Radiation Enteritis

[CrochetDancer]

I have just been diagnosed (after 2 years to & fro A&E) with radiation enteritis. I already have 2 stomas and the colorectal consultant wants to do a 3rd and his intention is to go back to 2 stomas in 6 months. Intentions are all well and good but are not concrete.

I was wondering if anyone else has this problem?

The consultant wasn’t nice or understanding and his nurse kept shouting at me. I doubt they would be so keen if it were them. I tried to explain its hard with 2 stomas but they weren't interested.

[accidentalcarnivore]

Welcome to our group. So sorry for your suffering. Have you been able to explore alternative actions to surgery? I have radiation enteritis from treatment in 2007 for cervical cancer. The nature of the enteritis has changed quite a bit over the years. Acute during treatment, significant reduction in symptoms over the next year, and then slow progression of various symptoms and syndromes over the next 14 years. I was able to avoid surgeries eventhough they have often been suggested to "improve my quality of life". I was sceptical of this. However, my persistence has left me extremely limited as to what I can eat and my life is often disrupted by digestive issues. Not giving any advice, just sharing..... You didn't say how long ago your treatment was or what it was, so just sharing is all. Hugs your way

[CrochetDancer in reply to accidentalcarnivore]

Hi,Thank you for your reply.

I had cervical cancer in 2014. I had 6 weeks of radio and 3 lots of brachy. This damaged my bladder and bowels and I have 2 stomas (colostomy and an urostomy). I have a fistula down below from which I leak constantly, so I have lot going on. Which is why I don't want or need a 3rd stoma. Plus no one has ever heard of such an insane idea.

I have been to and fro A&E for 2 years with obstructions and only now this has been picked up. Plus the surgeon told me it is "progressive" and I am terrified. I wasn't offered any hope, kindness or understanding.

If my bowel is diseased then a 3rd stoma won't help. The diseased part needs to be removed and fashion a new stoma.

I can't find anywhere on the Internet that radiation enteritis is progressive. So I am worried it is something else that I haven't been told about.

Lisa

[Mariecapp]

Welcome to the group. I have PRD that affects my bowels terribly. I have daily bleeding (and I'm on blood thinners) so it doesn't stop right away. I have fecal incontinence and I pass gas when I'm around others that is so embarrassing. I guess this is my new way of life now. I'm 4.5 yrs post cancer treatment. Best to you. I hope you get the help you need. I don't let my problems stop me from doing the things that I enjoy

[Hidden]

Dear CrochetDancer, so sorry to hear about your difficulties it must be very distressing and upsetting. Please feel free to give our helpline a call or drop us an email if you would prefer and we may be able to offer some additional support. go to our website prda.org.uk where you will find our contact details.