Cleveland Clinic in Weston, FL

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Janiepain
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Date Joined Jan 2007
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   Posted 10/6/2009 5:38 AM (GMT -6)   
Has anyone been there, and if so, what did you think of it?  Any particular Dr. good?
 
Thanks,
 
Janie

tinkerbell2
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Date Joined Jun 2009
Total Posts : 418
   Posted 10/6/2009 7:01 AM (GMT -6)   
Hi Janie, I had thought of going there myself.. but the drive did deter me... I think it would be close to 4 hours away from me. So far I'm pretty happy with my doctor (who's residency was done at Cleveland Clinic). A while back ago, I bookmarked this page - which does list the Nations Top Doctors, with 29 of them ar Cleveland Clinic. There are at least a couple colon-rectal surgeons listed. my.clevelandclinic.org/florida/about/news/29_clinic_pysicians_ranked_among_nation_27_best.aspx
~Jenise~


suebear
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Date Joined Feb 2006
Total Posts : 5692
   Posted 10/6/2009 7:31 AM (GMT -6)   

There is a surgeon there, I think his last name begins with a "W" and he is supposed to be good.  You can also ask this question at www.j-pouch.org

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Janiepain
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   Posted 10/6/2009 8:05 AM (GMT -6)   
Jenise,
 
It's also about a 4 hour drive for me but I've heard excellent things about CC in Cleveland; I'm not sure about Weston, FL.
 
I think there is a Dr. Wexler who I read somewhere was very good.  I was just wondering if anyone had actually been there.  I did a google search and there were some utubes and posts that weren't real positive about the facility in general...but then everyone has a story!
 
Thanks for your replies!
 
Janie

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 10/6/2009 6:52 PM (GMT -6)   
Janie--Yes, I am pretty sure that is right. There are several people that have posted here that have used him. I cannot vouch for the FL facility, but I've had all but one of my surgeries at CC in Cleveland. I don't think it really matters what doc you have, they all have the knowledge, just bedside manners might be different.

You will ALWAYS hear the stories...sometimes people just don't match personality wise...and sometimes there are truths to what you hear. Go with your gut...if you meet the surgeon and you don't match, you don't have to continue. I've had two of the best CR Surgeons I could ask for and I haven't been complication free...but it is surgery and there are percentages. That being said, I am a HAPPY and HEALTHY person who is now living life!

You can also look up any doc through the state medical board and it should list if they've had any formal complaints...at least in OH I can:)

Good Luck smurf

taurus
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Date Joined Jul 2007
Total Posts : 65
   Posted 10/7/2009 6:53 AM (GMT -6)   
This is such a coincidence. I have an appointment at the Weston Cleveland Clinic for October the 28th!!!!!

I am not looking forward to the drive though. I live in Clearwater, Florida and google maps said it was going to be a 4 hour ride. Of course that's not counting traffic. My appointment is at 2:00 so I'm thinking of leaving here around 8am. Not to mention taking I75 and I saw the news where all those fatal auto accidents took place. So I am so nervous. I wanted to try the Mayo Clinic up in Jacksonville but they don't take Medicare!!! Can you all believe that? They only take private insurances which I don't have. I also was going to try University of South Florida. They have an excellent colo rectal surgery department. But my surgeons have already been consulting with them.

But when I told my surgeon here I was going to Cleveland Clinic she almost turned cartwheels. She told me I made the absolute right decision. They are doing things there that they aren't doing anywhere else. Plus she told me the surgeon I'm seeing, Dr. Eric Weiss, is the absolute BEST.

So I am nervous. But also excited. I'm just wondering what I'm going to do if I have to keep going back and fourth. It's a bit too much.

Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 10/7/2009 7:57 AM (GMT -6)   
Taurus,

What are you going to Cleveland clinic for? How did you get your appointment? I filled out a request slip online, but wonder if I should just call.

I live near Cocoa Beach, Florida and it's at least a 4 hour drive for me, I think. I haven't googled it yet though.

Good luck...did you ask for Dr. Weiss, or did you just get him?

