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50 years of Radiation Enteritis, finally something to help.

User
Posted 15 Aug 2024 at 18:33

I had an Orchodectomy for Teratoma and Seminoma in 1974, aged 19, followed by 6 weeks of abdominal radiotherapy. I was told I might survive for 5 years or so if I was lucky. Also, no question of becoming a father.


I've had two lots of lymphatic secondaries with two laparotomies for removal of lymph nodes (some of which were stuck to my aorta) and some heavy duty chemotherapy in the mid 1980's which brought its own lasting effects.


Over time the Radiation Enteritis has got worse and I've spent more time in the toilet than any other room in the house! The pain, urgency and colicky short fuse warning of impending diarrhoea has been the ruin of many a day. My wife, Diane has been incredibly understanding, empathetic and supportive.


Imagine my scepticism when I read on line of someone who shared the simplest bit of advice I've ever read!


He too has Radiation Enteritis and his Thai neighbour suggested that he have a small bowl of tapioca pudding for breakfast to help his condition. Yeah. Right. But, what had I  got to loose? I remembered Frog Spawn from school and in a good way.


I got a bag of small tapioca pearls and followed my mother's recipe to make some. 3 oz tapioca pearls, 1 oz demerara sugar and 1 and a half pints of milk. Which I've since changed for Oat drink (milk). Cook it up till it's thick and the pearls are translucent. I keep my bowl in the fridge as there's enough for a week of small breakfast portions. I  heat it up each morning in the microwave for 1 minute.


Within a week my symptoms had improved! I'm now three months into my tapioca breakfast and have added a pro-biotic drink to help keep my gut flora steady and... wait for it.... my bowels are the best they've  been for years! I no longer have a Loperamide for dessert, I  have normal bowel movements, I have very little pain or colic and I'm now in good enough condition and bowel health to have BRT next week and a second round on 2 September. I'm very hopeful of not having the side effects I'd been contemplating. 


Some research on tapioca revealed that it has a high concentration of long chain fatty acids that reduce inflammation. Inflammation caused by Radiation Enteritis has, in my own and the guy on the forum's cases, that has been reduced by what I can only describe as an amazing amount. I still get occasional flare up - usually by eating a trigger food I  can't resist, but almost no colic or pain.


So, I  decided to chuck my personal experience out for others to try. If it brings just one more person relief then I've done a good thing in passing this on. It might not be so dramatic a result with everyone but, give it a try if your life is being made miserable by Radiation Enteritis. 


By the way, I'm not selling anything, I  won't gain by others giving it a whirl. I'm a retired NHS Nurse and College Lecturer with a firm background in health including teaching  diet and nutrition. I had a healthy scepticism which my own experience has dispelled. I'd be interested if others find it works for them. I've recently come across tapioca flavoured with Pandan Leaf which is rather pleasant.     Oh yes, 50 years on and I've got four children, 9 grandchildren and a great grandchild. My Oncologist thinks I might be the 'last man standing' of my cohort of 1974.

Edited by member 17 Aug 2024 at 10:49  | Reason: Misspelling.

User
Posted 17 Aug 2024 at 10:43

If anyone decides to give tapioca a try, let us all know how you get on.


Please bear in mind. It's not instantaneous nor a 'miracle cure. As it's the only change I've made to my diet the observations are from my own experience and I feel it's working for me.


Radiation Enteritis is miserable and can ruin meals, eating out, having friends/family round and I've missed loads of half decent TV. So all I can say is... Good luck and hope it works for you too.

User
Posted 10 Nov 2024 at 08:20

Update:


Still having tapioca for breakfast and my Radiation Enteritis symptoms are still very calm.


Meanwhile, I've had Mono Brachytherapy. My Oncologist was very concerned that it could set my symptoms off plus other collateral damage due to my tumour being against both my bladder and rectum. The first procedure was as planned but the second much more focal and revised to limit the possibility of damage. The dosage of Iridium 195 was not reduced from the 40 Gy planned and the team said they were very pleased with how the two procedures had gone.


I'm now more than a month on from the second procedure and side effects so far on my Radiation Enteritis have been minimal (fingers still crossed).


My PSA pre first procedure was over 15 and had climbed rapidly over a short period from a steady 10-ish for some time. The tumour was bulging the prostate capsule against the rectal wall and base of my bladder so my Oncologist rang me at home to get me in sharpish.


I'll be reviewed at the end of January next year. But a check for a general Urology follow up has revealed my PSA is currently 1.43. Which, although not a tumour marker is showing a positive direction of travel.

User
Posted 10 Nov 2024 at 12:40

Interesting, and I hope you do well on the HDR Brachytherapy.

User
Posted 10 Nov 2024 at 13:13

Thank you Andy, for your kind wishes.


I hope you too fare well.

User
Posted 10 Nov 2024 at 18:09

Yes, sounds interesting….always good to hear of treatment which help with side effects of treatment.


Good luck and keep us posted.


Derek

 
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