Cleveland Clinic visit update

Went to the Cleveland Clinic this morning.  Doctor wants to run MORE tests.  Small bowel motility and delayed gastric emptying.  He obviously doesn't know what is causing this.  He worries that my whole system is affected and surgery would not help it.  Once again, no sympathy/solutions for my symptoms "keep doing what you're doing."  Uh, gee thanks.  More hours in the bathroom.

Supposedly I can get these new tests done locally through my regular GI doc and then send everything up to the CC.

Any Google terms I can search for having everything affected? 

Maybe once the doc gets the results of those tests he'll be in a better position to advise you - because even though the CC is a world-class institution the doctors there don't have ESP. Good luck!

I had one or two markers in my ascending colon, more in my tranverse colon and descending colon and some down by my rectum.

He said I had colonic inertia at that point. Got one more test tomorrow.. probably won't get the results until the end of the week/early next week. Then I have to send the stuff back to Cleveland and make a telephone appointment.

I can't get into biofeedback here - too backed up (pun intended!).. they're trying to see what they can do.

I WANT it out! :) 2 gastros couldn't help. First surgeon shuttled me off to more of a lower GI person. Then she said 50% chance. Ran tests. She said she wants to fix my rectal issues first.. then I went up to Cleveland and he wants to run 2 more tests (in process) - he thinks my whole system is messed up and there is no need to take it out. I don't think the whole system is messed up.

Such frustration :(

Where are you located?

My parents (I'm 25) are pretty adament about getting multiple opinions - which is smart, but I think I know my own body sometimes a lot more than the doctors.

After these rounds of tests and if I can't get into biofeedback for awhile, I'm going to demand surgery.

Nope. Not in college! Graduated over 3 years ago. I'm working with my mortgage and car payment. I'm ready to tackle more and don't want this holding me back. I'm tired of playing on the sidelines.

Thanks for the comments today.

suebear
So you had surgery, did they hook you back up to your rectum?

I have a J-pouch on the inside hooked directly to my rectum is why I ask...

Leslie

Sue your exactly right, are you the same way?

Back from my gastric emptying test. They should give you a Xanax before laying down for two hours in the machine. Ugh. The chunks of "scrambled eggs" were not exactly appetizing, but palatable enough that I ate them. I wonder what people do for egg allergies. I rarely buy them - only for baking purposes.

Called about my small bowel test and everything looked normal. yay!

Now if my stomach proves to not be affected by this than I can go, "ha! told you so doc."

I can't get an appointment for biofeedback until August (if I can even get on the schedule). I left my local colorectal surgeon a message and she's in surgery today so maybe tomorrow I can say I don't have any small bowel/stomach issues and I can't get biofeedback for months. What's next, doc?

I hope the Cleveland Clinic has some alternative. Maybe I can go for the botox in the mean time?

Looks like the main thread is closed. Since I'm a a newb I'll wait until it opens back up.

Snuggle, they only closed the thread because it was too long. Look for the new thread, titled total colectomy part 35.

Oregon is a beautiful state.  A friend of mine suggested we move there in a year.  I told her I have to fix my health problems first!

I called my local gastroenterologist's office this morning.  The nurse wouldn't tell me the results of my gastric emptying study which means it isn't "negative" (she'll tell me if they are negative).  Who knows what else is wrong with me.  Seems like my large intestine and now my stomach is messed up!  I'm not entirely suprised.  I do vomit (not tons) after some meals and it isn't heartburn.  However I definitely don't have the weight loss thing.

The nurse tried to schedule a telephone appointment with me for tomorrow but I have another appointment I can't miss (meds refill).  I requested an email to be sent with the results.  Not sure if the doctor will do that or not but the nurse did leave him a message.

So who has stomach AND large intestines problems like me?

Janie on the total colectomy board has gastroparesis, which is a slow stomach....Go to total colectomy board, part 35 and ask her about it. I actually think there are many of the women that post there that have a slow stomach....

Well, she had the colon removed, but still has to take miralax....so, slow transit even with the colon removed...BUT, she said she still feels so much better.