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Any treatments for me?

User
Posted 01 Aug 2021 at 20:48

Hi all. last June/July (2020) I had 20 fractions of Radiotherapy (3+4=7). I had all the suspected side effects and they went, as promised, two weeks after the treatment finished. This Feb/Mar (2021), I had a colonoscopy to find out why I was passing blood every time I went for No. 2's. Anyway, long story short the doctors diagnosed Proctopathy, or Radiation Proctitis (including scarring on the inside of the bowel wall) and that was it. They basically said "You have this, now off you go".  No treatments were offered, but since then, I have had lots more blood and blood clots, lots more pelvic and abdominal pain and very bad indigestion (which will be investigated soon I hope). All of these are slowly getting worse.

I heard only this last week that there may be some treatments available to someone in my position, but does anyone know what they are? So that if/when I go to see the doctors about it, I will be fore-armed about it and can tell them what I would like done about it, etc.

Many thanks to anyone for your help.

User
Posted 02 Aug 2021 at 00:24
A colorectal steroid foam - members on here in the past have had Colifoam and found it helped but I have something in my head about that being withdrawn a couple of years ago so there will be something similar on prescription but with a different name.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Aug 2021 at 11:58

Ross

Hyperbaric oxygen treatment is a possible treatment for your condition. I tried it for the radiation damage to my bladder but I was too far gone. If you Google "hyperbaric oxygen radiation proctitis" you will see some articles. 

There are a number of centres around the UK,I was fortunate to have a chamber about a mile from home and from memory I paid around £17 per session.

 

Added, £25 joining fee, First session free, £15 a session if related to cancer.

Thanks Chris

Edited by member 02 Aug 2021 at 12:58  | Reason: Added information

User
Posted 03 Aug 2021 at 11:39

Thanks Lyn & Chris. I'm very glad that I can say that my latest flare-up has flared-down quite a bit! I was in a real mess Sunday I can tell you. 

I remember asking about Colifoam while I was still on Radiation and someone said that it wouldn't be an option and I think that was because of the location (NNUH hospital in Norfolk). But I can't remember why they said that?

I've not heard about the hyperbaric treatment though and will definitely look into it!

Many thanks again to you both.

User
Posted 03 Aug 2021 at 18:56
Don't take any crap. Colifoam may not be available but other steroidal foams are approved on the NHS for exactly your situation
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Aug 2021 at 03:56

Thanks again Lyn. I will ask about it when I next see or speak to someone at my surgery. If they can't help, I'll wait till my next six-monthly PC phone call in October, if I can.

 
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