I am a 62 year old woman and had pelvic external beam radiotherapy for five weeks ending in March 2023. Since then I have had bowel problems, a bit of urinary incontinence, lymphedema and tingling like sensations in my legs.
Bleeding from my anus became worse in December. I have since had a colonoscopy that confirmed moderate radiation proctitis in my rectum. I am going to have Argon Plasma coagulation (APC) with application of Purastat . I have been told I may have to have it a few times.
I wondered if anybody has any information/experience of this?
I also have frequent bowel movements that really affect my quality of life. Walking seems to bring on a bowel movement. I was used to walking 5/6 miles a day but now can’t walk more than half a mile before I need a bowel movement. The urgency to go seems to have lessened over time. My stools are formed not diarrhoea. A consultant also thought that a dose of Imodium might give better control over bowel function. I have nt tried this yet as I m wary of becoming constipated. Any views?
At the appointment I mentioned sucralfate. Has anybody had experience of this , helping with bowel frequency?
Any advice/people’s experiences would be much appreciated.
Many thanks
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Bettys-rose
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Hi. Sadly I have no advice to give you. I have been suffering for ten years now, following my treatment but have been offered nothing for my symptoms, other than Immodium. I am interested to know how you get on with the treatment planned for you which I have not heard of. Good luck!
So sorry to hear that. I asked my radiotherapy consultant to refer me to a gastroenterologist but before that appointment came up my GP got me to do a FIT test, had blood on stool and I was seen under the two week cancer rule. No cancer but confirmed radiation proctitis. The local hospital trialed ACP with Purastat a year or so ago, I understand. Hope this is of some help for you, wish you all the very best.
I will post again following treatment. Many thanks
Hi, I had radiotherapy for cervical cancer in 2021 and have many of the same symptoms. I did try sulfracate but unfortunately it didn't help but everybody's different and I would willingly try anything. My next step is oxygen therapy privately as the consultant said there was nothing else they could try. I've not heard of the treatment you're getting but will look it up to see if it's an option. Good luck.
Hi Corey19. I had radiation treatment for cervical cancer and ended up with bleeding from the bladder. Many years after treatment ended I had 6 weeks of hyperbaric oxygen treatment in a hospital. At first I didn't think it made a difference but over time I think it did. I haven;'t had any bleeding now for about 10 years but it could start up anytime. My bladder looked a lot improved after the HBO. I'm not sure if private oxygen therapy is as effective. All I know is that it is more effective close to the radiation treatment. Happy to answer any questions. Best wishes.
Hi, I have proctitis after the radiation in 2020. The first treatment was with sucralfate. A nurse was coming home to do it. I was supposed to do it myself several times a week but I could not do it. It’s messy anema and they stopped doing it. This was in the USA. Too much diarrhoea. I still have bowel problems and frequency and same thing walking triggers bowel movement. I stay home until I empty my stomach completely and after that I go out. I live now in the Paris region and there are no toilets or they are very dirty. I haven’t seen a French doctor yet. I will soon I hope. Appointments are difficult to get. Imodium works for me, the one under the tongue. Good luck.
Hi Romian. Have you considered a daily warm water enema? Just 45 minutes a day gives you 24-48 hours of freedom from bowel movements. I do this every day. It gave me back my life. I feel almost normal now. Happy to answer any questions. Best wishes.
Hello Bettys-rose. I had stage 2 anal cancer in 2016. Completed radiation and chemo at that time. Approximately 2 yrs later I started to have rectal bleeding on a daily basis. My Dr rx'd suppositories for me but they were no help. I am a runner and I had terrible fecal incontinence while running. My Dr suggested that I have hyperbaric therapy treatment. I had 40 sessions and that did help to stop the bleeding. I don't bleed too much at all now but I still have bowel issues. I take immodium on a daily basis and I have had to limit my diet to bland foods. I have dropped 11 pounds also. Even with taking immodium sometimes I have to go to the bathroom about 5 times in one hr. I'm leaving out a lot of my story but I'm praying that you get some help. God bless
Thank you Maria, I ve found having less fibre in my diet seems to have helped a bit. I also take VSL probiotic I think helps too. Good luck with it all.
