Surgeon Question

[johnd]

Hellow fellow crohnies,
First time post, I was diagnosed 2 years ago and have been on Immuran and sometimes entecort. In Feb this year I developed a fistula and my gastro doc suggested I look at surgery or humira/remicade as he felt the immuran wasn't being effective. I decided to try Humira and have been on it for approx 8 weeks now. A recent CT scan showed even more inflammation and of course my flare has gotten worse so my Doc suggested its surgery time. I live in Western NC near Asheville and the local surgeons have done resections but are more general surgeons.

I have located a Colo/Rectal surgeon (Dr Greg Waters) in Winston Salem who has some good reviews and of course he specializes in this stuff. The problem is I cant get an appt to see him till July 2, they are trying to fit me in but it doesnt sound to likely.

So at long last the questions:

Am I being reasonable wanting to get a specialist surgeon instead of a general one ? Some days my flare bothers me so much I would rather risk the local surgeons since they could do it sooner.

Anyone have any experience with Dr Waters ? What about surgeons in Charlotte ?

Thanks for listening...

John

 

[dreamintwilight]

Welcome, John!

That is a tough call. I can understand why you would want a specialist surgeon to deal with your surgery. I would probably want the same thing or peace of mind at the very least!

I cannot advise you whether you should go ahead with a general surgeon or not. If it were me, I think I'd hold out for as long as possible to have the specialist, but I know that is not always possible with people who's Crohn's decides to take a turn for the worse unexpectedly.

I know there are people on this forum that have had no choice but to wait long periods of time, so it is doable (definitely not ideal). You never do know when a sooner slot could pop up with your specialist. Is there something your doc could prescribe you to get you through the flares in the meantime? Bentyl, Entocort, etc.?

You could also could set up a consultation appointment with one of the general surgeons to get a feel for them. That way if you cannot wait for your specialist, you know you have a surgeon you would feel comfortable with if you had to get surgery sooner. You could be surprised and feel really confident with their abilities as well!

Good luck with your decision. You'll find lots of support here and maybe someone in your area might be able to give you some recommendations

 

[HospitalPatient]

May 27, 2010

John:

As someone who has had Crohn’s Disease for 25 years, been hospitalized 100+ times and had approximately 15 major surgeries – and I even wrote a Book about my experiences – PLEASE try and find a SPECIALIST Surgeon who specializes in Crohn’s Disease. I am a New Yorker who moved out to Los Angeles 5 years ago and even in an emergent situation out here in LA – I eventually flew back to NY to have my normal Crohn’s Surgeon operate on me.

I am unfamiliar with the docs in your part of the country but it is a basic numbers game – that is – the more patients they see/operate on – the more they learn – and the more you will benefit from their knowledge and experience. No disrespect to your local doctors or surgeons but Crohn’s Disease is such an individualized illness that I wonder if you haven’t yet exhausted the Medication Cures? I read: “you decided to try Humira” – was that on your doc’s recommendation? (I say that because while Humira worked GREAT for me for several months - it eventually caused inflammation in my lungs and gave me Asthma-like symptoms and I had to discontinue it and now I take Cimzia.)

There are just SO many GREAT drugs being invented that if I were you I would find a second opinion from another gastroenterologist and explain your reluctance to have surgery. Simultaneously, and if you can afford to do it financially and time-wise, I would look into surgeons in larger cities near you since they most likely have Colon/Rectal Surgeons more familiar with the kind of surgery you need. PLEASE do not use Local GENERAL Surgeons just because they are more convenient - you will regret it.

Good luck.

 

[CDDad]

Hi John,
Personally, I would go for the colorectal surgeon. They operate on colons and small bowel every day vs a general surgeon who might do it once in a while.
If you look at a drawing of the blood supply and fascia on the bowels, it is complicated stuff.
Anyway, in the NYC area, the Mt Sinai surgeons I have used (2 so far) got me in right away. I'm not sure why you have such a long wait. Does that mean that surgeon is super busy, or just in limited practice?

 

[acg101]

Hi John and welcome to the forum. I agree 100% with Michael and Joe above.
I just had my total proctocolectomy surgery at mount Sinai in NYC and all is well (actually great!). As far as the surgery team, I did 7 months research to find the 'RIGHT' colo rectal surgeon. I was in a full blown flare up with 128 SED rate but my GI did his magic to keep me going until A. I got TWO other opinions. My surgery team consisted of two surgeons, both with over 30 years experience in such surgeries. The primary surgeon has performed over 1700 Laparoscopic Proctocolectomy surgeries (over 5000 'other') with the lowest morbidity in the hospital. I cant stress enough how important is to pick the right surgeon.
Please don't hesitate to reach out and ask any question.

 

[johnd]

Hi Dan,

Thanks for the input.

I actually was able to get a surgery date but then an infection bumped that up and I had a sm bowel resection on June 23rd. Unfortunately the anastamosis had a small leak and I went back in 7 days later for a temp illeostomy. I'm now scheduled for a takedown in November.

I'm still pleased with my choice of surgeon despite the leak. Dr Greg Waters at Wake Forest Baptist medical center did both surgeries and I would highly recommend him. He's a very down to earth Doc who answers all your questions and was quick to take responsibility for the leak.

I guess we are both learning about this whole ostomy appliance business.

When the Ostomy nurse came into my room after the emergency surgery and said I was getting Ostomy Appliances I was thinking wow a new clothes washer and dryer but dang it was just a box of Hollister New Image bags

Good luck on your recovery.

 

[acg101]

Thanks John - I had a a problem with my surgery as the recto surgeon nicked my urethra (urinary tube below the prostate) and I had to wear a Foley catheter for over a month. But, I am so happy with my decision to have the surgery and almost fully recovered. I have no more CD pain, no more meds, no more running 20 times (and sometimes not making it ... hahahaha) to the bathroom. I exercise regularly, I eat foods that I could not for over 15 years and my energy is increasing every day.
Good luck with your ordeal and please keep us posted.

 

[dustydshook]

John back in march of this year I had a platic surgeon remove some skin cancer from my back and the scars are horrible. I had illeocecal resection in may and I have the prettiest scar I ever saw from him even though it had to be reopened twice due to infection. So I guess it really just depends on the surgeon. Go with the one with the highest reviews.