I've had trouble with the general operators before too.

If Dr Hull doesn't do the type of surgery you need, then you should see someone else.

Dr. Remzi will be doing my jpouch (I've had some intervening problems between steps 1 and 2). I don't know which other surgeons do jpouches, but there definitely are some. I got my appointment by being referred by my (non-CC) GI.

Here's the direct line to scheduling for colo-rectal. http://my.clevelandclinic.org/...surgery/default.aspx

Thank you ActiveUC'r for your reply. I will check into Dr Remzi. What type of complications are you having-if you don't mind me asking. Did Dr Remzi do your 1st step?

Dr. Remzi did my first step.

8 months after my colectomy/end ileo, my end ileo got "pinched" and the blood supply was cut off. I was life flighted to Cleveland (I live 3.5 hours away) and they re-did my ileo the next day. They were discussing release when I went horribly bad - I was acting like I had a blockage. They took me into surgery and found out a middle part of my small intestines when ischemic. My stomach was so swollen they left me open and intubated for 8 days. They wanted to give my intestines a chance to heal, but unfortunately on the third emergency surgery (fourth surgery in two weeks) my small intestines fell apart in their hands. They resectioned that bad part and put in a loop ileo above that bad section (so now I have two ostomies, one non-functioning). I was in ICU for 22 days and at CC for 9 weeks. Dr. Ashburn did those emergency surgeries. She literally saved my life. She's excellent and from what I'm reading,a young rising star but I don't know if she does jpouches.

They aren't sure what happened. I supposedly had UC and I never showed small intestinal involvement before.

I'm so sorry . You've really been through it. I hope you're doing better and on the mends. I will do some googling on Dr Ashburn. Do you know if there is a test that can detect crohns or UC? I really appreciate your input.
Susan

There is something called the "Prometheus" test that detects certain blood markers that are more common in Crohns vs. UC. However, sometimes a positive for Crohn's still means you have UC or a negative for Crohns still means you have Crohns. Many doctors don't like the test, that includes my local GI and those at CC.

Instead, the doctors look at the other tests. There are characteristics of colon inflammation that indicate UC vs. Crohns. Also, a barium test (swallow fluid and get x-rayed to see your small intestines) or a capsule endoscopy (swallow a little tiny camera pill that videos your small intestines) can be used to look at the small intestines.

And wow - you made it to 59/60 Remicade infusions!

I am actually typing this from my hospital bed at the Cleveland Clinic. I had my takedown on Wednesday and just waiting for the bowels to turn on before they will let me go home. My surgeon is Luca Stocchi. He did all 3 steps of my J Pouch journey. I highly recommend him, so far everything he has told me has come to fruition. You can google him and all kinds of information about his credentials is on line.

Mike H

remzi pretty much only does "problem" cases now. There are stochhi, asburn, dietz, and so many others. I am a remzi patient because I am a "problem child". However Stochhi and dietz have both taken care of me in the hospital post-op on different occasions. I would trust either with my health care. However, I didn't get the warm and fuzzies from stocchi that I do from remzi. But Remzi has done so much for me. I absolutely LOVE that man.

Regardless what matters for you is surgical skill. And I would venture to say any colorectal surgeon at CC that CC deems can do a jpouch surgery is probably pretty darn good at it.

best and fastest way to get in for a consult is to have your local doctor - whether its GI, surgeon, or even PCP.. make the connection at CC. It will be easier than you "cold calling" in.

ps.my hubby has nicknames for all the docs. He calls Stochii the "italian stallion"!
and mike.. good luck on getting out of there soon and your full recovery.

ActiveUCer, my GI must not like that test either since she's never ordered it for me. I hope you are doing better.

Mike H, thank you for your reply. I will check out Dr Stocchi since I am still waiting to hear from Dr Hull's nurse. I appreciate your input and hope all continues to go well for you.
Susan

Liz11, thank you for your reply, I appreciate your info and and will check out the Drs you have suggested. I am hearing a lot of positives in the Italian Stallion.
I will have my Dr call for me since I'm not having much luck on my own. Take care.
Susan

Dr. Hull DOES handle UC patients. She did my j-pouch and did a fantastic job. No problems with continence, pouchitis or really any major problems. She was wonderful!

I second Disneynut: Dr. Hull did not do my jpouch, but she's been working with me on my fistula/seton, and has given me other surgical options such as removal, redo, now does my scopes, scripts, etc. She is pretty great!

Dr. Strong at CC did all three of my surgeries. Excellent surgeon and his bedside manner is phenomenal! I was up there for a few tests a couple of months ago, and while he was not treating me, he stopped in my room to say hello and let catch up with me. You really can't go wrong with any of CC surgeons

Oh goodness, I just realized today that I have also been treated by Dr. Hull. When I was in the hospital, she filled in Dr. Remzi who was filling in for Dr. Ashburn when I was in the hospital (I was there for awhile).

I liked her get it done attitude.

You all don't know how much I appreciate all the replies. I am calling my Dr in the morning to see if he will refer me. My first choice is still Dr Hull. But after reading all of the replies I have a couple of Drs I feel pretty confident in.
Thank you,
Susan

Subrew--I see you are in Indianapolis. I'm in Carmel. I'm so glad you are going to the CC and not going with anyone locally. I looked and determined that I wasn't going to let anyone in Indiana touch my colon, especially with the CC so close by.

If you need anything, just let me know. I hope you get in to see Dr. Hull. She does have a get it done attitude. She was so easy to talk to and even helped me with my migraines last visit . Good luck!

Disneynut-we are almost neighbors! I live east of Indy. I feel the same way about having my surgery locally. My cousin had his done here and it wasn't successful and after the negativity I got from my GI confirmed me to look into CC. I'm talking to my family Dr today to ask him to refer me. He wanted me to have surgery years ago so it shouldn't be a problem. Just not feeling it with my GI these days.
Wish me luck!!
Susan

Just so you know, I didn't have a referral. My GI didn't want me to have the surgery so I just called the CC and said I wanted a surgical consult. See if you can talk to someone else and get in to see Dr. Hull.

I have my appointment scheduled for a surgery consult with Dr Hull on Oct 2 at 8 am. Wish me luck and will keep you posted.

Good luck! Take a small, digital recorder along and ask if you can record your consult - she'll say sure. Have a list of questions ready. Take along a history of your medications, as well as copies of any pertinent medical records, such as biopsies, scope reports, etc. Let us know how it goes!

Yay! I'm so glad you are going!