Surgery for Colonic Inertia - Cleveland Clinic, Ohio?

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KAP
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Date Joined Jun 2006
Total Posts : 78
   Posted 10/22/2008 1:11 PM (GMT -6)   
I have heard that the Cleveland Clinic is one of the best places for surgery for those of us who have Colonic Inertia. Have any of you had your surgery at the Cleveland Clinic in Ohio?  I've heard good things about the Florida location but that is too far for me. Cleveland is still not close, but closer than Florida. Just trying to decide where to go from here. I've not been too impressed with the doctors around where I live.
 
Thanks in advance! :-)

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 10/22/2008 1:18 PM (GMT -6)   

HI KAP

I had colectomy with ileo rectal anastamosis at the Cleveland ClinicinOhio in 6/2006.  Dr Geisler was my surgeon.  I can't praise the place enough. I was treatedextremely well.The surgeon was fantastic and the nursing staff was extremely attentive and compassionate.  We traveledall the way from New York to have the surgery done there.  I was in hospital for 5 days and then stayed at the Cleveland Clinic hotel across the street and then 3 days laterwe were back in the car motoring home.  I have had questions for Dr Geilser and I just e-mailed him and he responded in short order....Can't say enough about the care I got there.

Phyllis

 

KAP
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Date Joined Jun 2006
Total Posts : 78
   Posted 10/22/2008 2:13 PM (GMT -6)   
Phyllis,

Thanks SO MUCH for such encouraging information!! I'm so glad you made the decision to travel to Cleveland and that you had a good experience there. Seems I've heard too many horror stories about local surgeons/hospitals, including my dear friend who had the surgery here whose doctor provides absolutely NO aftercare or compassion - and the nurses treated her terribly during her recuperating, which just broke my heart. That's wonderful that they have a hotel across the street from the hospital - I had wondered where my husband would stay if I go there. That's really amazing that your doctor emails you when you have questions! I'm impressed with what I've heard from your post - thank you so much! I'm still considering my options, but this may very well be the place/doctor I choose. Thanks for encouraging a confused lady today! :-)

Phyllis B
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Date Joined Feb 2006
Total Posts : 196
   Posted 10/22/2008 3:14 PM (GMT -6)   
Anytime you have any questions or what to share thoughts, you can e-mail me at berkowitzsmithp@aol.com and mark the subject colectomy. Usually I watch the total colectomy site here....there is a wealth of info there...we are up to part 19...
Take care and good luck.....

Phyllis

KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 10/22/2008 4:24 PM (GMT -6)   
Thanks so much for that, Phyllis. I may contact you if I need more information.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3069
   Posted 10/23/2008 10:59 AM (GMT -6)   

KAP-I have been treated at CC for the last 11 years, and wouldn't go anywhere else.  I've had two surgeons there (one had a career advancement with CC) and although I miss him, my new surgeon is just as wonderful.  My suggestion (after many surgeries for Crohn's) after surgery is to ask for a room on either H50 or M50...if you are lucky enough for M50, you'll have a PRIVATE ROOM!!!  If the floors are full, you may be put somewhere else, but make your stand and get to one of those floors yeah

Good luck with your decision and ask away if you have any other questions!


draegs
Regular Member


Date Joined Jun 2008
Total Posts : 31
   Posted 10/23/2008 6:16 PM (GMT -6)   
I'm fortunate enough to live 30 minutes from the Cleveland Clinic and just had a total colectomy/ileostomy surgery there for ulcerative colitis 5 weeks ago. My surgeon, Dr. Remzi, did an excellent job and has been wonderful in his follow-up care. I had a complication come up after the surgery (nothing to do with his quality of work!) and he got me into his office the same day I called. As for the nursing staff, you'd most likely end up in H50 or M50 where they are all trained in colorectal surgery care. These nurses & nurses aides deal with people who have had colorectal surgery every day and are very knowledgeable on how to make your stay as pleasant as possible.

It may require you traveling to have the surgery in Cleveland, but if you live close enough to even consider I would strongly urge you to go to there.

Feel free to email me as well at jamesdraeger @ gmail.com if you have any questions.
James
26-year-old diagnosed with UC in 2004
Underwent stage one of J-Pouch surgery on September 16, 2008
Now living symptom-free


peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 10/24/2008 3:39 PM (GMT -6)   
I also had surgery at CC when I lived in Ohio many years ago, last surgery was back in 1984. They are so knowledgeable and have treated a lot of patients with colorectal issues. You have to take that into consideration, even if it means traveling a distance for you. Quality and Quanity..

