I really can't believe it's been over 2 months since my last post. I have been keeping busy with my girls, trying to soak up every minute of summer as I can. I am really enjoying having both girls home with me all day, even though I'm surely missing when Gianna was in school all day and I had all of that special time with Jenna. It's hard to believe in just a litle under 2 months, my oldest will be a 1st grader and my baby will be completing her last year of pre-school. I would love to have a 3rd child, but with all of my health problems, that may not be an option for me. I was truly blessed by the two that I do have and am grateful that I had them when I did because thanks to the prolactinoma I may be infertile.
My health status has remained unchanged. No good news to report. I did have 2 more hospitalizations after my last post, for the same reasons. I also had my gastric empting study done and it was confirmed I do have gastroparesis. We all knew I did, but to get treatment I needed a test to make it conclusive. I got to eat radioactive scrambled eggs and was x-rayed every 15 minutes for 4 hours to see how slow my digestion was. I hadn't eaten for 2 days prior to the test (when I'm admitted, I'm never allowed food or water) so the eggs tasted wonderful to me. Four long hours later, I still had 70% of the eggs in my stomach, so only 30% had passed. I'm being referred to the gastroparesis clinic at AGH but am just gonna wait to see the motility specialist. My only option to treating the GP is a gastric pacemaker since I'm allergic to the med they prescribe for it. And since I have the dysmotility, a gastric pacemaker may not even work for me, either.
This motility specialist I'm gonna see (the one I mentioned in the last post) believes the GP, the small bowel dysmotility and the pain I get is all secondary to something else. He had spent 40 minutes with me in my hospital room and said he thinks he can help me. I have to wait til July 22nd to see him though as he is one of 2 of these doctors in the Pittsburgh area. You even need to have a referral to even get an appointment with him. When I told them I didn't have a referral and it was him that told me i needed to come in, they had to confirm that with him first. I've been doing alot of praying that this guy can fix me, or at least put a name to what I'm experiencing.
The GP makes life kinda sucky. Veggies and fruit are the hardest to digest so as much as I love them I avoid them at all costs because I can't take the pain and nausea that follows after. I try to stick to a liquid diet as much as possible, and even blend most of my meals up at home, though I really don't eat much. I eat once a day usually and it's almost always just a meal replacement shake my husband found at GNC.
As far as my ileostomy goes, everything is fine in that department. I'm battling a nasty rash from being outside in the heat and sweating under the wafer. They tried to do a dressing with fake skin covering it to help absorb some moisture and using an antifungal powder, but that only made things worse as I was allergic to the DuoDerm skin. So I still have the fungal rash, plus a nasty rash due from an allergic reaction. My skin feels like its on fire and is super itchy. I take benadryl at night to help me sleep because the itching and burning wakes me up.
I can't wait to go back to the quality of life I had before. Granted, before the surgery I was always sick from large amounts of stool poisoning my body. And even though I'm not being poisoned anymore, I still feel the same. I wish there was a way to know before they took my colon out that the other digetive organs didn't work that well and I would continue to have problems because then I could've saved myself from having Ellie. Not that I regret getting an ileostomy because, truthfuly it doesnt bother me. But, I miss farting soooo much lol. Not the act of it, but that relief you feel afterwards. Its such a stupid thing to miss, but I do miss it. Plus, its always a laugh when you gross your husband out (i must be a 10 year old at heart lol)
I'm feeling pretty exhausted so I am gonna go lay down. I will be sure to update after my appointment with this new doctor. My goal is to keep my bum out of the hosopital untul then!
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