Please Read

The following blog posts are based solely on my personal experiences. I am not a Doctor, Nutrition specialist, Comedian, or Professional Baseball Player. If you have a health, nutrition, humor, or baseball issue please seek a PROFESSIONAL.

Favorite Bathrooms

  • Home Sweet Home
  • When I'm @ someones house: the one farthest away from the crowd
  • @ the Mall: Macy's (as public bathrooms go this one is very nice)
  • If I can't make it to Macy's...JC Penney's will have to do (they recently remodeled so it is better than it was. I don't know why they didn't ask for my input???)
  • Monterey Bay Fish Grotto in Monroeville has a great bathroom
  • Ponte Vedra Inn and Club, My fav place to vacation, their rooms have the most wonderful bathrooms

Helpful links

  • FREE Crohns Disease Support Network
  • Find a Toilet
  • Medical Alert Restroom Access Pass

Sunday, December 19, 2010

Think Again

(This post will appear on both my blogs…so if you follow both you only need to read this one today :)

The bad days after chemo continued with all the aches and pains and constant diarrhea, bleeding, and fistula problems. On Sunday my temperature was back up to 101.5 and my heart rate was high. My hubby called the oncologist on call and he of course wanted me to go to the emergency room. So off I went thinking they would draw some blood, check me out, and send me home…Think again!!! Not only was my temp. and heart rate elevated, my blood pressure was high also. Their major concerns were of course infection. They put me on a heart monitor, drew lots of blood, started me on fluids, and did a chest x-ray. The next concern was “did the chemo flare the crohns?” If you haven’t guessed already they admitted me. They said they wanted to keep an eye on me for the next 24 hours. They gave me an IV antibiotic and settled me into a room and hung an isolation sign on the door…no germs in…no germs out! They increased the dose of Flagel. Clear liquids only and a pelvic CT Scan in the morning. They also hung another sigh behind me to alert other nurses

A precaution due to the lack of lymph nodes in both upper arms

I got absolutely no sleep that night. My IV pump (aka Fabio)

KAS don't look at the next picture :)

was SO LOUD. If I had something nearby resembling a baseball bat I would have beat the crap out of it. Around 4:00am I finally just turned the TV on. Early Monday I had my CT Scan and was expecting to get some real food but they still had me on clear liquids. When the GI from my group who was doing rounds and who I didn’t like at all came in (not my GI by the way) she was #1 rude to my husband and #2 gave me a hard time about letting me have a general or even a soft diet. Lets see…you want the diarrhea to go away but if all that goes in is liquid then ummmm what do you think is going to come out??? Besides that I know my body better than anyone esp. someone who has only looked at me for 5 minutes. I could see if I were in pain or had no appetite. She finally agreed to let me try a general diet and if things got worse I would have to go back to liquids. So she leaves and guess what??? She doesn’t write the order for a general diet. The nurse was wonderful. She kept trying to call and get an order. Of course the beotch would not call back. Four calls and hours later another doctor from the group called back and gave her the order. He said start with a general and if I have a problem tweak it. THANK YOU. In the mean time many other doctors came in, my PCP, the infectious disease doctor, and oncologist who all agreed I needed to stay another day. My white count was high but that was most likely due to the chemo. My potassium was low so they gave me some to drink :( Now if you’ve never had liquid potassium you’re lucky because it tastes like crap. After gagging my way through I got about ¾’s of it down.

Fluids, fluids, and more fluids = lots of peeing. Hubby brought me my iPod so that I could plug my ears with Christmas music during the night (to drown out Fabio). It worked…I slept very well. Tuesday was another full day of IV fluids. Fabio and I are becoming very close…he follows me around everywhere. They are still waiting on blood work results to rule out certain infections. The GI beotch doctor hasn’t been back, just her PA who is very nice. They are leaning towards this not being a crohns flare but just a bad time with the chemo. But just to be sure they want me to have a pelvic ultrasound tomorrow…yes another night with Fabio. The fluids have been very helpful. I haven’t had any muscle or bone pain since they started them. I definitely was severely dehydrated. I slept well again with my Christmas music. Wednesday morning I went down for the ultrasound. It turns out the CT Scan showed a little something something near the uterus and they wanted a closer look. Well if they would have said something I could have told them it was probably the same little something they saw on my CT Scan in the spring which turned out to be fluid in my fallopian tube…that’s exactly what it was. The infectious disease doctor came in and said I was negative for all the infections they were testing for but thought they might keep me for a few more days. NOOOOOOOO. My oncologist came in and decided that she did not want me to have the port put in. She is going to reduce the dose of chemo and have me come in early that day and if I appear to be dehydrated again they will give me fluids and if need be more fluids between then and the next chemo. If however I have another bad time with the chemo they will probably not do anymore. Then my PCP came in and said I could go home YAY. I got myself dressed and waited for my discharge instructions and the nurse says your potassium is still low so after I get that for you you can go. NOOOOOOO…she comes back with a pill…are you kidding me…this comes in a pill??? Where was your stupid pill a few days ago when I was gagging??? I took it and then on my way to Home Sweet Home!!!

Love, Laugh, and Always know where the nearest bathroom is

Saturday, December 11, 2010

Crohns Meet Chemo

Well its been a while since I’ve posted. I’ll try not to take too long to catch you up. I’ve been spending a lot of time dealing with the breast cancer treatment which has not been agreeing with my crohns beast. Even before my first chemo I was anemic and had to have some iron transfusions. I did have some side affects but I don’t think they bothered the beast. Those treatments were followed by a very busy week which included my first chemo treatment (Mon.) The treatment itself (4 hours) went well. I was just very tired that day and the next and I had an increase in diarrhea. I figured heck, diarrhea, I can handle that. Then Wed. night I started to feel horrible, even more diarrhea now with some bleeding and the constant diarrhea flared the fistula. That night every inch of my body hurt. It was like tiny knives/shards of glass racing through my body stabbing me. The pain and diarrhea and bleeding and fistula flare continued Thurs. which was the day I had a consult appointment with the surgeon who was suppose to put the chemo port in the next day. My heartrate was high and I had a slight temperature so needless to say they postponed that procedure. Friday the muscle and joint pain eased up a little but I had bouts of nausea and esophageal spasms and stomach/intestinal cramping. It felt like my entire digestive tract was in a knot. I’ve continued to have moderate diarrhea with some bleeding off and on and occasional spasms. The fistula is starting to feel better but is still making it clear that he is there and not going anywhere. I have a call in to my GI (who won’t be back in the office till Monday) and I’ve spoken to the oncologist (the surgeon called her too) I’ll have my blood checked on Monday and see the oncologist on Tuesday. My temp. is back to normal and my heart rate has lowered. I’m hoping I’m on my way back to feeling normal (for me) for the next few weeks before I have to go through it all over again. I’m hoping that this first treatment just woke the beast up to say HEY what is going on??? Maybe the next time he will just say “oh you again” and go back to sleep. A girl can dream!

Love, Laugh, and Always know where the nearest bathroom is