Advice please re burns

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 Irene75359 . 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 Irene75359 Bungle1 Angie SE Neuro72 

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  

Ali xoxo 

Hi Ali,

So pleased that you have finally reached the last day of treatment. It’s such a big milestone.

Sorry that you are experiencing such burns and pain though. I remember that despite all the warnings, nothing quite prepares for the reality of living it.

I sadly don’t have any additional advice to offer as was only given Flaminal cream and never had instagel. I found an increased dose of morphine together with the stool softeners, sudocrem and loads of rest got me through this difficult stage.

Take things very slowly, make no short term plans, be really kind to yourself and it honestly will improve.

Big hug to you xx

Thanks PEB24 , when did it start getting bad for you and how long did that last? It's not feeling too uncomfortable as yet but literally finished treatment today...  

I know there's no alternative but to power on through - I'm just physically and emotionally drained from all the agonising pooping - however in the last 24 hours that seems to have improved (or is that just a fluke!).

Thanks for caring and sharing.

Xx

Hi Ali,

So great that you’ve finished treatment! Fantastic.

For me it got bad in the last 4 treatments and remember wondering how I would manage the final 2. Up until then I thought I’d got off quite lightly.

It remained bad for 3 weeks before improving but think some others felt improvement more quickly. This was the period when kind friends were organising things for me to celebrate marking the end of treatment and it was just so difficult!

You seem to be doing all the right things and it honestly will improve. Hang on in there, use the pain relief and plan nothing in advance!

Wishing you well for the days ahead and big hugs x