HealingWell
Search Close Search
☰

Surgery for Colonic Inertia - Cleveland Clinic, Ohio?

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/15/2008 11:58 AM (GMT 0)
KAP--I know you have be worried about this for a long time...my only suggestion would be to go to the Cleveland Clinic (or another large teaching facility closer to you) and have YOUR second opinion. Remember that everybody is DIFFERENT in their own bodies and just because something happened to someone else, it won't necessarily happen to you. Life is not supposed to be lived bedridden:(

They will be able to access YOUR situation and make sure you ASK all the questions you need to...it will help to put your mind a ease and move on with your care...whatever path you take. It makes me sad to hear you are in such pain!
Posted 11/17/2008 3:59 PM (GMT 0)
I just had emergency surgery at Cleveland Clinic in October--on Oct 3rd, I had emergency surgery at my small local hospital for ruptured diverticulita (didn't want to stay there, but had no choice, we're an hour and a half away from Cleveland, and doctors felt I did not have enough time to be transferred).  4 days later, where the intestine was joined in first surgery ruptured, and at that point we insisted that I be transferred to Cleveland, so in the middle of the night I was transferred by ambulance.  I truly believe that I would have died if I had stayed where I was.  The treatment at Cleveland Clinic was world's above the treatment I was receiving in my local hospital, I would recommend CC to anyone.  I had a private room, was on M53, doctors and nurses were all caring and compassionate, and the stoma nurses there are unbelievably wonderful.  With the second surgery, I ended up with temporary colectomy, which has been quite unexpected and traumatic to me.  They have all helped me to deal with this, and followup care is great.  Luckily, I haven't had any complications, still recovering though--good luck to you! 

Posted 11/17/2008 5:07 PM (GMT 0)
emma12s--welcome!  I am sorry to hear you had to go through such an experience!  You sound like you are handling it well...which is a great first step to recovery tongue   Make sure you ask, if you have any questions, during the time with your "temporary" friend!! 
Posted 11/18/2008 1:14 AM (GMT 0)

turn  I GUYS

JUST WANTED TO LET YOU KNOW DR.REMZI IS MY GUY WHO DID MY SURGERY IN APRIL.  HE IS WONDERFUL AND SO IS BO SHEN MY GASTRO DR.  IF IT HADN'T BEEN FOR EITHER ONE OF THEM SAVING MY LIFE, I'M NOT SURE I WOULD BE HERE TODAY.  I GO SOON FOR MY SECOND SURGERY WHICH IS TO REMOVE MY RECTUM.  I LOOK AT MYSELF AS NOW I HAVE A LIFE I CAN GO ENJOY TRAVELING,EATING,AND GOING OUT WITH FRIENDS, THAT HAD BEEN ON HOLD FOR 22 YEARS OF MY LIFE AND MY LIMA DR WOULD OF JUST KEPT PUMPING ME WITH MEDS . 

LIFE IS GREAT AND I CAN THANK THE GOOD LORD WITH MY NEW DR.RAMEZ AND BO SHEN, 

I NOW KNOW WHAT LIFE IS ALL about AND CAN CONTINUE LIVING AND ENJOYING LIFE TO THE FULLEST.

IF I HADN'T GONE TO CC I DON'T THINK I WOULD BE HERE MUCH LONGER.

THE E-MAILING AND CONTACT WITH THE STAFF WAS GREAT.

GO TO CC FOR ANY SURGERYS.'

Posted 11/18/2008 4:26 AM (GMT 0)
Hi KAP!

I live about 2 1/2 hours south of Cleveland. My first four surgeries were here in the Columbus area, but then decided to go to the Cleveland Clinic. My surgeon is Tracy Hull. She's wonderful. She's very up-front and honest with me. Her Nurse Practitioner is wonderful too. I've had two surgeries there. Plan to go back in February to fix a rectal/vaginal fistula that won't heal. I have a gynecologist and a plastic surgeon lined up who plan to do reconstructive surgery after the new year. Probably during the time the fistula is fixed again. Dr. Hull is planning to use tissue from my inner thigh.

