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What to do: Met with two surgeons who gave me different surgery options

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Posted 8/21/2012 6:34 PM (GMT -5)
I met with two different surgeons and got two different types of procedures they think they should do for me. I wanted to know if anyone has any input on these as I am so new to this surgery thing:

1. Dr. Becker (Newton Wellesley Hospital, MA) - Surgeon wants to do a total proctocolectomy with permanent ileostomy since he says my rectum is totally diseased. As you probably know, this would involve sewing up butt, taking out colon, rectum, anus and having permanent bag. No chance for reversal. Doctor is older, more experienced. I'm not as enamored with the hospital itself as I had an appendectomy there many years ago and my experience was not a pleasant one. But the surgeon is great!

2. Dr. Hodin (Mass General Hospital, MA) - Surgeon wants to take out colon and part of rectum and give me a bag. He says that if he goes in there during surgery and my rectum isn't that bad, he would only take out the diseased part and keep the rest of the rectum intact. He wouldn't sew up butt and I would have a bag of course. The difference is that if there is Crohn's cure (yeah, right!!!) within the next few years, I could potentially get it reversed. If however he goes in there and it's a mess, he'd do the permanent ileostomy. Mass General is a fabulous hospital and I have had better experiences there overall. I was not, however, as enamored by the doctor. I don't know why... it was just a gut feeling.

They are both highly regarded surgeons. I've have always been told I would have to have a permanent ileostomy so this second opinion was a bit surprising to me. Has anyone had to make a similar choice? What did you do? How do you make the right decision? I actually have a third opinion lined up at another hospital soon to make me even more thoroughly confused.

Any recommendations on how to make a decision, further questions to ask, how to figure out what to do, etc. would be much appreciated!!!
Debbie
Posted 8/21/2012 8:26 PM (GMT -5)
I know it's a lot to take in...and it's a BIG decision. Here's my abbreviated story:

Crohn's early dx was small bowel but over the years involved my rectum/colon including fistulas. Many sx and after a resection needed emergency ileo...lived with it for 3 months (loved life, btw) but had it reversed when colon healed. Unfortunately, all of my symptoms came back and reduced my life back to no life:( I made decision to have another ileo but my docs disagreed on permanent or temporary ileo. I went with my surgeon's suggestion of temporary because with Crohn's the likelihood of issues early on is high...I kept diseased colon and rectum and continued Imuran and Cipro.

Fast forward 8 years and the meds I was on stopped controlling my disease (still had rectum and colon) and in 2008 I had my proctocolectomy. I KNOW I made the right decision waiting to make sure it was the right thing for MY body...I didn't wait for a cure, I just wanted to make sure I wasn't causing other issues down the road.

When they took that sick part of my body I new I did the right thing. Most UC patients tell you they wake up feeling better...Mine didn't come for about 4 months but one day I just new things were better. We all have different outcomes to the same procedures, so what is right for one isn't for another, but you have to weigh the pros and cons. One of those would be whether or not you'd have to continue meds if you keep part of your rectum another would be the possibility of passing mucous the old fashioned way. It's normal, but is more frequent for some than others.

You are going to get some great info from this thread. Just make your lists and do what it right for you. I live a happy, productive and very active life now...something I am very thankful for. Good luck with your decision I hope this has helped a little.
Posted 8/21/2012 9:37 PM (GMT -5)
Debbie,

GOOD LUCK. Go for the third opinion, then also if you can, try an out of the area opinion. Are they even close to discovering cure for chrones? What are the complications of sewing the butt totally shut? Maybe there are issues that dr. Hodin was trying to spare you from. Get your office visit notes. sometimes docs express opinions in their notes that they do no fully express in person.

I know when I had my "pelvic floor restoration surgery" which turned into pelvic floor "desctruction" surgery (lost use of colon, rectum, and for 7 months small bowel) all that could be done for me was permanent ileostomy and massive lysis of adhesions was fine 4 years, then stoma stenosed, revision stoma desperately needed but there are issues with it.........................my 3 original surgical opinions ALL turned out to be wrong regarding the reading of a defecogram scan in the beginning. Yours is a more cut and dried issue as you have a disease. Mine was an anatomical misalignment of a bowel loop but, long story short I got wrong opinions from all 3 original consults, unknown to me at the time they were all wrong or of course I would not have acted on that original surgery that lead me into ostomy land.

So I would do as many consults as you can go on. THEN do what I did not do. Let the issue ride for just a bit if you can. The answer will come to you when you are NOT thinking about it. Just my experience and I was not dealing with disease. So different than yours. Your gut instinct will tell you what to do when you gather your info then at a time when you are not thinking about it. Good luck. Rosemary
Posted 8/22/2012 6:38 AM (GMT -5)
Debbie, this is probably making things more complicated, not less, but I had my surgery w/Dr. Sylla at MGH. She is fabulous, and she specializes in non-invasive surgery (lapro etc). So, if you wanted to be at MGH but wanted to try another surgeon, that's a possibility.

