Bowel problems post RT

Hello Coltrane 

The side/after effects of Radiotherapy differ for us all. The "official" advice is that the after effects to the bowel can last for several weeks. I know if I had your symptoms I would be back onto the Radiotherapy department at your hospital.

If you are having issues with a Senior Nurse you could try your allocated Macmillan Nurse or Cancer Nurse Specialist. If You are still having issues with a contact at the hospital - contact the Hospital PALS service (Patient Advisory and Liaison Service)

I know they may say it's an after effect of the treatment but they may well be able to prescribe something for you and you should be able to obtain a contact who can deal with the issue.

I hope this helps and solves the problem. Please let us know how you get on.

Best wishes - Brian.

Hi Coltrane

i am so sorry to hear of the problems that you are experiencing.

Feel free to read my profile.

What you are experiencing has and is still happening to me, and to some I have been called a late developer to the of side effects of Radiotherapy.

We are all different and so needless to say this is my experience of which everyone is experiencing different things, some fly through it no problem.

I was diagnosed 1st Sept 2020

I had the following ....

Hormone Therapy ..  two years 

Chemotherapy 6 times all three weeks apart

Radiotherapy 20 fractions over four weeks

Prior to this I had been diagnosed with Gleason 4+5=9

Aggressive locally advanced pc that had spread to lymph nodes deep  in my pelvis.

Before all this I had a TURP operation of which all the biopsy chips came out cancerous.

I like you have as I call-it unannounced toilet issues.

No warning, sometimes I get the abdominal pain and some times I am actually out of the house.

When it happens outside it is embarrassing.

I very early on found that the only way to get to a family all day wedding was to wear pull up disposable pants.

I found Aldi are better for me as well as being cheaper on the wallet.

I was quickly put on Imodium as this work in around an hour.

My wife knows if we are out and I say “wait  a minute”

she will often see me stood in the street clinching my buttocks.

I know what you are going through.

I was put under a colorectal consultant who gave me a colonoscopy.

Apart from two polyps and the removal of eight biopsies everything was fine.

My Oncologist said to me that in her words “I am sorry for what I have done to you”

When I asked what for she said “it’s probably the radiotherapy” 

she thought that there may of been some inflammation.

 I carry a radar key everywhere they cost around £7.00 from Argos and give you access to most disabled toilets when you need them most.

On long journeys I plan my route even some slip roads where I can access a supermarket and use there toilets to change.

I carry a Macmillan card that I can show staff in certain places that I need the toilet quickly.

Once I was in Aldi showed my Card to a staff member who grabbed my trolly and said you go I’ll watch your shopping.

I also have Solifeanicn  (spelling ? ) to slowdown urination.

I carry a bag with spare of each pads, underwear disposable bags and anything else I need to make me smell pretty again.

 I am hoping yours is short lived and goes away soon, but what I do know is while it’s happening it will feel like won’t go away.

 I will keep my fingers crossed for you and say a prayer to the big man upstairs.

always here for a chat 

Take care we are all here for you and never far away..

Spud

”you don’t know how Strong you are,

 until being Strong is your only choice “

Bob Marley 

Hi Coltrane , you are still in early days, so hopefully things will settle down.  My first thought is for you to report your problems to the RT team or your CNS.  Although you don’t feel anything, RT can cause collateral damage to surrounding areas which usually resolve given time.  I had RT (37 sessions) 6 years ago and following that I have always tried to be regular in my habits.  If I don’t go on first urges then I do get very strong pains, but luckily I can control it (normally).  In terms of blood, it is quite disconcerting when you see it at first.  I had small amounts every few days for years and had both a colonoscopy and sigmoidoscopy to check what was going on.  Other than radiation proctitis and a few piles nothing was found. Interestingly, I now haven’t had any blood since my last quite heavy bleed on 24 April.  I guess this all just emphasises that we are all very different, but the nurses and medics have seen it all before and can usually offer some assistance.  Hope things settle down, best wishes, David

Thank you for this Spud. Your situation seems more complicated than mine. Although my cancer was described as “aggressive” it turned out to be contained.  I started HT in January (every 6 months for 3 years) and had 20 days of RT which finished on 13th June (so nearly a month ago). I started having bowel problems just a week into the RT and it hasn’t stopped. Like you I started using pads but even then planning an outing is difficult.

i was originally given Rectal Foam (a steroid) but I had difficulties using it. I’m using it again now because i decided that i had to try something (anything actually). 
sometimes I think its improving and then, with little warning, there’s another explosion. The medical people were not particularly helpful with regard to diet. I received a lot of contradictory information. 

i am a fairly optimistic person but they didn’t really prepare me for this. 

i hope your situation improves. Good luck

Coltrane

Hi Coltrane

Sounds that we are like  each other

I think sometimes that things are settling down, and it happens again

I have been referred to Bowl and Bladder in September.

After being discharged from colorectal I have suddenly got an appointment from them to go again

My six monthly oncology/urology has been pulled forward to next Tuesday

This was all after meeting a new nurse at my local practice along with a locam

 I broke down crying saying 

"I just want.someone to fix me"

That's how bad I got

Recently been given a loading dose of vitamin B12 injections and over two weeks

I now have.to have.one for life every three months

I was constantly tired and had no energy.

I am in good spirit though and get some fantastic help and advice from Maggies Manchester opposite the Christie Hospital, they are and always.have been fantastic.

Keep going and I'll be thinking about you.

Take care and remember that we are all here to support you.

Remember your body is ill so never doubt your.pain 

Spud

" you don't know how Strong are

until being Strong is you only choice"

Bob Marley