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Monday, March 11, 2013

New GI

I talked to Dr. New Jersey on the phone later in the day after my ER visit. Without going into detail, this conversation sealed the deal - I decided that it's time to move on to a new GI doctor! I saw Pain Management and my wonderful PCP later in the week, and we are all in agreement that I need a different GI doctor. My PCP helped me come up with a new local GI doctor to try.

I saw the new GI Dr, Dr. FancyPants. I had seen him when I was in the hospital back in 2008 with a bad flare up and pancreatitis. I remembered him being a very good listener, which I really appreciated, as even then, my illness had a number of unusual components. My dad referred to him as the "Cool Doctor" because he had these really trendy glasses. Well, he hasn't changed in attire nor in personality. He walked in wearing a turqouise and hot pink paisley shirt with blue striped buttons and slightly flared gray trousers beneath the requisite white coat. He listened to my (extensive) history and kept remarking, "Wow." He was impressed by my complicated nature of my health issues, but didn't seem overwhelmed. And he actually had some ideas about what's going on with my stomach.

He gave three possibilities: one, I had a stomach virus (extensive testing for bacterial, protozoal, worm, and fungal infection - I kid you not - was negative). He said that even someone with IBS (Irritable Bowel Syndrome, NOT to be confused with what I have, IBD, which is Inflammatory Bowel Disease - IBS causes pain and symptoms, but does NOT cause inflammation or damage to the intestines like IBD) can have a tough time getting over a stomach virus, so someone like me with such a compromised GI tract could take months to return to normal after a bug. He said that some very nasty stomach viruses have been going around this year (a fact to which I can attest, as a dear friend with IBD wound up in the hospital critically ill from a bug over Christmas) So that's one possibility.

POTS!
Another possibility is that my stomach issues are related to my POTS (Postural Orthostatic Tachycardia Syndrome). POTS is a dysfunction of the Autonomic Nervous System (the ANS). In addition to controlling your heart rate and blood pressure, the ANS also regulates your entire digestive system. So it doesn't seem far-fetched that a worsening of my POTS could be behind the recent increase in belly pain and issues. I had never really thought about that before, but it made sense. I usually have to educate my doctors on my POTS, so it was REALLY nice to have a doctor who knew more about POTS than I do!

His third conjecture is that a lot of my symptoms are caused by scar tissue and adhesions. He thinks that I am getting partial obstructions almost constantly, causing pain and cramping. My intestine "push" harder to try to get everything through the narrowed, twisted areas, so when things finally break free, I have, um, a lot of output. There's not really much that can be done for this - he remarked that clearly the surgeons are extremely hesitant to open me up ever again (he said that having someone to sit in the hospital with a bowel obstruction for a week without doing surgery is pretty hard core). So I continue with the dietary restrictions (I basically can't eat any "roughage" or I am guaranteed a blockage - although I have had blockages even when on a liquid diet) and try to minimize pain meds, which can slow down the gut.

I also have the issue of dumping syndrome, where everything goes straight through me. My intestines just can't seem to pick a speed - they are either in overdrive or stuck in a rut, spinning their wheels. ;) When that happens, I have to take meds to slow down my gut! So yeah, my body's nuts.

He said the next step would be to repeat some testing, but since I'm improving, he really prefers to not put me through that right now, and it most likely wouldn't even yield any useful information. The good news continues to be that the testing I had done in early January showed NO inflammation in my small intestine, so they are not worried about Crohn's! Overall, since I felt like my stomach was slowly doing better, he asked if I'd be okay with doing nothing right now, and I agreed. Dr. FancyPants has an infusion center that's about 3 miles away from me... I can get IV fluids there between 9-5 M-F instead of having to go to the hospital, which is wonderful! He did want me to take a supplement of potassium, since mine has been running low because of dehydration.

I am so glad that this appointment went so well - he didn't really DO anything, but he listened to what I had to say, didn't brush aside any of my concerns, and didn't give me any glib answers. An added bonus is that he's geographically very close to me (I drive close to an hour to see most of my other specialists).

This is Potassium...
I did have some issues getting the potassium supplement he prescribed - it's extended release. Remember how I am missing 7.5 feet of intestine? I cannot absorb extended release meds! *sigh* I had to call the office a couple times and it was a headache trying to get the prescription changed. After explaining the situation and leaving messages with a few different people, I got a call back from the nurse saying she would switch the brand. I googled the name she told me... and it's extended release, too. I told the nurse this, and she said, "Really? Oh. Is that a problem? Can't you just take it and hope for the best?" Um... no.


...this is NOT Potassium!
She called me back told me that Dr FancyPants said they couldn't get it in any other form, so if I didn't want to take the pill, I should eat foods high in Vitamin K and get a Vitamin K pill from the health food store. I asked her if she meant potassium, and she said, "He said that they are the same thing." I called her bluff... I politely told her that vitamin K is NOT the same thing as potassium (whose chemical SYMBOL is K...), and I am on an anticoagulant whose activity is antagonized by Vitamin K, so I was pretty sure Dr. FancyPants did NOT say those things.

She again asked if I couldn't just try taking the supplement, because otherwise she'd have to, like, call the pharmacy and ask the pharmacist about alternatives. I told her that the situation wasn't urgent; I didn't need the supplement today or tomorrow, but it simply does me no good to take extended release medicines due to my lack of colon, so I'd appreciate it if she would just call the pharmacy. I was mildly irked that I had to ask her to do her job, but to her credit, she did call the pharmacy and get the situation straightened out within the day - the med comes in a powder form! Hopefully it will be worth the hassle.

Thankfully, things have calmed down in my tummy! It's been a very slow process, and it's not quite back to normal, but things are SO much better than they were a few weeks ago. Praise God! Of course... for the last several days, I've been struggling some with intermittent blockages punctuated by dumping... it's ALWAYS something! Haha. But overall, things are much better in the GI department, so I am very thankful!

Hannah ;)

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