Advice post treatment

Hi Lace23 ,

Welcome to the Macmillan online community. I’m so sorry to hear of your diagnosis although pleased to hear you’re through the other side of treatment already. 

There’s no easy answer to how long it takes for the dreaded pain to subside when you go to the loo, you’re doing everything right though with taking stool softeners etc., I found I needed them daily for around 3 years post treatment but I’d suffered constipation throughout. Your skin will still be very fragile so it’s no surprise that you get a bit of blood, I was told as long as it’s not prolonged or heavy bleeding then it’s probably just tears in the skin.… I too suffered with a lot of bloating & wind, sometimes I’d be walking along  & be tooting with every step, good job I managed to keep them quiet!! I kept a food diary & soon came to realise there were some foods that caused me bloating & wind that had never bothered me before treatment. I kept a stock of charcoal tablets in & they helped with both. 

Nicola 

Dear Nikki,

That’s so helpful as easy to feel that treatment isn’t working! I have meds for pain relief which I take - it’s just so painful after a bowel movement - hopefully it will improve. I will definitely try charcoal tablets- than you. I am due to start a phased return to work on Monday doing 3 mornings so hoping I will manage ok. 

Hi Lace23, welcome to the group. I will add to what Nicola said about diet and foods you ate before can have a bowel frequency effect. I was rushing to the loo around five times a day. Eventually I was put on the FODMAP diet and I am not saying it will work for everyone but it did me. I also found chocolate and caffeinated coffee the worst offender and to much wheat products. You still want to get the vegetables in the diet as well as fruit but some so soon after treatment just make you go too often. The soreness for me continued for at least a year and the early months when you are going so often doesn’t give the skin a break. Always keep your stools soft and use a suitable skin cream or balm to sooth the area after cleaning. I am two years post treatment and still have to put a balm on the skin around there. Sadly it’s all part of the healing and to distract from the pain I would sing loudly in my head and believe me it helps! I cannot believe you are starting work so soon as I know I couldn’t but then I am retired so I am so glad I don’t have to worry about that. I hope it all works out for you at work.

I remember sometimes in the early days post treatment if I’d had a particularly painful bowel movement having to go lay down on my bed to recover, they would literally leave me feeling weak & quite nauseous! I used loads of aquamax cream to keep the radiated skin as soft & supple as possible. 

I also returned to work part-time 5-6 weeks post treatment, I worked 3 full days straight but found my first day off was spent doing nothing much, just regaining some energy, then the day after I was ready to do some stuff at home.

Wishing you the best of luck with your return to work on Monday. 

Nicola 

Hi Jaycee

Thank you so much for the incredible advice. It’s a balance between wanting to include fruit and veg back into your diet and not eating things that are going to make you go to the loo all the time. Some days are better than others. I will look into what I’m eating and keep a diary. I am anxious about returning to work but as it’s 3 mornings and I can then work remotely I am hoping I will be ok. I will just need to be near a loo!! 
I hope you are recovering well. 

I find I have to lie down too and gather myself! Some days are better than others. I was told by my oncologist to use Flamigel after going to the loo but I think I will look out for other soothing creams. It sounds like you managed your return to work well Nikki so hoping I am going to be ok with a few mornings! Feeling anxious about it so I will just need to see how I get on. Hope you are keeping well. 

Hello Lace23

Another warm welcome from me to the forum.  You have already had great advice from other members, I just wanted to commiserate, I think one of my first posts was nine weeks after treatment when I said that having a bowel movement felt like passing broken glass.  I honestly though it would never end, but certainly that clenched teeth, loud gasps of pain and drumming of heels in the loo subsided.  I can't say in all honesty that fourteen months down the line bowel movements are entirely comfortable but nothing like the early days when I was wiped out for a couple of hours afterwards.  I just make sure to always have a stool softener every day, constipation is my absolute nightmare, not helped by the fact I have anal stenosis.

I really hope things will improve rapidly for you soon.

Irene xx

Hi Lace,

I'm glad you've finished your treatment, although it's still early days and I'd expect things to keep moving forward, but slowly. I've found that drinking way more water than I want and taking psyllium capsules helps keep things soft and moving. I'm a bit over a year out and still have occasional painful bowel movements, and levels of pain that fluctuate wildly from none at all to 'WTF, am I still getting radiotherapy in my sleep or something????' I also take a lot of Beano for gas.

This disease makes us focus on things we never thought we'd spend so much brain power thinking about, doesn't it?

Suz

Hi again Lace23 , the first few weeks were pretty tiring but it felt good to have a bit of normality back again. I did finally make the decision not to return full-time & still only work part-time now. 

Regarding creams I’ve always found the aquamax to be a good all rounder, I use it to wash with also as anything else, even non-perfumed wash products, seem to leave a very slight burning sensation to the skin that was burnt during radiotherapy.

Also than you for asking, I’m doing great thank you, I’ve been left with minimal longer term side effects thankfully & have just been discharged from my 5 year surveillance. 

I hope you start feeling a little more comfortable really soon. 

Nicola 

Thank you to everyone for your really helpful and practical advice. It’s great to hear that you are all doing well despite the bouts of discomfort. I will try the aqua max cream and drink lots more water. The heat is not helping! I am going to look closely at what I am eating to see if I can settle things. Take care