gastroparesis anyone?

Ouch_Ouch_Ouch said:

Some information.........

If you're still looking for information, LaCh, I found a dab of it as I was reading about the FODMAP diet for IBS (irritable bowel syndrome). Crystal Saltreli, CHC, is recommended for gastroparesis information by Kate Scarlata, RD, and the UNC Center for Functional GI & Motility Disorders. [Saltreli mentions in her blog that some people with gastroparesis have benefitted from the diet, too.]

Living With Gastroparesis: http://livingwithgastroparesis.com/

UNC Center for Functional GI & Motility Disorders: http://www.med.unc.edu/ibs/news/fats-fodmaps

Functional Gut Disorders: Patient Education and Advocacy [Scarlata blog that mentions Saltrelli]: http://blog.katescarlata.com/2014/06/25/functional-gut-disorders-patient-education-advocacy/

All the best of luck, especially during the holiday food fest.

Thanks ouch, I'll check these out. I've found my own tricks, which don't eliminate the problem but that make it manageable. All in all, I can't complain. My philosophy is "everybody has something," and I just do what I've found by trial and error and beyond that, don't devote too much thought to it. I was mainly interested in seeing if other people might have experienced this, either chronically, intermittently, or temporarily after 5fu and mitomycin. The thing is, I wasn't aware of a correlation until I attended a presentation at Sloan Kettering about a year and a half ago which addressed post treatment effects of anal squamous cell carcinoma. Gastroparesis was never presented to me pre treatment as something that might occur, but then again, I'd hardly call what I was told as full disclosure. it was anything but. In any case, like I said, everybody has something, and in the greater scheme of things, I have nothing to complain anout. Thanks for the links and response. 

Ouch_Ouch_Ouch said:

Unprepared!

"Gastroparesis was never presented to me pre treatment as something that might occur, but then again, I'd hardly call what I was told as full disclosure. it was anything but."

My experience paralleled yours. I was given a lot of handouts to read by the radiation oncologist that he obtained from the NCI, etc, but they phrased things so vaguely, almost pleasantly, that I feel like I was totally unprepared. The oncologist didn't want to talk about anything "that might not happen". Fortunately, the infusion center nurses were more forthcoming about what I should expect!

Then again, I told the doctors (primary, oncologist, radiation oncologist, and colo-rectal sugeon) that I was considering not getting treated. They were all horrified and told me that I had to. My husband also insisted. The onc told me I was stage II - not true; either she misunderstood the staging system for anal cancer or she was being manipulative. The rad onc told me later that I was stage III-a (T-2, N-1,M-0), possibly III-b (T-2, N-3, M-0) and he irradiated me as though I were definitely III-b. So, with the vagueness, maybe they were trying not to rock my boat unnecessarily and scare me off? It really annoyed me, whatever the reason for the suterfuge.

It's so complex a disease, a treatment, and the events unfold so rapidly, that I got swept away in a blur. My BFFs who died of cancer were not here to act as mentors. There was no support group for me to join. Then there were all those nasty hospitalizations. Unfortunately, I didn't find this forum until after I was finished with treatment and the effects had become so very obvious!

Dear Ouch,

I wholeheartedly concur with you, and had, unfortunately, similar experiences to yours, with unfortunately, very similar responses.  I'm a direct person, as other people here will attest, and I asked direct questions prior to treatments from both the medical and radio oncologists about side effects, both transient and permanent. I also told the medical oncologist that I had not yet decided to be treated, and that no, I wasn't stupid, understood the implications of refusing treatment, which was death, but was excercising my right to choose my own path. He was blatantly manipulative, telling me that it would be a painful death, to which I replied, "Most deaths are." He understated the side effects, was evasive when asked direct questions, and (I knew at the time, and deeply resented) was deliberatly manipulative in terms of what HE thought I should do. It seemed to be more about what he could achieve, what he wanted, him against the tumor with me left out of the equation, and was more to do with what he wanted, rather than what I wanted. My feeling was--and is--that regardless of what he or anyone else thinks, it's my right to make my own decisons, good or bad, right or wrong, within or not within my best interests. Just give me the information--all of the information-- so that  the decision that I make will be well-informed. They both had the information that I needed to make that decision. Unfortunately, some of it was given, some of it was withheld (by both oncologists) and all in all, it was adeptly massaged into a picture that rendered a decision that was not well-informed. It's my right to choose things that others feel aren't in my best interests. It's everyone's right to steer their own lives.  My criteria are not theirs, my concerns are not theirs, my outlook, philosophy and desires are not theirs. (As an aside, I was also told, when I asked, if the CT scan prior to treatment made me so radioactive that I had to stay away from people, children, small puppies and all that, then how was it ok for me? And the answer I got was so patronizing, so insulting to my intelligence, so presumptive of stupidity that I started out pissed before I even began treatments. I'm no genius, but I'm no idiot either, and my feeling about all of those involved in my diagnosis and treatment, with the exception of my gastroenterologist and the chemo and radiation techs, was that there was a presumption of stupidity--mine--on all their parts). I was deeply resentful about being manipulated, and am deeply resentful at the ways in which the medical community in this country treats diseases rather than people, tumors, rather than the problems that are left after the tumors are blasted, burned and chemically chewed away, and resentful of the generally patronizing underpinning of it all. I'm with you. I had a dear friend who died this past June from pancreatic cancer. In light of that, I have nothing--and I do mean nothing--about which to complain. The problems that I have from the treatments are things that I deal with, and really, don't rise to the level of "man, this is a bona fide problem."  As some here may recall, I wasn't a fan of western medicine, how it's practiced or its practictioners before I was treated, and a somewhat rabid critic of our pathetic, embarrassing, shameful, greed-driven, for-profit insurance system. Whatever I felt going in was increased by several magnitudes after.  A patient's right to choose is his right to choose, regardless of what a doctor thinks. The presumption that "I know better," is outdated. It's insulting. It's patronizing.  Rather than starting from a place of perceived authority and decision-maker on his part, and assumed stupidity on mine, they both should have provided the answers to my direct questions, and, if I had weighed that information and decided not to be  treated, should have accepted my decision as one that they wouldn't have made, perhaps one that they didn't want me to make, but one that it was my right to make. I'm not as stupid as they presumed me to be, but smart enough to know that I didn't have all the information, and so I asked. All they had to do was tell. Anyway, I feel as you do.  Really. (I'm probably slightly bent out of shape at the moment because I threw caution to the wind  today, said," F- it," and didn't do what I know how to do with regard to the gastropareisis, and as a consequence, my food has parked itself in my stomach for the duration. It's annoying and uncomfortable, and I'll get it moving again, but at the moment, it's uncomfortable and a real pain in the ... [fill in the blank].  Once my stomach empties, I'll be back to my cheery self. Anyway Ouch, I give you a pat on the back, raise a glass, and say, "Here here!" May 2015 be a great year for all.  ♪♫♪♪♫