Going To Cleveland Clinic To See Gi Doc

[Maxine]

I sent all my GI films to Cleveland Clinic to get their input. I called and discussed my family history of cancer----brother (colon cancer), mother (don't know where her's started, as her whole abdominal cavity was infiltrated---we all found this out 48 hours before she died, and her brother who died two weeks after she did of colon cancer. My Aunt (mom's sister) died of brain cancer in 2003.

The coordinating nurse for the GI dept. at the Cleveland Clinic was concerned with family history. I told her the testing for lynch syndrome came out negative, but she asked how they tested me. She seemed skeptical, like maybe the testing wasn't done properly. I told her I have not had a colonoscopy yet, but I did have a lower GI with air and double contrast. This is what the local GI doc decided to do due to my other health complications. He ordered the testing, and I had this done in early 2008. An upper GI was scheduled to looked at the large diverticuli in duodeum---it's 5cm. The tests results of that said large diverticuli....nothing more.

The tests results for the lower GI said multiple diverticuli in 3/4 of colon, only sparing the ascending colon. MY GI doc said this was a lot, and said it was probably due to the EDS. When I went to the EDS study in April 2008, I took what records I had, and she saw the film of the lower GI. She said I probably have inflammatory bowel disease, and that my fingers were clubbing. I said this was just the way my nails are shaped. She didn't agree, and said they were clubbing. I told her I never get diarrhea, but I'm constipated a lot. She said I don't necessarily need to have the diarrhea with inflammatory bowels disease. She said I should get a colonoscopy.

I had a recent thoracic MRI of my spine, but it reported multiple liver lesions in right lobe--(most likely hepatic cysts). No call was received for PCP about this, and when I went to my neurology appt. at the cleveland clinic the doctor saw the thoracic spine MRI and asked if I was having digestive problems. I said no more then my usual---I suppose I do get full really easily. I've had bloat and discomfort for many years, but never intense pain in any area of my abdomen. I just have trouble digesting bulk foods like wheat breads, oatmeal, certain berries, and definately can't have corn. However, I need my fiber, so can't avoid the wheat breads.

Once she got my records and reviewed them with the GI docs, she asked me how they knew it was only diverticuli in my colon. She asked some other question, and then said it's better to talk with the GI doc, and made an appoointment. She said it would be better then trying to communicate over the phone. She seemed to avoid talking about the films I sent to her. THIS IS SCARING THE YOU KNOW WHAT OUT OF ME! I've had a liver cyst for years, is this the same thing? Or is something alse going on?

As you know I haven't been taken seriously about any of my spine issues from the CC. Not that they're bad docs in neurosurgery, they just don't understand the corelation between EDS and spine instability. As you can see by my signature line I have instability at the C 1-2 joints (cervical cranial instability) CCI. I recently had this confirmed again by orthopedic surgeon. If NIH didn't confirm is also, I wouldn't continue to find a NSG to help me.

I need the documentation of the CCI so I can be handled carefully during any kind of invasive testing. They also need to know about my POTS/ANS dysfunction

The GI coordinating nurse asked for records on the EDS, and both my EDs doc's office and NIH said they would fax the records. I will be going on Tuesday, and I scared, scared, scared. What does this doctor see, that can't be discussed on the phone? My mid back hurts so bad----it's it really something in my guts spreading to my mid back? This back pain really messes with my head. We have a new tempurpedic bed, and I can't even handle this BED. We have to return it. Today is the deadline. I tried it for 90 days, and it's not working out-----it's too hard, and it pushing my ribs into my thoracic spine, and causing my neck to subluxate more. We even pought a tempur-pedic pillow------not working out.

I just want to be cleared of cancer.............I have trouble even typing the word. On Tuesday I saw Gran Torino which was the last movie my brother Joe saw before he died. He died less then 5 days after that. I couldn't control my crying after the movie....I went into the bathroom and layed on the floor face down just losing control...... The character in the movie reminded me of my brother in some ways, and it just shook me up so badly.