Thank you. Yes, fiber in my diet is a no no. I take digestive enzymes also. I don't think that they help. I had to remove all lactose from my diet,, even a little bit bothers me.. All we can do is find out what works for each one of us because we are all different. God bless
Thanks Taupe, I will keep all of this in mind on my journey through it. I don’t get diarrhoea just a need to go to the toilet a lot. I know a lot of people a lot worse off from radiation than myself in this regard. Grateful for people’s thoughts and experiences. All the best.
Hi Betty, my experiences are the same, but for me the symptoms appeared 14 years after the treatment for anal cancer. During treatment I ate daily live yoghurt to prevent stomach problems and took vitamin supplements bought from the Bristol cancer centre. Dont know if it helped, but it could be the reason for the delay in proctitis. I now include kefir daily in my diet, I also most days have a smoothy of orangejuice with a thumbnail size of turmeric and ginger, sometimes carrots too. Basically trying to add natural anti inflammatory things to my diet. Also Imodium, one tablet daily. I also wear ‘period’ pants as these give me a bit of security. Morning tend to more urgent, but by about 11 my bowel seems to settle down. I suggest you read up about anti inflammatory foods, if you take kefir, start slowly, but persist, the gut can take a while to get used to it. Good luck x
Thanks, I did try Kefir for a bit, I am taking VSL daily at the moment and some kimbucha. I will look up more on anti inflammatory foods again. Great your bowels settle down after 11.00. I d be very pleased with that. You’re doing a great job. I ve heard about turmeric and ginger being good for your stomach. I will have to give it a go.
No just the imodium. I found the liquid(which apparently they dont do anymore) ineffective, but one tablet fine. I did need to take 3 one day recently, but settled down now. I think with the anti inflammatory foods, I have to take for at least 3 weeks, but it is tricky to know exactly what is helping. I still stick my head in the sand about it, still drink wine about 4 nights a week( only a glass or two, not a bottle) I avoid most roughage, but still have bananas/nuts/seeds on kefir in the morning. Feel luckier than most.
Yes I too feel luckier than most. I too have a gluten free ale and a glass of wine now and then. Having a dry February as had a bit too often in January! 😁I feel for me it’s easy to use alcohol as a crutch . Yes I too find it difficult always knowing what helps. Have nt had seeds for a while, but may have some again soon. Sometimes I think if I a have a little bit of things that can set me off I can get away with it.
These are exactly the symptoms my husband had after radio treatment for Prostate Cancer. The Sucralfate did work eventually but took NINE months of twice daily enemas and really was a big waste of time and cause of stress (I had to do it for him and the second time we tried it they wouldn't give me gloves or the necessary syringe - I had to buy them - NHS here) Go for the APC that worked a treat (once they finally decided to try it). He had to have two goes at it but there were no nasty after effects. By then we were with a different, better consultant who booked two APC treatments straight away about 3 months apart so that he was on the waiting list for both at the same time and didn't have to wait a huge amount more. Also go with the Imodium (Loperamide). Like you I was worried about constipation until a friend who suffers from IBS told me she takes one or two every day! Eventually the doc told me he could have up to four a day. I got him on 3 a day until his serious diarrhoea began to be controlled and then dropped it slowly. He's not on any Loperamide now but if he has any trouble I put him straight back on to it. The other thing the docs forgot to tell us is that he has some Colitis and that was causing the diarrhoea. They let the diarrhoea go on for THREE months, including sending him to hospital for infusions of Magnesium (a lack of which comes from the diarrhoea) before my begging got the proper answer on the Loperimide. GOOD LUCK
that’s very positive news on the APC, great to hear. Feel more confident about it, thanks for the feedback Sally.
I don’t have any Colitis thankfully. I think this causes more problems with diarrhoea. As I don’t have Colitis my consultant said I could eat anything but I know I cant! I take VSL one sachet every evening after my meal. try to have a gluten free diet, minimise dairy, sugar and fats.I have been having less fibre in my diet and I think this has helped as I was able to go for two mile walks and not need to go to the loo during the walk. This happened for three consecutive days, I was so pleased, but early days with it yet!
I think I ll hold off on the sucralfate and Imodium until I get the first Apc treatment , it’s just a couple of weeks away. Then see how it goes from there.
I would be grateful if you could let me know if your husbands proctitis symptoms have gone and when he had the treatment?
