Today was a very hectic day. I drove to Dallas last night for my appointments today. I went to the hospital for more tests. These are only check up tests but they did conclude that the tumor in my small intestine has begun to spread. Therefore, I started my first round of radiation chemo-therapy today. This is nothing new to me, I knew what to expect. However, my session today was formidable. The entire four hour ride home, I was in pain and nauseous.
On a good note, my gastroenterologist did say I have made wonderful progress and I have been doing extremely well. So, he took me off my dairy and low residue diet. Yet, I am still not able to eat any type of nuts, berries, seeds, or my favorite, popcorn. I have a feeling these are items I will always have to avoid. I am capable of eating anything and discovering out what my kryptonites are. Now, the "fun" begins!
**Giggling under my breath - Yeah right!**
My doctor has lowered the amount of steroids and added a new type of medicine: Humira. This is an injection type of medicine and it is made to help "control" Crohn's. This is the most expensive type of medicine I have run across! I thought Pentasa was expensive, no! This medicine, without insurance, is $1,844 (for a months worth) at the cheapest place I can find. I will be applying for help with this medication in a week. Wish me luck! I am still learning about this type of medicine but if you would like some information on Humira, visit this website: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000219/
*Note: this part of my blog might get a little gross/graphic for most people*
Also, females, I wanted to point out some interesting facts I found out about today. For weeks, I have been doing everything correct and started healing. No pain, no insomnia, normal bowels, no bleeding, and so on. Though, this past Friday, I started my period and noticed my bowels completely changed instantly for the entire three days of my cycle. According to my doctor, a combo of a female with Crohn's and her periods should have bowels that tighten up and actually cause constipation. However, mine was the complete opposite affect, plus I had major lower back pains! Yes, these are signs of Endometriosis (which I have shown signs), but never actually been diagnosed. My doctor was in complete distraught. He encouraged me to see an OB/GYN.
My doctor also informed me that lower back pains can also be a sign of Crohn's; if it's Crohn's and Endo, then the pain tends to shoot up the back rather than stay in one area like the Crohn's will. I don't understand why this would be different, but ok. I was also informed that endometeriosis can cause Crohn's mini-flare ups and female hormones are subsequently related to inflammatory bowel disease (IBD). I would have never known if I didn't have the help of my friends from the Crohn's support group!
Overall, it was a productive day and I hope things start to improve soon. As for now, there is a major thunderstorm and tornado swirling around my little town. So, I must take some pain meds and head to bed for work in the morning.
1 comment:
Both Crohn's and endometriosis are an inflammatory process, so when you're on your moon, your body is going to be collecting more fluids to expel the inflammatory agents circulating in your body. Hence, it's ridiculous that a doctor would think that there would be a 'backup on the turnpike' when you're having your menses.
You need an experienced specialist who is familiar with the delicate dance between Crohn's and endometriosis. They're hard to find, but totally worth the time. :-)
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