The battle rages on. Beachboy vs Diversion Proctitis

Yes, it's that time once again for an update about Beachboys beleaguered rectal stump. For new members unaware exactly what Diversion Proctitis is.... read on.

If you have a rectal stump remaining after your ostomy surgery, and you don't get reversed, eventually you will develop Diversion Proctitis. Stool passing through the rectal area provides nutrients necessary for a healthy microbiome preventing inflammation. Once the colon is surgically disconnected from the rectum/anus, those vital nutrients end up in your ostomy bag. Starved of those nutrients, inflammation eventually develops in the rectum. 70% of people will have no symptoms. 30% will suffer bleeding, pain, and a feeling like ya gotta poop all the time (tenesmus).

I am one of the unlucky 30%. Last year at this time, while on vacation.... I suddenly started pooping out blood multiple times a day. Ruined my underwear. Had to borrow pads from my wife....Kinda funny. Once home, visited my most excellent gastroenterologist. He probed my wayward rectum with a scope (damn painful). The verdict: Diversion Proctitis. OK. How to treat it? He prescribed Mesalamine suppositories. After I slid in the first one... all symptoms stopped. How great was that!! I inserted one every night for 7 months.... then the party was over. Symptoms returned with a vengeance. Body becomes resistant to the medicine. I researched online what to to. Turns out... not much. Barbie Butt surgery to remove the rectal stump and anus. Kinda extreme. I'm fond of my butt the way is. Reversal to restore fecal flow. Impractical for me. My entire sigmoid colon was removed and I had lots of radiation in that area, interferes with healing.

I once again visited my most excellent gastroenterologist. Again he probed the depths of my rectum. "Yes," he declared: "Diversion Proctitis." By now, I was savvy to all of this. I asked him about alternative treatments I discovered online. He professed total ignorance. I know why, none are FDA approved in the US. There's no money to be made, so drug companies aren't interested.

Back home I continued my online research. I felt like Don Quixote tilting at windmills. This inflammation was ruining my life. I read Mesalamine can make symptoms worse once it loses effectiveness. So I stopped taking it. BOOM!!! All symptoms ceased immediately. No more bleeding, pain. Gave my wife back her box of pads. I was a happy camper. Slowly, over 2+ months... symptoms returned. Not as bad as before. I suffered no pain, and the bleeding wasn't as bad. Eventually, I had to wear pads again. So, that's where I'm at now.

Doing research on Mesalamine, I wondered if I should try it again. It has a good safety profile. So 2 nights ago, I popped one in. Bleeding immediately stopped. I'll keep taking it until it becomes ineffective. Maybe this is how it goes?? Use it until it doesn't work. Stop, symptoms temporarily vanish. Then start again when symptoms eventually return.

I bought a jar of virgin coconut oil, cold pressed with no solvents. And a do it yourself suppository mold kit. Next time symptoms return.... I'll try coconut oil. It contains Short Chain Fatty Acids similar to those contained in stool. Doctors won't help.... gotta do it on my own.

Ouch

That sounds horrific my friend.. 😖😖😖

I have an ileostomy, still have have some rectum plus anus remaining. I'm now really going I'm in the 70% group! Nobody has mentioned this to me at all.. I was offered a reversal.. I was over joyed for about 2 mins when he started to tell me that what comes from my stoma now will be exactly what comes out of my bum hole.. I did not really fancy this option so I'm sticking with Tommy the stoma..

Fingers crossed that I'll be OK like this.

I've had a couple of slime fest toilet moments already but I can put up with that.. as long as it doesn't turn into what you've had mate..

All I can do is wish you the best with the coconuts.. you may have to check with Kid Creole first.. 🤭

Be safe and well

Tony

Hello Beachboy.
Thanks for this and your last post on this subject.
After my recent endoscopy, I was diagnosed with Diversion Proctitis and it seems that I am also in the 30% bracket.
It is good to know that there are some other DIYers thinking about this issue and doing something practical to try to overcome the symptoms.
Please keep us informed of each and every experiment you perform, as the successful ones will be useful to try and the unsuccessful ones will save a lot of unnecessary effort towards failure.
Best wishes
Bill

PS: Did you see my past post where I outlined my device for stopping the blood and mucus from draining down my legs.
I have been using adaptations of this for the past month or so and it seems to be working fine as a 'management' tool.
What we now need is a 'cure', and your logic sounds good, so I hope your experiments with coconut oil suppositories can help to provide that.

Best wishes

Bill

I’m glad you posted this…

I heard back from the Dr I had asked about the diversion proctitis (not my GI Dr). For me with an IRA (ileorectal anastomosis) as long as things keep moving through there shouldn’t be diversion proctitis. Now if my motility issues get worse and it’s dormant in the rectal area, proctitis could rear its ugly head.

With my anatomy the abdominal colon is gone so the waste that comes from my body is very similar to what comes out of an ileostomy.

The medication I take to help with esophageal dysphagia my GI Dr heard about from a research study that wasn’t for swallowing, but they found it helps… they don’t understand the efficacy other than it causes changes with neurotransmitters. But it’s cleared by the FDA so I get to use it. One of my Drs was venting to me about how his hands are tied by insurance and he can’t say I believe this medication is best for my patient and what they need. I had to try a bio similar and fail it even though he doesn’t think biosimilars (generic biologics) work as well bc of insurance. It added months onto my journey into remission.

Let us know if the coconut oil suppositories help.

You’ve probably done this… but… have you tried using the mesalamine suppositories intermittently? Try and trick the rectum and not let it grow immune to the medication as quickly?

That was one the best things one of my GI providers told me… your body isn’t playing fair so neither will we- I do best with non textbook approach as my body doesn’t follow those rules.

Merry Christmas to you & the Mrs!

Your posts on this subject have been quite informative. I hope not to follow you down this path but I will be wiser if I do.

My Ostomy Journey: Keyla | Hollister

Hello, yes I tried that. At the start, 1 a day. Then a few months later, 1 every 2 days. That worked OK. So I attempted 1 every 3 days. Began to get slight bleeding. So I reverted back to 1 a day. I'm researching if the body becomes immune to the drug, or... the rectal stump needs to rest awhile and become inflamed. Then the drug works again. I'm now on day 2, taking Mesalamine suppository 1 a day. So far... no bleeding. I do have to poop out the suppository residue, which comes out easy and all at once. The residue has a pasty composition, thus it's easy to "hold it in." So, no need for a pad. The residue will stain (black) any surface it gets on. Got some on the back of my toliet seat while emptying my colostomy bag. It will not come off. My wife was unamused. Imagine me trying to explain the stain. I had to use Comet and steel wool to remove it. So, now I put a folded paper towel under my butt every time I empty to avoid the wrath of Mrs B.