Question:

Thanks, Sam. I recently read an article that said quality of life for UC patients returned to that of the general population almost immediately following surgery, and many patients regretted not having the procedure done earlier.  I have had UC for 14 months now, have not been in remission at all despite a tremendous amount of steroids, other meds and herbs and dietary changes, and cannot imagine living like this for another 14 days, months, years, whatever.  Don’t mean to be melodramatic, but as my GI said, "Our backs are not up against the wall, they’ve pushed through to the other side."  And of course, we shouldn’t forget what my gynecologist said, "Acupuncture is for headaches." I have a consultation with a surgeon, Dr. Marc Sher, in early June.  Has anyone here heard of him?  He is affiliated with LIJ in New York. Thanks, Joclyn – Hide quoted text — Show quoted text -SamOneElse wrote:

Hi, Joclyn — There are a couple of ways to answer your question. I had UC for 22 years (sometimes unable to get entirely off of steroids for over a year at a time), and would have stayed away from surgery forever if it hadn’t been for some dysplasia my doc found during a colonoscopy.  (Once there’s dysplasia, the risk of cancer becomes unacceptably high.)  So 3 1/2 years ago, I required surgery and had a J-pouch done in two steps. My last couple of years with UC, I was on one of those new-fangled steroids that’s not much absorbed by the body, and therefore doesn’t have the same kind of side effects.  I also discovered that some things in my diet were clearly contributing to flares. My heart has always said to avoid surgery if at all possible.  Besides, you never know when they might find a cure. On the other hand, based on current medical knowledge, surgery does eliminate your need for steroids, as well as the (sometimes insidious) colon cancer risk.  Along those lines, a few years ago, one of the top IBD experts, David Sachar of Mount Sinai in New York, wrote an editorial titled something like, "Ulcerative Colitis treatment: Are we saving lives or saving colons?"  There are many people who say that their only regret about surgery is that they didn’t do it sooner. The thing that I found most helpful was getting an second opinion from the most knowledgeable specialist I could find — someone who could tell me if there were any other options I should try before surgery. By the way, as for steroids, yes, they’ll give ‘em to you in the hospital anyway, and then taper you off afterward. Sam in Connecticut Joclyn and Jim inuffishthou…@earthlink.net wrote: Hi there, I have had Ulcerative Colitis for 14 months and am at the proverbial end of my medical rope.  I am now seriously considering surgery, but have many questions.  Is there a FAQ for this group? My main concern is that because of all the prednisone I’ve taken, my rate of healing is greatly compromised.  Should I wait until I’m totally off the steroids?  Or does it not matter since they probably give you that in the hospital anyway? Thanks, Joclyn

Response:

Hi, Joclyn — There are a couple of ways to answer your question. I had UC for 22 years (sometimes unable to get entirely off of steroids for over a year at a time), and would have stayed away from surgery forever if it hadn’t been for some dysplasia my doc found during a colonoscopy.  (Once there’s dysplasia, the risk of cancer becomes unacceptably high.)  So 3 1/2 years ago, I required surgery and had a J-pouch done in two steps. My last couple of years with UC, I was on one of those new-fangled steroids that’s not much absorbed by the body, and therefore doesn’t have the same kind of side effects.  I also discovered that some things in my diet were clearly contributing to flares. My heart has always said to avoid surgery if at all possible.  Besides, you never know when they might find a cure. On the other hand, based on current medical knowledge, surgery does eliminate your need for steroids, as well as the (sometimes insidious) colon cancer risk.  Along those lines, a few years ago, one of the top IBD experts, David Sachar of Mount Sinai in New York, wrote an editorial titled something like, "Ulcerative Colitis treatment: Are we saving lives or saving colons?"  There are many people who say that their only regret about surgery is that they didn’t do it sooner. The thing that I found most helpful was getting an second opinion from the most knowledgeable specialist I could find — someone who could tell me if there were any other options I should try before surgery. By the way, as for steroids, yes, they’ll give ‘em to you in the hospital anyway, and then taper you off afterward. Sam in Connecticut Joclyn and Jim inuffishthou…@earthlink.net wrote: – Hide quoted text — Show quoted text -

Hi there, I have had Ulcerative Colitis for 14 months and am at the proverbial end of my medical rope.  I am now seriously considering surgery, but have many questions.  Is there a FAQ for this group? My main concern is that because of all the prednisone I’ve taken, my rate of healing is greatly compromised.  Should I wait until I’m totally off the steroids?  Or does it not matter since they probably give you that in the hospital anyway? Thanks, Joclyn

Response:

I was on 20mg of Pred a day for 5 years before my surgery, up to the day of it.  I’m still on it, but down to 5.  I had no complications during my surgery because of being on it.  However, make sure they don’t stop you from a fairly high dose (10+ mg) cold turkey.  They did that to me in the hospital (Residents, not my doc) and it was one of the most painful days of my life because of the withdrawls. No question though, have the surgery!  You’ll feel so much better. Kaleb – Hide quoted text — Show quoted text -Joclyn and Jim wrote:

Hi there, I have had Ulcerative Colitis for 14 months and am at the proverbial end of my medical rope.  I am now seriously considering surgery, but have many questions.  Is there a FAQ for this group? My main concern is that because of all the prednisone I’ve taken, my rate of healing is greatly compromised.  Should I wait until I’m totally off the steroids?  Or does it not matter since they probably give you that in the hospital anyway? Thanks, Joclyn

Response:

it is better to be free of steroids for recovery post op, but if you need the steroids to remain fit for surgery then that leaves you in something of a catch 22 situation. Talk it through with your consultant at your next visit Mark "Joclyn and Jim" <inuffishthou…@earthlink.net

wrote in message

news:3B09B3F2.CE0132FA@earthlink.net… – Hide quoted text — Show quoted text -

Hi there, I have had Ulcerative Colitis for 14 months and am at the proverbial end of my medical rope.  I am now seriously considering surgery, but have many questions.  Is there a FAQ for this group? My main concern is that because of all the prednisone I’ve taken, my rate of healing is greatly compromised.  Should I wait until I’m totally off the steroids?  Or does it not matter since they probably give you that in the hospital anyway? Thanks, Joclyn

Response:

Frequently, when you are on steroids and have surgery, they will double the dosage you are on to prevent the compromised healing problems.   I was on steroids when I had my surgery, as, I suspect, are a lot people who have had this type of surgery. Unless your doctor says otherwise, my inclination would be to have the surgery sooner rather than later. You are probably going to be some miserable as you withdraw from prednisone, and you will be somewhat miserable from the surgery for awhile. Since misery loves company, why not get it all over at once.

Response:

Hi there, I have had Ulcerative Colitis for 14 months and am at the proverbial end of my medical rope.  I am now seriously considering surgery, but have many questions.  Is there a FAQ for this group? My main concern is that because of all the prednisone I’ve taken, my rate of healing is greatly compromised.  Should I wait until I’m totally off the steroids?  Or does it not matter since they probably give you that in the hospital anyway? Thanks, Joclyn

Response:

Related Posts

No matches