Janie

taurus
Regular Member


Date Joined Jul 2007
Total Posts : 65
   Posted 10/7/2009 9:11 AM (GMT -6)   
I am going to CC because I am back to constipation. Even though I have a J Pouch/subtotal colectomy. For some reason, my J Pouch just won't empty the way it should. My surgeons here have tried everything and can't understand why this is happening. Plus, most J Pouchers have Crohn's or ulcerative colitis. I have neither. I was born with a condition called Hirschsprungs Disease. So my case is a bit more complicated. So I'm off to CC to try to get an explanation.

This is the number you call for an appointment: 954-659-5124 or 877-463-2010. I called the first number. They gave me Dr. Weiss automatically. I didn't ask for him. But my doctors were thrilled when I told them I was going to see him.

Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 10/7/2009 9:24 AM (GMT -6)   
Thank you. I had a total colectomy in March and I'm also having issues. My small intestine was attached to my rectum. My surgeon in Orlando just ticked me off so much last week that I want to go to CC for another opinion. I am scheduled for 2 more tests this month though, so I didn't want to go to CC until I see my surgeon to get the results of these tests. How long did you have to wait for an appointment? I thought it would probably take a little while...

How long ago was your surgery? Hopefully Dr. Weiss can help you!

Janie

tinkerbell2
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Date Joined Jun 2009
Total Posts : 418
   Posted 10/7/2009 12:23 PM (GMT -6)   
Janie, I have a question to ask taurus too - and hope you don't mind my jumping in (her email was not listed).

Taurus, I'm in your FL area.. and you mentioned "I also was going to try University of South Florida. They have an excellent colo rectal surgery department." why did you not go there?
~Jenise~


taurus
Regular Member


Date Joined Jul 2007
Total Posts : 65
   Posted 10/7/2009 12:38 PM (GMT -6)   
Tinkerbell, I didn't go to USF because both my surgeons have been consulting with them for a long time. They already know my case and haven't had any extra suggestions so I'll go to CC for the consultation. Both my doctors said it was a very good idea because maybe they have more experience with adult Hirschsprungs patients like me.

Janie, my surgery was about a year and a half ago. Got the colectomy first, had complications and on the day I was supposed to go home, I had to have an emergency ileostomy. Got the ileostomy reversed 4 months later. Everything was AMAZING the first 6 or 7 months after. Then it all came to a dead stop. Even with physical therapy, laxatives, etc...so yeah, hopefully this Dr. Weiss can help me out. I'm thinking it may be this one inch of colon my surgeon decided to leave in to make my pouch. But my docs aren't too sure about that theory.

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 10/7/2009 4:58 PM (GMT -6)   
I saw Dr. Wexner at Cleveland Clinic in Weston, Florida.  He gave me an open total colectomy for my colonic inertia in August 2007.  I live in northern Florida and Weston was about 8 hours away still, but Dr. Wexner and the Cleveland Clinic are well worth it.  They were phenomonal and I received the very best of care there.
 
My colectomy worked well until this spring and again I became constipated.  Cleveland Clinic advised my general surgeon that I needed an ileostomy.  I had surgery the end of May, but my bowel movements did not return.  I was very sick and had to have emergency surgery again in June.  Currently, I have a non-traditional ileostomy.  I have a tube going from my abdomen to a leg bag.  I see my surgeon again on October 26th and we are going to discuss what's next.  I have to have another surgery to try for an ileostomy, again.
 
I have been very sick with these past two surgeries.  I was in the hospital for 52 days and was extremely nauseous the entire time.  I was sent home the middle of July and had a feeding tube until the beginning of September when I could finally eat food on my own, again.  I just went back to work on September 21 and have been working part-time.  My stamina is not what it should be and I get tired very quickly.  I have been working 7-11am and by the time I get home at 11:20, I'm in my pj's and back to bed.
 
My surgeon is going to consult with Cleveland Clinic for my next surgery and I may go back to Cleveland Clinic for the surgery.  My insurance area does not include Cleveland Clinic, so my health insurance gives me a difficult time for referrals, but they eventually cave in for me.
 
butterfly

Amey
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Date Joined Jul 2006
Total Posts : 942
   Posted 10/7/2009 9:57 PM (GMT -6)   
Taurus -

I see Dr. Jorge Marcet at USF. He is a world-known colo-rectal surgeon. He has been an amazing resource and I feel humbled to have him as my surgeon. If you need a trustworthy opinion, call the USF Physcians Group in Tampa, Fl.