The CC is very thorough. Don't get discouraged if you're sent to several locations and have to wait a long time. It will be worth it.

Just remember, you deserve the best and you have to be your own advocate.

Good luck!

Mary
Posted 11/18/2008 8:46 PM (GMT 0)
Ohio76, thanks for your encouragement. I do know everyone's outcome is different. I would go ahead and schedule right away to see a doctor at the Cleveland Clinic, but I'm going to try to work with Russell Mariani (the man I mentioned earlier) first and see if he can help me. I've met a couple of ladies whose colonic inertia was greatly helped by his suggestions. If doing his program doesn't work, I plan on going to the CC.

Ohio43, I'm so glad to hear you're also had such great experiences at the CC. Did you have surgery for colonic inertia? Good luck to you on your next surgery! It sounds like you're in very good hands. My father had fistula surgery so I know a little about that. When you say it the CC may send me to several locations, where might that be, and you said it may take a long time -how long are we talking? Just would like to have some idea in advance.

Crohns lady, thank you also for replying. I really am glad to hear your confidence in the CC as well. It about made me cry when I read that they saved your life!!!  And Emma, thanks also for your reply. Wow!! You all have gone through so much.  I'm just so impressed at all this positive feedback and makes me feel a lot more confident about having the surgery if that's what I decide to do.

Posted 11/26/2008 5:39 PM (GMT 0)
did insurance cover the cost for all of you guys or did you guys have to pay from your own pockets? if so about how much did you guys pay for the procedure and the testing?
Posted 12/14/2008 1:38 AM (GMT 0)

KAP - After discussing my options again with my surgeon in Columbus I have decided to hold off on surgery as I still get relief from taking 3-5 Ducalox every weekend.  However, this keeps me at home one day every weekend but with being employed full time it is my best option.  I was on Zelnorm for about a year and a half but it stopped working about 2 months before they took it off the market.  I have tried Miralax and numerous other products but Ducalox is the only thing so far that I have found that works.  I have been assured that it will not hurt me to take these every weekend.  The surgery which has been recommend for me is to remove my colon and use my small intestine.  I guess at this point I am not ready to make the surgery decision.   

I also wish you the best of luck and would like to hear from you again on how you are feeling.  I have good days and bad days and life with colonic inertia is challenging!  Take care.

I would also appreciate hearing from anyone who has had this surgery and can give me the pros and cons.

Posted 12/15/2008 3:35 AM (GMT 0)

Hi Sue48,

Welcome to the site!  When I was using 4 capfuls of miralax a day, 2 tbs. of lactulose 4 times a day, amitiza 2 times a day and this was what I thought was working because I would have pellet like bm's once every 2 weeks if I was lucky, I thought that everything was supposed to be like this.  Finally when I called my GI dr. who happens to be 3 hours from my home & he said I need to see him, he said I needed a colectomy; I had no idea what he was talking about at that time.  So I went home and researched it, got REALLY scared, but followed through with the appointment he made for me with the most incredible surgeon!  I did have to have several tests done first that unfortunately my GI didn't perform but I now have a very knowledgable and compassionate GI dr. who works closely with my surgeon.  I had an open colectomy and was in the hospital the shortest that my surgeon has ever had a patient (5 days) even ones who have had a laparoscopy; evrything went extremely well and I haven't had any real problems since.  I had my surgery in July, I started out with about 20  bms a day, went down to about 10 by Sept. and am down to 2-5 a day now.  I am still on a low residue/fiber diet and I really watch what I eat to see if certain foods bother me.  But I have full control and have never even come close to having an accident.  I had numerous health problems before the surgery and now most of them are gone, the main one is decreased kidney function-- it is now back to normal smilewinkgrin !  I know many people on this site have had complications and sometimes I almost feel guilty that I haven't but I know they wouldn't want me to because all of us have been through soooooo much with CI that we all are thankful when someone is feeling better.  So, I know that the medicine is working for you now, but you really cannot even imagine how good your body is suppose to feel when it isn't full every week.  I wish you the very best and I will keep you in my prayers.

