Formalin Enema

[Oonsy]

Hi all, I was diagnosed with radiation proctitis (in addition to other bowel issues!) following my treatment for cervical cancer in 2019. At that time I was experiencing heavy bleeding and was put on the waiting list for a formalin enema. However due to Covid this was postponed and over time the bleeding has decreased significantly, I only experience bouts time to time.

I have just received a letter to say that the treatments have restarted and I have been booked in for a formalin enema, however I am extremely hesitant to have it done as I don't know anything about it, or it's side effects (and also because the bleeding has improved).

Has anyone been through this procedure? And if so, could you explain what is involved and the (honest) side effects. I don't want to put myself through something that isn't necessary, or have to suffer afterwards and my consultant has been very dismissive...

[Mariecapp]

Hello. I too suffer from daily rectal bleeding. I'm 4.5 yrs post cancer treatment for anal cancer. I have never heard of this. What is it?

[Oonsy in reply to Mariecapp]

Hi Marie, it's a procedure where they coat the inside of your rectum/bowel with a solution in order to allow the irritation to heal. That's about as much as I know at the minute, it hasn't been fully explained to me!

[Mariecapp in reply to Oonsy]

Wow! Maybe I should look in to that. Thanks

[Sarah_PRDA Partner in reply to Mariecapp]

Hi Mariecapp

Is your rectal bleeding likely to be related to your radiotherapy treatment? Have you reported symptoms to your healthcare team?

I see from your profile that you are in the US. I have posted a link below on guidance for GI related late effects of radiotherapy which you or your healthcare provider may find helpful. I must point out that some treatments may not be available/licensed in the US.

The Practical Management of the Gastrointestinal Symptoms of Pelvic Radiation Disease:

be.macmillan.org.uk/Downloa...

Hope this helps

[Mariecapp in reply to Sarah_PRDA]

Thank you for sending me the link. I saw a gastroenterologist and he told me that, yes my cancer is gone but I have terrible radiation damage to my rectum. He gave me suppositories but sometimes when I use them they make me bleed. I saw a urogynocologist and he did a urodynamics test then a cystoscopy and said my bladder doesn't empty the way it should. I am a runner and I leak urine at times when I run so he wants to give me a bladder sling. At this point I don't know what else to do. I'm getting use to living with these problems but, at times it is depressing.

[Sarah_PRDA Partner]

Hi Oonsy ,

Formalin is used to chemically cauterise the bleeding (typically caused by radiation induced telangiectasia).

Are you able to get in touch with the person who originally referred you for Formalin Therapy? It would be worth speaking to them again to update them about the change in your symptoms, there may be an alternative treatment.

Best wishes

Sarah

[e-mail]

0113 278 5405

[Oonsy in reply to Sarah_PRDA]

Hi Sarah,

Thanks so much for your reply.

Unfortunately the consultant who I was previously dealing with has left and I have asked to speak with someone else but I'm still awaiting response...

I have just put a call in with my oncology nurse for her advice so I will take lead from there I think.

[Sarah_PRDA Partner in reply to Oonsy]

Hopefully your oncology nurse will be able to review the suitability of Formalin now that your symptoms have changed. Hope you get on OK, but give me a shout if there's anything I can help with.

[Oonsy in reply to Sarah_PRDA]

Thank you so much again!