My Cleveland Clinic Experience

I was eating dinner  in this horrible diner when I felt the severe depression and anxiety kick in. I got into my hotel room, crying at the door to get in with my broken key card. I felt like I was just going to collapse on the floor and have a hysterical crying fit. “this is my life” is all I could think. You want to punch your pouch and guts out of your body so bad but you can maybe just punch yourself a few times, shower then sit down to work on some website design for a client.

My day was hopeless today just when I felt full of hope on Tues after I saw Dr. Bo Shen (the pouch guru). My pouch looks perfect of course but why do I keep getting bacteria overgrowth? Even though I feel my trip was poorly planned by me and a waste of time and someone else’s cash who donated this trip to me since I am very poor. I can’t think this is wasted. What was done was at least more than others have done. I just need more doctors, once again. This disease has an ugly face and it shows to much.
I wanted to see if I could get my digestive tract under control and the pain. The pain is most likely from FAP or the BCIR itself since it can cause more mechanical issues than that Kpouch I was told. At least for people with FAP since well we are open to more cysts, desmoids and FAP causes a lot of pain to begin with. I was told to start taking Lactoluse Solution USP in combination with my usual antibiotic. It has helped my pouch actually work since it has a mild laxative. It is nice to have things digest and move along but I have to balance it with how much I take and my antibiotic. I might be on antibiotics for life. I do not have pouchitis but I have bacteria overgrowth (not the same thing). Most likely stemming from my stomach sleeve gastrectomy . Everyone who has weight loss surgery should have an upper and lower scope. It should be mandatory. I might one day face a whipple surgery that could kill me due to my stomach surgery. I am also more sick now that I lost a colon and most of the stomach.

I wrote a lot more in this section but it seems that WordPress has eaten my post so I will try to write what I had but maybe not as much since it was a lot and I am already burned out on typing.

I have to go back to See J. Cheng, the pain management doctor who is the best. Shen tried to kill the nerves in my ex-rectal area but it wasn’t enough so I need to block the nerves in the spinal area. Pain blockers. These are nothing new and I was told I should try it with my IC as well so maybe this is a sign. I have a ton of cysts in my buttock area where the rectum was removed that is causing me pain. Gardner’s Syndrome causes pain.

I met all walks of life. I sat next to a women who wore the same green gown as me and waited patiently with her caregiver/interpreter for her MRI as well. She had wide eyes and seemed genuinely interested in us loud Americans. With her legs crossed and face resting on her hand, I explored her hands since those tell age the best. She seemed like a young teenager but her hands show mid 50-60’s I think. I couldn’t tell much since most of her face was burned and covered with a head wrap. She intrigued me, I wanted to know her story.

Cleveland Clinic is full of all walks of life. The very wealthy Sheiks, the women in full Burkas, Muslims with full out fashion that might need of been policed 🙂 The doctors from Russia, Germany, France, India, China, etc. The science that was in those walls. The video installations and live Jazz music playing. My Funny Valentine was being performed while I went to walk over to the other CC building on campus that is the home of Colorectal and GI Disease . I met with Lisa in the Hereditary and Genetic Colon Cancer FAP registry. I learned about all of the different types of Colon Cancer Genetic diseases. And here I thought it was just LYNCH, MYH and FAP. The names I was told are a lot but I will look up the info and post. I think I heard over 10 different names and the list could have gone on. I felt like I knew so little after that alone was mentioned. They also have a program where you can donate your body at the CC. I can donate my body for FAP research and that is all I have ever wanted to do. I can’t just piece my organs out for life when research can save way more.

I didn’t get to experience Michael Simon’s restaurant but maybe when I go back I can. I am going to try to drive through and see other doctors on my path to leaving this dreadful part of the US, called Texas. I am sick here and miserable. I am by far, better not being here and that alone is priceless.


4 thoughts on “My Cleveland Clinic Experience

  1. My kids have both been diagnosed with FAP. We are considering going either to MD Anderson or Cleveland Clinic. Perhaps you can provide some insight on the treatments/ care you had at each facility. Thanks

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