Chronic Radiation Enteritis Sufferer

[Beau63]

Hi So glad I found this site. I feel so alone with this debilitating disease. I had radiotherapy in 1996 for cervical cancer. For many years I have suffered bouts of bloating, nausea, cramps, diarrhoea and constipation. I put it down to ibs and so did doctors until last year it had got worse and I’d started to lose weight , my symptoms more frequent. I had a MRI a stricture in the terminal ileum was found and radiation enteritis was diagnosed. I’m now on a low residue diet, no meat, only allowed potatoes, no fruit a very limited diet as I’m still getting symptoms . I’m on 2 bottles ensure a day. My consultant says there is no medication I can take but I’m sure there is for the pain at least. I was admitted last week to hospital with 2 weeks on and off symptoms I thought I was blocked but they just found swollen intestines. I’m at the end of my tether my diet is so restricted now. Any help or advise would be much appreciated as my consultant hasn’t been much help.

[Massmama76]

Hi there! I had uterine sarcoma cancer in 1995 and have awful radiation damage to my intestines and bladder as well. I recently had an ostomy surgery that removed my ileum and the really bad sections of bowel ( which ended up being a lot of them) but it has allowed me to eat again without obstructing and although I need fluids and TPN , I was already on them before because of poor nutrition from the damaged bowel, so not much has changed. I’m so sorry that you’re dealing with this.

[accidentalcarnivore]

Hello Beau, welcome to our site. I am so sorry you are suffering so. I too had CC and tx in 2007 and have to deal with adapting my diet to prevent frequent bowel obstructions. I have not had any surgeries but have chosen to continue experimenting with diet restrictions and intermittent fasting. Currently, i have found relief from obstructions by following a carnivore (zero fibre, zero carb) diet. But this diet has caused other issues i.e. chronic diarrhea which may be BAM. I recently added high doses of Vit C which appears to be helping with the BAM (bile acid malabsorption). At least the diarrhea and fecal incontinence is down to once a week instead of daily. This is a huge improvement. However, i really miss vegetables. I avoid Ensure but was advised to use it in my early days after treatment. Yoga and gentle exercise daily makes a big difference in aiding my digestion. Come join our weekly zoom chats for more support and help.

[Beau63 in reply to accidentalcarnivore]

Thankyou for your reply it seems alot of people have diarrhoea but I have the opposite hard to pass stools due to my low residue diet. Why do you avoid Ensure ? How can I join your zoom chats ?

[accidentalcarnivore in reply to Beau63]

To join the online chats, contact Sarah at PRDA, near the top of this page on the right hand side. I avoid ensure due to high sugar/fructose and vegetable oil contents.

[accidentalcarnivore in reply to accidentalcarnivore]

Also, you might be interested in the work of Clear Passage. A massage technique that opens strictures and prevents adhesions or reduces them at least. website: clearpassage.com

[Oonsy in reply to accidentalcarnivore]

Sorry for jumping in here but I have been diagnosed with severe BAM following my treatment for CC. I'm finding it very hard to take the meds (they make me so sick) and although I'm following a very low fat diet I think it is contributing to a lot of my issues. I have never heard about Vit C helping to improve BAM symptoms, is it something I should try?

[accidentalcarnivore in reply to Oonsy]

The vit C helps chronic diarrhea sometimes when a person is following a carnivore diet. Not necessarily a cure for BAM

[Oonsy in reply to accidentalcarnivore]

I see, thank you for your reply!

[Echium]

Hello, I also had radiotherapy for CC in 1996 and things haven’t been too bad until recently. I thought that having spinal damage was the price I had to pay so wasn’t expecting even more problems. My bowel issue is constipation followed by several days of pain, fatigue and diarrhoea, then repeat! I can’t get a handle on it despite trying a low fibre diet. I have had tests for various things which were negative but I have not been offered a scan of any kind. My feeling is that I must have a narrowed section of bowel or adhesions but I didn’t realise scans could show these things. Is your consultant a specialist in PRD? What can you eat on such a restrictive diet?

[Beau63 in reply to Echium]

HiYou need to get a MRI scan that showed up my scar tissue and stricture. I’m on a low residue diet with a liquid diet of Ensure on my bad days. My diet is very restricted no fruit, no veg only white bland diet mainly fish mashed potatoes bland soups no meat as I’m quiet bad I also have ibs type symptoms aswell. I get bloated easily with fatigue, if I get blocked it’s awful. I saw a gastroenterologist on nhs he was very good but I was referred to the London Digestive Centre on the pretext they could operate but by intestines are too scared for an operation at my age 62 is not advisable, too much bowel to be removed. Good luck make sure you get this thoroughly looked at.

