GI vs Surgeon re; surgery

I had a few GI doctors. The first was against surgery for me. He would always say I'm too young...whatever the heck that was supposed to mean...I was 38 or so at that time. The second was okay with it but wanted to use me as a human guniea pig first. Finally, when I had it with that guy I found a wonderful GI doctor who actually sat down and listened to me. She was very honest and straight forward with me and together, after going over all the things I tried and based on how wretched my colon looked, we came to the conclusion that I absolutely HAD to have my colon out. She referred me to a wonderful surgeon and the rest is history.

I wouldn't say my surgeon was blasé about the surgery. He's a great guy...very caring. He was upbeat and positive and that's exactly what I needed at the time. At the end of the consult, he asked me what I thought and didnt push me one way or the other.

Hubby had a local GI for a few years who went "by the book" treating him. I also got a lot of insight and helpful info and advice on the HealingWell UC forums which helped me keep my sanity and his throughout the ordeal. Once he landed in the hospital for 5 1/2 days she asked our permission to submit a referral to Shands and Mayo Clinics. She felt she had done all she could and felt these 2 hospitals were more "cutting edge" and might be able to do more for him. She didn't want to see him suffer any longer.

Mayo Clinic answered first so we began a relationship with them. Within a year or so and failed Remicade his GI Dr (and local Dr) felt surgery was the only option at this point.

It still took about 2 more years for him to make up his own mind that was the way to go after an honest talk with his local GI that we kept in the loop regarding his care at Mayo Clinic.

Fortunately he had 2 GI Dr's who treated him that seemed to be more concerned with him personally and not like some Dr's that just keep you coming back and treating you (or try to) and dissuade you against surgery. Both his Mayo and local GI Dr's you could tell felt very bad that all the various meds and infusion therapy could not help him as they knew he did not want the surgery. His Mayo Dr would speak with me and ask "is he coming around to the surgery decision yet?" and I would say "don't even go there...he is not interested in it". He would mention it at each visit but it fell on deaf ears.

Fortunately his local GI Dr is a straight shooter and a bit more blunt in her approach (in a good way) and she just put it out there and honestly said if it were her father or husband in his same situation she would recommend surgery. She felt that the amount of pain medication he needed to just function (under the care of a pain medication specialist he saw every month) since he was on the highest doses of UC meds and having failed Remicade it was definitely time. She felt it was just a matter of time it could turn cancerous. Maybe it was just that particular day for whatever reason my husband decided right there and then it was time.

I was soooooooooo proud of him that day making that decision. Six months later after getting all the paperwork lined up and a 2 week vacation we had planned for that Oct. he had the surgery Dec. 2010.

His colo rectal surgeon at Mayo we liked immediately.  He was very caring and detailed everything concerning the surgery and the whys and wherefors on the possibility of why a j-pouch might not be possible but would not know that until he was in there operating.  He only scheduled his surgery that day...good thing...took 7 1/2 hrs. A very tough surgery and he more than earned his salary that day! He met with me in a private room some 8 hrs after the surgery to explain and detail on a board what he did and why the j-pouch was not possible.  He knew I was disappointed (and totally drained and exhausted too) and couldn't even speak and ask questions as I was too emotional.  He came into the hospital room 2 days later to visit and explain to hubby as well.  My husband told him not to worry as he knew he did his absolute best and had no qualms with the end result.  The detailed operative notes certainly opened our eyes too and really explained even more just how difficult a surgery it was.

In his case the 3 doctors involved in his care and surgery are very important people in our list to be thankful too.

Also the WOCN staff before, during and after have been awesome also. Fortunately we did not need them much after the surgery...just a few phone calls....as a lot of trouble shooting I have gotten from here and the UOAA forum from other ostomates who are so generous sharing their information which is invaluable.

Post Edited (Another UC wife) : 3/18/2012 8:11:51 AM (GMT-6)

My GI was against surgery. He basically said I would be worse off.
I couldn't live that way anymore so I demanded a surgical consult just so I could get another opinion.
Had the surgical consult and the surgeon gave me hope, hope that I had not had in 2 years. He also told
me I would be FINE post surgery. I believed him and went forward with surgery.