Judy

Posted 12/16/2008 2:15 AM (GMT 0)

Finallyfree,

Thank you for your response.  I am glad to hear that the surgery has been successful for you. I have spent the last few months contemplating this surgery but I just have not been able to take that next step.  The ducalox continues to work but at times I feel like I have the 24 hour flu after using them and a lot of times I have the rectal bleeding to go along with it.  I am sure ther will come a time when I come to the decision that enough is enough.

If you do not mind me asking, did you ever find the excessive bms to be too much of a life style change?  My surgeon and the surgeon at the Cleveland Clinic did mention that I would need to keep a journal on the foods I eat and I would figure out pretty quickly what I could not tolerate.  I guess my biggest fear is that I won't get the results I am looking for and will end up with removing the small intestine as well.   

I agree it is great to hear when people with CI are feeling better and you should not feel guilty for getting such great results!

Take care and thank you for the prayers.

Posted 1/3/2009 1:30 PM (GMT 0)
Sue48, I sure hope you still check this site! I am on my way out to the Cleveland Clinic for the second time. As of now I don't have the same problem as you, but a motility problem. I live on laxatives and enemas. I do keep a joural of the foods I eat, but it doesn't matter if it's a meal or clear liquids. I am having a test done, excuse the spelling, but I think it is a "defography". Did you ever have one done? I've been trying to find out more about it. I will be having that done on Ja. 9th at the clinic.

If you or anybody out there can help me.....please do!

Thank you!! Happy New Year to all of you! I sure am hoping it will be a better year for me. I've been sick for over 5 years now.....
Posted 1/3/2009 4:09 PM (GMT 0)
Miserable,

Yes, I have had a defography and the test wasn't nearly as bad as I thought it would be.  I have had numerous tests to confirm my diagnosis of "colonic inertia".  My bowels currently do not move at all on their own which leaves me to taking laxatives every weekend.  Prescribed medications and nothing else I have tried seems to work.  I am assuming since you also take laxatives you may be experiencing some of the same symptoms as myself.  I have good days and bad but really have not felt well for the last 3 1/2 years.  I would like to hear back from you regarding your condition.

Good luck with your test and please let me know how it goes.

Take care.

Sue48

  

Posted 1/4/2009 12:47 AM (GMT 0)

Sue48,

I'm sorry I didn't get back to you on your ? on 12/15 but I kind of skip around to so many of these sites and with the holidays and my 19 year old is moving 14 hours away tomorrow cry ...anyway no excuses...the frequent bms have never really bothered me because I spent so many years not being able to go to the bathroom that it's unbelievable how much better you feel and you really don't mind going frequently...and things eventually slow down...and yes it seems like I have to watch what I eat...but it also seems I have to watch my emotional state...this whole thing with my daughter moving has caused a lot of constipation symptoms...so I have to be careful not to hold my emotions in...

Blessings, prayers and peace,

Judy

Posted 1/4/2009 3:52 PM (GMT 0)
Sue48,

Thanks for getting back to me. I had a colon resection done May 2007 because it became to narrow to pass any stool. I was doing well for about 3 months before the constipation started again. I was laid up for a week trying to get rid of all the stool. Had to take oral meds. and enema's everyday. I have not been right since then. My primary doctor put me on mirilax with prune juice everyday, then librax to stop the cramping. That was the first thing Cleveland took me off and we tried exlax everyother day with an enema on the other days. Boy was that tiring! I miss so much work, without pay, that I am very surprise I have not been fired. My bosses have been very understanding so far. I also have had 2 back surgeries, hip surgery, a C-section and then colon surgery. The docs are starting to think it is too much nerve damage to my "belly" area. I hope and pray Cleveland can get it straightened out this time. It's too much to take exlax everyday, but if I don't "go" everyday my belly swells and is very painful. I don't dare take anything for the pain, but when it gets to bad I end up at the ER. They will take an xray, tell me what I already know, pain meds. and send me home. Same old thing the past few months.....will it ever end??

