So, it's not really an improvement, but more of a trade-off. It seems as though the nasty, bitter, horrible Bentyl has kicked my intestines into motion. I have been able to keep about 80% of my food and fluid intake down, and I'm actually not all backed up like I had been for a while. I'm tolerating more and more solid-ish foods and am making my minimum protein requirements (60-80g daily) on most days. Of course, there's a catch. There's always a catch...
My pain levels are going through the roof. Especially after I eat or drink, I have this weird pulling/tugging sensation in the center of my abdomen. The pain seems to be coming from my "stomach" or maybe from where my PEJ feeding tube used to be. Some times it's just an annoyance, then there's the times where it feels like someone twanged my innards with a big rubberband and started trying to remove my intestines with pliers and a great deal of force. On good days, I can actually feel the movement of the foods I eat. On bad days, I curl up into a whiney, crying ball. The pulling pain seems to get worse if I decide to try and move around, or if I bend to pick something up. I've actually started taking my pain meds as often as prescribed, hoping that if I keep medicated it will keep the severe pain in check. No such luck. I'm terrified that I'm going to end up back in the hospital. I'm trying to stay stoic, but it's getting more and more difficult. I don't have another follow-up with my surgeon until July 11th, so I'm at least trying to hold out until then.
I do not want to go back to the hospital. I would appreciate the stronger meds, but I really don't want to spend another holiday walking around the 7th floor of the hospital in a drafty, ugly hospital gown. I really don't want another surgery, but it's starting to look like I won't have a choice. I can usually put up a pretty good front about the whole pain thing, but this is getting worse and worse and I'm not sure I can keep up the "I'm fine" thing too much longer.
*sigh*
My pain levels are going through the roof. Especially after I eat or drink, I have this weird pulling/tugging sensation in the center of my abdomen. The pain seems to be coming from my "stomach" or maybe from where my PEJ feeding tube used to be. Some times it's just an annoyance, then there's the times where it feels like someone twanged my innards with a big rubberband and started trying to remove my intestines with pliers and a great deal of force. On good days, I can actually feel the movement of the foods I eat. On bad days, I curl up into a whiney, crying ball. The pulling pain seems to get worse if I decide to try and move around, or if I bend to pick something up. I've actually started taking my pain meds as often as prescribed, hoping that if I keep medicated it will keep the severe pain in check. No such luck. I'm terrified that I'm going to end up back in the hospital. I'm trying to stay stoic, but it's getting more and more difficult. I don't have another follow-up with my surgeon until July 11th, so I'm at least trying to hold out until then.
I do not want to go back to the hospital. I would appreciate the stronger meds, but I really don't want to spend another holiday walking around the 7th floor of the hospital in a drafty, ugly hospital gown. I really don't want another surgery, but it's starting to look like I won't have a choice. I can usually put up a pretty good front about the whole pain thing, but this is getting worse and worse and I'm not sure I can keep up the "I'm fine" thing too much longer.
*sigh*
Stupid question, maybe? They can replace whole body parts - isn't there anything they can do about helping your insides? I mean, I guess I just wish they could create a stomach for you and help you out. Have you found anyone else that's had this many issues with their surgeries? And, if so, have they been able to find a solution?
ReplyDeleteI hate that you are going through all this. Hang in there but don't be too stoic. Let's not cause more pain and damage than there already is. <3
Stomach transplants exist, but they are crazy risky and difficult... not to mention the expense. I am not a good candidate for any kind of transplanted tissue since I've had so many problems healing after each of my surgeries. Yeah, I researched that already. All they can do is keep making "pouches/stomachs" out of whats left of my intestines.
ReplyDeleteMy case so far has made it into at least three medical journals and is unprecedented thus far... I seem to be the only one going through this particular flavor of Hell. Yay, me!