Hi, i had EBRT 20x3gy in sept 2021. I have been passing quite a lot of blood with most bowel movements for the past circa 8 months, a, sigmoidoscopy in January 2023 diagnosed Proctopathy and a couple of 'diverticulae', i was referred to a CNS to look at possibly using sucralfate enemas, question is.. Are they effective? I didn't like the sound of formalin treatment.
Rgds, Nick
Hi Nick,It's not clear to me your diagnosis, but I had also a lot of bleeding after anal cancer radiation. They tried the sucralose enema first which didn't have a big effect due to inconvenience. The nurse did it in my home twice a week and I was supposed to do it twice a day for the rest of the time. It's so difficult and messy that I refused to go through this experience. I was prescribed hyperbaric chamber oxygen treatment for 60 days which stopped the bleeding. It was done in the USA. Good luck.
The sucralfate might help you, I was told it does for some people but not much for us . You don't say where you live but we're in the UK being treated on the NHS. My OH had radiotherapy for Prostate Cancer and six months later developed Radiation Proctitis. It was in the middle of Covid so they wouldn't scan him and took a long time to sort some treatment which was the Sucralfate enemas (it was the only treatment offered at the time). Needless to say he couldn't manage the enemas so I ended up doing them for him. Twice I had to call an Ambulance for him as he was collapsed on the bathroom floor surrounded by blood and feaces (it looked like a murder scene). They did try one Formalin treatment after about 5 months but that didn't work and, although I was told you often need two or three Formalin treatments for it to work, they never offered him another (I did ask!) So we kept going with the Sucralfate. I was told we were unlucky that it took so long to work (9 months). And then the bleeding started again after a year. By then we'd moved to another area and I had SO much trouble getting the Docs to give us more Sucralfate. The GPs didn't know what I was talking about, and the Colorectal Surgeon couldn't be bothered. Eventually, having made myself quite a nuisance, they gave us the Sucralfate but would NOT give us gloves (I had to buy them) and would NOT give us all the equipment (I had to buy some syringes). These enemas were equally as useless as the last time. Eventually he was transferred to a Gastro Consultant who was so much more in tune. OH has now had two lots of APC treatment and the bleeding is much, much better. He's not anemic now for the first time in three years. There's one more APC booked to come. I would see if they will give you APC. The Sucralfate may help the bleeding lessen for you. The worst thing (for me) was having to 'wash' the equipment at home (they only gave us one 'pipe') - not something you want to wash in your bathroom basin (where you will be washing your face later) or your kitchen basin (where you'll be washing some vegetables to eat later). Sorry for a long answer but it's a subject I get rather heated about! Good Luck
Hey 456Sally, many thanks for the fantastically detailed reply, it's much appreciated! I'm in shropshire, uk... Ive just not heard anything positive about sucralfate at all yet so I will look into APC and see if it might be possible but it hasn't been mentioned to date. I'm still waiting for an appt to discuss sucralfate and will mention APC when I have my next prostate cancer progress chat due in May. Many thx again!
Ps could you add some detail about how the APC treatment is given, any issues / side effects... Cheers!
APC (Argon Plasma Coagulation) is done via Flexible Sigmoidoscopy. My OH is sensitive to pain so I requested for him to have sedation and pain relief as they did it (he has Dementia too now so doesn't remember to ask for himself). He was fine within about an hour after an NHS cup of tea and biscuit! You have to have an empty bowel so strict fasting the day before and a self administered 'clean out' procedure a couple of hours before. The first APC worked for about a week. The second (about three months later) worked for about 6 weeks - though he is bleeding again a little now. The (excellent) Consultant has booked a third but we haven't got a date for that yet. I think that Formalin treatment (which is also done via Flexible Sigmoidoscopy) has to be done by a properly trained person (not sure what) and they didn't have one of those in our local hospital. APC can be done by the doc that does a Flexible Sigmoidoscopy.
Hello
At the end of 2020, I had 25 external radiations and 5 internal ones due to cervical cancer. In the summer of 2021, the bleeding started, initially weak, but after a month, continuously, and clots came out between the stools. Colonoscopy revealed post-radiation proctitis, and for 9 months I was on a strict diet (although I had no diarrhea), and I was taking mesalazine suppositories. It did not help, and in my country there is no other treatment option (there is no argon plasma coagulation) and the radiologist does not advise me to use a hyperbaric chamber until 5 years have passed since the end of the therapy, so that some remaining cancer cells might flare up. Even sulcrafate is not registered in our country as a medicine. I managed somehow and got bags of sulcrafate for oral use from Italy, and started using them 2 times a day on my own. I dissolve a 2 gram bag of medicine in 10 ml of water and inject it with an improvised syringe with an attachment. Now, after almost a year, the bleeding occurs occasionally, most often when I have 2-3 stools a day. And the amount of blood is significantly less. So if there is no other option, sulcrafate helps, you just have to be persistent. And do not use a large amount of water for dissolution, but make a paste of 10 ml, which stays longer in the intestines and does not create an urge to expel.
I apologize for the bad English, the translation was done by Google.
Best wishes
Hello. I tried those enemas and I found that I had so much anal radiation damage that I could not hold it in! It came right out. Suppositories worked a little better but I had to get it high up, if you know what I mean! Talk to you primary care Dr, maybe they have some answers. Best to you.
Thanks Marie!
I think it was called Canasa suppositories.
Hi I'm in the middle of a 6 week treatment of sulcrsfate enemas which do seem to be helping though my bleeding was just constant rather than heavy. My pharmacist managed to get.me syringes which were prefilled and much easier to use. I would recommend trying these if you can.
Hi Nick,
After having radiation for prostate and pelvis I began passing blood
After a few months it was suggested that sigmoidoscopy could provide a solution to the bleeding. It did for a very short time but then it got far worse and it was decided that a further sigmoidoscopy was required to penetrate further.
At first there was still some bleeding and there was talk about a further sigmoidoscopy being required. But after a short time the bleeding almost stopped. Nine months after the second procedure I normally only get traces of blood in my stools if I have done some exercise that I wouldn't normally do, such as swimming. But that does not continue.
Hope this might help Nick.
Good luck
Hi housebound, did you have some treatment with the sigmoidoscopy as that alone isn't a treatment, it's a way of inspecting the lower colon etc?? I have had 2 of those, the 2nd of which diagnosed my Proctopathy and Diverticulae, but didn't treat anything? Thanks!
I had a severe bleeding and an ulcer after the radiation, so bad that I had to be hospitalized. I remember that in the hospital they used sucralfate in small sealed bowls, very thick and very efficient and easy to use. I tried my best to try to get them and turns out they are only for hospital use in the USA. Impossible to get them. I tried another special preparation not covered by insurance. It's not an enema, super expensive and not useful. I don't remember the name.
Hi all, it's been a while... I kept trying with the sucralfate enemas but I found it messy and difficult to administer correctly,plus I had some other issues so it got a bit stop/start. I had a chat with my CNS last week and she reckoned formalin treatment would be worth a try as it had improved other peoples symptoms so i have been referred. Anyone out there with experience of this treatment / how effective was it? THANKS!
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