Problems with my caboose: Hi All. This... - Advanced Prostate...

Advanced Prostate Cancer

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Problems with my caboose

Neathuh1 profile image
17 Replies

Hi All. This may seem like a crappy subject to bring up but being four years out from prostatectomy and salvage radiation I'm having a new problem sneak up from behind. I've got the usual bad things going on, a little pee leakage (thank goodness for Depends Shields) and I'm impotent, but over the last 8 to 12 months I find I'm having difficulty "turning off the faucet" when I go number two and most recently, I've even had little soiling events when I thought I was just going to have gas. All this calls to mind the old Cab Calloway song, "The Honey Dripper" only it isn't honey and isn't funny. So far I've been lucky and have only experienced this at home. Has anyone else run into this?

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Neathuh1
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17 Replies
Dr_WHO profile image
Dr_WHO

I had 38 rounds of radiation that ended last October. I have issues off and on with controlling #2. Three times when I was shopping I did not make it. The only thing that works for me is to try to go at least four times in the morning. Whenever I go out, the first thing I do is run to the restroom. At the start of feeling I have to go or that I got gas I go to the bathroom. Overall I probably have about 14 mini bowl movements a day.

Neathuh1 profile image
Neathuh1 in reply toDr_WHO

14 a day, eh? You'll have to change your moniker from Dr_WHO to Dr_WHERE.

Thanks for the tips.

Dr_WHO profile image
Dr_WHO in reply toNeathuh1

😝😝

j-o-h-n profile image
j-o-h-n in reply toNeathuh1

My hobby is Humor.... You made me laugh so hard that I cried. It was definitely a 10. I'll be smiling all day thinking about your post, THANKS!!!

j-o-h-n Saturday 08/12/2017 12:01 PM EST

gusgold profile image
gusgold in reply toDr_WHO

Holy Shit

pjoshea13 profile image
pjoshea13

My bowel movement history is a bit grim in retrospect. Surgery caused me problems. Apparently, this can happen (any type of surgery where one is put out.) I was getting over that when I began salvage radiation. After 5 sessions, I was suffering. The nurse patiently explained that my rectum was experiencing a mild sunburn. There's a joke in there somewhere. The sun isn't supposed to shine in there.

He obtained a prescription for hydrocortisone suppositories. They were not very effective. About 18 months after radiation, the proctitis eased off, but I still had to know where the next toilet was.

& then, about 4 years later, things got worse. Averaging 16 BMs/day.

My doctor tested me for C-Diff (Clostridium difficile), & I was positive. Probably picked in hospital after the RP. Was treated with some success, but the problem returned. Was told that I needed to get a colonoscopy to see if something else was going on.

Very unpleasant procedure since my liver metabolized the sedative in an instant. I saw the guy nod to his nurse & she gave me a boost, but the procedure had to be aborted.

The photos looked really good. Such a relief to see the tissue that had been radiated looking so healthy.

But underneath the surface ... A biopsy had been taken & I tested positive for lymphocytic colitis. Sounds bad but it has no effect on mortality. The best colitis to have.

I was put on a drug for 10? days that was effective for a month. But when the problem returned, I was told that I needed to be on the drug for over 3 months. I started digging around & found that it was a potent methy donor. The last thing someone with PCa should take.

The only alternative was to take handfuls of Pepto-Bismol pills every day. There is a problem with that too, since it interferes with iodine uptake. Takes a while to kick in, but the pink pills did the trick. No economy pack, unfortunately; they should have a 500-count pack for lymphocytic colitis.

Time passed & I developed a bladder infection. Never had a problem before. Was given Cypro. Suddenly, bowels were as good as they were ever going to be. Because of the Cypro, I began using "Garden of Life" probiotics. Even better control. Three years later, I'm still relieved to be past the horror. No more nightmares of having to use the toilet from hell, where absolutely everthing goes wrong.

None of this may pertain to you, & much as I loathe colonoscopies, I think you should consider getting one with a biopsy.

Best, -Patrick

Neathuh1 profile image
Neathuh1 in reply topjoshea13

Wow, that's quite a tale. Glad you're doing better now. I'm not due for a colonoscopy for several years but (butt?) if my problem worsens I'll definitely keep your advice in mind. Thank you.

