Busted in Cleveland

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Crohned
Regular Member


Date Joined Jan 2007
Total Posts : 86
   Posted 5/28/2007 10:11 AM (GMT -6)   
I'm going to try my best to keep this brief and to the point.  I traveled by air to Cleveland Clinic, met w/ Dr. Stocchi to have first exam, labs, paperwork, meet with ostomy nurse, set up for surgery.  Everything went like clockwork.  Dr. Stocchi was very knowledgable, helpful, and had a caring bedside manner.  We planned for a laproscopic total colectomy w/ ileostomy in the am.  I had the fleets prep and halway through the night had fevers, chills, sweats due to the severe colon disruption. 
 
Arrived at surgicl building first thing to find fifty other people that when they called the schedule we all filed down a corridor like a herd of cattle, that was strange.  I was sick, sick and immediately layed on the gurney waiting for the nurse to start iv, etc.  She came after 45 minutes.  Took my vitals to find a temp of 104, hr 144, lo BP.  Anesthesia and Dr. Stocchi came in the discuss possible reschedule but it was decided that it was the inflammed diseased colon that needed to come out.  Surgery went well.
 
Recovery room was horrible.  I was in excrutiating pain upon waking up and they just kept telling me to push my button.  The morphine just wasn't doing it for me.  Finally, they switched to dilauded but it still was more pain than I was expecting and was unable to move myself in bed.  The nurse never hooked up my SCD's--leg pumps to dec. the risk of blood clots, no one ever offered me ice or turned me off of my back.  I layed on that hard gurney for seven hours straight before they had  a room for me.  Unfortunatly, the room was a short stay room not a room on the colorectal floor.  So now I was being care for by nurses who knew nothing about stomas, post-surg procedures/pain management.  My pain was unbarable and I could not get relief. 
 
This is where I believe Dr. Stocchi failed me as my surgeon.  He did not listen to my pain complaints and think to further investigate.  In fact, he was ready to discharge me post-op 2nd day.  2nd DAY!!  I hadn't even been on the colorectal floor, hadn 't had the ostomy education, hadn't been able to even walk the halls d/t horrible lower belly pain.  He left on vacation?conferece?something? and my care was resumed by a Dr. Carrin who also was hell-bent on getting me out of the hospital.  On Saturday, after explaining in great detail my abd pain he reiterated the fact that I had a lap surgery and should be dischared today.  I gave up.  No one would listen to me.  After he left tey took my vitals and I had a temp of 104, HR 160, BP low and now I had their attention finally.  He decided had an infection and opened my lower abd lap site AT THE BEDSIDE.  I asked for sedation, he said no, I asked for pain medication and he said morphine, I asked for Fentanyl and he gave me 25 mcg which equals about 2 kisses.  He opened me up and immediatly drained thick tan mucous, drainage.  They placed another stoma bag to catch all the drainage and I would be spending a few more days in Cleveland.
 
In short, my pain was never under control and that is unacceptable.  I did not receive all the teaching that I was hoping from the Cleveland CLinic, "the birthplace of ostomies", and I was discharged with a large infected wound that I was packing myself and they didn't even bother to send a script of antibiotics.  What's wrong with these people?  They were operating at max capacity.  They had high levels of patients and were kicking them out lt and rt in order to keep the revenue increasing.  It is a surgery mill and one that I will never visit again.
 
I have since traveled somewhat uncomortable (understatement) back home and met my GI on the medical floor of my hospital.  A wound vac was placed to my incisioin site that is approx 2 inches by 2inches, re-hydrated, iv antibiotics, and thank the good Lord, I finally got relief of my pain. 
 
So, I had a complication post-surgery which Stocchi assures me happens sometimes and it is described as when the rectal stump blows up in the abd.  It probably would have been an ok experience had it not been for that set back.
 
Pain management is a very big deal in assisting you in the healing process.  Mine was never controlled and I think that my complications were further complicated because I was in so much pain.  My advice, communicate your pain expectations w/ your surgeon prior to surgery and all the way through your hospital stay.
Crohn's/Colitis 2003.  Remicaid, Pred, Dipentum, FishOil, 6MP, Vitamins  
 


Nancy1
Regular Member


Date Joined Nov 2006
Total Posts : 125
   Posted 5/28/2007 6:30 PM (GMT -6)   

I am really baffled by your experience.  I haven't heard of this type of treatment of patients at the Cleveland Clinic.  It really makes me nervous with my husband's surgery with Dr. Stocchi coming up on June 11th.  Hopefully you are getting better inspite of your experience at CC.  Thank you for the warning about pain and having someone listen to you. My husband won't know whether he will have lap or reg surgery but I'm planning on him being at the hospital for 10 days.  If you think of anything else that you would like to relate to us in preparation for surgery, please do so.   


