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.
There’s hope out there: I just wanted... - Pelvic Radiation ...
There’s hope out there
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
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!
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
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 -
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.
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
your welcome, it’s nice to be able to help even just abit. ☺️
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
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: 020 8869 5277
Good morning Bluebell the information you have passed on has been so helpful from the bowel irrigation to the referral hospital I wasn’t aware of a specialist gastro hospital here in the UK I have just been referred to a gastroenterologist at my local teaching hospital . I informed my oncologist last week of my bowel problems which I have had since treatment ended and I have told the team before but now she is taking action . I will keep the names at ST Marks just in case I need to ask to be referred on . I hope the results of your last MRI was what was expected Thankyou so much for your contribution on here and pray you stay well ❤️
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
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
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.
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.
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. 😍😍😍😍😍
Your news was terrific and thanks.
I have had the same horrible pain and vomiting symptoms. All I can think about is the pain...it takes over your brain. I cannot do anything--read, TV, or even talk because I hurt so badly.
But my problem is due to adhesions from the 6 abdominal surgeries that I have had, which cause bowel blockage. I go to the hospital where a tube is put down my throat to my stomach to drain it until hopefully the bowel blockage goes away. It really is starvation! I have been in the hospital for this 16 times in 10 years.
Three times the blockage has not gone away and I need to have a big 3 hour surgery called "lysis of adhesions" meaning that the adhesions are manipulated and moved around and out of the way. They cannot be removed so of course, they come back even worse because...surgery causes MORE adhesions. Adhesions cannot be detected by any scans, either.... I am tired of surgeries and the long recovery period.
Anyone else have this problem and have you found any relief? Thanks.
Oh my goodness 6 surgeries, that is so much for you and your body to go through & to spend so much time in hospital because of it must be so tough emotionally aswell as physically.
I have heard of the procedure that you talk about but sounds like a catch 22 in terms of potentially causing more scarring. I really wish I was able to say I knew of anything that would help with this all I know is the don’t perform any surgery on irradiated bowel unless it’s a awe of needs must for the reasons you’ve said.
Sending my best to you and thank you for sharing.
thanks for replying....I guess since my surgery is not actually ON the bowel, but rather on the adhesions...that is why they will do it. I do know that last time, everything was moved around, taken out, and put back!
Oh my goodness, sounds barbaric! They are the experts so we have to put our faith in them don’t we.
Thank you for this Bluebell. Did the damage to the small bowel include strictures? My large bowel is unaffected apparently but within the last year I have developed multiple incomplete blockages of the small bowel. I am just out of hospital where the emergency team used an N-G tube to suction out loose material sitting on the most recent incomplete blockage to allow me to eat again. However, my diet is now a full fluid diet. I have an appointment with a dietition knowledgeable in this area to clarify what this entails. Can rectal irrigation affect the small bowel in any way?
Had the the recent partial blockage been a complete blockage I was told my choice was between surgery or death. The team was very supportive in preparing me for a probable future blockage. I think they expect I will face this decision quite soon.
I am 75 and seeing in myself rapid cognitive change. I wonder if this change is related to my use of an osmotic laxative. I think even on my full fluid diet I will need to continue that laxative.
I hope someone can give me more information on this situation.
I have one bowel stricture so this is in my sigmoid colon (large bowel) but my MRI does show extensive diffuse (meaning not restricted to one area) bowel damage to my small bowel. From my understand the water irrigation only works on the large bowel as this water encourages the peristalsis and forces out the contents and it’s possible to empty the entire large bowel with this management. But please do ask the question to your gastroenterologist as I may be wrong, if you’re a possible candidate for surgery then you should be discussed in an MDT meeting. I did meet with a surgeon & a stoma nurse to find out more & get my head round the possibility of it.
My situation appears different to yours if you have strictures in the small bowel, I have been warned these could develop in time. I think liquid diet is the usual approach but pleased and reassured you have a dietician to support you with this particularly if it’s likely to be long term. It really is rotten and incredibly painful to have such episodes, I hope you are feeling better currently.
For me what seems to have prevented the obstructions is a combination of stool softeners, a medicine to increase gastric mobility, drinking loads of water, walking lots and minimal fibre intake & water irrigation. If I feel my tummy bloat or things slow down I go onto liquids but sometimes it’s too late.
I really hope you don’t get into another emergency situation like you were in, it must have been so very frightening.
I know when the hospital wasn’t sure with me if it was my small or large bowel that was the cause they said if they operate on the small bowel it carries more risks in terms of maintaining your nutrition and usual a stoma would be high output as it is still liquid by this stage. It is the small bowel that is responsible for absorption of nutrients so the larger the section you remove the more complications there can be & the earlier in the digestive system the cut is made the more complex too. I did ask if I should have planned surgery given I was getting unwell every month and they said unless I was nutrient deficient they wouldn’t recommend it unless it was an emergency.
I wish I could have provide you with more answers but sending you lots of positivity & support your way.
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