ThatFLGuy
Active member
To say that 2025 has been hell is a huge understatement. From not fighting to get a New Gastroenterologist, only to be seen once this year, and pretty much just getting told to keep doing what we have been doing (PT and taking Miralax)
I did finally have a repeat of the anorectal study, which showed that things are worse than they were during the same test five years ago.
PT feels like I have plateaued in treatment, hence why she pushed to repeat the test from five years ago.
I went on a quest after talking to my family over Thanksgiving and started using resources like ChatGPT to get ideas.
I am going to push the issue that I need a whole-gut motility study (Something that has never been done)
PT agrees that this should have been done by GI a long time ago.
Quality of life for me sucks. I really only enjoy it when I get out and play cards with my group. But PT and PCP are not happy that I am back at the not eating when I am out of the house phase that took over my life for the first few years of dealing with this issue.
I have GI pain all the time, and it is so much worse when I eat. Truly, if I could not eat solids, I would go that way just to not have all the pain.
PT now knows that my muscle issues are worse, so she is pushing for me to get seen, but I have to call my surgery team as well about the idea of redoing the Botox shots I got before, because PT is worried about my mental health with all the pain.
I am okay when I get out of the house on Friday to play cards, but then the rest of the weekend is pure hell, which my PT is not okay with, so it is back to square one at the start of the new year.
Hope everyone else is well.
I did finally have a repeat of the anorectal study, which showed that things are worse than they were during the same test five years ago.
PT feels like I have plateaued in treatment, hence why she pushed to repeat the test from five years ago.
I went on a quest after talking to my family over Thanksgiving and started using resources like ChatGPT to get ideas.
I am going to push the issue that I need a whole-gut motility study (Something that has never been done)
PT agrees that this should have been done by GI a long time ago.
Quality of life for me sucks. I really only enjoy it when I get out and play cards with my group. But PT and PCP are not happy that I am back at the not eating when I am out of the house phase that took over my life for the first few years of dealing with this issue.
I have GI pain all the time, and it is so much worse when I eat. Truly, if I could not eat solids, I would go that way just to not have all the pain.
PT now knows that my muscle issues are worse, so she is pushing for me to get seen, but I have to call my surgery team as well about the idea of redoing the Botox shots I got before, because PT is worried about my mental health with all the pain.
I am okay when I get out of the house on Friday to play cards, but then the rest of the weekend is pure hell, which my PT is not okay with, so it is back to square one at the start of the new year.
Hope everyone else is well.
