Bowel problems and Radiotheraphy

Hello Coltrane, 

                        I finished my radiotherapy in December 2021 and have 3 courses of r.t. to the secondary tumour on my pelvic bone. The bowel issues started some months after thr r.t. with urgency, mucous and bleeding. I was referred to gastrology(urgent refereal) but it took 8 months to see consultant. He ascertained the lining of my bowel had been damaged. I tgen had 4 sigmoidoscopies at 4 weeks apart and 'Purastat' (a haemostatic agent) and this treatment curtailed the bleeding. The urgency and mucous have persisted and at my last gastrology appt. the consultant said unfortunately it is now a chronic issue which I will have to manage.

                     Venturing out has to be planned so I know where a toilet is situated and my 'Macmillan toilet card' has been used at businesses and stores, etc. The urgency gives no warning and cones on so suddenly. I now carry a bag with pads, underwear and trousers as I have been in some right states these past 2 years. It affects every aspect of daily life. It has even affected my going to the match at Middlesbrough. 

                 I am part of the research programne at Newcastle University (Colo-Spirit) into management of radiation to the pelvic area.

                The gastrologist stated that the symptoms usually settle down after a few weeks but he also said that a small percentage continue to experience chronic problems. 

               So pleased your symptoms have settled down Coltrane, thanks dor raising the subject. 

             Cheers, Graham. 

Hi Coltrane ,  that sounds like real progress.  Fingers crossed that it settles down long term.  David

I’ve had similar but without any hospital/GP interventions. The urgency is the worst part and can’t generally leave the house until I’ve had some kind of movement after eating in the morning. It seems to cycle from mucus, soft, hard, mucus etc etc over a 2 week period. Just when I think it’s better, next day for no apparent reason I’m all over the place, literally. 
I’ve spoken about it at every review, at one stage they said they could do something but it may make it worse. The last review a month ago I was told if it hasn’t fixed by now, 18 months after RT finished, it probably won’t. 
I cope now with planning and tolerance. But I despair to think how I’ll cope, or those around me will, as I age and get less independent. That’s not for some years yet but time marches on. It’s not fair on those around me to have that burden. 

Hello Malnik, 

                      I sympathise with your predicament as like you I have been told the damage is done and will have to manage it. As I mentioned in my case the Purstat treatment over 4 months curtailed the bleeding but had to wait 8 months for the consultation.

                 I replied to Coltrane's post this morning after cleaning myself up and getting changed which is now the norm.

                The only thing for me is I know now I have to live with this condition and manage it the best way I can. Finally when folk ask 'how are you' it isn't the easiest subject to talk about.

            All the best Malnik. 

           Graham. 

Hi Coltrane, great to hear bowels are good,  I too had Bowel issues post RT April 2023, all down to aggressive RT to the whole pelvic bed from bladder neck to top of the rectum, which damaged bowels and vagus nerve, resulting in constipation off and on, mostly on, for 14 months, not helped by having a tumour in my anus removed and a few fissures. At its worst I was going every 3 days on average, bleeding 95% of the time, passing out momentarily when trying to force it, "put pressure on the vagus nerve " or ending up in A&E. I worked out when and what to eat to give myself time to heal, helped by taking osmotic laxatives. "relieved ", to say no bleeding for over 3 weeks and fissures are history as is any pain, PS have cancer in mesorectal and perirectal nodes so know problems will return, so will enjoy it while I can.

Eddie xx

Hi , this is what’s worrying me having radiotherapy after brachytherapy, with Crohn’s , last thing I need is my Crohn’s flaring up when I’ve got it under control, my consultant said I could just go with HT injections, but may only last ten years at most , 

Hi ]Wednesday22 

My OH has IBS and he had a 'SpaceOar" put in between RT area and Rectum wall. ( had to pay for this) He had no problems after, though hard to say whether he would of had problemsor not really. But there are things out there that can protect. You could ask about it on your next consult. 

L

I've had the rectal spacer hydrogel too (not sure if it was the SpaceOre brand or another), also done privately. I had about 3 weeks of bowel issues after my 74Gy 37 radiotherapy sessions. luckily after that everything returned to normal. I was told beforehand the gel prevents long term damage (prevents high-grade gastro toxicity)  but I may experience some short term issue. I'm glad I've had that procedure.

G

Hi L1m You are on a similar path as MrBW, How are you getting on? It's been a good year since BW's RT and things have settled down more. When we look back on the last year we can see a big difference now with overall fitness and recovery.  Still fatigue, but he's managing that better now.

L

Yes, very similar path (abiraterone 1000mg + LHRH which for me is Prostap). I'm ok overall but suffer with fatigue and hot flushes. I initially gained weight, especially around the middle, but was able to control that with a strict diet. overall fitness is massively down compared to pre-treatment, though my starting point was extremely high. I'm finally starting to see some gains in fitness again, nothing close to where I used to be but its nice seeing improvements rather than constant decrease. I'm running 10ks again  now (previously 20k+) and cycling 40k (previously 100k+), both at much slower speeds than before, but at the height of radiotherapy I was straggling to even do a 5k. so overall it's progress 3 months after RT. PSA is fluctuating a bit but it's around 0.14 (+-0.06) and as the oncologist is happy I try not to worry. The strange thing I find now is that while the exercise numbers are getting better the fatigue while not exercising is similar, and I still need multiple rests a day, roughly every 1-2 hours. 

Hopefully life can get back to normal in 3 years once treatment is done.

G