Peg Pain

[Grace89]

I'm a week into having the peg put in...this has been absolute hell. The Drs waited until I reached a certain weight when I think they should have been watching the strength of my core muscles. I am staying so drugged to just deal with it all. The dr increased my gabapentin and baclofen to help with the spasms that I'm having around the tube. Also to take Xanax and flexiril. I can barely walk I'm on so much! The spasms and pain have been effecting my breathing so I know they are just trying to help me with that. I can't use my trilogy or cough assist because it kills me to use those muscles.
Also my case will be a little different--when my dr got in I had significant scar tissue on my diaphragm, colon, small intestine, and stomach that had to be removed due to my gastric bypass surgery. I keep thinking maybe that is why my pain is so much worse than should be expected.

 

[lgelb]

Grace,
So sorry you are in so much pain. The scar tissue could certainly be a factor. I would consider fewer antispasmodics and more flat-out pain control (opiates), unless you would have dependence issues. You might bring that up, if the regimen isn't making things better.

In re the Trilogy, the point would be for it to rest those muscles, e.g. by dropping the settings (I'm sure you are breathing more shallowly than usual) and so assisting your breathing without pain. For example, I would cut your usual max IPAP or PS in half or so and then tweak from there. Let me know if you want help with the settings.

Best,
Laurie

 

[affected]

Sorry to hear about the pain Grace.

I can say that after a tube change Chris had terrible spasms of the muscles around the stoma, and a lot of pain. We ended up having the peg changed again, this time by our regular surgeon and all issues resolved so quickly.

So I'm wondering if there was a fair bit of trauma, especially as the previous surgery has complicated things. Please do all you can using posture, heat/cold packs, conserving energy to help pain meds get you through. I would hope it is going to start settling soon.

Most PALS have a very positive experience having the peg inserted, but of course for some it is quite an ordeal.

 

[Grace89]

Oh how I wish I could have the good pain meds. In my past have had issues with codeine, dilaudid, and recently with the peg surgery liquid hydrocodone. When I take these I have esophageal spasms and can't breathe. I've always said I'm allergic to codeine and dilaudid but it looks to be more things in the opiates family. I was sent home last week and told to take Tylenol after the surgery. I called the dr the next morning and told him that wasn't going to work. I went back In and he went over options of fentanyl patches or toradol. He felt like the toradol was the safest option as the fentanyl would be a high dose. I asked him going forward what should I say that I can't have...he laughed and said no narcotics. I dread another time that I need pain medicine.

 

[lgelb]

Well, toradol is something-- did you get some? I'm not sure why the fentanyl would have to be a high dose, either. How was today?

 

[Nuts]

Oh Grace, I'm so sorry that you are going through this. I have no experience with what you are suffering, but if my good wishes help at all, you have them.

Becky