I haven't written since my last post because I had a cold and some tummy troubles, then we lost my granny and had to go out of town for her funeral; afterwards, we have had visitor after visitor, and now I am sick again with tummy problems and sinuses. *bleh* No me gusta, as a friend from my study abroad trip used to say when something was wrong.
If you have been following my blog, are my friend on facebook, or know me in real life, you know I love food--talking about it, cooking it, eating it. Yet food is a frenemy to me.
I was diagnosed with Crohn's Disease in 2003. That first major flare-up probably lasted about two years (counting the year pre-diagnosis when I started having symptoms), and it was a perfect storm of disease when I was hospitalized as I simultaneously had a bacterial infection from visiting the Floridian beaches and ocean that summer, H-Pylori (a bacteria that causes inflammation), and a bleeding ulcer. If you don't know much about Crohn's, it is the inflammation of the lining of the colon and is often seen as an autoimmune disease because you body basically attacks itself (along with food it views as invading enemies). Someone--I can't remember whether a nurse or a doctor--described Crohn's as if you had a really bad sunburn inside your colon. My daddy was diagnosed with Crohn's in 1989 or so, when it was fairly unknown. He suffered indescribable pain that was exacerbated by his alcoholism. (On the other hand, the alcohol helped him handle his pain). When I started having symptoms and my first G.I. test came back negative for Crohn's, I researched the disease and said, "No, I do have it." Turns out, I was right.
I lost fourteen pounds in two weeks at the height of my flare-up, which would have been great if I could have gotten out of bed for activities outside of going to the bathroom for various reasons. I was in the hospital for three weeks and three days, and it could have been much longer. Except for the last few days, I was on TPN (total parenteral nutrition)--that is, I was nourished through an I.V. All I could have were ice chips. Once I was released from the hospital, I changed my eating lifestyle, avoiding such things as raw fruits and vegetables, nuts, and fried foods. (The first time I had McDonald's after changing my diet I definitely could tell a difference in my poop.)
I have had a few minor flares since being diagnosed, but they were easily treated with short term prescriptions of prednisone and Flagyl, an antibiotic that can cause you to be very, very sick if you have any kind of alcohol, including mouth wash. Thankfully I had insurance when I was diagnosed; after I turned 19, my minor flares were treated by the Student Health Center at UCA. I came close to being referred during my last year as a student, but luckily Asacol, an expensive medication covered by a prescription program, took care of business until recently.
Once Zach got his job in November, we got insurance, which didn't go into effect until January.
Now insurance is great and all, but it's still not perfect. Out-of-pocket costs can still be very expensive, especially as I have been unemployed for four months since Zach got his job at NWACC. I know, I know, it would be A LOT worse if we didn't have insurance. (As a kid, I was on ARKids First, and it covered everything, thank God. So this kind of insurance with deductibles and whatnot is new to me. I think Zach gets frustrated with me because I don't know what questions to ask when it comes to payment plans. *lol*) We were so afraid that my Crohn's would not be covered because it was a pre-existing condition, and fortunately I had not been treated within the year before our insurance went into effect. Why is it that the people who need insurance the most cannot access it? I could go on and on with the problems with healthcare and attitudes regarding healthcare and the problems regarding said attitudes. But I won't (at least not today).
Crohn's is something I will always have, so it's important for me to always be under a doctor's care. (It's also important to go to your dentist. I'm paying for years of skipped check-ups now.) That just wasn't possible when I was in school, even when I was working. My mama has always told me that good health is your most important asset, something this country doesn't seem to prioritize. Thankfully, with Zach's insurance, I was able to find a new gastroenterologist here and get started on maintenance meds. I started having a few problems after stomach bug during Thanksgiving that continued until my primary physician put me on a short run of prednisone and Flagyl in January (January 4th, to be exact--I wasted little time getting into a doctor once our insurance went into effect.) Then she referred me to Dr. Stagg. (BTW, Dr. Stagg reminds me of Dr. Stengel, my undergraduate thesis advisor. *lol*)
I had a colonoscopy in January. (Oh, the joys of that!) It came back with fairly good results; I had some inflammation in a few spots, but nothing major. So Dr. Stagg started me on Entocort, a steroid (Oh, the joys of that!), and an enema to treat my sigmoid colon, which is the lowest part of the colon (Oh, the joys of that!). I had a check-up a month after my colonoscopy, which I reported I had a lot of gas that was making me rather uncomfortable. I've never had much gas, so this was a little worrisome. I assumed that was from enema because it was a side effect. As things seemed to be going well otherwise, I got to stop the nightly enema. (Did I mention it was nightly? Oh the joys of that!) Once I finished the Entocort, I would start Balsalazide, similar to the Asacol I had while at UCA that fixed me up right except this med is cheaper. :)
The gas continued, and, after some research, I saw that gas was also a side effect of the Entocort. So I assumed it would stop once I stopped the Entocort. Well, I had about two weeks left when I started noticing blood in my stool while the consistency of my poop went downhill. (I wish I could be constipated one day. ;) So I have been checking in with the nurse. During my first call, my doctor decided to go ahead and start me on Balsalazide while I finished the Entocort. A week later, still no improvement. At this time, we decided that since my sinuses sometimes upset my tummy, as does a woman's monthly visitor, we will wait it out another week or so. (My cousin has a very funny name for her monthly visitor, but I can't remember it now.)
I have felt awful the last few days. I feel week and achy, the weather changes have flared up my sinuses, and my tummy feels the need to keep going. I start my job at NWACC on Friday, and then I start training for my part-time instructor position at University of Phoenix Saturday. We also have a friend staying with us this weekend. I am hoping and praying I get better in the next two days. Zach is out of town for a conference, so I am lounging around the house and working hard to take care of myself. It's really frustrating that my maintenance meds don't seem to be working and that I felt better before I started on them, which means I may be going to see Dr. Stagg sooner rather than later. At least we have met my deductible, so we shouldn't have to pay anything but co-pays now. But who knows? Every time we talk to Blue Cross Blue Shield they tell us something different from the last person with whom we spoke. *argh*