There’s hope out there

[Bluebell86]

I just wanted to share some information incase it is if any use to anyone at all. I thought I was abit of a lost cause having suffered for over a decade & described as having “complex complications from PRD”. I asked to be referred to St Marks Bowel hospital in London for advice on surgical options as my local hospital have only performed one similar operation on radiated bowel like mine before & they were undecided whether to operate on my small or large bowel. My symptoms were acute bowel obstructions causing extreme pain, 6-12 hours of bilious vomiting whilst being unable to retain any fluids, then wait for my bowels to settle which could take 2 days before I introduce a liquid diet. This was happening on average once a month sometimes fortnightly & I felt like I had no life & was overwhelmed by feeling so drained & in pain. Very long story short the specialist said most surgeons do not want to perform surgery on radiated bowel unless absolutely necessary (ie intestinal failure) as it is so risky for many reasons. I have been using rectal water irrigation now for the last 5 months (I perform this approx 4 times a day) & haven’t had any obstructions since!! This has been life changing for me, to be free from excruciating pain (I still get mild daily pain) & without the fear of thinking another episode is just days away is such a wait of my mind. I wish I’d know about this simple regime years ago - it’s just water!!! I actually have some faith in my body again! I appreciate this isn’t a solution for everyone but it’s an option worth exploring if anyone has evacuation problems (mine a stricture of the sigmoid colon & widespread disease to the small bowel). I still suffer with occasional incontinence & pain but as I say to be free from the agonising attacks of obstructions is amazing. Please do ask your consultant’s about options and also don’t be afraid to ask for a referral. I was often made to feel like a shouldn’t complain & be grateful the treatment has cured my cancer which of course I am but it doesn’t mean we should suffer in silence. I have more quality of life from one simple change & just pray that everyone on here finds something that makes their life with PRD more manageable.

[Lamados1954]

Thankyou fir this Bluebell I bought a few different kits to flush my bowel from Amazon none recommended by my team as I said they haven’t been at all good at any suggestions or help with bowel and bladder issues . Can I please ask what do you use ? I have wasted money in buying things that I find difficult to use Thankyou

[Bluebell86 in reply to Lamados1954]

So I was referred to a bowel physiotherapist who prescribed them. I use Qufora irriSedo mini go at the moment (google it and take a look at their website) but going to ring the bladder and bowel charity to ask what other systems they have to see if there’s a system where I don’t have to do it so frequently. Also it’s worth noting that I had never even heard of a bowel physio before let alone water irrigation but it may be something your gastroenterologist could prescribe. Also worth mentioning that if you live in the uk you qualify for free nhs prescriptions if the medication you require is specifically for cancer or as a result of your cancer treatment. Every 3 years I have to renew it but I just phone my gp who authorising this request. All my medication I am on is for PRD and it is a big list!

[Lamados1954 in reply to Bluebell86]

Thankyou do much Bluebell this is very helpful I have never heard of a bowel physio either I was referred to specialist nurses but they just prescribed pads which I was buying myself so it’s a help to have them delivered regularly at no cost . My next app with my oncologist is January 28th so I will enquire thanks again x

[Bluebell86 in reply to Lamados1954]

I did have to wait about 6 months for the referral to the bowel physiotherapist but this varies I’m sure. Yes do speak to your oncologist/ oncology nurse about free nhs prescriptions & water products are available to support you with your toileting. It’s definitely worth speaking to the bladder & bowel charity -

bbuk.org.uk/

They have an online contact us form or a phone number.

They can issue incontinence prescriptions and deliver them to your house free of charge. They also supply complimentary items like waterproof bedsheets, wet wipes, dry wipes & gloves. They also have nursing teams that are able to offer advice, one has called me back this afternoon & is going to send me an email with other water systems that they supply with how to video’s. I’ve actually found them more helpful than trying to get hold of my hospital. All the best for your appointment at the end of the month.

[Lamados1954 in reply to Bluebell86]

I have looked at the Qufora irri sedo looks better than anything I have purchased because it had more holes in the nozzle and looks good for dexterity problems Thankyou so much I would never have known about any of this it has been immensely helpful it does make you wonder why on earth professionals don’t advise you about this and you have to find out yourself Thankyou once again Bluebell x

[Bluebell86]

your welcome, it’s nice to be able to help even just abit. ☺️

[Springsteen666]

that’s amazing and so pleased it’s helping you. I have Proctitis and enteritis which is annoying but the strictures I suffer from are dealing taking their toll.

My most recent one was last Monday and Tuesday. Felt some discomfort Sunday night so knew what was coming. Monday in so much pain unable to get out of bed. Loads of burping, hiccuping etc then the vomitting and the food just had nowhere to go.

Started to clear Tuesday afternoon I knew as wind was coming from elsewhere so I knew the blockage was clearing. Had the runs for another 4 days so didn’t leave the house. This happens to me about twice a month and I have unintentionally lost 3 stone since last April

My gastro consultant has said it is what it is and I will have to live with it. I gave asked my oncologist to refer me to the Royal Marsden but they have told me as I have a consultant already not to expect the referral to go ahead.