Sue

The gi I had when I was first diagnosed in 2000 at my first appt said he didn't want to have to take my colon at when I was so young, 22 at the time. I stupidly said "take it out and do what with it?" After he explained it, he never brought it up again. I switched gis after his secretary told me to just drink slimfast for a while.
Anyway my second gi never brought it up either, I finally did, he was supportive but wanted me to try remicade, I did, big mistake! During the time on the remi I met with a surgeon, he was very straight forward, and very nice.
My gi really wantd me to go for jpouch, because I was so young (I don't know why they all say that, how can you be too young to be healthy?) But I talked to the surgeon and he said he does jpouches and would gladly do them, but if it was his sister he'd reccomend the perm ileo. He was amazed at how straightforward I was and how ready I was. Told me he talks about me all the time to his patiens when they are deciding or upset, not by name of course. But he says he just tells them that he had a young, attractive (he says that to make sure people don't have body image problems) girl, who was done with uc and wanted the whole thing over and done, and chose a perm ileo and was loving it and doing great! He said thatg it helps people come to terms with knowing young people choose surgery too.
Anyway I got a bit off, but a GOOD gi should respect your decision and help you with a surgical consult and support you.

Actually, the GI I was going to at the end of my ordeal was not the GI I had gone to all along, although I had gone to her at one point when my original GI didn't take my new insurance (eventually he did again, so I went back, although I really liked the new GI). My original GI never mentioned surgery as an option, and he pushed drugs, big time. When I was hospitalized at the beginning of November, he was not on call that weekend, and the covering doctor was concerned about even releasing me without the process for getting Remicade underway. When I was discharged, my doctor dragged his heels with the Reimcade, said he wanted to try a higher dose of Imuran, perform a colonoscopy (bad idea with such a diseased colon), blah, blah blah. We lost precious time, and I got REALLY sick within two days. When I called him to tell him how sick I was, he was in his clinic performing scopes and told me to go to the nearest ER.

I chose to go to the ER where my other GI was. I did really like her after all, and my original GI was on the verge of retiring and didn't seem to care much anymore. Well, after seeing my colon, she decided I needed a surgical consult, but didn't think I'd actually go that route. After all, she thought one should fight tooth and nail to keep a colon, although she did listen to my reasoning FOR the surgery, and I actually convinced her how ready I was.

The surgeon I don't think cared either way, although he was a bit skeptical due to my age; he said 36 is very young for a permanent ileo. The only concern he had was whether or not he could fit me in due to the block scheduling. At first I was supposed to be on standby, but thankfully I was given a set date and time.

After my colon was removed, and the surgeon saw how badly diseased it was, and the pathology report indicated severe high grade dysplasia, EVERYONE was VERY glad I had it out when I did.

As for your second question. Our surgeon (Helen MacRae at Mount Sinai in Toronto) was in no way blase about the surgery. In our first meeting she actually scared the crap out of us. She laid out all the pros and possible cons....

1. Was your GI against surgery unless it was life saving and if so why?  

Well, my GI [at the time] told me that he would support my decision 100% and my only 2 options were either Remicade or Surgery.   However, I got the distinct impression that he was pushing for Remicade.  Then when I chose surgery his whole attitude changed.  My new GI, after my surgery, told me that given my set of circumstances she would made the same decision I made with choosing surgery.   She said that if I had been her patient, before surgery, she would have referred me to a surgeon, without even trying Remicade as I had "indefinite for dysplasia" and that in and of itself was enough to warrant surgery. 

2. Was your surgeon very blase about surgery during your consult?

He was not blase, but pointed out a couple of things that I had not encountered in my intense research prior to making my decision.   He also told me that he was the last person that I should want to see in treating my Crohn's.   He had removed 10-inches of my colon just 9-months earlier and the area around the re-section looked fine, therefore, I think he thought maybe I should "try" Remicade, but he never said that.  He did tell me that he never tells a patient to have surgery and that they need to make that decision on their own.   I told him that the mere fact that I was willing to go through a 2nd major abdominal surgery less than 1-year after the 1st one should let him know how serious I was.  After my surgery, he told me that I made the right decision and that my colon was in terrible shape and that Remicade would not have worked.

