I finally got my gastric emptying scans back from Temple. As expected everything; my stomach, small intestines and colon are extremely slow. They noted that I even had trouble digesting or processing liquids. I really don’t know how that works…..
Wednesday I had an appointment with my gastroenterologist in Winston. We discussed numerous things from biofeedback therapy to pulse rates. I start therapy this Tuesday in hopes to retain what muscles are left in my colon and maybe even strengthen them. (One can hope, right?) Over the past few months my pulse rate will be in the upper nineties and to around one hundred and fifteen and I will not be doing anything. He said people with GP have related issues with that so he wanted to double check just to be on the safe side and that I was probably dehydrated.
We talked about the pacemaker. He asked what Dr. Parkman’s opinion had been and what I had thought about it. To make a long story short, he said that I have three major issues; a bad stomach, intestines/colon and bladder which are all “connected”. Out of every five GP patients he sees, I am the worse; comforting isn’t!? He agreed with Dr. Parkman. It is too big of a risk to take.
I did have to go to the urologist that afternoon. About a year and a half (?) ago the whole bladder issue started. My muscles there as well as my bladder went on the fritz. I had to learn how to catheterize myself which is not nearly as hard as I thought. We had to shrink and retrain my bladder muscles. For numerous months I heard “Jennifer, you have to relax”.
I’m always watching myself, who wants to cath and retrain their bladder over? I thought I was backtracking again. He said everything was fine but that the muscles would get worse because of the GP. (Are you serious??) He had some ways to help on days when my muscles would cooperate.
Overall the day was very overwhelming when I got home and took it all in. I realized that I was not getting a pacemaker which meant no nausea relief and no broadening of the food horizon. My GI doctor did say since things wouldn’t get better to eat something good sometimes like pizza. I am going to pay for it anyway so I might as well enjoy it. I am okay with everything now, nothing has changed. Wednesday was just overwhelming.
hi i found your blog while trying to find more info. about GP b/c a lady whom i recently met at church was just diagnosed. she is still waiting to see a GI doc in a bigger city who does the pacemaker thing however i swear her GP is as bad as yours right down to the bladder thing. she can barely tolerate liquids and her bladder quit working one night so she had to go in to get catheterized. i was so surprised to find someone blogging about a case that seems so similiar to hers. anyways, i am going to continue to follow your treatment to see if your docs come up with anything. how do you keep working? you seem so amazing in your perserverance. this lady says she is in so much pain all the time she just stays knocked out on pain meds which is really sad cuz she has small kids so other people have to take them or they go to daycare. is there some kind of support group for GP? its sad how very little awareness there is for a disease that is so debilitating and devastating.
ReplyDeleteHi there. I just came across your blog. I was diagnosed with gastroparesis exactly a year ago, after months of wondering wtf was going on. What a long, strange trip it has been. I really related to your Thanksgiving post! I look forward to reading more here.
ReplyDeleteHi J.,
ReplyDeleteThat is so sad about the lady that goes to your church. I can't imagine having small children right now. She's one tough lady!
There are GP support / awareness groups and they are wonderful! When I was first diagnosed, I lived on those sites.
www.gpawarenessfund.com
www.g-pact.org
Working is a issue in itself. I fly through my vacation and sick time. I am on a temporary medical leave so we'll see what happens when that runs out.
I've never ran into anyone who has the same bladder/GP issues as I do so yes, send her my way if she ever wants to talk.
mylifewithgp@gmail.com
Thanks for reading,
Jennifer
Hi Foxy Roxy,
ReplyDeleteI'm sorry about your diagnosis. LOL yes, wtf has been my attitude numerous times. So much goes on and sometimes our doctors don't know either I believe. One of my favorite even though it drives me insane is tell the er doctor what GP is.
Thank you for reading,
Jennifer