To add to that the radiotherapy caused AVN so I had to have a hip replacement 13 weeks ago. I think if I could get a handle on the blockages I could make plans to leave the house. Will def look into this. Thanks so much x

[Bluebell86 in reply to Springsteen666]

So sorry to hear of your troubles Springsteen666, I can massively sympathise with the obstructions & my heart goes out to you learning you also have to contend with hip surgery ontop. To hear what your oncologist has said is tough, we all know the damage can’t be reversed but an empathetic approach isn’t asking for much & it’s not them who has to live with the consequences of treatment on a daily basis. Well a little update, I’ve now ordered Navina Smart digital irrigation system which hopefully will clear the whole of the lower bowel so may only need to be done once a day. I was at the stage where I would have done anything to be free from obstructions and vomiting all the time so thought it was worth letting people know incase it helps even just one person. I don’t know if I will experience one again but it has been 4 months which is far better than almost every fornight! I hope the royal marsden accepts you, I asked to be referred to Dr Ana Wilson at St Marks Hospital as figured if a bowel hospital doesn’t know what to do with me then I don’t know who would!! I had telephone consultations as I live 4 hours away from London but she was brilliant and very kind & filled me with confidence that surgery isn’t a good option for me & her team reviewed all my scans which gave me comfort as my cancer was missed on my smear test hence which I’m so anxious. She also explained that how a persons body responds to radiation is down to their genetic make up and obviously how high the dose is so that’s why some people have more severe symptoms than others despite the same dose of radio & unfortunately there is no way of knowing this. She also said women fare slightly worse generally as their intestines sit slightly lower in their pelvis so more get a dose. I’m just grateful to hear that they have more targeted radiotherapy now and other things in place to help limit exposure to healthy tissue, sad for us but reassuring for the future.

Regarding referrals for consequences of cancer treatment at St Marks this is what the website states:

Referral Guidelines

We welcome referrals from GPs and hospital consultants regarding patients experiencing problems with bowel function such as urgency, loose stool, flatulence, constipation, steatorrhoea, faecal incontinence and rectal bleeding. Please refer via ERS to Gastroenterology RAS and letter will be triaged.

Guidance for professionals on managing GI consequences of cancer is available at: macmillan.org.uk/cot

Contact

Dr Ana Wilson, Consultant Gastroenterologist and Specialist Endoscopist

Professor Siwan Thomas-Gibson, Consultant Gastroenterologist

St Mark’s Endoscopy Department Referral

Acton Lane, Park Royal, London, NW10 7NS

Tel: [phone]

[WeeGinger45]

Thank you for sharing I've just recently been connected with PRDA after years of very traumatic experiences and like you said grateful cancer was treated however the effects if unknown are devastating xxx

[Lamados1954]

I am so pleased you found a solution it sounds absolutely awful waiting for what you knew was going to happen so frequently . To bear what you were going through took mammoth reserves . Did you find this treatment yourself ? Or was it recommended from the bowel hospital in London ? I find professionals I have seen pretty useless in understanding the long term effects of PRD and therefore advice us lacking

[Bluebell86 in reply to Lamados1954]

Hi Lamados 1954,

The water irrigation was advised by the bowel physiotherapist from my local hospital, I had no idea what a bowel physio would do, I thought I might have to go to the appointment in gym gear incase it involved exercises!! She taught me positioning on the toilet (ie legs raised) & some complimentary therapies for my bladder damage, pumpkin seed extract was one, magnesium for the bowel was another. It’s the first appointment I’ve had where I was able to talk about not just gastro issues but bladder, sexual health and mental health & I have to say it was positive just to talk about me as a whole package rather than just my bowel habits! The water irrigation was initially recommended to help me with incontinence but I’ve found it to be very beneficial & has reduced my bloating massively (I was never even constipated if anything I had looser stools & went toilet very frequently) but to be able to fit in my trousers again is amazing. I’m a size 6 but needed a size 10 just to accommodate my belly! Don’t get me wrong I still suffer greatly, urgency, incontinence, blood in my urine & am in pain daily but just so grateful not to have the vomiting & acute pain. Just wish the simple treatments were offered before all the medications. I’ve been in the system for a decade, I got diagnosed at 28 so feel I’ve learnt you have to nag and nag & be really honest about how debilitating the symptoms are & how much they impact your daily life. I’ve also read every research paper out there on PRD but that’s just my way of dealing with it!! Each to their own. Maybe I do need to move on but don’t know about you guys but feel it’s hard when your symptoms are a daily reminder. I tell myself a reminder of how strong we are though.

[Gingerurgent]

Finally someone with a little good news, so glad you’ve found some relief.

All of us on here have some pretty bad symptoms / side affects so it’s nice to have some hope at the start of a new, positive, year for us all.

Thank you.

[CatDancing]

Hi Bluebell - well done, and huge congratulations on your sticking power and resilience. I don'thave your particular aspect of the problem, however I'm really happy to hear of your success in living life again on your terms. Wishing you all the very best. 😍😍😍😍😍