So Scared

[CrochetDancer]

Hi, I have recently been diagnosed with radiation enteritis and I am too scared to eat. The doctor told me I need a 3rd stoma and he wouldn’t listen to my concerns. He discharged me because I wouldn’t have a 3rd stoma and refused to give me any diet advice or refer me to a nutritionist.

I worry if my colostomy doesn’t work and it is very hit and miss now. I only eat soup and yogurt. I don’t know what to do.

Any suggestions, please?

[PhilFreeToAsk]

You have may sympathy. It sounds like you need extra support. I wonder if this charity may help you pennybrohn.org.uk/why-choos... .

[CrochetDancer in reply to PhilFreeToAsk]

Hello,Thank you for kind reply.

I have spoken to a lovely lady from here (PRDA) and she is trying her best for me to referred to one of their clinics. I really hope she can do this for me

The doctor at the hospital (I was recently admitted for another bowel obstruction) wasn’t at all helpful. And frightened me.

I will let you know how I get on.

Love and good vibes,

Lisa x

[PhilFreeToAsk in reply to CrochetDancer]

My wife had bowel cancer recently. The support available now was so different when I had mine.

I wish that all turns out well for you. Just maybe, the support that you get from other than your hospital may empower you.

[CrochetDancer in reply to PhilFreeToAsk]

Hi,

I am sorry to learn about wife.

Some people aren't very understanding and are not concerned about all the after effects of radiotherapy.

I am still waiting to hear about my local PRDA clinic.

I will let you know how I get on.

Lisa x

[SpaghettiBetty]

Hi CrochetDancer just wanted to say hello 👋 and that I have a colostomy and urostomy and I can completely understand why you’re not keen on having a third stoma! My colorectal surgeon would do absolutely everything to avoid further surgery so really shocked that they didn’t even consider speaking with a dietitian/nutritionalist.

Have you seen a gastroenterologist? My gastro was instrumental in sorting out support from a dietitian.

I’ve had bowel obstructions before and I know how anxious it can make you feel around food.

If you can get a referral to a PRD clinic that would be amazing xx

[CrochetDancer in reply to SpaghettiBetty]

Hi SpaghettiBetty,

Thank you for your reply and I knew there would be someone else who understands about not having a 3rd stoma and more surgery.

The doctor I saw was beyond keen to carry out more surgery and for me to have a 3rd stoma ( which no one has ever heard of). I asked about diet and he told me "I am not a dietician!". I have raised a complaint against him with my local health board and they are arranging for me to see another colorectal consultant.

Nothing was mentioned regarding a gastroenteritis or a dietician. I am speaking to my GP later today and it is on my list, plus some medication for the information.

Fingers crossed I can get into the local PRDA clinic.

I know this sounds strange but I am glad to know there are other people who are in the same or a similar boat to me. Of course, I wish no one was but it is a comfort.

I have just had an "explosion" with my colostomy. And for once I won't be moaning about it, other than doing all the washing.

Have a lovely day,

Lisa x

[SpaghettiBetty in reply to CrochetDancer]

I totally get what you mean, none of us want to be in this club but it’s nice to know we’re not alone ❤️

In my humble opinion, wherever humanly possible, conservative management should be the first route of treatment. Even when I’ve had a blockage my hospital team have kept me nil by mouth with an NG tube to reduce the stress on my gut and thankfully always avoided further surgery. My colorectal consultant told me that radiotherapy damaged bowel doesn’t heal very well so would do what he could to avoid surgery an would even refer me for hyperbaric oxygen therapy if necessary.

I did have TPN (Total parenteral nutrition) for a while as I had ileus (where the bowel stops working) and that really helped my bowel to recover.

So sorry you had a bad experience with that consultant, it can really knock your trust in the people looking after you. Hope everything goes well with your GP appointment x

[CrochetDancer in reply to SpaghettiBetty]

Hi SpaghettiBetty,

I had to argue with the doctor for him to prescribe the solution which goes into the NG tube.

I have been to and fro A&E for 2 years with constipation and then bowel obstructions. Only 2 weeks ago the radiation enteritis was picked up.

Previously, the doctors put me on a low residue diet which includes lots of dairy products, which aggravates the condition. I should have been put a low fat and lactose intolerant diet.

I am very annoyed it wasn't picked up earlier and they have made the condition worse. And the doctor didn't want to know me because I declined to have a 3rd stoma.

I had TPN when I had my stomas done about 5 years ago. However, it didn't agree with me. It made me vomit most of the time and my weight plummeted down to the 5 stone bracket and it gave me a couple of blood clots. Again that doctor wouldn't listen to me. I am glad it helped you and made you feel better.

I have heard of the treatment you mentioned. However, the nearest one to me is in London and I live in South Wales.

Yes, it is lovely to know there are others who understand and have been through the same or similar situations. And I find people on here know more than the doctors and their staff

Have a lovely day.