Cleveland Clinic Aftercare Leaves Much to Be Desired

Wow. 

With even what I went through I was treated very well where I was.  I was at Baylor All Saints in Fort Worth TX. 

My bedding was clean.  I had what I needed and was never ignored.  And had the best nursing care one could ask for.  

I cannot imagine even having a filthy room let alone any of the rest. 

It's bad enough we go through this but that adds to the misery.  I am so sorry you had to go through that. 

Unimaginable. 

Richard. 

Wow, that it terrible!  I recall a talk I had with Dr. Remzi's nurse about whether I should get a private room or be on the floor with the other intestinal patients.  (Gastros?)     She talked me into staying on the floor where they had the most experience, that the private room staff do not have the specialized expertise/understanding/knowledge that we need.  I took her advice, stayed on the floor and I had a good experience at CC. The staff knew all about J-pouches, care, etc., and I think it helped.   Again, sorry for your issues!

I had a private room at Yale after my takedown.  In fact, most of  the rooms were private.  The floor was small and many of the patients were also in the process of getting j-pouches or ostomies, so the nursing staff was very familiar and skilled in this area.  The majority had the same surgeon as me.  I had the 3 step j-pouch procedure and my experiences were all good.  Only complaint I had was the the rooms for the second and third steps were very small.  They had recently moved from another floor.  The first room I was in was much bigger and easier to get around in and have room for visitors.      I also had zero complications after all my surgeries.  Just lucky, I guess.

Thank you for the comments.  My experience 17 years ago at Washington Hospital Center (WHC) in DC (where I went through the 3 step process) and what happened a few weeks ago at CC couldn't be more different.  The former was the gold standard of aftercare including my surgeon popping in multiple times a week to make sure I was okay.  I sent a letter thanking all of the nurses for taking incredible care of me.

Dr Ashburn advised that I find a gastro local to me.  Well, I do have one in L.A. but I am out of town and far away from home and the ones I have found online in the area are not available for a few weeks.  In the meantime, I am going back and forth with CC for a final pain med refill while I wait to see a gastro here.  I cannot think of any other alternative.  Pain management clinic?  ER?  I don't know what to do.  Tylenol can only do so much. The pain meds allow me to move around and feel somewhat human.  My home care nurse said I need about six weeks worth of pain meds.  And, as I said before, I went into surgery thinking I was having laparoscopic w/ possible stoma and awoke with a long deep incision and stoma.  This unexpected development threw off my entire holiday schedule and plans for travel.  I understand that laparoscopic was not possible due to major scar tissue but my bf and I do not remember this possible outcome being presented at the consult or the morning of surgery.  

Needless to say, I am really depressed about the whole situation.  I walk around shell shocked and cry on and off.  Never have I felt so violated by a group of health care professionals.  I honestly believed I was going to die at the Cleveland Clinic.  My bf equated it to the movie "Hostel."  As for staying on a floor with other gastro patients, there were a few on the private floor (one poor guy had five failed pouch surgeries!).  Upon chatting with them, my bf learned they too had to fight for meds. There was also a patient who was in a small engine plane crash in which he was the only survivor and he'd been there for a long time (I think months).  His father went back and forth with them and they gave him a hard time about providing meds to his son, too.

I know that Ohio has an addiction epidemic.  But to punish the patients because it looks good on paper is simply cruel.  This is my 22nd surgery and I have never had a pain med addiction nor have I ever been treated this way by a medical facility and their staff. Now I leave this clinic with a "heart condition" and beta blockers and was told I might have to have a hysterectomy to boot because my uterus is the size of a grapefruit.  While this is no fault of the surgeon's, the way the news was delivered by another member of the surgical team was a little too glib for my taste, especially when you are lying in bed writhing from agony.

Sidenote:  The day before surgery---when I was making the rounds with multiple pre op appointments---my chart was mixed up with someone else's and the nurse asked about my "heart condition."  I informed him that he was mistaken and that he must have had someone else's chart.  I can't help but think of it as a foreshadowing...

