Hi. New member, and annoying symptoms

[Ladykatkin]

Hello everyone

I’m Kate, I’m 61, and have had PRD since completing 30 sessions of pelvic radiotherapy in June ‘20. Through the intervening years, I have had medication (codeine, loperamide) which, these days, I take in varying doses, depending…I’ve also had some ablation surgery, some rummaging under general anaesthetic, and 3 monthly appointments for more rummaging. I’m depressed (can’t up my depression meds unless I have counselling. I’m waiting). And since before Christmas, I can’t eat anything without setting myself off! I mean, I’m talking vegetables, but I like vegetables. I like granary bread and proper tea as well.

So, I’m just here to wail about not being able to eat food cooked in sauce, or most yummy vegetables, and see if there’s any hope? I’m fortunate enough to live in an area where we have a Late Effects department now, so I have appointments galore, but the foods I can safely eat seem to become fewer and fewer. I’m on minimal codeine, and I don’t want to take more, really, as it makes me feel stuffy and less well. I’m fatigued (getting help for that too). So, I’m getting help, can’t complain, but I’m still struggling.

But it’s nice that this facility is here. I’m grateful for my treatment, because I’m well. I just don’t feel it!

[Lyubov]

I wish I had advice for you to help your horrific situation. My husband also has radiation proctitis and radiation cystitis from pelvic radiation in 2016 (prostate cancer recurrence) and it's simply awful. Wishing you well & good fortune with medical consultants.

[Mariecapp]

Welcome to the group. Sorry to know that you also suffer from PRD. I can identify with your story for sure. I can't eat any lactose, green veggies, fiber, and chocolate to name a few. I have to eat small meals also. I take immodium on a daily basis also. I also take peppermint capsules, but I have to remember to take them one hr before I eat and they do help my gut. I am 6.5 yrs post cancer treatment and my aftereffects have gotten worse. I also lost 9 lbs because I just can't tolerate some foods. I have to wear a pad on a daily basis because if stool wants to come out I can't control that from not happening. It's also depressing and frustrating but I will say that it doesn't stop me from doing what I enjoy. Best to you!

[Ladykatkin in reply to Mariecapp]

It’s horrible isn’t it. I have to say that I wear ‘period pants’ and that gives me some confidence. Not always enough. Take care, my friend xx

[Blue_Hawaii]

welcome to this lovely, lovely friendly group

That’s understand what you are going through

Tonight at 7 pm is a Zoom meeting

Come join us tonight xxx

[Ladykatkin in reply to Blue_Hawaii]

Thank you! I’m on holiday this week, so maybe next time xx

[accidentalcarnivore]

sorry for your suffering. My situation is very similar. My digestive issues control what I do, when I do it, and where I go on any day. It’s quite stressful when trying to accomplish anything, go for a walk, plan social events with friends & family, travel, or just grocery shop. I eat only animal protein, nothing with fiber, no fruits veg grains or legumes. Boring. I obstruct if I eat any of these foods. It’s difficult to keep my nutrition up so supplement a lot of vitamins. Since the vaccines I have had a huge resurgence in autoimmune issues which I struggle with daily. Just when I think it can’t get worse something else develops. Certainly the BAM is the most debilitating but the pain and stiffness in the body is chronically stressful. There don’t seem to be solutions for me. Having said all this…..to see my life from the outside you would not know the suffering. I force myself out there, engage with friends & family, read continually about health issues and remember each day those of us who haven’t made it through cancer treatments and would do anything to be alive. There are many people in our group who conquer their symptoms daily and who find a way to be productive on this earth. We do have a choice as to how we engage in life. First we need to choose life then carry on.❤️

[accidentalcarnivore]

I hear your frustration and pain. I was a vegetarian before treatment in 2007. today i cannont eat any vegetables, fruits, grains, legumes, or anything with fibre. That leaves me fish and animal protein. I am surviving but not easily. But able to live an adapted life. Hope that helps.

[Chargidevine]

Hi

I had radiation treatment in 2010 for cervical cancer and after treatment I was left with Ibs so I was told 2020 it became so severe I lost so much weight as I couldn’t keep food in

Long story short (& going private due to covid ) I was diagnosed via a sehcat scan for bile acid malabsorption plus 80cm of my lower bowel was badly impacted from the radiotherapy

Do look up BAM on guts uk to see if you may have this

There’s some good support groups on fb

It’s a debilitating condition , and needs more research into this condition

Vegetables are a no no for me , apart from potatoes and carrots !! Salads also don’t agree , and many fruits

Low fodmap diet helped

Hope this helps

Good luck