Hello you lovely lot, has anyone had any severe damage to their bowel following radiotherapy.
I completed treatment end of January 22, there was always concerns about me having radiotherapy due to the fact I have a diagnosis of IBD however it had been in remission for 6 years at the point of my diagnosis of cancer.
My bowel behaved well during treatment and caused no problems at all and I was really fortunate to have a total response to treatment however about 2 months after treatment ended I started passing mucus when I passed wind, this then changed to passing blood mixed with mucus. My post three month mri showed proctitis of the bowel.
As the weeks have gone it has become worse and worse to the point there is constant pressure in my rectum, my bowels never feel empty even when they are , I’m passing wind and blood and mucus will run down my legs, I was having tummy cramps and my stools are very thin I’m guessing due to the inflammation. I’ve been prescribed steroids and enemas which I have been using for a week. No real improvement but the stomach pains are less now. I have spoken to a gastro consultant today who has said he will book me in for a sigmoid flexi and they will take biopsies my bloods show inflammation but they aren’t too bad.
I am utterly fed up and so sad, i wonder if anyone else has suffered with this to the extent I am suffering and what the outcome was?
Hi @Leahlouise - I have been experiencing increasing blood/mucous for the last few weeks and will be reaching out to my team about it this week. It’s the only real side effect I am experiencing at this point. I hope you are able to get some relief and answers. I am interested in others’ experiences as well. I really don’t want to be anemic again… it’s been so nice to feel kinda normal again.
Hello, thanks for replying and making me feel a little less alone. I am utterly at my wits end and spend some days crying, I feel completely worn down and defeated.
When did your treatment end and when did the symptoms start? Xx
Hi, I finished treatment for Stage 2b cc in June 2021. I have a number of autoimmune conditions including coeliac disease. During the radiotherapy treatment I really struggled with my bowels so much so I nearly gave up. From week 1 I had continuous diarrhea with fullness in the rectum/wind/mucus/stomach cramps as you describe. I practically gave up eating and lost two and a half stone. Anyway, after treatment things settled down slowly but just before Christmas 2021 I started to experience bleeding from my bowel which was very heavy at times.
My MRI showed thickness to the rectum. I had a colonoscopy in February 2022 in which I had 18 biopsies taken from the large bowel and have been diagnosed with a form of microscopic colitis and radiation proctitis. I’m currently on a course of steroids which I’m tapering the dose and am finally able to leave the house although it took at least 2 weeks for the steroids to start to work. The stomach cramps and diarrhea/urgency have improved but I do have radiation proctitis so am still bleeding pretty much everyday. My oncologist has suggested APC Argon Plasma treatment which I will look into. Maybe this is something you could mention to your gastroenterologist. Could it be your IBD is flaring and you also have radiation proctitis.
I really understand how you feel and how distressing it is to be suffering with bowel issues. I have felt very isolated with my condition and have lost a lot of confidence in going out etc but am slowly improving. I hope you can get some help.
Hi @Leahlouise - If I am remembering your story correctly, you really have been through the ringer and for a long time. No wonder you are feeling worn out.
I had a terrible time with my bowels during treatment and lost a lot of weight. My treatment ended January 18. February I had a lot of mucous and pain, which seemed to be getting better. Ironically symptoms started gradually two days after I saw my doctor for scan results. (April 19). At first it was just blood with stools every few days, now it is daily mucous and blood without stools and skinny stools like you.
Thank you for letting me share and the TMI gross factor . It’s a hard thing to talk about.
Thank you Dar8. Didn’t mean to waffle on about myself in last post but it’s not something you tell friends the grim details of or think people would understand.
@Wolfiewolf - I didn’t think you waffled on at all! And you are right - it is one of those things you kinda have to experience to fully understand.
I am grateful for the treatment and for my life - but blood and mucous in my stools? Seriously?? Sorry - humour is one way I cope - not trying to make light of anyone’s experience.
