Cleveland Clinic...looking for advice/reccomendations

[mharvey90]

Hey everyone.....life has been hectic lately running around from appointment to appointment, moving into a new apartment, and preparing to start school again, all while dealing with a picc line in my arm and a jp drain in my abdomen.

some of you may or may not remember the posts i had posted the past couple of months about the hell i went through after my second small bowel resection which developed a leak and formed an abscess. the abscess cavity itself has since healed, but the leak is still there and the jp continues to drain fluid.

now i've been like this going on 3 months now...and i've about reached my wits end (more than once.) especially being 20 years old starting junior year of college, i'm not sure how much longer i can physically, mentally, and emotionally deal with receiving 16hrs worth of tpn through a picc, eating a low-residue diet, and having a drain of abdominal fluid constantly connected to me...my surgeon as well as a second opinion opt not to re-operate to try fix the leak...they think it is too risky and would rather have me wait several more months for it to heal on its own...:yrolleyes:

so i was encouraged by my surgeon, 2nd opinion surgeon, and infectious disease specialist to go to the cleveland clinic, of course rated #2 hospital in the country for treating IBD. so, i plan to make my appt soon. i'm hoping to hear a surgeon there say that it is definitely in my best interest to wait longer before getting surgery...or would i would really like to hear, is somebody say with confidence that they think they could re-operate successfully and that it would be worth it to do the surgery. of course i don't WANT surgery...but at this point i am so fed up with the way life has been the past few months...:depressed:

so one of my doctors reccomended Dr. Scott Strong at the Cleveland Clinic. My question to all of you is, have you been to the Cleveland Clinic? What was your reason for going? What was your experience like/what did you have done? and most importantly....Who was your doctor?

thanks so much in advance to all of you for your replies, they are so very much appreciated. i am so sorry i have not been able to get online often enough to reply to many of your posts.... but hopefully soon i'll get back in the swing of things!

 

[JMitch]

I have been to the Cleveland Clinic and saw three GI's. The first, my initial appointment, only dealt with upper GI issues. Unless you specifically say you need to be seen for IBD rather than a GI in general when making your appointment, you may not have the best of luck in getting the correct doctor. Unfortunately, I had to come back (wasn't too happy when I drove 2 hours). There are a lot of doctors in the ward up there and they want to do everything themselves, even if you had a colonoscopy a month prior. I did find, however, the GI's specialize in one area and that is it. For example, I had to see a GI while I was trying to find a diagnosis for my gut and another GI for esophagitis. The same with the scope, one doctor for the colonoscopy, and another came in to do the upper. I think that is a bonus and they are able to focus on conditions in that area instead of the whole GI tract. They also do not believe in the Prometheus study. I have not had any bad experiences with any GI's there except for them not finding anything in the 4-5 months I was frequently visiting them. The only downfall is the appointment time. It usually took me about 3 months to get in for an appointment. I would recommend having a followup appointment already scheduled before your appointment in the event you need one instead of waiting forever, especially if you are actively flaring. It's always easier to cancel. If you need one asap, always call late in the day. Sometimes they can get you one in the morning of the following day, but it really doesn't work for folks who live far away.

I keep getting notices that the doctors I seen have left. Sorry, can't help with that one.

 

[kello82]

the summer after i graduated hs i went out there for a....38473098th opinion as well. was having bad abcess/fistula activity in my butt and was hoping surgeons out there would have a novel idea.

anyways, the surgeon i saw was a Dr. Remzi. he deff seemed to know his sh*t, he basically gave me 3 options all of them involving an ostomy. so at that point, i was still against that and never went back there but as far as skill and knowledge? i think hes pretty damn good.

only saw him that once though....so dunno if i can really judge him on one meeting....but maybe he can help you. somehow....ugh.

 

[mharvey90]

thanks kello...how long did it take you to get an appointment?

 

[Regular Joe]

Hi mharvey,

I'm very familiar with the Cleveland Clinic - many different branches including GI. I lucked out and wound up with their top GI, but there is a 3-month wait to see him. I can give you a couple other GI names that are very good doctors familiar with IBD, and I've had experience with them. It might be easier to arrange a visit sooner than 3 months. JMitch is right - you need to be specific with the GI's, because they do have differernt areas of expertise. Let me know by PM if you want their names.

Also, I have a file saved of maybe a half-dozen colorectal surgeons at the clinic who specialize IBD and also are skilled in colorectal Minimally Invasive Surgery techniques if you'd like a copy.

Joe

 

[ameslouise]

I don't have any advice for you on Cleveland Clinic, but I just wanted to say good luck. Sounds like things have been rough and I hope you start to feel better soon.'

- Amy