There have been so many obsticles in the way of getting the colonoscopy, and this is why the lower GI was done. they didn't seemed concerned with the results other then the diverticuli, and they didn't even seemed concerned with that. I even went to the surgeon to discuss having a colonoscopy, and she said my lower GI was OK, and asked why. I told her about the NIH doc, and how she thought I should have one becuase she suspected inflammatory bowel disease. She agreed to order one, and she even set up an anesthesiologist and an operating room to watch me more closely. I had the pre testing, and was ready to go. Then I got a sore throat---this was early 2009. I had streap throat in Dec. I thought it was back. I callled the office to let them know I had a sore throat, and my colonoscopy was scheduled for the next day. They had to cancel it.

Meanwhile, my brother got much sicker, and he passed away the following month. A couple months after this I went to my PCP and said I need to get the colonoscopy done, and he thought I should have a virtual colonoscopy becuase he saw my BP drop quickly, and has seen my decline with the spine instability and POTs issues. He said I wasn't stable enough. Then when the prep was double of what the prep is for regular colonoscopy, he said I had to do it in a hospital. I told him they dobn't have a virtual one in a hospital. I went back to the surgeon, she said let's wait, there's a new type of fecal testing that detects bleeding from polyps. She said a lower GI should be done every three years, and so did my brother's oncologist. This test doesn't see small polyps. It's approaching three years.

I just want the colonoscopy, but don't want it here, as they seem a little afraid of my complications. My local GI doc won't do it at all.

I'm in so much pain in my mid back, and of course my neck, but the mid back pain is so intense that I have become limited more, and pretty much house bound.

Please pray that the C word isn't found.

Maxine :0)

[lieze]

I think it's probably normal to have the nurse want you to discuss this with the doctor himself and probably a good thing. When I got back results of an abnormal echo the office staff got it all wrong and after I spoke to the physician and an internist they said there was nothing wrong with my echo. So unfortunately you'll just have to wait to get in to see the GI doctor and just because they want to see you doesn't mean it's horrible news. Just makes us as nervous as heck!-waiting to find out. I am still waiting for my appt with an endo at Cleveland never has come.

I hope it all works out for you. I know you are having pain so it makes you worry more I hope they can get you help with that pain.

We got the knock off temperpedic bed and it's hurting both of our backs. It's the Sealy brand?

I'm not sure it's the best thing for back pain sufferers. I think all of the Sealy Posturpedics I've gotten are better than this we just notice after about 5 years or so they don't support our backs in the way we need here.

Hang in there.

lieze

[arizona girl]

Maxine, I know this is scary, but you are finally going to see doctors that should be able to do right by you. I recently had to have a breast biopsy, it took two months of going here and there before I finally got my results. They were just fibrocystic micro calcifications, not early cancer. The biopsy wasn't lovely, but it was the wait to find out what it was that was stressful. In my heart I knew they weren't going to find anything and they didn't. The delays are what get you, because your mind goes to dark places if you don't take charge of it.

You do have good cause to be concerned with your family history, I can see that. I decided though that I wasn't going to go there until I had a test showing me I had a reason to go there. No need to go there until you have a concrete reason. You are strong and have been following your instincts to push to have this done the way you think it should be. You know in your heart what is right and even if it is hard and takes longer to get there you stick to your guns girl. Don't give up now, when your answers are finally on your doorstep. Keep on pushing through you can do it. Finding someone who hears and sees you is a blessing, this nurse is that person, now things will move along faster. It took me two years to get a tilt table test done and once the test was positive, finally the doors to treatment flew open and I am now getting plasmapheresis for small fiber neuropathy and I am noticing changes. It has taken over 20 years and different diagnosis to finally get to the one the connected all the dots. Also you can have more then one thing going wrong that need to be managed together.

I have had colon issues too! A year ago August my colon ruptured and I survived without surgery. I waited four hours to go to the hospital. I was having sharp pains that came and went. It took a nurse on my health plans nurse line, to tell me that's not normal, go to the ER when she heard me moaning during the pain. So don't use pain as a tool to decide if it's bad enough. I think our judgement on how painful something is, is blunted probably due to nerve damage. The fact that it is hurting more then usually is enough to pursue it. I had a lot of symptoms for almost two years before the rupture and no one listened to me. Last Oct I finally had laproscopic surgery (more then a year after the rupture) to have part of my colon removed. Though the rupture had closed, it kept getting reinfected. (they are keeping an eye on your white blood count?) The surgery went well my doctor understood about the autonomic dysfunction and they properly addressed those issues. Possible cancer in the colon should not be the only thing looked at as diverticular disease of the colon can rupture and cause death if it isn't taken care of properly. You may benefit and feel better if some of the colon is taken out. It is amazing what they can do with laproscopic surgery. It is so much less hard on the body and you recover so quick. I was driving a week after they took out 10 inches of my colon. I also haven't had a return of any of the symptoms I had prior to the surgery and a least that part of my body feels so much better.