[Skidman]

Have you thought of going on a plant-based (ie vegan) diet?

[Beau63 in reply to Skidman]

Hi I can’t unfortunately my stricture doesn’t allow any residue from vegetables to pass which causes my symptoms so I am on a low residue diet of no fruit apart from melon papaya bananas and tinned fruit. The only veg I can eat is potatoes, mashed only.

[Thinke]

I was diagnosed with Crohn's disease - later identified as radiation enteritis caused by the treatment following the removal of kidney cancer from my cervix in 2005. I immediately started taking two drops of CBD oil each night and since then have found the symptoms far easier to cope with and it helps with the stress too!

[Mariecapp]

Hi! I'm happy that you also found this website. I found that if you don't experience the symptoms and damage done that you feel so alone. 4 yrs post cancer treatment i still have rectal bleeding and terrible pain after a BM. I'm seeing a GI specialist for it. I hope you feel better

[Beau63 in reply to Mariecapp]

Thanks I hope you get some help and feel better yourself too

[Bluegenie in reply to Mariecapp]

I also had terrible pain after a BM and it was resolved by taking 10mg amitriptyline each evening.

[Mariecapp]

Hello, so I wanted to update all of you about my visit to the gastroenterologist for my rectal bleeding that comes and goes. He said it was radiation damage (which i already knew) He said it bleeds so much because I'm taking blood thinners. He said that I could have laser surgery but I'm on the blood thinners, so its risky. He prescribed a med. That they use for colitis. He admitted that you get rid of the cancer but you get 3 new problems after treatment. I was a little disappointed after my visit

[janfarrugia]

I am so sorry to hear this Beau. I had my radiotherapy to the pelvic region in 1999 so am a few years behind you. I have a diagnosis of mild bile salts malabsorption and was prescribed Covesalem (can’t remember spelling) which seemed to make it worse. I am having increasing problems with diarrhoea and am wondering if this is likely to just keep getting worse over time. I am interested to know what what Ensure is as haven’t heard of this. At the moment I am thanking my lucky stars that I don’t have any pain - or maybe I should add “yet”.

[Beau63 in reply to janfarrugia]

I have the opposite problem I have constipation due to the low residue diet I have to follow which is very low in fibre, nutrients and iron. I have scar tissue and a stricture in my small intestines caused by the radiation so food gets stuck I have problems with bowel obstruction. Ensure is a nutritional supplement to make sure I have my nutrients and also has 300 calories as I have such a low fat diet I am losing weight so this helps.

[janfarrugia in reply to Beau63]

I am so sorry. It sounds like you are having a really hard time. Bess you

[Renee1964]

Hello , same issues here but got to the point of no food intake. Just Novasource GI (no problem there) plus Elemental 028 extra which is literally turning my insides out!Has anyone talen this medical food Elemsntal?

Thanks

XXX

[janfarrugia]

I can’t offer any advice sadly - just my sympathy and hope someone can help you

[Vailgirl]

im 16 years out from anal cancer. It took me years to figure out my diet but i finally did. Doctor visits never helped. I figured iut that i cant eat more than 2.5 grams of fiber. If i eat 3 i will be popping in my pants all day ( i use cotton rounds to catch the poop that drips out) and if i have more than that ill end up w blockage. I suffer through that for about 6 hours, then make myslef vomit, which incant stop and then fo to ER for fluids. The next 4 days are no eating except a little white rice and lots of loose stools. Luckily this doesnt happen often any more since i monitor everything i put in my mouth. Taking vit C and a little magnesium and drinking lots of water helps me to not become constipated. I also use a little but of Slippery Elm if im having any signs of constipation. W the ensure, you want to look at the fiber content. Also be careful w drinking warm beverages w food. And of course coffee will make u poop all day. Most recently ive been able to have a half of cup after noon. There are about a dozen veggies you can eat that are low fiber. Eating is limiting but i do my best. I practice yoga and meditation daily and get lots of exercise. Its a journey - we are all different- and i think it just takes years of keeping notes to find what works for you. Blessings.

[SURFER58]

Exactly how I felt until I found this site, makes such a difference. Its horrible restricting diet I've tried this for rheumatoid arthritis. I have just got peppermint oil capsules it's meant to help and natural so I will see if it helps. I'm so sorry you are going through all that!