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 5/29/2007 12:11 PM (GMT -6)   
I am so sorry about your experience. I had the wound vac for a couple of months initially hurting whenthe sponges where changed. I would take my dilauded 1 hour before the nurse would come to change it. Eventually the pain lessened. I still have a pig tail drain in an abscess which is the cause of my pain now. the abscess drains from around my stoma and small amounts still at my wound site.
Dx with Crohn's 1987, symptoms as early as 1984.
Temporary iliostomy February 19 2007
Ovarian cysts dx 1994, migraines dx 1996, allergies (including food allergies) , oral allergy syndrome (sligtly different than true food allergies), Astham dx 1984, Gall Bladder removed 1999, Inguenal hernia Sx 1987
 
Protonix 40 mg, Nuerontin, oxycontin, dilauded, Folic acid 1 mg, Vitamin b12 1000 mcg, vitamin b6 100mg, Diflucan 100mg, vitamin A, Multivitamin, Elavil 100 mg, Zanaflex 4 mg, asmanex, singulair, foltix, probiotics
As needed: Albuterol inhaler, relpax, nebulizer (albuterol ), have an Epi-pen but hope I never have to use one.


CampingGrl
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/2/2007 5:41 PM (GMT -6)   
Thats a truely awful experiance, And one that I hope is remedied by June 7th. I will be at the cleveland clinic for my permanent ileostomy.
I feel terrible that happened to you, I hope you followed up to let them be informed how poorly things were handled.

~Stephie~

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 6/6/2007 9:52 PM (GMT -6)   
Luckily, when it came to my surgery, I had the best of care. Although, when I had my colostomy switched to an ileostomy, the ET nurse was on vacation also.  It didn't matter that much to me because I was already an ostomy veteran by that point. However when I first had the colostomy 18 years ago the ET nurse played a vital role in my recovery, both physical and emotional. I don't know how I would have gotten through the experience without her!
 
I've been to a few really lousy hospitals too. But, never in the serious situation that you were in. I hope you are feeling better. And, I hope the ostomy eventually improves your life as it did mine.
 
 
 

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 6/19/2007 12:05 PM (GMT -6)   
i am sorry to hear your experience was soo bad.

i was lucky (in some ways)....about ten years ago, my regular GI doc said he had done all he could, (not all doctors can admit defeat) and referred me to Dr. Targan at Cedars. My regular GI had to get a sepcial out-of-network referal. those referrals ran out quick though.

I quickly realized that Dr Targan was the best there was, and so, i picked his medical group (yeah, i have an hmo) that was located where the best doctors in the world are......Cedars-Sinai, Los Angeles....they have an IBD center there and conduct testings and research that is cutting edge.

So for ten years, my HMO group was about 70 miles from my house. i just had to go there for urgetn care and other stuff, too, which ends up being a pain.....but i was able to have my surgery at Cedars-Sinai, i got my own room with a view of Sunset bLvd. and the best nurses in the world! my surgery went well, so i was able to be discharged in three days, but after I got home, I realized the hospital was actually nicer.

I made a point early on to tell the nurses and docs that i needed a lot of pain meds since I had been on Vicodin for so many years pre-surgery....fortunately for me, they responded as I needed them to, but i did have to ask several times and mention that i did not think what they were doing was enough.

so now, i have to drive 2 hours each way to get to LA/Bev Hills to see my doc, even just for urgent care, or a cold, but it is worth it. MOst HMOS don't care what group you pick, you just have to go to the docs in that group for all your care....

just a thought....next time you might want to try and find some referals instead of going back to that place.....

and to anyone else who has decent insurance, lots of their own money, or is crafty and determined to maximize your ins. benefits....and if you live in the so cal area, or even surrounding states...

it may be worth a trip to Cedars-Sinai, Los Angeles IBD center.....do a google search and you can easily find their website.....
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