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Die with one condition, live with other(s)
I received great news this week: after eighteen months of ADT treating my PSA 6.4, Gleason 7 (3+4, 4+3) PSMA PET three tumors in prostate and activity in both Iliac lymph nodes cancer, my test results have been PSA <.01, Testosterone <10 for a year and I can go off medication at the end of June to begin active monitoring and, hopefully, Testosterone recovery. I received less-good news this week that the radiation proctitis I have from 44 IMRT (26 pelvis, 18 prostate) treatments is permanent. My gastroenterologist will attempt to help me reduce symptoms, but the tissue is not going to recover. My 3-4 loose stool bowel movements and bowel urgency will continue, perhaps interrupted a bit occasionally by Sucralfate enemas or Mesalamine suppositories and confronted daily through the use of Psyllium and probiotic. It's hard to know at the time whether you're making the best choices regarding longevity vs. quality of life, but I'm grateful for progress. Diagnosed at 73 and ending the first round of treatments at 75, we'll see what the future looks like and be grateful for each day.
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@jime51
First I was referred by my gastro doctor (He needed some convincing)
Secondly I met with the intake nurse at the hyperbaric division of the hospital where it is located. She filled out the paperwork and submitted it for approval. They approved !!!
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5 Reactions@ededed Yes! I mentioned this to my gastro and he was supportive. I sent him the link to the hospital where my daughter works. They have hyperbaric as part of their wound care department. I notice that my Medicare Advantage requires physician prior authorization, but since Medicare approves it, this should be workable. I'm one of those people who normally needs more intense treatment than average. Guys in my Ancan support group were surprised that my gastro called radiation proctitis "permanent," then admitted that after eleven and seventeen years since radiation, they were still having occasional symptoms. I'm stubborn enough to keep trying to find better healing options.
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1 ReactionPermanent? That may be so. Even though today I don't have noticeable symptoms, I know that if I consume food that most people can eat, I would have symptoms / gastric distress within a day.
@ededed Which foods can you successfully eat without aggravating the condition? I've been adding fiber and trying to eat lots of vegetables (my wife graciously roasts several pounds once weekly).
I can eat many foods. Here's a list of the major foods I can't eat.
I can't eat foods with
curing powder / nitrates such as bacon, ham, hot dogs, pastrami, peperoni, salami, etc
foods high in myristic acid including beer, wine, nutmeg, palm oil, palm kernel
potato chips
My gastro says foods to avoid vary greatly between his patients.
I haven't had a problem since I attended a wedding months ago.
Fried foods from restaurant A are fine with me, but fried foods from restaurant B are not. I believe the answer is in the oil.
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3 ReactionsHi,
Have you talked with a registered dietician about what foods to eat and avoid for your bowel issues?
Dave 3+4
@clevelandguy Not yet, but support group members helped me get the diarrhea better in control through the use of Psyllium fiber and a "gut restore" probiotic from Ancient Nutrition. I spoke with someone this morning about beginning hyperbaric oxygen treatments, and he indicated there will be diet restrictions with that. Would a "regular" dietician be familiar with oncology and radiation damage issues?
@jime51
Yes I would think a dietician in the same hospital network would be able to consult and offer advice.
Dave 3+4