! Im really scared and I think those nurses should not have been talking out of turn!

I am absolutely paralyzed with fear and I cant understand why they would want to remove my entire colon unless they do see cancer. I've asked point blank do I have cancer and i was told by three doctors that I dont have cancer! So confused have anyone ever had this to happen!

 

[David]

Welcome to the forum, I'm glad you joined A couple things:

1. Are you sure that the stricture is in your colon (LARGE intestine)? Strictures located there are very rare. It happens, but it's rare. And I can't see how colonic strictures would cause anemia though anemia is common in people with Crohn's Disease for other reasons.

2. I agree with everyone else who said a colectomy for what you describe is drastic. Something seems amiss and I'm glad you got another opinion. Do you have a friend with some degree of medical knowledge who can go with you to advocate and help you understand what's going on?

I wish you well.

 

[30yrsofcrohn's]

Still worried; Going Bananas

David, thanks so much for your reply. http://www.crohnsforum.com/images/smilies/rosette2.gifI I am feeling like something is amiss as well. I went in for my remicade yesterday and I felt like I was in an episode of a twilight zone segment. The nurses was avoiding eye contact and when I was asleep I overheard the remicade nurse say that she wasn't going to bother with setting me up with an future appointment because I'll probably will have surgery soon. Mind you, I haven't agreed to anything as I am going for a colonoscopy on Thursday for a second opinion. I am very very afraid that I'm not getting the entire story. I'm scheduled to see my gastro doctor on Monday and I had a nurse tell me to "make sure you take someone with you". I could have done without her advice at that particular point and time. What I don't get is why my chart, with the surgeon's report was passed around the endoscopy suite is beyond me.
Anyway, I'm holding on to hope that my gastro doctor will tell me some better news and suggest that my colon be re sectioned as opposed to being completely removed. The colon and rectal surgeon suggested that my ENTIRE COLON be removed due to the fact that I've had Crohns' for so many years and with the polyp and structuring, I will be better off without my colon. Never mind that I'm feeling pretty good these days, gaining weight, not bleeding, no cramping, no diarrhea and no constipation or fistulas. I was told by the nurse that my colon is very diseased. (Again, how does she figure that), but I don't feel sick at all. Everytime I get my remiicade I go into remission.
I just don't understand. Not knowing the real deal is what's keeping me up at night. I got a prescription for ativan, but it's not working right about now.
Any thoughts of encouragement would be greatly appreciated right about now as I'm feeling so alone with nobody to really talk to about this whole crazy ordeal.http://www.crohnsforum.com/MedC/smilies/mad.gif

 

[Spooky1]

Hi there,

i'm a little surprised that they want to remove all your colon, and yet you are feeling healthy. how long have you been on remicade? if its new to you then hopefully it will keep healing things. I would be terrified that they weren't being honest with me over what was going on in there. Hope colonoscopy goes okay, in britain we get a printout of how procedure went. we get the gory photographys on it too. Can you say you want one of these? you could then see what is going on.

 

[Gra]

Shocked

I am very new here, but just what I have read so far and general life experience says to me that you should look for a new surgeon.

Gra

 

[30yrsofcrohn's]

Welcome to the forum, I'm glad you joined A couple things:

1. Are you sure that the stricture is in your colon (LARGE intestine)? Strictures located there are very rare. It happens, but it's rare. And I can't see how colonic strictures would cause anemia though anemia is common in people with Crohn's Disease for other reasons.

2. I agree with everyone else who said a colectomy for what you describe is drastic. Something seems amiss and I'm glad you got another opinion. Do you have a friend with some degree of medical knowledge who can go with you to advocate and help you understand what's going on?

I wish you well.

Hi David, I went in to see my Gastro doc and I got the real deal from him today! He let me know that he agrees with the surgeon that I should have surgery to remove my colon (three long strictures, one pre-cancerous polyp), but he feels that I should not have to wear a pouch because there is no active disease in my rectum. I'm so relieved to know that I don't have colon cancer. The colon and rectal surgeon was being proactive in wanting to remove EVERYTHING so that I won't get cancer in the future.
My gastro doc did NOT think all that was necessary so he's setting me up with another surgeon who also feels that I could have my small bowel connected to my rectum so that I won't have to be on a permanent pouch.
I am so relieved that I don't have cancer, but I got to get my mind wrapped around surgery. This will be my first surgery.

 

[30yrsofcrohn's]

Hi there,

i'm a little surprised that they want to remove all your colon, and yet you are feeling healthy. how long have you been on remicade? if its new to you then hopefully it will keep healing things. I would be terrified that they weren't being honest with me over what was going on in there. Hope colonoscopy goes okay, in britain we get a printout of how procedure went. we get the gory photographys on it too. Can you say you want one of these? you could then see what is going on.

Yes that want to remove my entire colon due to severe stricturing in my colon, but I'm not in any distress and I'm feeling relatively good. My Doc says that the concern is the polyp and what they call "dysplasia". Whatever that means, but I will be seeing a less zealous surgeon next week.
Thank you for the encouragement. Love this forum, really good people here.

 

[David]

Very interesting on the stricturing of the colon. Well, I'm glad you got things explained to you I know it's scary but I have no doubt you're going to do just fine!

 

[30yrsofcrohn's]

I feel better with the explanation from my doctor. Thanks for the encouragement, you're so cool!

 

[Spooky1]

I sincerely hope that all goes well, and do see the less zealous surgeon. you need the more understanding one. Only thing i will say is that you will probably, like me and many on here, suffer from short bowel syndrome. This means more loo visits, but hey, most on here are used to the loo visits.

keep us posted please, and we'll hopefully offer the moral support that you need