@Dar8 yes it will probably be me you are thinking of, I’ve had a really difficult 18+ months and I am really struggling emotionally and physically. I was pretty much hysterically wailing this morning and my partner had to carry me to the car to take me to a n e. Any minor twinge or pain I believe it is something serious and I am going to die, I think it links to the months before diagnosis and getting sepsis which was really traumatic for me. Having had IBD for upwards of ten years blood and mucus isn’t new to me, but I am finding the symptoms shocking and scary and I am constantly creating worse case scenarios in my head.
Wolfie it is really helpful reading what you have said and your experiences - I freaked out earlier when they mentioned biopsies. Again this is me jumping to worse case scenarios every colonoscopy I’ve had prior to cancer I’ve had biopsies so my logical mind knows it’s normal but I was panicking it meant it must be cancer. I am going to research APC - I’ve not heard of this. I am so glad you felt able to share this with us and see it’s your first time posting so thank you. I think alot more people suffer with this than we know but that people find it embarrassing so don’t talk openly about it.
Interesting you said you it was week 2 of steroids you started to notice any improvement I am only 5 days in but the IBD nurses were freaking out and sent me to a n e this morning saying they should have worked by now - but then a n e weren’t concerned and neither was my gastro consultantant when I spoke to him ! So I think perhaps the response is different in radiation proctitis!
Thank you all again, for helping a really scared girl
@Leahlouise - I am so sorry you have and continue to go through so much. Your feelings are completely understandable considering all of the trauma you have been through.
I will be keeping both of your experiences in mind as I reach out to my team this week. Thank you both so much for sharing and helping me feel less alone.
Yes do speak with your team, please don’t suffer and battle on. As I am sure there is lots they can do to help and get it under control.
Please keep me posted how you get on!
It is Such a tough journey and I know I fall victim to just wanting everything to return to normal without proper consideration of what my body has actually been through ! Xx
hi everyone
please bear with me,this is the first time I have used this forum.
As I am typing this message i am experiencing awful tingling and numbing pain in both of my feet, I don’t want to take Oramorph AGAIN, but I cannot sleep without pain relief. I mentioned these symptoms to a nurse at my last 3 monthly appointment, she was quite dismissive and made me feel that I was being ungrateful, of course I am grateful to everyone who were involved in my treatment. I also get very tired, and experience bowel problems along with bladder changes too.
I am now going to have to take my Paracetamol capsules, Oramorph and Cyclazine for the nausea
So sorry to hear you’re suffering the tingling sensations. Have you spoken to your specialist regarding possible neuropathy as a result of chemo?
Perhaps gabapentin or Pregablin would help ease the symptoms without the need for the oramorph. It knocks me sick now too since it was my best friend at the start of diagnosis!
Hello,
Thank you for your encouraging words
I appreciate it, i shall make an appointed with my GP to discuss things, will probably have to wait gor 2 weeks or so, but i do need more support.
I had to deal with the diagnosis treatment etc on.my own because of Covid, i live alone
joining this forum was a good idea, thank you again
Carol xx
So sorry to hear you’re having to go through this.
I finished treatment 10 months ago. During treatment, I had terrible diarrhea. That resolved quickly after I was done with radiation. But I too had and still have trouble with my bowels. Having to make a run for the toilet at work, stool being soft and mushy, zero bowel movement, mucus.
Mucus has disappeared over time, but it took a few months.
Two things really helped me: 1) Keeping a food diary. I figured that some foods don’t work for me anymore at all. The worst being apples. Not only fresh apples, but also small amounts of dried apple in cereals for example. Eating tomatoes isn’t a great idea either, neither is onion. Since I’ve figured this out, my digestion has become so much more reliable than it used to.
And 2) Heat-inactive lactobacillus acidophilus (I hope that’s kind of the English name, I translated it literally from German). One pill a day that I can buy over the counter at the drug store. My stool’s consistency has improved immensely since I started taking these probiotics. And gets worse again when I forget to take it.