So I'm going to pray that they can connect all your dots so they can start treating you in a way that your life and health are better. Here's a big, big hug!! Tuesday will be here before you know it. Believe this time they will get it right! Let us know how it goes when you can.

[Noreen]

Maxine-

Praying for you, hon. It is so hard to have to bounce back and forth between all the specialists - I told the last one that if being treated like a superball would cure me I must be totally well. (the line was a little funnier in delivery)

Re: the bed. When I was a faciliator of my local chronic pain group, I would always ask about new beds - even Tempurpedic did not work for all chronic pain sufferers. Select Comfort had the best overall response- the only caveat with that is don't buy a full size with one air bladder. I got mine when I was 8 months pregnant and it made a world of difference. Now I am downstairs on an adjustable aerobed mattress with a 4 inch memory foam topper in an antique four poster bed and my husband has the Select Comfort. Adjusting firmness in the middle of the night is possible with either.

I'm a bit confused about the thoracic pain - is it in the spine from the ribs moving and with inflammation like costochronditis. Or is it in the spine like getting hit with a tiny mallet. Or both?

You are doing all you can - try not to dwell on it if at all possible. Let go and let God.

Take care,

Noreen

[Maxine]

Thank you Lieze and Arizona girl------

I'm nervous about all of this, and also because I've been in a POTS crash of sorts, so any testing will be difficult. I'm hoping they will take my other health issues seriously, and will do testing with caution.

Arizona girl----unfortunately 3/4 of my colon is diverticuli. I guess it depends how bad it is-------weather or not they would decide to remove part of the colon. Right now, all I know is there's a lot of diverticuli, and the doctor doing the EDs study thinks I may have inflammatory bowel disease----this was in April 2008. I did try to get the colonoscopy done as I said, but I got sick that winter with streap throat, and thought I had it again the day before I was supposed to have the test. I should have gone that summer before viral season hit. I waited until fall, and in early 2009 my brother took a sharp decline right after my colonoscopy was cancelled. He passed away the following month. Then my PCP got involved and said it was too dangerous for me in the state of heath I'm in. My PCP and the local gastro doc had fears of my low BPs and upper neck instability. My gastro doc said my EDS probably cause the extensive divertiucli.

Maybe that is why the GI doc at the Cleveland Clinic is interested in my EDS records. She wanted them before scheduling an appointment. She didn't seem concerned about receiving other records on my spine instability, POTS, ect.

I'm very concerned about breathing issues, as my breathing is difficult when I'm awake, not to mention the apnea. My geneticist thinks my apnea is central sleep apnea driven by brain stem syndrome for the instability on c1-2. The gastro doc needs to understand this, as this will affect the sedation process for colonoscopy.

I don't know how much the spine and POTS issues are affecting my digestion, but clearly my EDS is doing something with my intestines. Although I'm not thrilled with that, I hope this is all that is wrong with my digestive system.

I also hope the small lesions on my liver are just what the radiologists thinks they most like are-------hepatic cysts which are benign.

Thanks again for your support----you are both very thoughtful----

Maxine :0)

[Maxine]

Thanks Noreen.

MY theory is my ribs are pusing into my thoracic spine for the firmness of the bed. We just decided to buy a cheaper restonic bed for now, and use the remaining credit to buy a couch....

I hope my thoracic spine pain improves with the different mattress.

Tuesday I see the GI doc at the CC. Monday I see regular GI doc. I'm keepin the appt. to aske his opinion on the liver lesions, and also on the rest. He definately won't do a colonoscopy with my issues. The Cleveland Clinc will, but they still wanted the EDS records especially...

Thanks for the information on BEDS. We'll be doing a lot of research on beds, and that will help.

Maxine :0)