As far as the Cleveland Clinc, I have been cooresponding with their nurse, Angela, for a couple months. Now that Dr. Marcet has reversed my Ileostomy on 9/29/2009, I want to see if the CC can help me with my motility problems. You are correct, the drive is not pleasant, but we Floridans are fortunate to have such a facility in our state. The drive is not that bad...just get a book on CD and listen while you travel.

Take care,
Amey
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/8/2009 6:59 AM (GMT -6)   
Butterfly,

I am so sorry you've had such horrible problems. I don't know if you remember or not, but about a year ago we spoke on the phone and you were still doing well. I later read you were having trouble again and were going back to CC, but I didn't realize you still weren't doing well. What did the Dr. determine was your problem? Was it your small intestine not working or was it your rectum?

It's a horrible feeling to be nauseous...thank goodness that hasn't been an issue for me, although my surgeon said it was a possiblity after surgery. I'm not sure why that is, but several people seem to have it. I sure hope it goes away and that your upcoming surgery is a success.

Amy, where in Florida do you live? I'm about an hour east of Orlando.

It sounds like your recovery is hard, but hopefully over time it will get easier. After 6 months I still have the sore bottom most of the time; either from loose stools from prune juice or just so sore from straining. I keep calmoseptine with me at all times!

Hi to everyone else, will let you know about my sitz marker test soon. Hopefully the tech. will tell me today if there are any markers left.

Janie

Amey
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Date Joined Jul 2006
Total Posts : 942
   Posted 10/8/2009 9:01 AM (GMT -6)   
Janie -

I am about an hour east of Orlando. I live in a suburb just outside of Tampa.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/8/2009 3:44 PM (GMT -6)   
Amey,

I just did a triple take when I saw your name! How have you been?

Welcome back!!

:-) Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/9/2009 2:52 PM (GMT -6)   
Cecilia -

I just had a reversal. You can read some updates under the Total Colectomy Part 26 thread. My recovery is ummmm.....a recovery. Everything hurts and most symptoms are normal. I left this forum because I just couldn't face talking about my bag anymore or my frustrations. Thinking about my bag was depressing. Not because having a bag bothered me; I didn't mind having it much at all. The problem was the difficulty having BMs in the bag. Long story short, my surgeon just reversed the surgery. I think of you and Peggy often. I hung my head in shame for a while because I left this forum without any notice to anyone. I hope you forgive me.

Best Wishes,
Amey
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 10/10/2009 4:12 PM (GMT -6)   
Hi. I loved CC in Weston. I actually had my surgeries there and have all my doctors there now, easier to followup since my surgeries.

I have Dr. Weiss. He is AWESOME. Honestly, he's one of those surgeons who doesn't BS you ... tells you as is. He did both of my surgeries and I can't imagine anyone else doing them.
He's now become a good friend, he works a lot but always answers emails and phone calls if I have ANY issues.

I had my first surgery April 3rd and then reversal June 7th. I'm recovered but now adjusting .. can take up to a year. Before my surgery I never imagined being able to run around with my unborn child ... now, when she arrives in less than a week ... I can run, jump, swim and skate through life with her :)

If you have any questions or need a referral just pm me and I'll be MORE than happy :)

goodluck!

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/10/2009 4:45 PM (GMT -6)   
UCFree,

thanks so much! I actually had a total colectomy for colon inertia 6 months ago and I'm still having problems "going". My surgeon in Orlando doesn't seem that interested in my issues, although he did schedule me for 2 follow up tests. I see him for results on the 29th, and if this visit goes like our last visit did, I will definitely go to CC. I actually filled out an online appt. request and got an appt. with Dr. Weiss for next week. I cancelled, because I wasn't ready to go yet, and I thought it might take a couple months for an appt.

It sounds like he's a great Dr. If it turns out that I'm going to see him, I'll definitely pm you to get your name so I can tell him you said hi!!

Thanks,

Janie

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 10/11/2009 4:49 AM (GMT -6)   
Another shout out for Dr. Weiss at CC in Weston. He has done my 2 surgeries ( i have one more to go) and done a great job. HE has    great team of fellows and his nurses are awesome. The hospital is really nice when it comes to hospitals, that is...
 