No, don't wait for the Loperamide, maybe try a half tablet a day to see if that helps. I wish we'd known it was safe to use a couple of years ago! Try not to have to do the Sucralfate at all!!! His APC was done on Dec 2022 and again in March 2023. The first one worked for a couple of weeks only. The second seems to have worked completely (fingers crossed). One of my problems is that my OH also has Dementia and wasn't able to report properly how his bowels were! I had to make an educated guess! I fiddled around with his diet a bit but nothing seemed to make a difference. I do, however, give him a Probiotic every day now. Hope your APC goes OK and works first time!
Okay thank you. Will give it a go. I am expecting to have at least two APC s . That’s great he’s been okay for nearly a year now. Again thank you very much for the information.
Hi Betty Rose, I can't offer any advise about the treatments you are looking into but I have had radiation proctis since 1999 along with ulcerative colitis and diverticulitis. I have Mesalazine suppositories at night which seem to help and take Imodium capsules as and when needed. I was under a Biofeedback team for awhile and they focused on diet mainly the fodmap to see what triggers an attack . I found that I can't tolerate to much fibre and I try to avoid too much gluten.
I hadn't heard of APC before your post and my gastro team haven't mentioned it, probably because I have other conditions that have to be taken into account.
Hi. My issues started around 5 months after i finished treatment in Sept 2021. Started with anal bleeding which firstly was dismissed at hemorrhoids as it was apparently too soon for me to have this as a result of the treatment. It was later confirmed as radiation proctitus and enteritis. Since then i have pretty much tried everything. I was prescribed Sulfacate enema's twice and they did absolutely nothing for me. Might be different for you though.
I have had 4 rounds of Purastat but again not really working. I see my gastroenterologist every 4 months and she decides if more Purastat is suitable. I don't think i will have any more even if she advises as its not making any difference.
I get the urgency thing and an now mostly housebound due to this, my oncology team have nothing they can offer me and i am running out of options. Hopefully you will have more luck with the treatment than me i have heard its very effective, just not for me.
So sorry to hear that. I don’t have enteritis so maybe it might work better. Hope your doctors can come up with treatment that helps. Other post indicate that loperamide has helped with frequency and possibly the urgency. Wishing you the very best.
thanks for the reply. I have some sort of stricture as well which means i get blocked and can't go. For that reason i have been advised to not take imodium. I do on occasion however if i am going out. Usually i plan in advance and just don't eat for the 3 days before i know i have to go somewhere that may cause an issue. Its tiresome as i can't really go anywhere as a last minute plan but it is what it is.
I’m so sorry you are going through this. My instinctual response is that you address the lymphedema and tingling. Well, lymphedema has always been one of my personal fears.
The doctor who treated me for 5 years after I received treatment, including radiation, told me I could take pepto bismol or kaopectate every day and that it was relatively safe. It helps to nip things in the bud if they start. However, maybe you should try the Imodium for a few days or weeks and see how it goes. Maybe there’s a way to split it if it’s too strong. Obviously this isn’t medical advice! It’s just that I’ve found that doctors just don’t know exact answers. You might have to experiment with your diet too. For me that meant giving up salads and beans and embracing over-cooked vegetable, white rice and plain chicken. It’s a process.
Don’t give up on your walking. I recently “graduated” to adult urinary pads. And when I went to Africa a month ago, I took pull on adult diapers. Which I didn’t use but my friend did. I was super careful with my diet and only had to take the pepto bismol and Imodium when I felt anything starting.
Thanks Bewildered49, yes getting support with the lymphedema , though not funded by the nhs in this area. The consultant said the tingling could be neuropathy caused by radiotherapy and could get better in time.
Thanks for the information on other possible medication. I too have had to stop salads etc, bit of a change to my diet, but slowly adapting.
Great to hear you managed to get to Africa, it gives me hope going forward.
I also had intestinal bleeding after radiotherapy. There was also radiation proctitis, and bowel urgency. I used mesasaline, which did not help, and the doctors did not offer me any other option, because in my country APC and hyperbaric chamber are not used for the purpose of treating the consequences of radiation.
