has anyone needed a colostomy bag?

[YippeeKi YOW !!]

So i was able to make an appoinment at the end of august to talk to her for another opinion and then I will try and find someone at Standford if I cant see Dr Nguyen and talk again to the GI at UCSF about options.

That's a solid, good plan @appa !!!! Well done, and I know how hard that is to do ....

 

[wabi-sabi]

When I Iooked online I think Dr. Nguyen was at the Digestive Health Center. There may be someone else there she could recommend is she herself is full. If the Center has attracted one good doc, there's a good chance they have others as well. It's still seriously disappointing, but maybe yo could see one of her colleagues while waiting to get in with her.

 

[appa]

/i had to go to ER friday night because of really intense pain where the appendix is. they didn't see my appendix on the ct scan but said that it could be because they can't use contrast due to shortage. my labs looked good. cholesterol is higher than i have ever seen it which has me a little concerned. i have been home since and was able to sleep some. i am worried the adhesions they found around the appendix are back since they tend to come back after surgical removal. i really do not want surgery on my abdonmen with any surgeon not very skilled at dealing with adhesion's. i don't even know how much any of this has to do with me/cfs or fibro. it seems maybe more of an endometriosis issue but it is very scary right now and debilitating and i am getting really overwhelmed trying to figure out who to go to for help anymore. the doctor in er treated me like i was stupid to keep my appendix and said it is a useless organ. i was tired and in pain so i did not tell her the endometriosis surgeon felt otherwise or anything. i was so exhausted. i don't want to take ldn if it means if i have surgery they won't give me any opiods and they said they cant give any at er for anything. i just wish i could get a break.

 

[wabi-sabi]

Oh @appa this is just so disheartening. Unrelenting pain is so hard to deal with. My guess is that the adhesions are more of an endo issue than a fibro or ME/CFS issue. Wouldn't it be nice if just one thing could go wrong at once? The ER just doesn't seem to be a great place for women's health related stuff, does it?

Has your endo surgeon given you an help/advice on how to handle this? LDN has a good rep for fibro pain generally, but I'm not sure about mixing it with post-surgery opioids. If you want advice (and you certainly don't have to take it) don't make any decisions about what meds might be useful when you are in a bad place and see if there's some doc you trust to make sense of med interactions. You might end up choosing LDN to help with fibro pain and passing on surgery for now for the endo stuff. Or you might want a surgery at some point and forego LDN (if that turns out to be necessary). Seems like either might decrease your pain, even if you can't do both at once and decreased pain is a good thing.

 

[appa]

Oh @appa this is just so disheartening. Unrelenting pain is so hard to deal with. My guess is that the adhesions are more of an endo issue than a fibro or ME/CFS issue. Wouldn't it be nice if just one thing could go wrong at once? The ER just doesn't seem to be a great place for women's health related stuff, does it?

Has your endo surgeon given you an help/advice on how to handle this? LDN has a good rep for fibro pain generally, but I'm not sure about mixing it with post-surgery opioids. If you want advice (and you certainly don't have to take it) don't make any decisions about what meds might be useful when you are in a bad place and see if there's some doc you trust to make sense of med interactions. You might end up choosing LDN to help with fibro pain and passing on surgery for now for the endo stuff. Or you might want a surgery at some point and forego LDN (if that turns out to be necessary). Seems like either might decrease your pain, even if you can't do both at once and decreased pain is a good thing.

i need to contact the endo surgeon i went to. he is out of network with all insurance and mine still covered a great deal of the cost but it was very expensive. i went to him because he makes video of his surgeries and feels it should be standard to do so and he takes photos and he specializes in adhesion's to a degree most surgeons don't. insurance would force him to do faster surgeries that he feels are not as good so he does them out of network and then bills for it and does excision and removal of adhesion's. i just am anxious to go back because of the money. i talk to a doctor tomorrow at the clinic my normal pcp works at. the one place where this seems me/cfs related is that moving and exercising helps me so much with constipation but now i just am out of breath and worn out so fast and get so sick i can't do that. the combination of stuff is really getting overwhelming.

 

[Judee]

I just posted this in another thread as well so hope it's okay to put it here as well: https://www.hormonesmatter.com/tag/thiamine-gastroparesis/