Best of luck to you. Btw, my surgeon was Dr. Victor Fazio and he was outstanding! Loved his Aussie accent too. Very caring when I saw him.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 10/24/2008 3:52 PM (GMT -6)   
Thanks to all of you who replied! I feel almost certain that I will go there whenever I decide to have the surgery. Would they have me have all the tests done again through the Cleveland Clinic (sitz marker, anal manometry, defecography, etc...) or would they likely just look at the tests I've already have done (which are all pretty recent)?

And do you have to travel first to see the doctor and then go home and come back for the surgery? Or can it all be done in one trip?

Thanks for giving me your contact info as well, in case I have more questions, which I'm sure I will have!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/24/2008 8:08 PM (GMT -6)   
It's been a long time ago for me, but I would venture to say that CC would run all of their own tests or at least any of them that they question the results in any manner. I would definitely not question any of their pre-testing prior to surgery. They have done surgery on me - emergency - without all of the tests; and I have had surgery when they have run all of them. I will have to admit that I was scared to death, but take into consideration that I was only 17 yrs. old for the first one and way too underinformed! But I would go back there vs. anywhere else since they saved my life more than once!!! Best of Luck to you and be sure to research all of your options so that you can make the best decision you possibly can with the information you have. That way you will never question yourself after the fact.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 10/25/2008 7:37 AM (GMT -6)   

Hi KAP,

I brought all my x-rays with me and that was good enough for them.  The only thing that CC had to do was the defography as it was not available where I live.  I had to make 2 trips out.  One to meet the doctor, review the options, the explanations and what to expect.  Then I returned to have the surgery.  On the first visit, even though Dr Geisler was running late, He spent over an hour with my husband and I explaining and answering all questions.

I don't know where you live but if you have to fly, check with the airlines, some like US airline provide for medical discounts. You would have to provide them with your patient number from CC and they call there to verify that you have an appt.  When my husband had surgery at CC for bilateral kidney cancer, that's what they did for us...and it greatly reduced our out of pocket expenses as we had to make 5 trips out there from New York. 

There are several hotels on campus...a little pricey but we found the cleveland clinic guest house to be nice.

They can assign you someone who will coordinate your appointments, hotels and travel if you should need.

This is big surgery and you really need to go where this is a matter of routine as they do so many.  And heaven forbid there is a problem, they know how to take care of it and jump on it right away.
 
Hope this helps....
Any other questions, lt us know....
 
PS You must be referred to Cleveland Clinic.  I am sure your PCP or GI would do that for you...
 
Phyllis

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3069
   Posted 10/26/2008 4:21 PM (GMT -6)   
I think the referal is based on your insurance requirements...I don't need anyone to refer me to a doctor there, I just pick one and make the appointment. Have you gone on to their website? you can view the doctor's specialties and interests before you call to make an appointment...there are pictures, too, which helps take some of the unknown out of the appointment. Also, if you are close enough to drive and have a flexible schedule, you can usually get an appointment for the same week (just ask if anything is available), since sometimes appointments can be many weeks out.

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 10/26/2008 6:56 PM (GMT -6)   
The referral was not part of the insurance requirement but that of CC......

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3069
   Posted 10/26/2008 7:28 PM (GMT -6)   
phyllisb--that's really wierd...I've never had one!!!  I always wonder how those things can be so different for two people who use the same docs...just strange!  It's a good thing we both found the help we needed yeah

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 10/26/2008 8:14 PM (GMT -6)   
Even when my husband went therefor bilateral kidney cancer,he spoke to the chair of the dept and he said he needed to speak to his urologist first before they could arrange for any care. That's how we hit it...it may be different for other doctors.....at least. like you said we got the help we needed...

Take care

KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 10/29/2008 2:24 PM (GMT -6)   
Thanks so much for all the info, ladies. I know my doctor would have no problem referring me to them. It does sound like one of the best places for colorectal surgery. After seeing what my friend went through with her surgeon, who has provide her NO aftercare and was really mean to her while she was in the hospital, I definitely don't want to go through that! I know it must be hard enough going through such major surgery and then to have to deal with mean nurses and doctors would just be too much!!  I'm really glad you ladies went to CC and got such wonderful care. And a private room sounds VERY nice!! 
 