 

Every GI doctor and every doctor I saw in the hospital told me i needed surgery. they told me with how bad i was and often i flared there were no real options left for me. I was the one that was against it. My surgeon was relaxed, but not blase. she's an expert, so she was calm, confident, kind, and explained everything in a way that made me feel comfortable and safe in her hands.

I don't think a surgeon should scare you, just lay it out. I think a good surgeon can explain it without scaring you, they would be comfortable with their abilty to do the surgery but also want to make sure you understand that there are risks. When you go in someone, by law, has to read you that scary paper with all the possible outcomes. I had some moles removed, and they read it me. I got off track sorry.

To Pancakes - I agree with you, I don't think they are all scalpel crazy and I do think they actually want what is best for the patient. The good ones, anyway. I also know that when I started talking to my surgeon about step two, to form the jpouch, he wanted me to be very clear with myself that that is what I truly wanted, rather than keeping the stoma, which he saw as a perfectly legitimate option.

My GI was also not blase nor was he positive nor negative about surgery in the beginning. He mentioned it at the beginning, because I had a stenosis in the colon, and he though the chances of pre-cancer were good. He started to get a more severe tone in his voice when he said we have to clear the matter surgically - but that was many months later when my stenosis was closing down on me, pred was having no effect and the inflammation was going wild. He said that progressing on to the really hard drugs like remicade was a possibility but in my case, because of the stenosis, he considered it bad medicine and urged me to have the surgery, in his factual way. He was very concerned that I not be in denial about how ill I was, and he organized consultations for me with two other big GI's so I could get the other opinions quickly, He also hooked me up with a top and personable surgeon who also talked to me about his end of things. The surgeon also agreed that the surgery had to happen.
In summary, I think that my surgery had to happen and that the GI and surgeon together were professional and caring in the way they helped me to make the decision myself.
It's just that when someone has good reason to choose colectomy, I no longer see it as "elective" when there is clearly no other choice.

killcolitis....

Hi. I as well, may have made an overly strong statement by saying that our surgeon scared the crap out of us.

I think it was more our doing than hers. Dillon was just so fed up with his UC life and becoming hopeful when a new drug was started and then going through the let down when it did not work. He finally agreed to talk to the surgeon and I believe, thought in his mind, that surgery would be the magic answer to regaining his pre-UC life. Our first consult showed that that was not the reality. The surgeon simply laid out ALL the pros and cons and Dillon was terrified of the cons. He left the meeting saying to me "there is no way in hell that that woman in cutting into me". Again, the surgeon did not dwell on the cons but they are what Dillon dwelled on. With time, and talking to his GI (who he really liked) and our family doctor he began to accept that surgery was his best option. You know the end of our story and how well it turned out.

I do believe that Dr.G would be slow to proceed to surgery. She was Dillon's doc until he was hospitalized while she was away for a week and he came under the care of Mary Zackos. He absolutely loved her and stayed with her until he turned 18 and we had to go to Mount Sinai. Dr. Zackos was the one that started the conversation that included surgery. There is, however, nothing wrong with Dr. G. being slow to proceed in that direction.

The main thing is that you are getting all your questions answered and are talking with a surgeon and seeing all the points of view. I am sure that you would be in very good hands under the care of this surgeon. With time, you will reach a place where you are confident with your decision to either avoid surgery or to head in that direction.

All my best,
Cathy

killcolitis:

Not sure about your questions..but, I can say the following:

1) The GI who encouraged surgery (should have probably seen him a few years before..LOL!) scared the @#$@! out of me and made me go find a surgeon..

2) Both surgeons I talked to..one at Mayo Clinic and one at the Colon and Rectal Research Center in Orlando had a quiet confidence about the whole thing...and, both said I would be feeling much better afterwards..they just didnt' tell me "afterwards" was 6-9 months down the road..LOL!

Long story short, I feel much better now than I did one year ago at this time..low blood protein, dehydrated, numbness in hands and feet...now, my brain is just numb..