Have a great day! I better start getting things ready for my trip to Cleveland. It takes about 8-9 hrs. to get there from my house!
Posted 1/4/2009 8:35 PM (GMT 0)
sue and Miserable,
you both can learn a lot about colonic inertia and tens of women who went through the colectomy if you read "total colectomy parts 1-20". if you google "total colectomy part 3", you'll get exactly it. (parts 1 and 2 weren't titled like that, so you can find them only by seaching cack pages)

good luck - you've got tons of information there and lots and lots of pages to read...

trust me you're going to find these pages are very helpful and extremely encouraging!!
Posted 1/4/2009 9:30 PM (GMT 0)
Thanks for the info....I'm going to the pages right now. Encourgement is what I need right now!! Thanks again!!
Posted 1/5/2009 10:55 AM (GMT 0)
Dont worry about the 'defography' or defaecating proctogram as it is also called.  I really helps to see any abnormalities in the rectum and surrounding areas - it is good to rule out anything else going on when moving the bowels.  You are put behind a screen so there is total privacy.

Posted 1/8/2009 9:56 PM (GMT 0)
I also would like to thank you for the information as I need encouragement as well.

Miserable, please let me know how your trip to the Cleveland Clinic went. Take care.
Posted 1/8/2009 10:09 PM (GMT 0)
sue and miserable.... you can also join us in the "TOTAL COLECTOMY PART 20" - it's the thread of the colonic inertia girls.
Posted 1/14/2009 5:01 PM (GMT 0)
Sue48, I just got back from CC on Sat. but got my test results yesterday. I do not have Colonic Inertia, but my blood work showed I may have Lupus. I guess Lupus can give you some of the same problems with your colon. I am going locally to a doctor for more testing. I hope to be going back to work on Jan. 28th if I get my energy back. I am so grateful that I didn't have to have more surgey (at this time anyway). Thanks for the good thoughts!

I hope all is well with you! Take care and stay warm!!

Not so Miserable at this time, LOL!
Posted 1/15/2009 1:55 AM (GMT 0)
Miserable,

I am so glad to hear you will not have any additional surgery and that you do not have colonic inertia.  I hope you are able to return to work and do get your energy back.  I will continue to keep you in my thoughts and please let me know how your testing turns out.

Take care and good luck!  :-)

Posted 3/6/2009 12:19 AM (GMT 0)
bump for annyb :-)
Posted 3/6/2009 12:42 AM (GMT 0)
Thanks for the bump. This thread has been very encouraging.

I just got my appointment at the CC. Now I just have to get a flight. I plan to call the medical concierge first thing tomorrow.

I am feeling very empowered right now.
Posted 3/6/2009 12:50 AM (GMT 0)
annyb--that is great!! I have had all but one of my surgeries there...if you need any suggestions on anything, just ask.
Posted 3/22/2009 4:31 PM (GMT 0)
Hi, I have had severe constipation problems, that only can be relieved by laxatives, for the past 17 years. Now, my colon and rectum are so dead that I can't even expell diarrhea. If the laxatives turn my stool to diarrhea, I just get bloated with it. Nothing comes out of me. It's a nighmare. I never thought things could get this bad. I'm having a proctcolectomy (removal of entire colon and rectum) on march 30. They are going to do a J pouch. If it doesn't work, I'll have to wear a bag all my life. I would greatly appreciate hearing from anyone who has had this exact same surgery for this exact same reason. Thanks!
✚ New Topic ✚ Reply
123