Omg i am about to start chemo radio next week after 3 cycles of chemo have now finished but i got covid oositive last week so they skippedmy last treatment. I am already worried it will be 3 half weeks gap sincelast treatment especially as i was having weekly cisplatin and daily etopiside until then. I have IBS And usually its cinstipation byt have had diorreah since treatment and that is before i even start radio… So this has worried me reading all thesebowel problems as i know we get told there are risks buti am grateful for any treatment that will possibly save my life but do not want to spend tge rest of it feeling so low i cant go anywhere except a toilet? Surely there are good treatments avaable if not stoma bags if it is that huge a problem… I am now worried sick for my future if this is acommon occurrence as i thouggt it was just a small risk until now…
I know the feeling all too well. Finished treatment for stage 3 at the end of September. Had the usual radio runs during treatment but nothing major. Fast forward to February when i started having rectal bleeding and constantly feeling like i needed to go. Had ridiculous pain initially as well which my oncologist tried to say was piles.
Kept on at them though and had a sigmoidoscopy which showed 20 cm of damage to my back passage, by this time the inflammation had gone down a fair bit. Prior to this i was given sucralfate enemas which did nothing in my case.
I am currently awaiting another sigmoidoscopy at the beginning of August when they will coat my colon with a treatment called puristat, if after this appointment there is improvement it will be repeated 6 weeks later…oh fun
In the meantime i have my bloods done every 2 weeks and am on iron tablets. I was told at my last blood test if things didn’t improve for the next test a blood transfusion will be needed.
Can’t when proper undies and live in those paper knickers intended for bladder incontinence. Wouldn’t you have thought there would be something for rectal bleeding but no. Lessens the washing though i suppose. Just shout if i can help in any way, i am 4 months in and it seems like its taking over my life
I finished treatment in February 2021 my bowels never really went back to normal but they got much worse with bleeding and lots of wee accidents in September. I’ve been on steroids twice which helped whilst I was on them but when I came off it got bad again. I’m now on Mesalazine and that and a very low fibre diet seems to be working, I’ve been on them a month and have another two months before I see the consultant, hopefully this will do the trick. It’s a horrible thing to go through but I’m cancer free and hopefully on the mend. There is light at the end of the tunnel.
Hi Leahlouise,
I’m 2.5years out of treatment. At the time I brought up this same question and several people said the crazy excessive mucus production took nearly a year to stop. Mine did stop after nearly a year.
I’ve been left with some bothersome side effects. I have 13cm of damage to my sigmoid colon, radiation proctitis and extensive bladder damage. A year ago the bleeding from my colon and bladder got really bad. I would have blood in every bowel movement and consistently have blood with small clots in my urine. I have to be really selective with my diet as so many things seems to kick off a bad reaction in my stomach. I do find following an IBS type diet massively helped my bowels. Anything I have been offered in the form of treatment seems to come with lots of side effects or the treatments are invasive. Not only that but a lot of the treatments need to be repeated after a short period of time. I have a wonderful gastroenterologist who told me that she would not be happy for me to have APC (laser) due to the length of the damage as she thinks it would narrow my bowel and cause even more problems.
I decided to start a course of hyperbaric oxygen therapy. Sadly it is not available on the NHS (not sure if you’re in the Uk). I do mine through my local MS Therapy Centre. The recommended treatment for people with soft tissue damage from radiotherapy is 40 sessions. I have mostly finished my treatment and I have had an 80/90% improvement in my bleeding. It is expensive and time consuming but so worth it if it works.
x Maria
Thank you so much for all of your replies I certainly feel a lot less alone!
I am now wearing pull up absorbent disposal pants as the mucus is so much. I am on steriods form the bowel team but aren’t noticing a great deal of change they tried me on mesalazine tablets and enemas and my god I had the worse allergic reaction which saw me unable to use my legs and just loose complete control of my bowels, I had a temperature was dehydrated and was in a real mess. I’ve lost a stone in just over a week.
I am in the uk and very interested in the hyperbaric oxygen treatment how did you go about organising and what is the cost?
I feel hopelessly depressed this past week I cry every day most of the day, I can’t get dressed, I feel stuck in this awful grey area where I feel sad and then berate and guilt myself for being upset when I’m Alive , it’s 12 months since my diagnosis this week so I don’t know if that is weighing heavy on my mind, but I just feel utterly awful xx
. It’s a hard thing to talk about.
