Hello Jo,

I can understand why you are feeling fed up at the moment and that you feel you need some definite answers as to what is causing these bowel issues. I can imagine it isn't easy for you to have to live with this on a daily basis especially if it is getting worse rather than better. It might be worth perhaps asking to speak to the specialists who did your pelvic radiation therapy and asking them whether they think your current issues are related to the treatment you received 5 years ago.

I did a little search and found information on our website on pelvic radiation which you can read here and it does mention here that bowel issues can occur as a result of radiotherapy treatment to your pelvic area but I am not sure how long these usually tend to last and whether it is common to experience these long term. It might be a good idea to get in touch with our nurses who might know more about this and will be able to point you in the right direction. You can ring them on this free number if you live in the UK 0808 800 4040 and their line is open Monday to Friday from 9am to 5pm.

I hope you will also get to meet others here who have had similar issues following pelvic radiotherapy and that they will share their experience with you.

Best wishes,

Lucie, Cancer Chat Moderator

Hi Jo,

I had radiation to a plasmacytoma in my left iliac bone. About 4 months later I had to have my sigmoid colon removed and have a colostomy and mucous fistula.

Doctors at first thought I might have vasculitis, then decided I'd had Radiation Colitis. It's since been decided that what I actually had was Ischaemic Colitis. I'm not sure they really know.

I've always refused a diagnosis of IBS, as I consider that a lazy diagnosis by doctors who can't actually be bothered to find the root cause of any problem.

Despite my saying that I thought I had a physical blockage for 21 years, it wasn't until I got cancer and had a series of scans, that they found I actually had a pelvic mass that was indeed causing a physical blockage. And caused by a foreign body response, by something that shouldn't have been there, and was there due to a previous operation.

From googling, it seems that radiation damage to the bowel, usually the small intestine, is a definite thing.

Were I you I'd press for a scan, to determine whether you have an issue such as a stricture.

Long term effects can appear years after radiotherapy, apparently.

Best Regards

Taff

radotherpy damage to bowei afrer treatment for cervical cancer 14 years ago problems sees to be getting increa

singiy worse

Having had radiation treatment 12yrs ago for cancer in the womb that was in2007,2009 I had to have a bypass on  my small bowel was melted together.since then I've had infection after infection,they call it bacteria over growth. It has been a struggle for years, seeing a consultant over the years,I was prescribed antibiotics which I've had to taken for most of the time . The consultant could do no more me. I still having to work, feeling very tired, suffering with fatigue. beginning of this year having gone to work not feeling good and exhausted,I had ask a my fellow worker to drive me home, I've not work since.

No one understood, not even my GP, after emailing Macmillan nurses, they gave me a consultant name which I passed on to my GP it took some time,I thought I was going mad it's all in the head and really feeling totally unwell.

Finally diagnosed with having late stage condition from radiation treatment, they call it pelvic radiation dease

Wendy

I feel for you , I to have same issues plus more . Since finishing radiotherapy and chemo in 2016 I have had problems with my bowels .. the urgency the discomfort . I have tests and scans , camera etc ... only to be told it's radiotherapy damage which is irreversible, so have to take loperamide 2mg daily or I can't eat or drink with needing to go ... some days are worse than others but it's pretty much daily 

I wanted you to know Donnamarie69 that reading your post really helped me ,

I should be used to it by now but today was a bad day ,I had forgotten that I'm not the only one with this

Problem so I thought I would google a blog ,so glad I did 

I had cervical cancer in 2000 a few years after the problems started with my bowels ,I was warned by my oncologist that would happen,

I also take lopermide 2mg only really when I'm going out otherwise I just spend lots of time on the toilet ,

So why don't I take it daily ,,,,,,then I can eat and drink better ,

Thankyou anyway for your post  ,I feel so much better xxx

Hi Jo, I don't know if this will cheer you up or make you worse - I had a radical hysterectomy in 1989 following endometrial cancer and was then treated with radiotherapy  for 3 months. Ever since then I have sufferd from diarreah and other bowel issues. Bowel cancer screening often shows up blood in the stool so I'm hauled back for colonoscopies and scans, but since  -fortunately  - no cancer has been detected, doctors are quite happy to send me home with a shrug of the shoulders. I've seen private consultants but they just say it is damage from radiotherapy and they can't do anything. I've learntt how ot moderate symptoms by using codeine (loperamide lasts too long and for me reduces the ability to pass stools but not the urge, which is pretty miserable.) Some days I'm OK but others it's just a nightmare. Because they can't treat it doctors show no interest or understanding, and I feel very let down by the whole profession. Also doctors are very reluctant to admit that thisis a common side effect. I do feel for you.

Hello Wuf,

                  yes radiotherapy stuffed up my bowel amongst other things,but it saved my life.l think you hit the nail on the head when you said doctors cannot do anything,its permanant damage and the admission price  for an extended life. Like you l seem to be going round in a cycle of relatively good days leading around to an absolute shocker---and repeat.At the moment if l can get the morning out of the way,the rest of the day looks normal.l can totally empathise with the cramping and urges,for me one loperimide in the morning and a sachet of colestrymine at night seems to hold things together until the 7-10 day blow out.Taking more lopermide just bottles it up for later rather than preventing it.Still its just a reminder that l was one of the fortunates that made it through treatment to the other side,and made me appreciate that my bathroom has a very important place in my life,

                                                                       take care,

                                                                                             David

I had cancer of the cervix about 28 years ago followed by 6 weeks of radiotherapy.  Over the years my bowel has been playing up, I had a feeling it was due to the radiotherapy.  In 2020 I was admitted to hospital with a blockage, I ended up having an ilestomy and colostomy.  At the moment I have been struggling, the ilestomy is high output and I have been waiting for them to close it off and use the colostomy.  I also have a hernia and hole in the bottom of the bowel/vagina.  I am finding it extremely difficult to manage things.  Has anyone else got similar problems? Julie