Last, I want to make it clear that my posts do not reflect what I think of Dr Ashburn as a surgeon.  She has a pleasant bedside manner and did a beautiful job on revising old scar tissue and stitching me up.  I wish she worked elsewhere because I do not know what to do about being reconnected nor do I want to step foot in that facility again.  

OMG, "violated" is a good word to use. I had all my surgeries at Mt Sinai in NYC. I had a mother of a migraine after surgery number one. It made my abdominal pain feel like a pulled muscle. No one would listen to me or give me pain meds for it. I couldn't move, which is what I need to do when I have a migraine. It's the only thing I can think of to imagine what you went through, of feeling dismissed and worse, of being made to feel like a problem patient. Mt Sinai has improved a lot --after the next three surgeries, they asked about my pain level and management so much that it almost got annoying. It should be the number one priority. What happened to you borders on emotional abuse. No wonder it's hard for you to move past it. You've been traumatized. Give yourself as much time as you need.

I can't comment on any care at CC, but, will say this. If I was you, I'd speak to the Hospital Administrator. They need to hear from you, the patient, what happened. It won't change anything for your situation, but, possibly could prevent it from happening again. I had an issue at a hospital, name withheld, that traumatized me and I spoke with the Hospital Administrator directly. We met in person, discussed the issue and appropriate measures were taken to rectify it (or so I read and was told) that it wouldn't happen again. Further there was action taken on the Hospitals part to make a gesture of "sorry".

Just my $0.02 and I'm sorry you had a traumatic experience. That only adds to the trauma you were already going thru.

I'm sorry you had this experience. I had the 3 step surgery this year with Dr. Kessler at CCF. Honestly I couldn't have been more impressed with him, or the nursing staff when I was an in the hospital. I'm a surgeon myself, and the nurses were aware, but never once did I get the impression I was receiving special care because of this. My roommates were treated with the same courtesy, and professionalism that I was. I've been on staff at several hospitals, and the care that I received was top notch at CCF. Again, I hate that you had such a rough time. Good luck going forward...

Californication posted:

I had surgery almost three weeks ago with Dr Ashburn.  Her colleague Dr Shen diagnosed me with a prolapse and having a failed pouch.  What was supposed to be laparoscopic turned out to be traditional with illeostomy because there was too much scar tissue to work through. Of course this came as a shock to me because no one told me and I found out on my own that they switched course. This explained the significant amount of pain I was experiencing.  However, to be left that way is unacceptable. I awoke from surgery screaming.  The nurse ignored my pleas for more meds to make me comfortable.  The whole time I stayed at the clinic was a fight for pain meds. I could not relax or recover in peace.

How much pain was I in?  I ended up going into tachycardia and a cardiac team was called to administer a shot to slow down my heart.  It was singularly the most terrifying experience of my life.  And this is only one of many incidents. You think you'd get extra care from being in a private room but the nurses were incompetent, the beds left in a filthy state, and the lack of communication and apathy was appalling.  When I went into tachycardia it took about ten to fifteen minutes for a nurse to appear! My boyfriend's pleas at the nurse's station were put on ignore.  If I didn't have him as a witness I would think I was imagining the whole thing.  It was like a clown cart on fire.  No one really gave a damn about me!  (BTW the nurses did not know how to affix whatever you call those things to my chest!)

The incompetence is staggering.  My internet search yields similar stories and the book, "Born With One Foot in the Grave" mirrors my experience. Additionally, here are links to support what happened to me should you think I simply hold some grudge against the facility.

http://kidneytransplantkiller.com/links_1.html

Maybe CC was the gold standard at one time but if so it has gone downhill.  I will never forgive them for making my stay a nightmare and treating me the way they did.  

As for Dr Ashburn, time will tell if my surgery is successful but so far so good.  I plan on being "reconnected" elsewhere.  If she operated outside of CC I would go back to her but otherwise I am too traumatized to ever set foot in that place. Additionally, on the drive home from Ohio, I ended up in an ER in PA where they diagnosed a blockage that was causing me to vomit nonstop.  I had begged for a cat scan at CC because that's what I suspected but was totally ignored and told I just needed to "walk it off."  

