Radiation Proctitis - check it out - it causes long term diaharrea

What a relief for you…

thanks so much for the info I think that is so interesting as the docs are often disinclined to discuss things that you may have found out yourself;)

I’ve definitely had symptoms of this although still relatively early day from finishing treatment (3 months ago) but the oncology team was keen just to trial loperamide in the first instance.

what treatment is there for proticitus if that’s ok to ask?

best wishes 

Nell 

Janno

I am so relieved that you now have a definitive cause for the bleeding and anemia.  But I am horrified by your doctor's cavalier attitude in giving you a bowel cancer diagnosis without waiting for the results of the endoscopy and colonoscopy.  Interestingly, I visited my GP on Monday who told me that in light of my history, they had a very low threshold for referring me for any problems just to be safe.  That didn't alarm me at all, what you were told would have terrified me too and I am really quite angry on your behalf.

But it is good news and thank you so much for your encouraging message to others on here who may have similar problems.

Irene xx  

Hi Janno , you must be incredibly relieved, although it’s not ideal it’s better than the conclusion your pretty tactless GP jumped to!! Also thank you for highlighting the possibility & symptoms of radiation proctitis. I hope your treatment for this is successful. Please let us know how you’re doing. 

Nicola 

Hi Nell

Congratulations on finishing treatment - it's all recovery from now on.

As regards treatment for proctitis, I believe there are a range of medications and enemas to treat internal inflammation and swelling - but treatment is not usually given if proctitis is mild as it can be controlled with loperamide (Immodium).  I have taken 1 Immodium almost every day for 14 years and, I have to say, it has given me a normal life with, as far as I know, no side effects.

Kind regards

Jan

Hi Irene

Thanks for your reply. 

I have found one of the distressing aspects about post treatment medical staff is that I have never found anyone who knows what anal cancer is - outside of the specialist team.  And that includes consultants in other departments in the hospital.

During my recovery the district nurses applied for end of life benefits on my behalf because they thought anal cancer was the same as rectal cancer - and, because mine was on several lymph nodes, it was thought likely that it would recur or cause mets - which it probably would have done if it had been rectal cancer.  When I pointed out to them that it was anal cancer and not rectal, they told me I was being pedantic. But anal cancer is a skin cancer and I was told by the specialist team (rightly) that it was unlikely to be able to find its way into the lymph fluid.  And thank goodness.  

The problem with this is that it makes me avoid looking at problems - as I don't want to keep being sent for unnecessary tests - especially colonoscopies the preparation for which I find almost intolerable.  I guess it is good that I finally got it checked out.

I got so much online support from other anal cancer suffers at the time of my treatment, I think these sites are invaluable for support and information.

Jan x

Thanks Nicola- yes the results were the best I could have hoped for and the surgeon was incredibly nice and leant over me on the bed, during the process, to tell me that my bowel was completely clear and showing no sign of cancer.  It was good to get it check out anyway - even though it has left me drained.

Jan, I haven't encountered that level of ignorance so far, and I am not surprised you found it distressing.  Hopefully in the intervening 14 years things have improved somewhat.

I think forums are such a valuable resource too and I wish the medical professionals would read them too - they might learn a thing or two!

Irene xx