Surgery for Colonic Inertia - Cleveland Clinic, Ohio?

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,

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!

Thanks so much for that, Phyllis. I may contact you if I need more information.

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.

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!

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

The referral was not part of the insurance requirement but that of CC......

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

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.

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.

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.

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!

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.