Monday, November 1, 2010

Now What?!

A very fun reason to get home yesterday -- Trick or Treating with Tinkerbell!

Well I'm back in very sunny So Cal. It's so nice to be home, I was so happy to see the hubs and my Charlie girl. The last few days have been a little whirly.

Sorry for not updating sooner, but I've had a lot going on in my head since my appointments on Friday. I'm still trying to process everything so for now, I'm just going to list what did and did not happen and where I go from here.

First, I'd like to say that the CC was amazing. The efficiency in which they operate there is amazing. It really should be like that in the whole health care world. The GI team was able to make appointments in other departments, when I got to those departments they could just jump on the computer and see what had happened over in GI. I didn't have to fill out hours of the same old paperwork, it was great. Plus all the doctors I saw were passionate and compassionate. They all took me seriously and nobody made me feel crazy.

But with that said, I did not leave there with the ah-ha moment I was desperately hoping for.

I had my pouch scope on Friday morning (no upper GI scope though.) After three tries, the nurses finally got my IV in and then I was wheeled in, given the magic drugs and from there things are pretty fuzzy.

I only remember seeing the dr standing over my bed talking to my mom and me, not what he actually said, and then when they closed the curtain I remember starting to cry. That's it. Apparently I asked my mom three times what she had for lunch, I vaguely remember getting back to the hotel and really nothing in between. Ahh the magic of chemistry!

Anywho, Dr. GI Amazing basically said:

* My pouch looks good (which we knew, but was nice to have confirmed since I have some naysayer Drs here in So Cal who don't believe in my pouch.)
* My pouch is large, which could be the reason I have so much gas and pain from food getting in there and being trapped with all the air.
* They think the blood in my stool is coming from a suture line inside my pouch.
* No signs of anything going on inside my pouch -- fistulas, infection, etc.

So you are saying this is all good, and it is, BUT and it's a big BUT, that means no solid answer for my issues that are very real. Hence the reason for the tears. I do have a whole list of things to email Dr. GI Amazing now that my head is a little clearer, so I can have a better understanding of exactly what went on.

I also have to email Dr. Surgical Brain and find out what the radiologist said about the review of my CT scan. Plus I need them to send me my discs back.

Friday afternoon, we went off to see the Pain Management specialists. Dr. Peppy was awesome. She explained right away that the pain I have around my stoma and in the front of my right hip, is different than the pain I have on the back of my right hip down to my butt cheek area. It was nice to have somebody actually explain this. She said the pain in the front could very possibly be scar tissue/adhesion pain and really there isn't anything they can do for that. LOVELY.

But she then pressed on spot just above my right butt cheek and I about jumped off the table. She said, "yep your sacroiliac (SI) joints are inflamed. We can take you back right now and give you a steroid shot right into the joint. It may work, it may not, but it's worth a try to relieve some pain." So of course I said, sign me up and off we went.

Thankfully they gave me a nice numbing shot in my toosh and a nurse to hold my hand and explain everything that was going on behind me. Because in true Al fashion, the Dr. had a heck of time getting the needle in the right spot. She kept saying what is going on here, this doesn't usually happen, my needle seems like it's bending:) But she finally got it in the spot and now we wait and see.

So what does that exactly mean, well when we got back to the hotel (after my mom took a Zumba class, her favorite!) she was looking up how to spell sacroiliac and came across and article on enteropathic arthritis. The funny thing is that I had looked up some info on this probably a year ago, because I have a lot of the symptoms.

***This type of arthritis is a form of chronic, inflammatory arthritis associated with the occurrence of IBD! Each individual tends to have their own unique pattern of presentation and activity of the illness. The initial inflammation may be a result of an activation of the body's immune system, perhaps by a preceding bacterial infection or a combination of infectious microbes. Once activated, the body's immune system becomes unable to turn itself off, even though the initial bacterial infection may have long subsided. Chronic tissue inflammation resulting from the continued activation of the body's own immune system in the absence of active infection is the hallmark of an inflammatory autoimmune disease.***

Just to be clear, I was not officially diagnosed with this, but I'm seeing another pattern. I've had a feeling for quite a while, I may have mentioned it here, that my current main issues may not be directly GI related and that seems to have been confirmed by my trip to CC. Good news!

But here's the now what part. Dr. GI Amazing and Dr. Peppy recommended I talk to my fabulous PCP about the following:

* Scheduling a bone density test (I had one three years ago, that showed osteopenia) need to recheck to see if things have continued to deteriorate
* Have an X-ray of my hips
* Get a referral to a Rheumatologist
* Get a referral to an ENT (to discuss my chronic cough, which Dr. GI thought was caused by sinus issues)

Dr. Peppy gave me the name of a pain management doctor here in my area and also gave me a prescription for something that may help with the extreme numbness I have in my lower extremities and fingers. I need to do some more research on this before I take it.

What didn't happen during my trip that I was hoping for:

* A concrete, singular answer with a course of treatment that will definitely work (ok so maybe that was a little bit of a stretch to expect, but I still had hope.)
* An answer to my ridiculous nausea and lack of appetite problem (I'm now hoping that the ENT will say it's because of post nasal drip and that will be solved. See I still have hope.)
* A complete reassurance that this isn't all in my head (although I know it's not and the doctors really did NOT make me feel this way.) But irrationally I can't help feeling this way a bit, I know that may be ridiculous but it's how I feel so there.

I was really just hoping that we actually would be closer to a final answer and I know we ruled things out which is good, but it seems a little daunting to have new things that are totally foreign to pursue. And maybe what's most daunting is that I won't ever have an answer, I'll just have to live with the level of pain I'm in and figure out a way to still have the things I want in life within these parameters.

I do have a lot more in my head swirling around. But with the craziness of Friday, a full travel day on Saturday, flying home to So Cal yesterday and doing some trick-or-treating with our adorable god daughter, Tinkerbell -- I've spent all the spoons I have for now.

I'll be taking the next couple of days to rest, make my next appointments and continue to process.

Again, as Drew Carrey used to say, Cleveland really did Rock! At least we aren't at a total dead end yet. So I'll just carry on as usual. Thanks for following along and supporting us through this continuing windy road.


sarina1213 said...

Allison, I work for the Arthritis Foundation, let me know if you need any information on your new "discovery". We have an endless amount of information on every form of arthritis and all the autoimmune disseases that fall under the umbrella.

Take Care,

Mrs.Newton said...

Thanks for using a spoon on Tinkerbell. She really does love her Awesome Godmother Al! Here's to new answers from new directions!

Anonymous said...

It really is a lot to take in and I applaud you for handling it all so well. Hope is good and sometimes it's all we've got in the medical maze. Sending lots of care and hugs your way.

Texas reader said...

I just got a tentative diagnosis of sacroiliitis. The Dr who saw me at the urgent care center told me I could have just one episode, or it could be chronic. I got a shot of Decadron in my hip (they aren't set up to do the injections into the actual joints), Tizanidine for muscle spasms and Darvocet for pain, 4 days of Prednisone. (fyi - they xrayed my lower spine and ruled out disk problem or bone abnormalities.)

I'm planning to get PT to strengthen and stretch the muscles surroundign those joints, and if I get another "flare" will get an MRI as that's the only way to definitively diagnose sacroiliitis. I'd never HEARD of it until I saw the doc in the box.