Last, some lady came into my room and threatened to call the CC campus police on me because I told them that if they didn't increase my pain meds so I could feel more comfortable, I would take the ones I brought with me on the trip.  After all, what other choice did I have?  So they were going to call the police on someone who has just been cut into from top to bottom.  

And like I said, these are only a few of the events that happened.  The doctors and nurses and pain management team do not communicate effectively and no one knows their heads from their butts.

Be warned.  

PS So far my total bill for all this is about $60,000.  FYI.

I was told by Shen I have a mild prolapse in my redone pouch that was done by Dr Remzi there last year. It has not caused me issues so, have not had to do anything. What was going on with your prolapse that you had to have surgery due to a pouch failure?

Wow Cali, I have to say that reading this jarred me. I am so sorry to hear that.I am scheduled for J-pouch removal soon with Dr. Ashburn.

My colectomy+jpouch and my ileo takedown surgeries were at Cleveland Clinic Florida. Surgeon was a top-notch expert, but frankly there are many such at CC. The first op was a complete nightmare and your story sounds very similar to mine. I had a post-op ileus (frozen bowel, kind of like a blockage) that the resident on call ignored. I was being given ineffective pain meds. I was in so much pain the entire floor heard my screams and my heart values were all over the place (my heart is fine, I was a competitive cross country runner a few years ago...). The resident said I was faking it and had anxiety. I blacked out at some point and I don't entirely know what happened over the next hours other than my family wouldn't let them do this to me. Eventually, a different resident (Dr. Chadi) arrived. I felt like he was a guardian angel. He switched me to pain meds that worked, diagnosed my ileus, put in an NG tube himself which began to relieve my GI system, and reassured me.

The nursing staff were actually great and the facilities were excellent. Although I do not think that my surgeon made any surgical mistakes, the followup care with him since does not suit me and I think Dr. Ashburn is a better choice for me. I have had some outpatient care and interaction with nurses at Cleveland. They seemed to be on top of things, and I can only pray that that is the case for me.

I can only think that since you ultimately were diagnosed with a blockage, it must have been ignored initially. Perhaps they missed that and thus you had such a similar experience to my first time.

My thought is that things can go wrong anywhere. My experience with the resident that almost killed me and the one that saved me illustrated that for me. Ultimately, I choose the surgeon I think is the best fit at a center that I think has a good chance of providing me quality care, and I come prepared with family to back me up and try to be about as knowledgeable as the doctors who will treat me (I am probably going to med school after this anyways). Things can go well, or not anywhere, unfortunately.

Pouchomarx posted:

Californication posted:

I had surgery almost three weeks ago with Dr Ashburn.  Her colleague Dr Shen diagnosed me with a prolapse and having a failed pouch.  What was supposed to be laparoscopic turned out to be traditional with illeostomy because there was too much scar tissue to work through. Of course this came as a shock to me because no one told me and I found out on my own that they switched course. This explained the significant amount of pain I was experiencing.  However, to be left that way is unacceptable. I awoke from surgery screaming.  The nurse ignored my pleas for more meds to make me comfortable.  The whole time I stayed at the clinic was a fight for pain meds. I could not relax or recover in peace.

How much pain was I in?  I ended up going into tachycardia and a cardiac team was called to administer a shot to slow down my heart.  It was singularly the most terrifying experience of my life.  And this is only one of many incidents. You think you'd get extra care from being in a private room but the nurses were incompetent, the beds left in a filthy state, and the lack of communication and apathy was appalling.  When I went into tachycardia it took about ten to fifteen minutes for a nurse to appear! My boyfriend's pleas at the nurse's station were put on ignore.  If I didn't have him as a witness I would think I was imagining the whole thing.  It was like a clown cart on fire.  No one really gave a damn about me!  (BTW the nurses did not know how to affix whatever you call those things to my chest!)

The incompetence is staggering.  My internet search yields similar stories and the book, "Born With One Foot in the Grave" mirrors my experience. Additionally, here are links to support what happened to me should you think I simply hold some grudge against the facility.

http://kidneytransplantkiller.com/links_1.html

Maybe CC was the gold standard at one time but if so it has gone downhill.  I will never forgive them for making my stay a nightmare and treating me the way they did.  

