When Were You

Sorry for my last post - was typing it on my phone.

I've called everyday since Tuesday (when my tests were). No word yet.

My dad has been asking me to been seen at the Cleveland Clinic/Mayo Clinic/etc. since all his colleagues seem to get "fixed" there. He doesn't like the idea of my colon getting removed. Neither do I, but as much as I've read it doesn't seem like there are any other options.

Since he agreed to pay for my airfare/hotel/car I figured it couldn't help to get a second opinion. I've decided to go with the Cleveland Clinic since my insurance will cover it.

I'm from Atlanta so I believe they're fully capable of helping me here.

Pretty sure there is no nerve damage, but I feel like I have a rectocele and the colonic inertia. I'm praying that Monday there will a photo call from my doctor's office.

Dr. McCaffrey. I first went to Dr. Bagh and he quickly pushed me off on Dr. McCaffrey since he's semi-retired and only seems to do colonoscopies which I'm well past that.

Small world :)

After six calls I finally got someone to call me back... only to tell me to schedule an appointment to discuss them this Thursday. What a pain.

On March 9th I had a total protectomy and a colostomy installed. I have dealt with Crohn's disease since I was about 10, I was finally diagnosed at 18. It was rather mild at first but very quickly got very very bad. I had a scricture and numerous skin tags and abscesses. I developed a resistance to Remicade after three infusions (just long enough to start feeling better only to have it all go to hell).
I spent the last year with a stricture that brought the width of my colon to about 1/4 of normal. I didn't even know what it was but I was taking triple+ doses of Miralax daily and had to push until I though I would either pop some blood vessels and/or pass out just to get anything to come out. It was terrible, I hadn't had sex in forever (my poor husband), I felt bloated and horrendous all the time and was taking Norco like candy just to be able to function through the pain. When I went to see my doctors, I would mention surgery and they would usually just shy away from it and avoid it saying they didn't think it was right.

Well, I was done with that nonsense when I was miserable through a cruise in the Caribbean I had been so excited about. At the end of Jan, I went to my surgeon and BEGGED for surgery. I told her I was ready and she needed to help me. I begged and cried like the little girl I am and that day they set my appointment.

After the surgery, she told me she will often wait until the patient is in the spot I was in before doing the surgery because she needs to be sure the patient understands the choice they are making. Sounds cruel, but I really understand that until I was at that beg/wail point, I wasn't ready.
She also told me that I am tied for second place as the worst case she had ever seen! Also, my GI- who is ancient and has been practicing for 50 years, told me Im the worst he's seen after a sigmoid last year. Go me, I never did anything half-assed I guess.

Snuggle: you need a second opinion (or maybe this will your third or fourth) at the most well-known teaching hospital you can get to. I don't care if you have to drive 10 hours to get there or stay in a motel for a week to get all the testing done. Get thee to the Cleveland Clinic, U of Chicago or Mayo Clinic. Your situation is ridiculous - there's no reason for this to go on any longer buddy.

Snuggle, I am going to run my bus routes in the AM...jump off my bus and head down to Piedmont Hospital and hope to get there in time...then I am off again to try and make it back to my bus at 1:25pm....so, no time for lunch tomorrow....

Where is your doctor? It would be awesome if we could get together one day though.

Went in today.  Got another issue - a rectocele.  Watched the video of it.  It was VERY obvious I had it. 

Guess I'll be going in for Biofeedback for 6+ weeks.  Anyone have any experience on that?

Depending on the results of that - I might get surgery for my intestine or not.

Time to make a Cleveland Clinic appointment - any recommendations for colonic inertia?

Snuggle, did you see my defogram pics? If not go to flickr.com and click on people. Then put in my email address, [email protected] and the pictures will come up. I want you to compare my defogram to yours...

As for comparing - mine looked more like this on the left: http://www.flickr.com/photos/uberdesigned/4582390631/ as opposed to what I've seen from images. Perhaps it is because I was sitting (duh) and the diagrams always refer to someone standing. Kind of like this I guess: http://www.jrsmithgynaecology.com/PICS/30.gif

Pelztier86 - I understand what you're saying. I'm getting another opinion!

Happy Cinco de Mayo! I was sipping on some Miralax earlier. :)

We should start a monthly get together for all of us Atlanta folks. I'd say "support group" but it doesn't sound as fun as meeting up for food :)

NewShinyCD, sorry it took me so long to get back to you...I see Dr. Jay Singh at Piedmont Hospital. He is my 3rd colorectal surgeon and I liked him, his ability to just sit and relax and talk to me at length. He answered all my questions and never seemed in a hurry. He is also very knowledgeable. He ran his own set of tests...now, this took over a year to accomplish because I work during the school year, so, it was really my fault, not his. He doesn't call you back with test results, you have to schedule a follow up, but I am okay with that. My case is unique and there aren't many doctors that see a patient like me with so many different issues, colonic inertia, rectecele, rectal intussusecption, and anismus. The other 2 doctors only wanted to deal with the slow colon and did not seem to care that I had a SEVERE and life altering outlet problem and just brushed me off as being a total nut job. 1 of them even accused me of causing my colonic inertia by taking too many laxatives. I was in tears when I left his office.

So, anyway, sorry I rambled, just wanted to get back to you.

Snuggle, when are you going to CC? I am so excited for you because I think they do their own tests???? I went to my colorectal doc Thursday and we decided surgery was my best option. He said I have a rectecele, rectal intussusecption, and anismus...he is going to go in and remove the intussusecpted part of my rectum, remove my sigmoid colon, do a rectopexy, and then hook me up to a bag temporarily, an ileostomy...this will allow the site to heal and hopefully relax the puborectalis muscle.

Snuggle, this is really no way to live is it? I have an excellent job for these issues. I get up at 4:45am and go to work...I am home by 10am. I come home, eat if I am hungry, drink lots of miralax, then try to have a bm. I usually stay in the bathroom until 11:30am...I then nap for 1 hour! I am up by 12:45pm and I go back to work until 5:30pm. I then come and stay in the bathroom for a couple more hours!

These bathroom visits do not produce much of a bm, but I have found that even getting a little bit out helps me with my discomfort. I take mega mega doses of miralax on the weekends and as of lately have added senokot or philips milk of magnesia...UGH, just typing that word makes me want to gag.

I ate subway today and it made me feel very sick...so, I took 2 zofrans, 16mg total, and that nipped the nausea! I can't stand to be nauseas and will take 2 zofrans even though the prescription directions says 1 every 8 hours. Luckily, the zofran does not make me sleepy, but will, at times, give me a headache. I would rather have a headache anyday over being nauseas.

If you are having a difficult time working, maybe you should focus more on emptying on the weekends like I do??

You know, my doctor also said he would not remove my colon until my outlet problem was resolved. I wonder if we see doctors in the same practice? Did you notice if you saw Dr. Singh on the sign? He is located at 35 Collier Rd Suite 475!