New to here but not new to symptoms

[Bewildered49]

Hi. I’m new here and I’m amazed to read some of these posts. They sound like me! I had radiation for anal cancer 12 years ago. Doctors kept saying the symptoms would go away after a time. Well here I am….still waiting. I was watching a YouTube video today about IBS because that was my best guess about the bloating, diarrhea, mucus and “stuff” when someone mentioned in the comments PRD. I had never heard of it before and now here I am. I hope I can at least be supportive and look forward to help with years of….haha, I want to use an expletive that starts with S. 😄

[Bangersandmash]

i felt the same Sort of ‘wow ‘too. The consultants never said anything about any side effects of radiotherapy or chemo. I had anal cancer in 2007, luckily no side effect symptoms for 14 years, now just take Imodium and wear period pants in case mucus is a bit much. Even had to tell my doctor about PRD and give her the links. Yes, this site is useful and reassuring.

[3rdNettydoon in reply to Bangersandmash]

How do you take the Immodium please? What dosage and frequency for example. I have lots of bouts of diahoea and was prescribed Liquid Loperamide which allowed me a decent bit of control over this. Unfortunately when I asked for my repeat prescription I was told it is no longer available. Oh how I miss it.

[Bangersandmash in reply to 3rdNettydoon]

I never liked the lopermide liquid, hated the taste. I take2mg loperamide capsules, which i much prefer, sometimes daily, mostly every other day. It is on repeat prescription.

[3rdNettydoon in reply to Bangersandmash]

Thank you. My chemist says she can't let me buy more than two packs at a time, six tablets per packet. As I need them on a regular basis I will ask if I can have them on prescription. I liked the liquid because I could regulate the dosage myself.

Does your regime mean that you are stopped from moving your bowels for a time

[Happyretired in reply to 3rdNettydoon]

Like you I found the liquid really helpful as I was able to take small doses and therefore prevent constipation. On this forum Norimode was recommended as a small 2mg tablet which I break in half for a smaller dose tho not easy, its prescription only. I also buy Superdrug’s instant melts which I half for a 1mg dose and find these very affective.

Nothing seems to quite replace the liquid or perhaps just what I have been use to for years. Good luck

[3rdNettydoon in reply to Happyretired]

That's helpful. Norimode sounds good. I feel as if we have been left with no recommendations after the liquid was stopped. I liked plain old Loperamide but a full capsule can be a bit much. No easy way to take half as it is powder inside the capsule. Do you take the half tablet every day or only if you feel the need?

[Happyretired in reply to 3rdNettydoon]

Like a lot of us my bowels have a mind of their own! Some weeks I only take a total of 2mgs over the 7 days and at other times much more! If I wake and feel it’s just going to be one of those days I start with half a tab which is usually ok but know I can take another half if needed. Stress always causes an issue so when travelling I take a larger dose because of the fear of not finding a loo in time! It’s all good fun isn’t it???

[3rdNettydoon in reply to Happyretired]

It certainly is. 😳It's good to share experiences, for me, it stops me feeling I'm on my own. I had it sussed ish, with the liquid and I am sure I can do it again with this tablet.

I believe stress plays a massive part in my issues. When I was working I went from morning toilet, all day, even through to evening meal. Now I'm retired and our family are all away doing their own things, I find old anxieties creeping in. This does and always has created tummy/bowel issues for me. Now I'm on B12 injections waiting for my personal miracle of reduced stress levels.

BTW

please people, if you have had Pelvic Radiation Therapy, ask for a vitamin B12 blood test. It's now been noted as being connected to B12 deficiency. (See NICE and BNF guidelines) I had my PRT when I was 50 y. o. Diagnosed B12 deficient when I was 72y.o. My reading was low. It can become very debilitating. Don't hesitate. Ask!

[Nomojo56 in reply to 3rdNettydoon]

Really interested in your comment about B12. I already had a diagnosis of M.E. and IBS when I was diagnosed with prostate cancer Spring 2022. Had RT last year and my haemoglobin count is dropping at each blood test since. In August was below minimum reading for man of my age but told nothing to worry about. Dr with local M.E. fatigue clinic has now said she will ask GP to check again and chase it up. IBS badly affected now too

(Coincidentally about 10 years ago a private doctor recommended that I should have B12 injections but that GP/local practice nurse would have to administer - which they refused to do so never happened)

[3rdNettydoon in reply to Nomojo56]

Vitamin B12 deficiency is a very much maligned and misunderstood condition.

Some advice first though: Please do not take any form of B12 before you have had the blood test because whether your body can or cannot absorb the supplements it is in your bloodstream and will give a false test reading. Look up the guideline for NICE and NHS for symptoms and treatment. You may have to be very firm about being given this blood test. You may even have to go private for it, many chemists do this test but it can be costly.