BigRich profile image
BigRich in reply topjoshea13

Patrick,

What a nightmare, I am glad that you are better now.

Rich

Chask profile image
Chask

Following my radiation, I also suffered bowel problems. Urgency (a couple of small accidents) and a painful backside - felt like haemorrhoids, but wasn't that. Initially treated with haemorrhoid cream which provided temporary relief. Also had slight leakage of a slimy muccous, but not faeces. Eventually saw a gastroenterologist who diagnosed radiation proctitis and performed a colonoscopy. Also diathermied some of the more obvious damage around the anus and since that treatment everything has reverted to complete normality.

I now have no urgency, leakage or pain. I don't understand why a colonoscopy should do that, but it did, so may well be worth your while to investigate that possibility.

The colonoscopy also gave me a clean bill of health so far as the bowel was concerned. No polyps, but some moderate diverticulosis. Nothing that needs treating.

Good luck, Chas

toml77 profile image
toml77 in reply toChask

Could it be that the prep for the colonoscopy cleaned out whatever was causing the problem?

Neathuh1 profile image
Neathuh1

Thanks Chas. With what I've heard from you and Patrick it sure sounds like I better schedule a colonoscopy. Good to know both of you benefitted from it.

erjlg3 profile image
erjlg3

Just some things to ask doc about or try. Fibermucil..... bulks up your pooh, politics, Dicyclomine prescription. I hope something works for you.

AnnieAppleseed profile image
AnnieAppleseed

Activated charcoal is a simple remedy to try early on. Has been known to stop diarrhea. Studied with chemo drugs. Acupuncture is a complete system of medicine and has been known to help with many aspects of 'aftercare' as well. Probiotics may be helpful as well. Here is a page with several concepts (from my nonprofit Annie Appleseed Project): s672529981.onlinehome.us/ar...

bkoa profile image
bkoa

My friend takes Immodium or the generic to save some $ such as the generic at Costco. He adjusted the quantity to what works for him. It has been successful and has done this for quite a few years. He has had colonoscopies and he received an excellent report. He always needs to visit a bathroom after eating and in places he frequents, knows where the rest room is located.

Sisira profile image
Sisira

Since my prostatectomy in march 2015 followed by radiation I observed some changes in my bowel movements. The type of radiation I received was image guided and intensity modulated radiation. So I didn't suffer any radiation proctitis as such but may have altered the the bowel movements in some way or the other as major surgeries too can induce such conditions. My problems were mainly tenesmus ( urge to go to the toilet often ) and incomplete defecation ( anal sphicters don't seem to coordinate properly with the bowel movements ). On consultation with a gastroentrologist a COLONOSCOPY was done. Two polyps were found in the sigmoid colon. Both were excised and the biopsy report confirmed that there is no high grade dysplasia or malignancy. Rest of the colon ( large intestine ) was found to be normal. It is very important to do a colonoscopy because there can be various other issues such as colo-rectal cancer etc. Despite this investigation my tenesmus problem continued and since of late I developed a slight pain in my anus and about a month ago I could feel a painful spot near my anal verge. After some time I did also find some discharge coming out of a small opening ( same spot ). After a thorough examination my gastroentrologist said it is an Anal Fistula and surgery would be the only option of treatment. So three weeks ago I underwent a surgery called "Cutting SETON". Now the Fistula is in the healing process which may take a month or two. According to what I have learned Anal Fistula is a chronic decease. I really had to curse this! Normally I have to clear my bowels at least 4 times a day, twice in the morning and twice in the evening. I am very careful about my food and always manage to keep my stool nicely soft to avoid any constipation.

Sisira

Neathuh1 profile image
Neathuh1

Thank you one and all for your helpful comments. With your help I'm sure it get to the BOTTOM of this. Good to know we have this site and each other to turn to. Thanks again.

Not to gloat or anything, but my extensive research on radiation (I was a poor prospect for RP type surgery after TURP surgery years back), convinced me that the risks described here were something I didn't want to flirt with. I paid up for HIFU instead of radiation. Happy so far, but early in the journey. Best to all who are dealing with after effects of surgery or radiation.

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