I had salvage radiation after having my prostate removed- I got the bad news that there were positive margins, and evidence of seminal vesicle involvement. T3. That was almost 11 yrs ago. Things went pretty well for awhile, I was involved with a great dr at UCSF -Charles Ryan, who placed me in a number of trials that lasted a bit and then didn’t. I had a bit of incontinence after about 5 years in, and then issues with my bowels started. Now my mornings are spent wondering if I’ll make it to the toilet on time. This has led to numerous very embarrassing moments, and it’s a daily challenge that seems to be getting worse all the time. Anybody out there have any suggestions? My doctors haven’t been much help. Thanks
Steve
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TahoeJ
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So educate me. Is there something in my diet or some form of exercise that could help out? We love our garlic, onions and spicy foods. Could this be making matters worse? Thanks for getting back
Yes, those foods certainly can make it worse. What I know about IBD is to use a bland diet, and no dairy products (it's not just lactose). Perhaps polycarbophil laxative (ironically) to make stool bulkier. Talk to your PCP about it.
I read up on IBS, and I don’t have many of the symptoms associated with it. No cramping, loose but not to the point of diarrhea most of the time, just seems to be uncontrollable when it comes on.
Thanks for giving this a look TA, you and Nalarats are the best! I’ve been putting off asking about this, but it’s constantly on my mind, and keeps me from enjoying the morning- I need to use the toilet at least 5-6 times before leaving the house, and even then don’t feel safe.
Thanks so much for taking the time to respond. None of the above look like much fun, but that shouldn’t be surprising. I’ll keep you in the loop. I can’t believe my two favorite guys got back to me on my first post! I am grateful for your time
Thanks Tango. Nice to know I’m not alone. It grieves me to think I might have to give up my onion habit though- I’ve loved them my entire life, but at this point I’d consider anything to break the cycle.
You need to consult with GI doctors and pelvic floor experts (urologists?). Diet may help but pelvic floor exercises and biofeedback may be more effective. You may not need to stop eating onions. You do not have IBS.
Wow! That’s the best advice/ news I have gotten yet! My gut feeling ( no pun intended) is that my muscle tone there has diminished like it has all over my body. No testosterone does bad things to you. I don’t feel stressed- I’m retired, play a lot of music, fish, have a huge extended family of wonderful friends. So that’s where I’ll start. I’ll cut back on spicy and onions a bit, add probiotics, keagels, and see how that works. I went to my gp, and have an appointment with a gastroenterologist for good measure. Thanks so much for the ray of hope!
The consultation with the GI doctor is important. They have techniques to determine if there is an anal sphincter problem and/or a problem with the pelvic floor muscles. They also have biofeedback techniques to help improve the function of the anal sphincter and the pelvic floor muscles. They could also advice about a diet if any is indicated in your situation.
Since your screen name pays homage to the community I lived in for a decade (I went to intermediate, high school, and community college in South Lake Tahoe), I’ll share a somewhat graphic account of a valuable treatment I received in the San Fernando Valley in early 2016.
After my Robotically-Assisted Laparoscopic Radical Prostatectomy my surgical urologist referred me to a specialist who does pelvic floor therapy. After ten minutes on a stationary bike, they’d show me to a private room where I was asked to dress in a medical gown and lay prone on a table with a wedge under my legs. A moist warm pad was placed on my abdomen for another ten minutes, after which a female doctor came in, removed the wedge, and gave me a belly massage which was designed to break up scar tissue.
Early on she informed me that the muscles of my pelvic floor had become very confused, and were struggling to remember the difference between the relaxed and tense states. She would lube up, insert her slender, yet strong, finger in my anus, and massage the muscles of my pelvic floor from within (in a 360 degree pattern).
We then worked on tensing and releasing those muscles. After placing her finger mid-way into the anal sphincter she’d ask me to image her finger as a baby carrot and ask me to bear down hard enough that it could snap the carrot in two and hold that tension for increasing amounts of time. I believe this level of treatment, along with a lot of Kegel exercises helped me achieve the respectable level of urinary continence I’ve enjoyed since my prostatectomy! Best of luck to you all!
That sounds worth a try! I’ll talk to the dr about giving it a go. The reference to Tahoe is my gals doing. We currently live in Cayucos. I have a appointment with a gastroenterologist, but in a couple months😞
Agree fodmaps highly. I noted onions in current diet. This is a giant no no. Has a highly indigestible diarrhea causing bacteria for many. Fructose intolerance has finally come to a fore as a Ibs cause for many,,,,just as lactose is for many. Go on an elimination diet to find what is bothering you. Begin taking probiotics daily such as Align and other recommended brand.