Thanks again! :-)

KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 11/3/2008 11:14 PM (GMT -6)   
Do you ladies happen to know how much of the colon Cleveland Clinic leaves in for the ileorectal anastamosis surgery? My friend, Lori had her last appt with her surgeon today and he told her he left in 6 inches. Is this normal or too much/too little? Lori has only been having 1 small bowel movement per day and her small intestine is constantly in spasm and she is in severe pain if she doesn't take a muscle relaxer every day. I told her I would find out how many inches of colon you ladies still have left to see if her surgeon left the correct amount in. I remember hearing how if too much is left in, a person can still have a problem with the inertia, but if too much is taken out, a person can have incontinence. Anyone know if 6 inches is the norm? Thanks so much.

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 11/4/2008 5:10 AM (GMT -6)   

Hi Kap,

As far as I know,they took all my colon. But it is not unusual to leave a few inches of colon.  What does her surgeon say about the infrequent BM's and pain.  What about her diet.


KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 11/4/2008 12:36 PM (GMT -6)   
Hi Phyllis,
Thanks so much for your reply. Her surgeon doesn't seem to know anything. He said one bm in a 24-hour period is good and normal ?? He said nothing about the pain and that staying on the muscle relaxer the rest of her life would be fine. She's been on a low residue diet since she left the hospital. She is so frustrated. Is there any way you could find out if your surgeon left some of your colon, and if so, how many inches? I hate to ask you that, but she really wanted me to find out this info if I could. She said that if there's too much left in there, she may want to find another doctor to take more out.

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 11/4/2008 12:56 PM (GMT -6)   
As far as I know, it was all removed but about 4"....Has she given consideration that she may have slow transit in small intestins......Is she drinking enough fluids....eating enough food. She should definitely contact her GI guy and see what he says

KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 11/4/2008 2:08 PM (GMT -6)   
She drinks lots of water all throughout the day, and she eats small meals throughout the day. She is concerned she has slow transit in the small intestine. She's asked her surgeon these things, but he just shrugs his shoulders. It's just so frustrating. He has no suggestions for her and released her yesterday and said he doesn't need to see her ever again. I wish she had been able to go to Cleveland but she wasn't covered for that... Do you know if the Cleveland Clinic knows what to do if a person has small intestine inertia?  I'm wondering that for myself as well, in case I end up with the same problem Lori has.

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 11/4/2008 2:10 PM (GMT -6)   
She needs to go to her GI man....she may need to take miralax or something like it

KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 11/4/2008 4:03 PM (GMT -6)   
She tried Miralax, but it didn't help her at all. I think this shows how she has a small intestine motility problem. At least the muscle relaxer is helping her with the pain and at least she is having a bm daily! Could be worse. Thanks so much for your posts. I really appreciate it so much! :-)

Sue48
New Member


Date Joined Jan 2008
Total Posts : 12
   Posted 11/12/2008 8:03 PM (GMT -6)   
I also have colonic inertia and used the Cleveland Clinic as my second opinion for surgery. I was very impressed with the care I received. It was very obvious that the surgeon I was referred to had taken the time to read my file. He also scheduled a couple of his own tests and worked them in the same day so that he could give me his best opinion. At this point, my surgery is still an elective and I have decided to hold off on the surgery. I know at some point in time this will probably change and I would not hesitate at all to consider the Cleveland Clinic.

KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 11/14/2008 3:30 PM (GMT -6)   
Hi Sue, thanks for your response. I'm glad to hear yet another person has had a good experience at CC.

Can I ask why you're holding off on the surgery for now? I am, too, b/c I am trying some herbal laxatives that are working fairly well and tweaking them, seeing if I can find a dose that helps me feel better.... I'm doubting this will happen, but I'm trying anyway.

There's also a guy named Russell Mariani that wrote a book about digestive issues, including Colonic Inertia, who works closely with people for several months over the phone as you follow his diet and take certain supplements. It's a strict diet and I'm just not sure I have the energy/brainpower to do all that would be involved as far as preparing the food. I wish I had someone to do the cooking for me! I'm really ill and bedridden..... anyway, if I can find someone to help me with the cooking (possibly my mother-in-law) I may try his program, but it does cost money. I'm just not sure what to do at this point.

My friend had the surgery on Sept. 8 and she only has one bm per day and it's not complete, and she has severe pain in her small intestine (which, thankfully, muscle relaxers help with). Seems her small intestine is affected with inertia as well. She really feels no better since the surgery, and I'm worried this might be me!! I'm just not sure what to do.

Anyway, was just wondering why you were also holding off on the surgery. Good luck to you, whatever you decide to do, and I'm here for you (and anyone who reads this) for support. Take care.
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