Through the Internet, I collected experiences and protocols for the treatment of bleeding, and with the help of a friend in Italy, I obtained sulcrafate (because it is not registered as a medicine in our country). I used the paste, made from 2g of powder and 10ml of water, after morning bowel movements and before going to bed. The paste does not cause an irritating bowel movement like a classic enema, so it stays in the rectum until the next bowel movement.
It helped me a lot, because I have daily outflows, and now I have light bleeding with the occasional stool. But I had to be persistent, so even now that the symptoms have subsided, I'm still using .
Unfortunately, that was the only solution for me, but APC should help you more efficiently and quickly. The urgency to have a bowel movement is still there, but I've been able to reduce it to morning stools, sometimes one to two more a day. When I I have to walk longer, travel, have meetings, I just don't eat until I'm safe- next to the toilet.
Thanks Nenal, sounds like your persistence has brought some success with the sucralfate. I hope the urgency and frequency will reduce following APC. However I understand it may not and your advice about not eating may become useful.
Hi. I thank God for this forum through which we can receive and give much-needed encouragement. I had the same treatment in May and June 2019 and symptoms started right away and worsened over time up to October 2021 when I saw a medical doctor who is a Functional Medicine Specialist. By that time I was having diarrhea that was fully liquid and so bloody that I feared I was bleeding to death - more than 12 times a day. He asked me how my body responds to a long list of foods, including fruits and vegetables. His conclusion was that my body was reacting to high histamine, high FODMAP and nightshade foods. He gave me the list of foods common in Uganda (where I live) that fall in those three categories and suggested that I leave those foods out of my diet for at least 3 months and introduce them one by one after that period of time. Abandoning those foods stopped all stomach cramps, bad gas and diarrhea and drastically improved my well-being, within two weeks. That was after I had seen my gastroenterologist (in South Africa where I received my treatment) over several reviews and he had confirmed that I had radiation proctitis and radiation enteritis - with none of the treatments he gave me being helpful to me. In addition, I was undergoing a gastroscopy and colonoscopy and he was finding polyps in my colon and removing them every 6 months. the gastro conducted the same procedures in Oct 2023 and Nov 2023 and no polyps were found in my colon. It has been a great relief. Therefore, personally, the guidance of the Func. Med. Specialist has been very helpful. Maybe, you might want to consider looking for and seeing one because where the gastro said, "At least you are still alive," the Func. Med. Specialist said, "We can fix this through diet." And it worked. I move and travel freely as long as I keep to my heavily restricted diet. I use a lot of supplements prescribed by the Func. Med. Specialist. I do not use Imodium. I hope that info helps you on your journey.
And in case you are wondering, every single time have I tried to eat a bit of any of the foods I left - I react immediately and get the symptoms I had previously - including diarrhea. That has led me to believe that the injury I got from pelvic radiation is permanent, unfortunately.
Yes I agree the forum is of a great help. Thank you for your information. I don’t have enteritis which is a blessing. I hope I don’t get it further down the line. I can see it causes a lot more problems. Not sure if we have Func med specialists here but I am aware there are specialist clinics around the country. So that is an option for me. Great that your specialist did help and you are able to move and travel freely. Gives me confidence.
hello Betty and all of you brave women dealing with this radiation damage. I have tried all the ideas listed here with varying results. My stricture seems to be the biggest problem now and I am Being urged to have an “ elective” colostomy which puts all the burden of decision making on me and I am no doctor. If there are any medical professionals reading this, here is my question- why are all these women suffering from the side effects of radiation that have followed me and my 43 yr. Survivorship. Why have the treatments not improved, where are the advances? I hate to think of any cancer survivor facing the suffering I’ve faced and I just don’t understand why the same treatment is being used and the same outcomes occurring, where are the advancements in treatments for women?
I understand your frustration. I had pelvic radiation 3 years ago and now I'm afraid to go out or too far from a toilet.
Also I've had colonoscopies and argon treatment to the extent where apparently they can not repeat it anymore.
The one heartening thing is that I have been told that hyperbaric oxygen treatment is often very successful at healing the damage in the rectum caused by radiation. I am on a waiting list for treatment but I'm not sure when I shall actually get onto the treatment.
Sorry to hear that the argon treatment did nt help. I had my first one recently and will be having it again in a few months. I ve seen some improvement so far but early days.
I hope you get on the hyperbaric treatment soon and it is successful. Thanks for the information. It’s good to be aware.
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