Confused!

[Echium]

Due to problems with constipation and periods of diarrhoea, I asked my GP for a referral to a late effects clinic but they insisted on a colonoscopy instead. That was a very painful experience and showed a twisted sigmoid colon but I have been told that is not significant and not a cause of my bowel problems. They also said my colon seemed fine so I am now confused as to whether I have PRD or not! Can you have radiation damage if your colon looks okay? Or is PRD diagnosed purely from the symptoms experienced after radiotherapy?

[jude-the-obscure Community Pioneer]

I had a colonoscopy in 2015.

It was very painful and required the use of Entinox. It revealed a damaged lower bowel - thickened and twisted by radiation. I later saw another gastroenterologist who told me i must never allow someone to intubate my large bowel again - there are other ways of checking for problems. The danger of perforation is very real.

I am about to see my GP to ask for a referral to a late effects clinic. Milled linseed on my cereal helps - start with a teaspoonful then increase gradually to a tablespoonful daily.

Hope you get some help but decline the colonoscopy unless you can have an expert to do it Even then it is a risky procedure if the intestine is already damaged.

Best wishes Jude😍

[BarleyBass]

Hi, I have PRD although no one has ever said those words. I had a sigmoidoscopy a few years ago which showed changes due to the radiotherapy and the consultant wrote back to my gp that as i wasn't experiencing many problems they wouldn't see me again (I had terrible diarrhoea, was going to the loo 8 - 10 times a day and i barely left the house). I contacted the prda and they gave me the details of a consltant who understands prd and is familiar with the algorithm. He arranged several tests and I was diagnosed with bile acid malabsorbtion and prescribed treatment that has changed my quality of life. If you haven't seen the algorithm its on the prda website and may help.

From my experience prd is poorly understood or even cared about in general practice and oncology and you really need a consulrant that understands it. I also echo other comments, never have a colonoscopy or let them biopsy your bowel unless its absolutely necessary. When i had the sigmoidoscopy im sure they thought i was being over dramatic when i told them not to do a biospy unless they saw something of concern, but the risk of perforation and fistula are very real after radiotherapy.

Take care.

[Echium in reply to BarleyBass]

Thanks, I am beginning to consider BAM. A while ago, I had the test for that and it was negative. However, at the time I had constipation so I am wondering if the test only works if you are in a diarrhoea phase? Also I suppose the colonoscopy can only see a part of the digestive system and there could be damage elsewhere. As you say, a knowledgeable gastro to talk to would be good.

[DarceyD]

i don’t really understand myself as my colon check came back with ‘bit pink and a small pouch of diverticulitis but thats to be expected at your age’. I was told the problem is me worrying about it… doc wouldn’t refer me anywhere, dietitician said to stop restricting my diet, so just quietly do it myself and don’t mention anymore at doctors but got daily loperamide on prescription.

[Greenfingers20]

Hi, I think your GP wanted to rule out cancer or other disease in the bowel before referring you on - although dependent on geography there may not be a Late Effects in your area (check PRDA website for list of clinics). Also definitely look at the new Best Practice Pathway on the PRDA website as it will give you good information on what you are experiencing is PRD, an what help we should have, but is yet to be developed in services Nationwide).

I had a flexible sigmoidoscopy some time ago now, before PRD was well known. It was done by a Gastroenterologist/Oncologist so I was lucky really. He diagnosed Diverticulitis, and Telangetes(? not sure of spelling, but surface areas of bowel where tiny blood vessels bleed). At that time there was no treatment or referral. It just helped me understand why I had bowel problems. He was the first person who suggested it was due to Pelvic radiation - but no treatment offered by him or GP.

I manage my bowel problems by eatingsmall amounts, an hour before going out, bathroom before leaving. Wear or take pads and anything else you feel you might need with yu. You can also ask PRDA about RADAR key and the Just can't wait card. Best wishes, try to relax as stress makes it all worse.