Life with a Flare

Certain conversations will forever be ingrained in my memory, one of them is the conversation that I had with my GI on July 9th. After erythromycin had stopped working we were scrambling to get my symptoms under controlled. Reglan another gastroparesis med (that had many scary side effects) failed to work for me and we had maxed out my dose of Periactin. I was only getting in about 300 calories a day and feeling it. To add to the mess I started not tolerating ensure. And trust me after throwing up ensure you will never want to touch it again. After increasing my dose of Periactin we gave it a few days to kick in but by July 9th I had to call and after explaining where I was at with the nurse I received a call back from my GI within an hour or two. Whenever a doctor calls you back that fast it is not a good sign (although in all fairness my GI does usually call my back in 24 hours). She asked how I was and I as always replied "okay." "Well it does not you are doin...

When I left you (a long time ago, I really need to blog more) I was getting by, just barely but still. Since then things have gone down hill and fast. About a little more than a month ago the Eythromycin I was taking for my gastroparesis stopped working. The vomiting was back and it was all sorts of horrible. We upped my Periactin dose to no avail. Next we scheduled a upper GI series with small bowel follow through to double check gastroparesis was the culprit. The last ditch attempted was trying Reglan, a drug that passes through the blood brain barrier which gives it a long list of scary side effects, but it didn't help. Day 1 With my calorie intake down to 300-500 calories a day and not being able to stay hydrated my GI decided I needed to go to the ER and be admitted. So last Thursday my mom and I drove to CHOP in Philly. We got to the ER at 6pm and I was admitted around 10pm. In the ER they started an IV and gave me a bolus dose of fluids. My GI wanted to try two days of...

There is never a dull moment in my life, although I would not mind one. The latest chapter in the saga of "Joan's Body Doesn't Work" my stomach symptoms did not go away like I thought they head. As the pain and vomiting continued it was clear they had no intentions of going away so my GI ordered a gastric emptying scan. What that entailed was eating radio active eggs and then lying on an x-ray table for 2 hours (Which my joints did not appreciate) while it took pictures of my abdomen every few minutes to see how fast my stomach is digesting food. At least I got to watch MU during the scan. I find the fact I get a sticker for radiation exposure ironic. A few days later my GI called with the results, apparently my stomach is not emptying fast enough. She thinks it was caused by the infection I had and will go away in 8 weeks (even less at this point since that was a few weeks ago). She prescribed a medication called erythromycin which I take about 15 minutes...

Two weeks ago I started to go to the bathroom like 5 times a day, all the food I was eating was going right through me. The whole things was unpleasant to say the least. I was constantly battling dehydration, and barely winning. With Gatorade on my side I survived (on a side note as a child I was only allowed Gatorade when I was sick, so I associate it with stomach bugs). By the end of the week I was a bit concerned and after some telephone tag with my GI's nurse I had an appointment first thing Monday morning.  Gatorade and I have a love/hate relationship. At my doctors appointment we decided to run a bunch of test. So far only my blood test came back but so far so good. Celiac panel was clean, no signs of ingesting gluten. No indication of Crohn's (which was the worse case scenario). My white blood cells and platelet counts were both low, so the guess at this point is I have an infection and it trigger my regular symptoms to flare. On Monday my GI also advised me to cu...

Celiac Update I started meting with the dietitian on my campus and she is really great (I actually babysit for her kids now). She had me keep a food journal, and we saw I was not eating enough. I added in snacks, I try my best to get two in a day but some days just go better than on that front. I can't seem to break 125 lb, which is okay if I maintain it but not id I lose anymore weight. I also met with Disability Services on my campus and was able to get my meal plan down graded so I am mostly cooking for myself. I was also able to get disability housing for next year so I am getting an apartment with  full kitchen. Last week I saw my GI. She prescribed Periactin to help my nausea (which is why I have so much trouble getting enough food). I am only taking one pill a day right now but we may up it this week. The reason I started with such a low dose is because it causes severe drowsiness. I was actually falling asleep in class the day after my first dose as I was drinking cof...