I wish you the best.
 
 
Hey UCfree- you sound great! Congrats on baby arriving soon... You recovered just in time...
Jackie, 43
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- TBA


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/11/2009 8:14 AM (GMT -6)   
Amey,
I'm so sorry to hear that you were having difficulties! (((big hug))) For some reason, I thought you were doing well, had gone back to work, and were just too busy to stop by anymore, which happens a lot around here.

I'm just really glad you're back and am praying that your reversal is a huge success! :-)

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/11/2009 6:19 PM (GMT -6)   
Butterfly, what is a non traditional ileostomy? Why didn't the regular ileostomy work? I thought the ileostomy's had to work. I just assumed the bowel movements moved through the stoma and couldn't be stopped. My husband mentioned me getting a tube into my stomach so that I could release gas and poop. I didn't think they actually did that. I am still with my faulty colon due to having an outlet problem....2 doctors have now guaranteed me that I would have bowel movements with a total colectomy. But I am still worried about the outlet problem. My rectum works great to held gas and poop in, but my rectum does not work when I push down to release poop and gas. It is like my push does not work anymore. I also have colonic inertia. Tracy

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 10/15/2009 2:43 PM (GMT -6)   
Ileostomy's don't always work.  My surgeon did surgery and gave me an ileostomy, but 12 days later I still didn't have any bowel movements.  I was very nauseous and couldn't eat.  I had a nasogastric tube and was later fed by tpn feeding.  I had a stoma with my ileostomy and bag.  Because of my constipation, after my ileostomy, I had emergency surgery.  My surgeon closed up my stoma.  My small intestines were very inflamed, so my doctor gave me 3 drainage tubes, a feeding tube, and a tube in my abdomen that leads to a leg bag that is velcroed around my leg (non-traditional ileostomy).  I see my surgeon on Oct. 26th and we're going to discuss when I can have this reversed and have a traditional ileostomy.  The problem with my leg bag is that the tubing is very small and about as big as my little finger.  It is very easy to have obstructions and my diet is extrememly limited.  A traditional stoma is much bigger and much more difficult to get an obstruction with.
 
I had the same problem with my rectum and colonic inertia, too.  I had botox injections prior to my total colectomy surgery.  My total colectomy worked for almost 2 years before I started having motility issues again.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/15/2009 7:30 PM (GMT -6)   
I had botox and it didn't work...I am going to try biofeedback, but I am not holding my breath. I am debating having a total colectomy and getting a temporary ileostomy, or having a temporary ileostomy and just keeping the colon. I am hoping I just love the ileostomy and want to keep it for life because the life that I lead now is ruled by hours and hours trying to have a bowel movement. No, I have never had a blockage, but, my bm's are getting less and less and this worries me. I am obsessed with having bm's because I am terrified of getting a life threatening blockage. I have resorted to taking one dose of miralax per day and this produces the smallest amount of stool, about a teaspoon per day...then over the weekend I take about a helf a bottle of miralax and this definately produces watery stool, but it takes hours and basically my entire weekend to get a normal amount out. I also have to be careful of taking too much miralax because it will just bypass the poop and come out as water.........you ever heard of such a thing?

I had a small bowel follow through and it was normal......defecogram was abnormal and I could not expel most of the barium paste...ct scan was normal.....colonoscopy was normal except for 2 polyps....anal manometry was abnormal, but did not indicate hirsprungs...and transit marker test on day 5 indicated extremely slow motility, 15 markers were in ascending colon and 10 were in the transverse colon.

Thank you for posting back. I hope you can get the traditional ileostomy and be able to eat again. I wonder why you could poop for 2 years and then suddenly stopped? What heppened? What do they think happened to make your small bowel swell so much?

Tracy

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 10/16/2009 7:28 AM (GMT -6)   

If you have an ileostomy, the surgeon removes your large intestine (colon).  If you have a colostomy, the surgeon leaves your large intestine (colon) in.

I'm unsure of why my colectomy quit working.  It's not a guarantee, so I'm glad that I had 2 good years.  Colonic inertia is a very touchy thing.  My small intestine was really inflamed from the original ileostomy surgery that was 2 weeks prior to my emergency surgery.

butterfly

 

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