Advice please re burns

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Advice needed please...  

I'm day 27 of treatment and if feels like out of nowhere the burns have turned-up. I've had a pretty disrupted night's sleep and I'm worried about the next time I need to pee or poop - as during the night that really hurt.  I'll see the radiotherapy nurse today but I wondered if anyone who made it through this final phase has any advice - pretty please. 

Thank you x

P.s I knew the burns would arrive - I'm seeing this as the start of the healing phase even if it's making my eyes water! 

  • Hello Ali

    Day 27 - you won't exactly run out of there tomorrow but in your mind you will!

    The treatment very much depends on whether your burns become open or not - mine were open and weeping from back to front.  I was given Flaminal Forte gel to use in conjunction with Polymem dressings, I put a liberal amount of gel on and wedged the dressing between my buttocks and between my lady bits.  The gel doesn't sting and I had to reapply every time I used the loo and cut new dressings too.  Internally I was in a fair bit of pain and was given Instillagel (a numbing cream) with applicators and I never even got to the stage of being able to insert the applicator.  I realised much later in the day there is a definite knack.  I was quite swollen and could have coated the applicator with vaseline, or even some of the Instillagel to make insertion a bit easier.  And when inserting, the applicator is pushed towards the base of the spine.  I found these instructions much later in the day when I was given steroid foam for my piles and I wish I had known earlier!

    And as always, keep in touch with your team.  They don't want to see anyone suffer and can up your meds too to get you through the next few weeks.  I was prescribed slow-release morphine as well as Oramorph that kept the pain to an acceptable level.

    Big hug, Ali, you are almost there.

    Irene xx

  • Thanks as always  . A quick question did you find that the instagel stang?  

    I have my fote cream ready to go and will used after radiotherapy today and then wash off tomorrow before my last radiotherapy session.  

    Oh and that's interesting with the piles - I'll see if can get help there too!  

    I'm not looking forward to the next few weeks but it does feel good to be on the homestretch.

    Thanks again for your support and advice.  

    Lots of love

    Ali xoxo 

  • Sorry Ali, but the Instillagel does sting, on my attempts it made my eyes water but I have heard from others that once the stinging goes it really numbs the area down before a bowel movement, and afterwards too, if needed.

    And my piles quietened down too, thankfully!

    Lots of love back

    Irene xx

  • Hi Ali

    I used flaminal hydro and flaminal forte. Occasionally I would use instillagel, it stings a little bit when applying but you go numb very quickly, I found it lasted for about half an hour and then started wearing off. Once treatment finished they healed pretty quickly. One more day. Sending hugs. Xx

  • Wow nearly done with the daily visits! It’s going to go on a little bit longer as treatment is still working!  Keep the pain relief and laxatives going and shout for help! Radiotherapy team and macmillan team will help so keep asking (daily if you need to and don’t wait until Friday!) 

    I struggled with pain, skin fusion, bleeding and raw skin front to back - couldn’t use instilagel (hurt too much) I had to grip a towel that helped me do toilet business. Used flamigel, morphine, barrier cream laxido and pads I couldn’t get on with.  No underwear and relax laying or standing helped a lot.  

    Keep talking to your team and monitor your food and water intake / and output - it won’t be long and you will have the delight of peeing pain free - it really will happen!  Sending huge support hugs x 

    Angie (5 months on) 

  • The burns are horrific but the creams do help - your team of nurses should make sure you have what you need. Also consider increasing your pain relief - I found an increased dose of morphine helped with the pain coupled with stool softeners though! 

    You are almost there with the treatment. The burns will take a while to heal but it DOES get better xx

  • Thanks     

    After a hideous night and a bit of a rough morning - the rest of the day has been okay but I'm really scared about how painful it's going to get... I had such excruciating bowel movements this last week but the last 24 hours have been okay - I don't want to get my hopes up.

    I've just had a sitz bath clean and put flaminal forte on along with some coconut oil for the bits that are not yet raw.  I've taken my laxative and I'll take my morphine before I fall asleep at 10.30. 

    I think that's the challenge with this treatment - you know it's going to be brutal and never sure how much worse it's going to get.  

    Thank you for all the support Pray 

    Ali xoxo