The good thing about being at a super major hospital like MGH is that they've seen all the complications. If anything very unusual happens at Newton Wellesley, they'll probably transfer you to one of the bigger teaching hospitals....

As for if they cure Crohns.... well, that was a question I asked myself, "What if they cure Crohn's in a year?" I thought, I'd be thrilled, but I'm done. My doctors tried, I tried, I live in the time I live in, and I'm just done trying things. I was grateful for the surgery I had and I remain that way. That's personal though and you might feel differently. Plus, it's been over a year, and they didn't cure Crohn's.....

And maybe at some point if you gather opinions you'll become clearer, not more confused..... there are a lot of options. You want to feel good about the surgeon, the hospital, the procedure, and the method.... (if possible...)
Posted 8/22/2012 7:21 AM (GMT -5)
I second everything blueglass said.  I don't know anything about the hospital you are mentioning in particular, but it is very important that you are in a big hospital for this type of surgery. 
Posted 8/22/2012 8:22 AM (GMT -5)
One other thing about option #2 -- if you're thinking about going that way, explore all the consequences -- talk to your gi about the risk of getting inflammation in your rectum after surgery (and if that happened, would you end up on the same drugs you've been on already?), find out about mucous and blood etc from your unused rectum, etc....just make sure you know everything about what you're getting into.

My surgeon really pushed me on making sure I was OK w/taking out my rectum/anus .... as I said, I just wanted to be done.... no risky j pouch, no waiting for future cures etc..... but that's just me.
Posted 8/22/2012 4:24 PM (GMT -5)
Personally, I would be more concerned about being confident in my doctor, not the hospital. Yes you can have a bad experience, but you said it was years ago. Unless its a hospital that only has equipment from 20 years ago, I wouldn't worry too much,lol.
As for the surgery, a Dr shouldn't leave any diseased part in, that can be taken out. Personally, I chose a bag, I didn't want to deal with it anymore.
If you are comfortable with a bag, that saves you the trouble later. If you are not, then try for the jpouch, just make sure they strip out the disease!
Posted 8/22/2012 4:37 PM (GMT -5)

I know nothing about either hospital, as well.  Hopefully your 3rd consult will confirm the way you are leaning towards.   Personally, I would be bothered about a "gut feeling" about the less enamored doctor.   The surgeon is the one with your life in his hands and you want total faith in the guy removing your parts and constructing your stoma.

I have Crohn's Colitis and opted for proctocolectomy and permanent ileostomy without even trying Remicade or Humira.   Like Blueglass, I was done, doNE, DONE and I only wanted one surgery !!!   The mere thought of any part of my diseased parts being left in there or seepage or anything whatsoever coming out of my bottom ever again was not an option for me.  Obviously, with Crohn's the j-pouch was never discussed, but I would have even passed it up.  In addition to the potential for butt burn and pouchitis, I would never be happy with still going to the bathroom the "old" way 4-6 times a day.   Just my personal preference. I am thrilled for those who have good luck and are happy with a j-pouch :-)

Cure for Crohn's?  Maybe someday, but I don't think I will see it.  I think all surgeons are trained to throw that out there--mine did.  I truly hope it happens, especially for the children, teens and younger people.  Mine did not rear it's ugly head until I was in my 50's, but it attacked with a vengeance.   If a cure happens in my lifetime, I will be thrilled for those who can be cured :-)

Posted 8/22/2012 4:39 PM (GMT -5)

summerstorm said...
Personally, I would be more concerned about being confident in my doctor, not the hospital. Yes you can have a bad experience, but you said it was years ago. Unless its a hospital that only has equipment from 20 years ago, I wouldn't worry too much,lol.
As for the surgery, a Dr shouldn't leave any diseased part in, that can be taken out. Personally, I chose a bag, I didn't want to deal with it anymore.
If you are comfortable with a bag, that saves you the trouble later. If you are not, then try for the jpouch, just make sure they strip out the disease!

 

 

Summerstorm, you and I must have been reading each others minds smilewinkgrin

 

Posted 8/22/2012 9:55 PM (GMT -5)
oh lord put your foil hat on then! My craziness might sink in!
Posted 8/22/2012 10:10 PM (GMT -5)
Go for the 3rd opinion...you may be worried about confusing yourself but you'll feel a lot better when you get as many opinions as you can out on the table, and it is totally worth it to have a doctor you feel VERY comfortable with. It will make it much easier to decide what to do and you'll feel so much better about your choice.

