What products help you most with your PRD symptoms?

[PurpleIris47]

Hi, I volunteer for PRDA as a fundraiser, and I am keen to get businesses to donate to PRDA, especially those that supply products that people with Pelvic Radiation Disease find particularly useful.

Please could you reply with any information about your medication, medical products (such as continence pads, stoma care or lymphoedema compression garments), skin creams, toilet accessories, health Apps, foods or anything else that you find essential to living your life with PRD.

If you could add a sentence on how each thing is your ‘lifeline’ it would be really helpful.

Thank you very much x

[Blue_Hawaii]

I use inconvenience pads

Coleversam medicine to helped to form stools,the reason is because of the bile duct

B12 injection every 8 Weeks

E45 cream for dry skin

Compression stockings for lymphoma

For many months not been able to ware

my right hip needed to be replaced,it's been to painful

I'm lucky I've just had a hip replacement at private hospital under NHS

Lymphoma clinic they been still looking after me by the phone calls

I hope this information is helpful

Kind regards

[PurpleIris47 Community Pioneer in reply to Blue_Hawaii]

Thank you very much Blue_Hawaii that's really helpful.

[Perido]

Juzo custom fit flat knit stocking plus Juzo toe caps to control lymphoedema (LE) swelling in leg/foot. I like that the seam of my Juzo stocking is smooth and flat unlike another make of stocking that I tried.

Aqua Max (plus luke warm water) for cleansing my skin affected by LE. It seems to help when my calf get itchy. I also use Aqua Max round the nether regions when bathing as it doesn't cause any irritation (I have LE in groin and lower abdomen)

Various products for moisturising skin affected by LE:

Aveeno cream - moisturising my LE foot after a bath

EpiMax cream- seems very good for when my calf gets itchy

Sudocrem - I use this round the toe nails of my LE foot - it helps moisturise and I think it helps reduce risk of infection

Tropic tamanu balm - on the particularly dry part parts of my foot last thing at night - this balm is very pleasant to use and a bit of an indulgence but a little bit goes a long way - need to put a light sock afterwards for 30 or so minutes.

A couple of products to help guard against infection of my LE skin:

Germolene wound care cream - my go to if I get even the slightest scratch on my LE skin

Antishan cream - my go to if I get bitten or stung by something on my LE skin.

Tena Lights liners for minor urinary stress incontinence and minor bowel incontinence. I prefer Tena because, unlike others I have tried, their liners are not perfumed, do not cause me any irritation and the sticky strip is kind to my underwear.

Because of the lack of public loos and at the moment I'm trying out various products for moderate/heavy urinary incontinence. I was able to buy a good range of samples from Allanda (on-line continence supplies company in the UK) rather then risk buying a big packet of something. I have found the delivery service by Allanda to be very good and I usually don't have to wait too long on the phone if I want to ask a question.

Herbal and caffeine free teas to help manage a bladder that is easily irritated. I get loose leaf teas delivered from The UK Loose Leaf Tea Company - some of their teas are organic and they offer a good range. I wanted to use good quality tea to embrace the fact that I think good hydration is so important especially for a body that needs a lot of support to enable it to work.

Hope this helps a bit?

[PurpleIris47 Community Pioneer in reply to Perido]

Thank you very much Perido, this is very interesting and helpful

[Picauville]

Hi

I take Colesevelam (Cholestagel) daily combined with a very low-fat diet to cope with bile-acid malabsorption. Every now and then my guts can’t cope and I suffer a bout of SIBO (small intestinal bacterial overgrowth) which makes me very sick plus diarrhoea - Rifaximin sorts it out but the strong dose that works best is very expensive and my GP won’t supply it so I take more of a lower dosage!

I hope this is helpful for someone.

[PurpleIris47 Community Pioneer in reply to Picauville]

Hi Picauville, thank you for replying - this is really helpful. Colesevelam does seem to be lifeline for many people with bile acid malabsorption.

[SpaghettiBetty]

I use Respond neutralise apple spray from their ‘the care range’. My stool can be rather malodorous due to PRD and it gives me so much confidence when I’m out and about as I don’t have to worry about using public toilets as the smell can be quite embarrassing from my colostomy if I don’t use it.

The same can be said for my Ostomist gardenia and jasmine drops. I pop a couple of drops either in the toilet water or in my colostomy bag and I often leave toilets smelling better than when I go in! A real confidence boost when you’re conscious about PRD bowel smells! (I don’t process metabolise fat very well so stool can be rather foul smelling 😟)

[SpaghettiBetty]

I use Coloplast Sensura Mio click drainable colostomy bags and urostomy bags. They are brilliant and I don’t have to worry about odours from filters, which can be a real worry for me due to my PRD. Since switching to these bags I can confidently go out without worrying about leaks too. I have no issues and often get 7 days use out of the baseplates/bags.

[PurpleIris47 Community Pioneer]

Hi SpaghettiBetty - thank you very much for your replies - I didn't know about these products so it is very helpful for me.

[starlightblue]

Hello, I have used Normacol Granules made by Norgine Ltd, these help with keeping stools soft and passable reducing rectal bleeding and eliminating constipation . These were recommended around six years ago by Dr Andreyev when he was at the Marsden and have proved to be excellent. Good luck with your fundraising for this much needed charity.

[PurpleIris47 Community Pioneer in reply to starlightblue]

Thank you starlightblue - very pleased to hear this works so well for you

[Sarah_PRDA Partner]

Thinke , would you be happy for PurpleIris47 to use your post about Questran-light?

[Skellige Community Pioneer]

I’m feeling humbled by the replies you have had, as my PRD is milder on the whole than many of the people posting here. However, I have has success in lessening gastric attacks by sticking largely to the FODMAP diet (after consultation with St Thomas’ in London), and use the Monash app to check all sorts of foods, as it’s not always straight forward. The app is simple, and contains information on fresh foods as well as branded items.

I also use ranitidine, but I hear it is now to be prescription only (so I’m stockpiling, in case my GP is a PRD-refusenik)

[PurpleIris47 Community Pioneer]

Thank you Skellige, this is very interesting and helpful.

[AlfredSaxon]

I am male and suffer from bladder incontinence which has been exacerbated by radiotherapy to the pelvic area--the radiotherapy was as a follow up after having my prostate removed. When outdoors I use a penis clamp called the Dribblestop--this is useful but the design could be much improved, unfortunately there seems to be little design work on such devices in the UK. Southampton University started work on a new product in 2018 and was funded ( to what degree I do not know) by ProstateCancerUK, but there is still no new device. I am able to walk about 4 miles, Dribblestop has made this possible.

The next product is something that is most useful. Following radiotherapy, I suffered from radiation cystitis which caused bleeding from the bladder, and in my case the amount passed in my urine was substantial and dangerous. Under the guidance of my local urology dept I self administer, by catheter into my bladder a product called CYSTISTAT, its 50ml of a colourless liquid. Its a fairly easy procedure, which I do every 7 weeks and its works. This medication is not a cure, but it does prevent the bleeding. I understand that many urology depts will not supply this medication as they claim it does not work for the situation described above--it does. This product has been around for many years and is usually prescribed to women who suffer from regular bouts of cystitis caused by infection. I had several episodes of urgent treatment at A & E prior to using the product--it has kept me free of such visits

I hope the above helps