Intense pain during and after peg tube
I (18F) was diagnosed with stage 4 ewing sarcoma about 7 months ago. I have been undergoing the standard treatment for this, consisting of chemotherapy every two weeks and radiotherapy for 6 weeks (that I've already completed)
My question is related to a peg tube that I had to have inserted because my esophagus was so damaged I couldn't eat properly. We tried a tube through the nose first but it was so uncomfortable that I was just miserable the whole time, so I eventually got the surgery for a peg tube.
Now, because of chemo my wounds tend to heal slower, so it was expected that it would take a while for the peg tube wound to heal. While it was uncomfortable, in the beginning all seemed well.
However, after about two months, I started having extreme cramps around the peg tube area. It was genuinely unbearable, and would last for anywhere from a few minutes to half an hour. Opiods barely did anything to help. I couldn't sit up or walk around since that seemed to trigger the cramps, but sometimes they would just come randomly.
I went to the hospital pretty quickly with my parents. I got an echo done of the area around the peg tube and while it was found that the peg tube was inserted a little crooked, it didn't explain the extreme pain I was experiencing. I was also checked for infection and that also wasn't the case. Eventually I was just sent home.
After about 2 weeks it seemed to get a little better and I thought it was over, but the cramps came back not even a week later. I was examined again and still no cause could be found. My surgeon just kept telling me to "give it more time"
After trying that method and still being in pain all the time, I eventually just begged the hospital to remove the peg since I was in so much pain. They were hesitant at first but eventually relented.
So now it's been out for about 3 months, and the wound has closed, and the scar looks fine. While the cramps completely went away (thank god) I still get little periods of tenderness and pain around the area, though nothing major.
I still don't have an explanation for why I was in so much pain from a (relatively) common procedure. My mom works with throat cancer patients so she sees peg tubes all the time, and she's never seen anyone have similar symptoms to mine, and same goes for the hospital staff.
I just wonder if anyone here might have a theory on what could have been causing this, or if they've seen it before. Thank you in advance.