As for Dr Ashburn, time will tell if my surgery is successful but so far so good.  I plan on being "reconnected" elsewhere.  If she operated outside of CC I would go back to her but otherwise I am too traumatized to ever set foot in that place. Additionally, on the drive home from Ohio, I ended up in an ER in PA where they diagnosed a blockage that was causing me to vomit nonstop.  I had begged for a cat scan at CC because that's what I suspected but was totally ignored and told I just needed to "walk it off."  

Last, some lady came into my room and threatened to call the CC campus police on me because I told them that if they didn't increase my pain meds so I could feel more comfortable, I would take the ones I brought with me on the trip.  After all, what other choice did I have?  So they were going to call the police on someone who has just been cut into from top to bottom.  

And like I said, these are only a few of the events that happened.  The doctors and nurses and pain management team do not communicate effectively and no one knows their heads from their butts.

Be warned.  

PS So far my total bill for all this is about $60,000.  FYI.

I was told by Shen I have a mild prolapse in my redone pouch that was done by Dr Remzi there last year. It has not caused me issues so, have not had to do anything. What was going on with your prolapse that you had to have surgery due to a pouch failure?

I wasn't able to empty the pouch properly. According to my surgical report, I have pouch dysfunction secondary to likely prolapse with significant tenesmus and dyschezia.  Significant pelvic adhesive disease.  Enlarged uterus compressing anterior wall of pelvic pouch.

I have no idea what half of that means so if someone can interpret it that would be awesome.  Thank you!

Pouch dysfunction just means your pouch isn't/wasn't working properly. Tenesmus and dyschezia are your symptoms: urgency, frequency, and straining. Likely pouch prolapse means part of your pouch is/was probably moving into its own way when you try to defecate. Your uterus was compressing your pouch, which sure doesn't help. Pelvic adhesive disease means that a bunch of adhesions had developed in the pelvic area, attaching things together. Significant adhesions can tend to make laparoscopic surgery difficult or impossible. 

Are you located in Southern California?  I had my pouch created by Dr. Mathew Isho in San Diego and have had pretty good success (3 years post-pouch).  Just mild pouchitis twice.

I did not have an option on researching surgeons or know anything about a J-Pouch.  I had an emergency colectomy and did not have UC for very long... so it was all a mystery to me and I just relied on what my GI recommended.

Pre-pouch and Sharp Hospital is another horror story, but that is all behind me  now.  I had many complications (pulmonary embolisms, abcess, incicisional hernias, infections, etc.), but I was never refused pain meds.  During steps 2 and 3 the nurses would come in and check my IV pain med drip to see if it was working, because I would never push the button to give me more.  I have a high pain tolerance, so if I am SCREAMING (during step 1), they knew I meant business and they would come in and give me a shot of dilauded.  After watching me curl up like a heroin addict, they deemed me "allergic" to dilauded and will only give me morphine.

Does Dr Ashburn still work for Cleveland Clinic? she does not come up on the doctor search ??

Pouchomarx posted:

Does Dr Ashburn still work for Cleveland Clinic? she does not come up on the doctor search ??

Sorry for the late response.

Yes, it's Dr. Jean Ashburn.  

http://my.clevelandclinic.org/...f/17247-jean-ashburn

Just completed jpouch redo with Dr Remzi seven weeks ago at nyu .So far so good new pouch working good 5-6 times a day from 15-20 .I found him and his staff to be very good .Hope today is as good as yesterday . 

FYI, Dr Ashburn no longer works at CC.
Just received a letter in the mail notifying me that she has left as of Oct 1 2017.

yeah I read somewhere on FB group a month or two ago that she was leaving for private practice in North Carolina I think

I had K-Pouch revision surgery performed by Dr. Jean Ashburn at Cleveland Clinic on Sept 12, 2017, right before she left Cleveland. This is the phone number to contact her at her new facility in North Carolina:

336-716-0664