All or nothing

[spingirl]

I have seen my GI and he wants me to have surgery. I have strictures on 2 sides of my large intestine. One on the left is worse. He says that because I have rectal stenosis that is more of a chron's thing...even though I test negative. I feel pretty good now that I stopped taking Asacol HD - I think that was causing more symptoms than helping me. Now I am just on Imuran. Seems to be helping. I get little twinges of pain but nothing terrible. GI says he doesn't want to gamble and thinks surgery is best option. I had no dysplasia and no cancer with colonscopy last week. I hear about people having resections all the time with laprascopy surgery. Why not me? I just don't know why it has to be all or nothing. Why do I need all of it out and a bag now? Can't I do this in steps? Take out the major stricture first? I mean...I might have rectal stenosis but I am managing to poop just fine. It comes out and its skinny but I just want a little more time before making the huge incision and taking it all out and having a bag. I read posts and I know everyone is different but what makes some a candidate for a resection and others not? Anyone have ideas? Is this something I can demand? Is it just easier to take it all out? I don't know but once its gone its gone. I don't want to find out later that it would have been an option if I had pushed harder. OH I hate all of htese decisions to make. Although I don't feel like I really have any options.

 

[Crohn's 35]

From what I know the large bowel can't be done as a resection, and you have more than one area. My resections both were in the Ileum where is is common and my first one was laproscopic and the second was not it was open and never did recover fully from it that was 2003.

I know you are not looking forward to it but many have had it done and have had a better life ahead. I know you are scared. Maybe some one with the experience of the large bowel can chime in. :hang: Do you know when the surgery will be?

 

[spingirl]

Hi Pen, No dates yet. I still have to meet with surgeon. Over a year ago I had this GI tell me he couldn't get through stricuture and to see surgeon. I did and he wanted to rip out my colon. My primary Dr. wanted me to gt 2nd GI and surgical opinons. I had a 2nd colonoscopy and he was able to get through the stricture and said he thought I should try stronger meds for a while and to hold off on surgery. What I should have done was go back to the Dr. that got through...but I went back to my GI I had a relationship with. Now he got through this last time but had to dialate and he said that is risky and he doesn't like to gamble and wants me to see surgeon again. Now I am all confused again. I thought I would be ok for at least a few years. I just told my GI tongiht that I am not taking Asacol HD anymore because I have 75% fewer BM's not on it. He said to just take the Imuran and call him in 2 weeks (he's going on vacation). He still wants me to see surgeon. On the 31st I have a Primary doc appointment and I will tell him everything. He is really good and I trust him to steer me in the right direction. I just started a new job I haven't even been there a year yet...I'm just not ready...my husband is out of work and I carry the health benefits...I'm just all mixed up. I think maybe where my rectum is diseased...maybe where it is there is no good piece between where i have to have out and where the rectum is to connect it back. I don't know. I am just feeling sorry for myself tonight... if I have to have surgery why can't it be with a j pouch option? And then I try really hard to count my blessings. No cancer. No emergency yet. At least there is something they can do for me. Why can't I just count my blessings?

 

[Bethbug]

Spingirl,
You have every right to feel the way u feel! Do NOT appologize. I would feel exactly the same way. Hell, I do feel the same way and I'm not even in your position. The one thing I'm learning from this site is that there are SO many other treatment, drugs, and options out there that I had no idea about. My doc pretty much told that since I failed Remicade and Prednisone doesn't work, that there isn't anything else out there for me. So I let them do a small bowel resection of the ileum. Then because they missed some of the really bad part had to go back in 30 dAys later for another surgery. A year later, I feel just as bad and I find this forum and find out that, hey, there ARE other drugs to be tried. My point is, doctors don't get on here and do the research like we do. They use the treAtments they know and they're use to, and sometimes if they don't know, i feel like that's when they refer to surgeons. And what surgeon doesn't want to cut? They'll always say u need surgery. That's what they do! So my suggestion, arm yourself with as much info and research as possible and go in there and demand better. If nothing else, go back to that other GI doc and explain to him what u want. Present him with the info u have. If you feel like your doc is jumping into this too fast, you're probably right. So do your homework and then if you realize that both docs have the same opinion, you can at least feel more at peace with he decision. Because from what I hear, if you're going to have a total colectomy, you need to be mentally prepared for it and for the recovery.

 

[sararay]

Get a second opinion. I had a portion of my colon taken out and I don't have a bag.

 

[Rain]

You should get another opinion. When I had my surgery, I had two complete blockages in the lower part of my colon. The rest of it wasn't that bad, but he went ahead and took all of it except for the last nine inches..The problem is that they don't tell you everything. I suppose they usually know what they are doing though. I hope all goes well but you sound like you aren't doing too bad..If you get to a point where you can't poop then you should definitely see a surgeon. Just don't let it get too bad.