6 weeks post treatment

Hi Debh1

Don’t be alarmed it can take a while Deb. Everyones different so there’s no timeframe as such by which you should expect to feel better. Its an ongoing process, but I understand your concern and frustration.

As I’ve mentioned to you before, my skin took a long time to heal and going to the toilet was painful for both a wee and poo for a good couple of months. Nothing that I couldn’t cope with, but I never really looked forward to going to the loo! Whilst your skin may look intact and healed externally, internally will probably be very different.

Continue with the pain killers, any creams and keeping the area as clean as possible. Epsom salt baths are great if you’re not doing them already.

As long as you feel you’re making progress, albeit slow, and not going backwards, I think you just need to give it more time.

At 6 weeks I had a post-treatment check-up with my oncologist. Is this something that’s booked in for you? if so, you will have an opportunity to share your concerns and get some advise and reassurance then. At my 6 week check things were still very inflamed, my oncologist looked but didn’t touch and told me to give it another 6 weeks. By then the situation had massively improved.

You’re doing great Deb and its much better to come on here then fester and worry away at home.

Sx

Thank you!!

Its definitely not getting worse, just not much better.

I have an appointment with the oncologist at 8 weeks, so not long until I can have a chat with them.

I haven't actually tried the salts so will give that a go. It does still hurt to wee too, so its reassuring to keep remembering that you experienced that too.

Yeah it's all manageable and not really affecting me doing bits and pieces and much better if I have a day when I've not had to open the bowels. I need to keep reminding myself to be patient.

Thank you ! 

Deb x 

Hi Debh1,

I totally agree with everything Sarah has said there. For the majority of us healing of radiation damaged skin seems to happen quite quickly once symptoms have peaked but certainly healing internally for me has taken much longer. I’m at the same stage as Sarah, we went through treatment at the same time, so 15 months post treatment & pooing is still sometimes quite uncomfortable! I discuss this at each follow up appointment because I sometimes get a bit of bleeding (only when I go to the loo) which my oncologist thinks is most likely a fissure & my surgeon commented on his last DRE that things were ‘pretty tight in there’ so I suspect it’s stenosis that causes the discomfort as it seems to be the stretch that’s uncomfortable but once I’ve been everything is fine & there’s no discomfort afterwards. Early on in my recovery though I experienced exactly what you’re describing though & with time I found the period of discomfort after going to the loo just gradually got less & less & now I rarely suffer that at all. 

As Sarah has said keep on with creams etc., my oncologist has just suggested sudocrem to me if things get a little sore as it’s antiseptic so it keeps everything clean & acts as a barrier too. I’m still having to take a softener each day to avoid things firming up too much & it makes it way more comfortable to go! 

It takes a while but you’ll get there I’m sure, I don’t think things are ever quite the same but a small price to pay eh? 

Nicola x

Unfortunately 2 years on I can still have soreness at times and 'toilet problems'.   I use the Epsom salt baths, moisturiser and good old Sudocrem which all help.   I also try to keep things soft with the right diet which helps.   I have been on antibiotics for a urine infection this week which seems to have altered things too.

However I saw my Consultant today who reassured me that my skin was still tender but nothing to worry about.

Small price to pay for being here?

Hi Deb. I'm 2 years out and take a sachet of Laxido every night to keep poop soft...as anything other than soft still hurts badly. I think everything has shrunk so a normally formed poop would be agony. I've accepted it's how things will stay...but I'm just glad to still be here and resigned to taking Laxido forever! Hope everything improves for you. Penny.x

Hi

Not sure where to post this but wondered if you (or someone on the forum) can recommend what best to take to avoid getting constipated also although going to loo a couple of times a day I don't feel I am emptying my bowels as I used too - is that normal?

Deb1E x

Hi Deb1E, 

I have movicol on repeat prescription from my GP, I take one sachet mixed in a glass of water in the morning & that’s usually enough to keep things comfortable. To be honest It’s taken 15 months to get to this point though, with the sachets you can take them a couple of times a day if needs be & I've just juggled it and taken them as & when needed, if I’ve had a day when it’s been a bit painful to go I’ve taken an extra sachet at night also or 2 together the following morning, but now things seem to have settled down with me just taking one a day. Make sure if you ask your GP for something that it’s softeners & not laxatives that you’re prescribed as the aim is just to make it easier to pass the poo not to make you poo more!!… As for the feeling of not emptying completely when you go to the loo I still get that too sometimes, with the nature of the treatment there’s bound to be a lot of disturbance with our bowels & with the radiotherapy being aimed where it is I’m presuming there’s also some nerve damage in there also!

Hope that helps a little.

Nicola  

I remember feeling a similar sensation. I was taking laxatives and suppositories because I felt I needed to go but couldnt and it was painful.. I believe it was an illusion in effect. If you are going a couple of times a day then your not.constipated and probably shouldn't worry.

If you want a gentle laxative/softener then Lactolose does a good job and it available over the counter. I have a repeat prescription to counter the cocodemols and  keep things nice and soft. You can reduce or increase your dose to find the right balance for you too.

Ian x

I just logged on to ask exactly the same question, although only 4 weeks post treatment! I find Laxido definitely helps, as does griping the radiator with my hand. Somehow distracts me from the pain.

Laxido tastes better than movicol, and I have it on repeat prescription from my GP.

Even though some of you are still having problems it’s reassu to know I’m not alone going through this.

xx 

I am six years post treatment and have the complete opposite to you. i.e. I take 3 loperamide a day to avoidl leakage. Most days are fine but some times I still have a  problem. I still go out with a supply of baby wipes and pads just in case. Still apart from that I feel OK. Like you I have accepted the way I am and doubt there will be any improvement.

Valerie