The best advice I can give you is; Please post your message on the B12 forum on Healthunlocked.com. I and many others have had tremendous support and advice about how to approach doctors about this condition.

Look it up ASAP and get the help you need. B12d can be a very debilitating condition and needs to be treated as soon as possible to build up your vital supplies of this vitamin.

I wish you well and hope you do approach the forum.

[Nomojo56 in reply to 3rdNettydoon]

Thank you for your advice. I shall look at and join the B12 forum you suggest

[Nomojo56 in reply to 3rdNettydoon]

can you tell me which B12 Forum/group you're referring to please ? If I type B12 into Search it comes up with Pernicious Anaemia group and some others. Is there a specific group 'B12 deficiency' ? Thanks

[3rdNettydoon in reply to Nomojo56]

Pernicious Anaemia Society. That'll be the one. Sorry about that. Not everyone with B12 deficiency has PA.You will certainly learn a lot from dedicated members there.

[Nomojo56 in reply to 3rdNettydoon]

Thank you. I found this too which is very helpful

b12info.com/

[3rdNettydoon in reply to Nomojo56]

Yes Tracey is great. Very helpful. She has zoom meetings which are very informative. Try the forum too because help is always there.

[AlfredSaxon]

The medical profession is far from truthful about the side effects from radiotherapy to the pelvic region, as I understand the process it damages both malignant and healthy tissue, the hope being that the damaged healthy tissue will heal; very often is does not! I had radiotherapy as a follow up after surgery for prostate cancer, precaution rather than an essential need, I've some side effects and now regret the decision to have the treatment.

[Warham]

Hi, I finished treatment for stage II anal cancer 3 and a half years ago and late onset symptoms didn’t really start for me until after around two years. It’s the gift that keeps giving!

[Mariecapp]

Hello. I had stage 2 anal cancer 6.5 yrs ago. I can certainly identify with the symptoms that you are experiencing. My PRD symptoms started about 5 yrs post treatment and they have progressively gotten worse. I cannot eat a complete meal anymore, I use immodium on a daily basis otherwise my bowel movements are like pudding. I take a digestive enzyme and 2 prebiotic every day also. My diet is very restricted now because of the aftereffects. I have been to a gastroenterologist who was a NP who didn't address my digestive issues and he wanted to do some anal test that I had never heard of. Needless to say that I will not go back to them. I also now have a precancerous protein in my blood that is monitored every 4 months because that can progress in to leukemia. It seems like each new day is a challenge dealing with this. God bless.

[Jimbo65]

Hi Bewildered 49

Here in the UK they have woken up to the idea that radiation therapy can cause long term damage that can upset bowels and bladder. Currently having issues with bladder not emptying so wearing a catheter at the moment until we know why? Very frustrating as I'd been saying this for a while. Finally found a Late effects clinic in Bath that has certainly got things happening for me and some joined up thinking is happening re.PRD Maybe have a Google to see if your country's health care have got such a thing going. Good luck and glad you found this site. X

[briarsw]

I too had stage 2 anal cancer in 2015. 6 weeks chemoradiotherapy. I have PRD (not diagnosed) with many of the side effects none of which was ever mentioned prior or during my treatment. I have had several colonoscopies a proctogram and many MRI and CT scans. I spoke with my GP about getting a PRD diagnosis but she clearly had not heard of it. I referred her to PRDA and the Royal Marsden so she can check it out herself. I was in St Thomas’ prior to Covid for consideration regarding a neural modulator but there has been no contact since 2020. My symptoms include UTIs’ on a regular basis for which I have been treated with Aluril a kind of bladder cleansing and relining treatment which worked for a little over a year but looks likely it will be ongoing on a yearly basis. If I’m not on the loo (diarrhoea) I’m cleaning it! My sacroiliac joint is inflamed often which then renders me useless until I have rested it for several days. I suffer from bloating and wind and have stenosis of the vagina. I take Imodium daily (2/3) and watch what I eat. There is no pattern to any triggers as such. I did follow the FODMAP diet (Guys Dietitian) for 6 months but that didn’t help with the fecal incontinence. I carry a RADAR key and bag with clean undies, cleaning stuff etc in the car. I have now thanks to this site downloaded 4 apps which locate toilets when I’m out. I don’t go out often as I find all of this overwhelming and embarrassing. I retired from work early due to my ongoing health issues. I am very glad I keep researching this problem(s) and that I found this site. I always thought it was just me but reading the news on this forum has been a revelation to me. I’ll keep my own research going in the hope that PRD will come into the foreground of the NHS and other care providers.