Radiation proctitis....treatment

[Karmaji]

I would like to know the opinion of our tribal friends regarding treatment of radiation proctitis .

I tried Betnesol ....no use Mesalazine..Pentasa .no use

sure, Psyllium and dried plums soften stool which I take as sucralfate constipates.

I have been testing with Sucralfate enema since 4 months... It reduced my stool blood symptoms by 80 %. All blood tests ok....

Some gastros say it will gradually go away others say my stool blood will get worse... My Radio Onco says it will never go away but will be less frequent...

I consulted a Gastro who says why I am going thru this enema mess and he laughed at my mind set....He proposed Argon Plasma Coagulation...100 % confidence and good quality of life...He is top in APC...

Should I take the path of APC....???

Any experience of friends .....??

Thanks

[tango65]

Some info published about this problem:

pubmed.ncbi.nlm.nih.gov/332...

pubmed.ncbi.nlm.nih.gov/109....

pubmed.ncbi.nlm.nih.gov/309...

[BadNews4me in reply to tango65]

tango65, your problem was mine until I went to Mayo Rochester and was treated with formalin that stopped my severe bleeding problems. I tried all that you mention including APC (40 sessions) with no improvement.

Worth mentioning the formalin treatment stopped the bleeding but also was responsible for creating new ulcers that bled. Today most bleeding has stopped on its own with only occasional small bleeding as a consequence of hard stools (constipation) . My battle is controlling this problem with adequate fiber.

I was in the minority that all other treatments failed. I hope you find a solution that works because what you are going through is pure hell.

[Ben2]

I started dropping large clots once a week about a year after radiation, My gastro looked at my colon which showed some damage. He advised I wait. The clots went on for a year, then became less frequent for another year, then stopped. No problems for last 6 years.

[MateoBeach]

Yes, get the Argon laser to coagulate the scar capillaries if he has it and is experienced with it. Another treatment that works is applying dilute Formalin solution to the rectal mucosa at site of radiation scarring for a few minutes. This worked for me but needed to be repeated after a few years.

[Karmaji in reply to MateoBeach]

My Gastro is specialized in APC...he does a lot...and he is convinced I will need only one session...

Very few studies since only 5-10 % get CPC and may be people die of something else...Thanks

[Break60]

I had radio frequency ablation which worked ok but I believe what you’re thinking about is good too.

[lowT163]

this is to simple to be good for everyone but worked for me. Key to stopping the bleeding was to control the bowel movements to perfection. This means no constipation or loose stool. I had my rectum burned and was supposed to return 30 days later for more to finish up. After 5 months of healing I finally felt normal. Still bleeding.

My cure is 1 tablespoon of metimusel 2 or 3 times a day and that’s enough fiber to keep me at a number 4 on the poop scale. Crazy but no more bleeding. Just keep the stool soft but not loose. Bled for 2 years before figuring that one out.

Hope it helps.

[Karmaji]

I agree, but in my case I controlled bleeding by 80 % with Psyllium and sucralfate enema.

Some say it will go by itself, as is your case

others say it will get worse....

My blood tests are OK

I am asking should I go for APC...as gastro recommends since he laughed at my enema story..

And says I will have better QOL...

Thanks

[lowT163 in reply to Karmaji]

that’s what my guy said too. Did it and it was terrible and was worse than before he {fixed me]. Get a perfect stool consistency for awhile then if you still have problems do anything that helps. Mine was burnt pretty bad and will bleed anytime I am constipated or loose. Has to be perfect to not irritate the tissue.

[Karmaji in reply to lowT163]

very scary...Did you do APC and was gastro badly trained...

I wonder if I should go for it or handle

myself with sucralflate enema.

I have occasional traces of stool blood

May be it will go by itself

I take as well vitamin a c d e and turmeric to flush the radiation damage...

Any idea of senoltics to flush out Zombi radiated cells....forexample Fisetin

[lowT163]

Hi Karmaji

it’s all about not irritating the radiation burned tissue . I don’t think it will go away on its own but mine does not bleed if I keep bowel movements perfect. Add lots of fiber and mine is kept that way with metimusel . Cheap and easy. I do 2 teaspoons in 12 ounces of water 2 times a day. You can do more because it’s all natural fiber. Give it a try . Eat nothing that causes gas, diarrhea or hard stool . Has to be perfect.

Hope this helps

Mike

[Karmaji in reply to lowT163]

Hello Mike

The reaction to RT and its healing is very heterogeneous. But we can learn from each individual experience.

After a year of RT, I started having traces of stool blood in July 220....

Then it started increasing without any change of QOL, blood tests OK.

Gastros were completely useless in handling as they understand not the mechanism of radiation damage. So I am on my own...

Started with Psyllium and dry plums...soft stool, but blood stayed almost every day in small traces with episodes of more blood.

Then I started sucralfate enema in June 2022... 2 gms in 30 ml water twice a day for 4 months. I had 80 % cure but still occasional. blood.

Since a month, I do with 1 gm and 20 ml water once a day....For how long ? I understand that this enema is also curative but no study...I am doing my own.

I take psyllium plus dry plums. And vitamin A C D E and liposome Curcumin to control radiation damage to other organs.

I consulted top gastros in my area.....

One says if it does not bother me, just let it be...

One says it will get worse....

Other says do APC in order to have better quality of life and free from occasional enemas as he does not like the hassle of enema.

Thus, I am interested to have opinion of forum friends what to do...

Keep non-invasive therapy or go for APC

Thanks

[lowT163]

Hi Karmaji

This is the one area I have had success with. Bleeding was an everyday occurrence.

Mine is almost what I consider healed if I don’t create any of the 3 problems which are Gas, loose or hard bowel moments. I think pushing treatment until all these are good with you is the same as eating sweets while taking diabetes medication. I fought it for 2 1/2 years before understanding what the problem was.

An enema would cause a loose bowel movement and be a cause of bleeding for me for sure. Fiber,Fiber,Fiber.

Lookup what a number 4 is on the bowel movement scale. This is what will be easiest on your rectum. I am assuming that is where your bleeding is coming from. If it isn’t coming from there delete this reply.

[Karmaji in reply to lowT163]

Thanks....key is Fiber ...sure

no enema....what is number 4...??

[lowT163 in reply to Karmaji]

number 4 is the consistency of the bowel movement. Most important part of naturally fighting the bleeding. When I left MD Anderson they sit me down and told me what was going to happen and that no gas, no diarrhea and no constipation was the key. If you have any of these problems you will be seeking argon treatments. The tissue will never heal. Mine is gone unless I create it, which I do. Treatment may need to happen. Just saying get the other right first.

[Karmaji]

Thanks for sharing. you are lucky to have these docs with an insight..Most of Gastros I consulted are of no use.......I have no serious bleeding and can handle thru your advice. ...Should I postpone APC ...

[lowT163]

I would until I see if the number 4 works. You can always let them cook your insides another day.

[Karmaji in reply to lowT163]

thanks...