Just do it. Your Doctors are not doing well by you.
Fodmaps diet- I’m guessing a bland one. Would kimchi be ok? Guess I’ll have to read up on this. Are you able to function normally now? Or almost? It’s taken me years to actually reach out for the answers that I’m not getting from my drs, I’m honored you and all the rest have taken the time. Thanks so much
I've still got to watch carefully what I eat. If I go off the "wagon"and eat something I know I shouldn't, I'll have a flare up and will spend the next 2 days running to the loo. I'm a Mobile mechanic, I always carry several spare sets of underwear and I know the location of every rest room within 50km! Sorry to say but for me it's the same after 13years.
My Gastro specialist said I needed more regular Colonoscopies than the next guy because EBRT puts one at a slightly higher risk for Bowel cancer. (damn!!)
Look up the IBS friendly diets and you'll get it under control.
A sense of humor is necessary to combat this disease for sure lol
Simple, lay off the spicy foods and take a stool softener. Talk to your primary Care Physician about IBS. Question. When was your last visit with a Gastroenterologist? He is the guy that can really help you as he sees inside to find out what’s going on.
I haven’t had a chance to run this by a gastroenterologist yet. Guess that’s where it’s headed. Hard to get one with the Covid thing going on. Thanks for your ideas.
I know of a good place for fun..... try Lake Tahoe (California/Nevada)... It may be a good idea to update your home page with your bio info (whenever you wish), this way it's there for your reference and for other members to view.... Enjoy, Stay safe and keep grinning..... I love humor..........
We are headed to Zepher Cove in August- my wife has been going there with family forever, and drags me along. We live in a pretty nice spot- Cayucos- and feel pretty blessed.
Just did a Google map of both..... You are indeed blessed... Good for you all... Enjoy yourselves... (I'm open for adoption -I'll fit in with "the family")...Drive carefully and stay safe...
No...didnt know that....us guys from brooklyn didn't venture to queens that much....I was force to go see me mets once in awhile....and remember regent's row pub?
Wow.... Suffolk county..... W.P.P. = you must have been in the cell next to Jeffrey Epstein when he hmmm (hanged himself)...Do you need a passport to get into New York City? Looooong Island.... that's for sure.... Take care.... and Smile!!!
Hi TahoeJ... so very sorry you are having to deal with this cr@pPy situation. I don't currently
have APC, but I read this forum almost daily as it is one of the absolute best sources of current information in case the "bad guys" come back to visit me in the future - some AMAZING folks in this group!
Don't know if this might help you, but here is my past experience... surgery 3/2016, positive margin at the bladder neck. Second PSA rising - off to radiation. Started having gut issues about a month in, progressively worsened, five month post-treatment appointment I told the RadOnc how unhandy it was to have to always be close to a bathroom and he
told me "there's no way it's the from radiation this far past", so I never went back to his office.
Urologist had no helpful ideas, same with my primary. By early 2018, I was miserable and desperate (continual explosive D is the REAL DEAL:), missed work on and off, borderline depression thinking back now.
I found an awesome naturopathic doc who started me on a probiotic. Two months on the probiotic, I was around 50% improved. Then she ran an igG ELISA 184 food panel test and had me strictly eliminate anything above a certain score for two months. So then, at four months in with her, I was literally 95 % better overall. Over time, we have added some things back in, some I will always try to avoid. I can still tell very quickly if I eat something I shouldn't... still keep an extra pair-o-drawers in my truck console for "just in case", butt not even a close call while out and about the past couple of years
Working with the naturopath, I've had multiple other (years long) health conditions/markers improve far beyond what my primary doc and I had ever hoped for.
Nice to know something works sometimes. What were the specifics of your regimen? We cook most of our food, and eat almost everything , and this whole process keeps us happy as well, as it’s one thing we can do together that’s seemingly healthy and good. Apparently not so😞 I saw a naturopath early on and use his suggestions to this day. Thanks for your time. I am humbled as to the amount of folks that have offered advice.
One test you can do is try a sodium butyrate supplement or tributyrin. Both are available on Amazon. If this helps at all then its a huge clue and worth trying some combination of scfa producing probiotics and prebiotics. The most readily available probiotic for this is aor probiotic-3. As for the prebiotic, what works best for you is hugely individual and you can pretty much ignore anyone else's opinion in lieu of your own results.
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