Never the same again?

Hi Eleni D,

Thank you for asking this question because I was wondering the exact same thing! I am five weeks post-treatment and still have quite a bit pain when I use the bathroom. Like with you, the intense pain of the immediate post-treatment period has mercifully waned, but I have been surprised by the persistence of the pain and am wondering if pain will always be a component of using the loo.

Look forward to hearing from other forum members who are further along in their recovery! Xx

Hello Eleni and Poppydays,

My experience was that going to the toilet became easier as I healed from the radiation, and I don't have any pain going at all now, but I am almost four years on. I still have some light bleeding if I have a hard poo (which I had checked and is ok, TMI sorry!) so I just try to stick to eating well, and find fruit is the thing which keeps me regular, although some people here take a stool softener or laxative, and you might find some foods irritate you more than others.

Your radiotherapy team will help you with this and any other symptoms you have, so make sure you tell them as soon as anything occurs, but to answer your question, no - hopefully going to the loo will become much less uncomfortable as time passes.

Dear Eleni D

Congratulations on being post treatment! Well done.  I am now 2 years post.  I used Laxido every day for 18 months and now only maybe once or twice a week.  It is important to keep stools soft and easy to evacuate and if you achieve that then you will be pain free.  Drink loads of water - it helps. I couldn't leave the house til 11am for the first 5 months as I couldn't trust my body but it gradually becomes easier and going to the loo becomes easier too. I occasionally struggle if I get constipated and then open up old scarring and get slight bleeding so ward against that all the time.

Time does heal.  Good luck

Carole x

Hi Eleni

I finished treatment on 6th November 2024 and I was back at work and normal life by the end of  November. I wouldn't say my toilet habits were normal (they are improving) but they were pain free. Re your question my personal view would be to try and integrate back into life, but only you know how much pain you are in. We all react and cope differently so go at your own pace. Sending hugs. Xx

Hi Eleni and Poppydays,

I’m sorry that you are both still experiencing pain. I know that everyone is different in terms of the location and staging of the tumour and recovery responses.

What I can say is in my experience, this element of the pain does get better. Everything is still healing up for both of you and the MacMillan nurses reminded me that what is happening externally is also happening inside, so everything is very tender and sensitive. It is still early days in terms of recovery for you. That whole area has taken quite a battering. I don’t think it’s a long term thing and hopefully will improve 

 I have continued to take a stool softener and I believe this helps. I wouldn’t say that things have returned to normal but it’s not painful. 

I very much hope that the pain eases soon for you both.

xx

Hi Eleni D  & Poppydays2 ,

For a large number of us I think the answer is yes the pain you experience going to the loo slowly improves over time & personally I’m almost 7 years post treatment & would say for the last 4 years I’ve been pooping pain free without the aid of stool softeners. I do have some anal stenosis but that too has improved over time. Because of the stenosis I kept on with the stool softeners for around 3 years post treatment & they helped me avoid painful bowel movements for the majority of that time as unusually I suffered with constipation throughout & post treatment. I do have some lower back & sciatica issues still which I do physiotherapy exercises for but other than that life has returned to normal. There are a small number of people that have ongoing issues either bowel related or with pain with bowel movements & in these cases there are procedures to help with this but that’s something that will involve a discussion with your treating team much, much further down the line. 

It’s really difficult to be patient in your recovery once your treatment is over, we’re all the same in that respect, we want to be out of pain & get on with life but when you think what our body’s have been through over those weeks in treatment it takes a little time for things to get back to anything near normal. 

Sending lots of healing thoughts your way to you both. 

Nicola