Ali
Posted 8/23/2012 8:25 AM (GMT -5)
     In my case it was the rectum that was BADLY diseased.  My colon, in all the twelve years I suffered with UP, didn't look bad at all.  As a matter of fact, all my colon had was minor diverticulosis.  However, when the rectum goes, so does the colon cry .

     My surgeon did a total colectomy with end ileostomy but did not sew the anus closed.  His opinion being there are more complications when this is done.  I did have a post surgical hematoma develop inside the anus which he drained in the office shocked and placed me on antibiotics.  Had I had the anus sewn closed, it would be a lot more complicated to do that procedure.  I healed nicely and didn't need a drainage bag or anything like that.  I still have the skin tags outside the anus and they are pesky once in awhile, but my doctor said to put either hemorroidal ointment on them or Calmoseptine, nothing inside the anus though.  Calmoseptine seems to work best.  I had them checked out (guess I am paranoid because my paternal grandmother died from cancer of the rectum) but doctor said they are NOT precancerous.  If they become too annoying I could have them removed but he said it would be very painful afterwards upon sitting.....I can believe that.   

Posted 8/24/2012 10:09 PM (GMT -5)
Wow, thank you for all your opinions. For some reason, I wasn't notified via email. Anyway, I think I am getting two more opinions and then will make the final one. Of course I have my mom with me who is all about the temp ileostomy option...doesn't understand it could cause more problems. In fact, I don't she even know where my colon is located : )

I am concerned about leaving a piece of my rectum in when most of it is so diseased; wouldnt it get diseased since the rest of my rectum is? Wouldnt it cause inflammation? Also, I would worry if they didn't sew up the butt... I don't want stuff coming out of two parts. A bag will be annoying enough itself. But then worrying about my butt too....

Christine1946: have you had any leakage from your butt if it wasn't sewn up?

Gosh, such gross questions we live with. I am also dealing with my six year old daughter who is all about looks. She is totally horrified about this surgery. Although she did ask if they could remove my freckles during the surgery, which was pretty funny.
Posted 8/24/2012 10:27 PM (GMT -5)

Personally, I would be very concerned about disease returning in the part of the rectum that is left because you [and I] have Crohn's Colitis and it can return.   Maybe resulting in another surgery or maintenance drugs [which I pray to never have to do].  And, I do believe that is the main reason we are normally not candidates for the j-pouch.

I explained further up about my desire to be completely DONE forever with anything coming out of my bottom ever again.

My 2 & a half year old granddaughter is totally fascinated with Maw Maw's "belly pouch".   I do not hide it from her and want her to grow up being accepting of it.   Your daughter will come around in time.

I am with her on the freckles issue.  Wish they would have removed mine smilewinkgrin     Barbie b@@bs would have also been nice to go along with the Barbie butt smilewinkgrin

Posted 8/25/2012 4:35 PM (GMT -5)
     Dietcoke, I don't have any leakage from the anus, but I do have a vaginal discharge from time to time and some bleeding from the vagina occasionally...not bad, but enough to wear a panty liner.  I had two transvaginal ultrasounds and Pap test done, all negative.

     A very weird thing happened to me the day I was discharged from the hospital.  It was a very bumpy ride home from Philly, some streets in Old City are still cobblestoned rolleyes .  When I got home, I felt like I had to pee and all this foul smelling gunk came out of me.  Don't know whether this stuff was lying inside the anus or what.  Afterwards, I started to bleed vaginally.  I notified my doctor, this was on a Friday afternoon. He said if I started to run a fever, have pain or anything like that to come right back in.  I didn't though.   I had my operation over two years ago.

Posted 8/25/2012 4:49 PM (GMT -5)
Here's my opinion as someone who has gone through too many surgeries to count - UC, 3 step jpouch, failed jpouch disconnected and diverting ileo, jpouch excision and all bottom junk removed, multiple bottom wound surgeries... I highly recommend that you go with a surgeon who has incredible talent and years and years of performing the exact surgery you are doing AND do that in a hospital where there are extremely talented and highly regarded doctors in other speciality areas should the need arise - such as urology, gynecology, infectious disease, etc. Also the nursing staff is better prepared to handle you post surgery in a large hospital that does these operations all the time.

Also I try to think of things in terms of "quality of life." Have you had enough, do you just want to get on with things, or are you truly adverse to a permanant ostomy? They won't do a jpouch if they have any suspicions that you have crohns. If you decide to go with leaving rectum/anus in be sure you understand what all the even minute little problems would be with that. Even the 1% failure of problems. Because "stuff" can happen. Would you be having daily leakage, would you be on potent UC/crohns drugs again?

Lastly, I wouldn't bank on anything with a "future cure"... well unless it was for a child. Live your life for today.
good luck with your decisionmaking.
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