Cleveland Clinic Gi Doctors

[Maxine]

When I went to the NIH EDS study in April 2008, the Geneticist saw my lower GI films with double contrast and air, and she was sure I had inflammatory bowel disease. My regular GI doc said the EDS caused the multiple diverticuli in large bowel---3/4 of the bowel. All I know is I have constant bloat, and misery----not necessarily pain, and not any bleeding that I know of. To me this doesn't sound like crohns or inflammatory bowel disease. However, it can PRESENT in different ways.

I never have diarrhea----but constant constipation.

I'm supposed to go to the Cleveland Clinic for a colonoscopy. My consult was just over a week ago with a gastroenterologist. After getting my history, and my family history, she wants to study the whole family now. I need to get all of that in order by getting consent forms signed, but my mother in law broke her transverse sacrum, and she's 82 years old------so you can imagine..... We have been taking turns babysitting the incompetant staff in the hospital. I will say the nurses have been great, so that leaves the rest of the staff in question. Getting the consent forms signed will be delayed for a couple weeks.

Anyway, after I get back from Maryland to see a neurosurgeon this week for my cervical cranial instability (CCI), I see another gastroenterologist who will discuss the colonoscopy with me on May 20th. I will be seeing the anesthesiologist the same day to discuss POTS, EDS, and CCI concerns with them. It will be interesting to see what is going on in my colon. It's VERY scary, becuase my brother just passed away from colon cancer, and my mother just two years before that from an unknown cancer---it was found too late, and her whole abdominal cavity was full of it. Her brother died two weeks after she died. He had colon cancer. Her sister had brain cancer, and died in 2003. The Cleveland Clinic wants the whole medical history of my mother's side of the family, as far back as we can go.

For some reason or another the colonoscopy has been put off, and then a lower GI was decided due to my health instability. I haven't been stable for quite a while, then when I did feel stable, we had doctors who were afraid to do the colonoscopy out of fear of perforation of the bowel due to the EDS, and my PCP out of fear of the low BPs. I got tired of living in fear of not knowing for sure if I have polyps, as the lower GI results said some small ones were possible, but it was never followed up on, so I called the Cleveland Clinic. I'm still not stable, but want to get this done. I will stay on campus the night before, and get it done in the morning. This is a scary time, and my mind is going in dark places.

This past week I almost had a breakdown, as the local GI docs's office said they saw a slightly elevated number on one of my blood tests for liver. My liver showed some lesions, and my GI doc did the AFP blood test for liver cancer. I didn't know which test she meant was elevated. Watching my brother die after the colon cancer spread to his liver really shook me up. He lost his mind after the toxins went to his brain---he was so weak he couldn't squeeze my hand. Then the way my mother died went through my head, as she was so neglected, and we found out she had terminal cancer only 48 hours before she died. My mind was going crazy. They GI doc's office called back the same day, and said the results were normal. I was relieved, but I still want to see it for myself.

I just want this nighmare to end, and NO C-word.

Maxine :0)

[lalalisa]

Hi Maxine,

I just wanted to tell you that I read your post and it sounds like you are going through a lot right now! I'm relieved with you that your latest bloodwork came back normal - I'm sure that was super scary! I hope and pray you can find some help soon!

Blessings,

Lisa

[janiedelite]

Hi Maxine,

Thank you for letting us know what's going on. You certainly do have so much going on right now, and all related to your health! I hope your worries can be eased soon,

Janie

[gertie]

I hope your nightmare will end soon with a happy ending. At least Cleveland Clinic is trying to help & hopefully will answer some of yor questions. Good luck!

[Maxine]

Thanks--- I appreciate your support and kind words.

We have been up in the hospital almost every day with my mother in law who fractured her sacrum. It looks like the right hand doesn't know what the left hand is doing there, so we all have to babysit the idiots who keep passing the buck around. Fortunately she has a large family. Sad how dismissive docs were when she went to the ER, telling her she was fine, and she'll be driving in two days. I cancelled my trip to see a neurosurgeon, as we are too stressed, and their office didn't send the list of hotels in the area. Normally I would have been on top of it, but with my mother in law in the hospital we haven't had the time to sort things out like I'm all too familiar with.

I'll be glad to get this colonoscopy over with, but very nervous and praying they don't find anything sinister.

Thanks again!

Maxine :0)