Wednesday, May 6, 2015

GI Conclusion (We Think...)

Medical Update:

If you don't know I've been having a lot more GI problems. I've always had issues with my intestines. Ha, that's an understatement. I've had almost 25% of my intestines removed over the years. It started at birth! (Read about my medical history HERE).

Picture Right: I'm a few weeks old here, you can see the scarring on my stomach from the surgeries I had.

But I've really noticed more issues since 2013. By issues I mean : stomach pain, cramping, not wanting to eat all the time ( I know, crazy huh), and the ever so fun diarrhea. I use the word "issues" cause it's easier and let's face it, prettier... I was hospitalized for the bathroom issues in late fall 2013. But we think the IV antibiotics destroyed all the "good" bacteria in my gut, hence the inflamed colon (which is pretty annoyingly painful) & the diarrhea. But the bathroom problems are getting worse.. and I actually sometimes wonder if I could even work an 4-8 hour shift every day. I mean I never know which days are good days or bad. I was tired of always wondering and the stomach pain was getting worse. So I've been seeing a GI specialist.

Now if you want a pretty amazingly horrible ( In-a-I-Can't-Believe- It-Way) story, then read about the first GI doc I went to right here... But if you just want to catch up on what the 2nd doc (new & better) doc discussed at my last GI appointment, then read this post here!

So whew. After keeping a journal for 2 months, my doc looked over the food & bathroom issues, stomach pain I was having and reached a conclusion. My pancreas (because of my CF) has trouble breaking down food, which is common for CFers. Which is why we take enzymes/pills to replace the ones that can't reach our food in our body (due to being blocked up by the gunky mucus). And a lot of CFers have GI issues in the first place, we frequently get intestinal obstructions, stomachaches, bloating, and even have diarrhea issues. Quite a few have problems with Endocrine pancreatic insufficiency, which is why we take the enzymes, sometimes even need a stomach tube (in order to receive enough nutrients).

Picture Left: Post -Fistula repair after my Stomach tube was taken out.  Plus, you can see some of my intestinal scars. And after 16 years of needing my g-tube, I'm glad to be rid of it. But I still remain thankful I had it and I'm nervous without it. This post HERE explains that surgery and fiasco! lol

Endocrine Pancreatic Insufficiency is also why I take enough Vitamin D for a Water Buffalo (as Doc says) & other vitamins. Enzymes we take are supposed to make up for the fact our own natural enzymes can't work... But apparently, those replacement pills aren't working as well anymore for helping with the breakdown of fats in my body... which is the reason my colon/pancreas was inflamed in the scan, and I'm having the pain & beyond "normal" diarrhea. It's because my body is having a super hard time with Fats/protein/dairy.

So GI Specialist's next step is to test the theory specifically and for a longer period. I obviously can call him if things change or I get worse. Or if his test works, then I don't need to follow up with an appointment (he just wants a call to let him know how I'm doing). So what's the plan or test? Simple don't eat dairy, meat, fatty foods, or foods that give you gas...okay. so let's see how this is gonna work.

Pros: I love fish and seafood (Which I can eat), plus I love veggies & fruit. (although broccoli is a no-go)
Cons: my favorite foods are: Steak, Meatballs, Beef, Pork, Ham, Butter Beans, blue Cheese, Any cheese really, pudding, along with anything mango or grapefruit
Biggest con: I'm not a big bread or pasta person either, so where am I going to get my calories! UGH, I have no stomach tube anymore and I'm worried I'll need to start putting a tube down my nose at night. I hate doing that. Anyone got creative ideas?

But I'm gonna try really hard. I want to feel better. For the last year and a half it's been so bad, I haven't worked in a year. Maybe I can get my fast paced life back a bit. We'll see how it goes. Wish me luck!!!!

Gotta love Andrew, he has decided for the most part he will eat what I eat. I said he didn't have to, well except I DID think it would be cruel to eat steak at home in front of me... It smells too good when he is cooking it. haha! After my GI appointment we went to the Woodfield Mall to get my phone fixed and grabbed dinner at Joe's (but no butter sauce with my crab). lol.   Pic: Me with my enzymes & steam-pot at Joe's! 

I figured since Andrew has to spend today doing final's papers & studying, that we would just have a special birthday dinner at home tonight (he wants salmon). And instead celebrate his bday Mon night at Joe's Crab Shack & Wed at the Lewis Black Show!  I was lucky enough to win the tickets through the CF Foundation for registering the most people for my team in 24 hours. I think I had 20 people sign up that day, thanks everyone!!!! Can't wait to continue celebrating his Bday! And I will keep ya'll updated on my new clinical research at the end of the month, as well as GI progress!

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