Inflamed rectum - radiation proctitis??

[Ladyparts]

Hi everyone. Proctitis - what does it feel like? For the past 5 days I've experienced the joys of a rectum that feels as though someone has sliced it up like a pizza and poured a bottle of whisky in there! Not at all fun.

My gp had a 'look' externally and said "Yes there's inflammation there, perhaps hemmorrhoids starting up". She prescribed some hemorrhoid cream with cortisone in it and said come back in 5 days. Meanwhile my butt feels like what a baboons looks like. I have also had nerve pain near my tailbone, which concerns me.

Oddly there is a red, sore line in my, um, butt crack. I asked about this and the answer was again 'inflammation.'

So my question is - have you experienced similar, what helped in terms of pain relief etc and what did it feel like to you?

If no good in 5 days the gp will investigate further and refer me out, however I see my gynae onc in may for a routine check regardless.

Thanks x

[Blue_Hawaii]

Sorry you are going through thisI don’t just have inflamed rectum also in the bladder area gets In flamed

Unfortunately I don’t have bath, but have a bidet. With warm salted water that’s seems to give me a little comfort

X

[Ladyparts in reply to Blue_Hawaii]

Oh I'm sorry to hear that. I must admit, my bladder does feel a bit inflamed too, although it also could be nerve related.

[Blue_Hawaii in reply to Ladyparts]

That I agree with about nerve damage

[SpaghettiBetty]

I’m so sorry you’re dealing with this, it sucks having a sore butt.

I find using wet wipes/moist toilet wipe rather than toilet paper is much gentler on the sore skin. I went through so many I use reusable cloth wipes (which is great because water from the tap is much cooler and soothing).

I also remember having (normasol?) saline sachets that I would freeze and wrap in a small piece of cloth and hold against the sore parts (obviously being careful not to let the frozen sachet touch my skin directly).

I was given instilagel for sore parts by my CNS (clinical nurse specialist). It stings for a few seconds but is a local anaesthetic and antiseptic. I remember that being pretty good.

Really hope you get some relief soon. Sending you a big hug 🤗

[Ladyparts in reply to SpaghettiBetty]

Thank you xx

[SpaghettiBetty]

As to what it felt like 🤔 The external skin felt like a burning soreness.

Inside the rectum felt like I was trying to pass broken glass and razor blades. It was so intensely painful I’d be in tears on the loo and I have a very high pain threshold.

It did thankfully settle though.

[Ladyparts in reply to SpaghettiBetty]

Yes, that's what it's like! Did that happen during treatment or after? I am about 15 months out now and am like, what the hell is THIS?!

[Mumandwife]

I really empathise. I am 8 years post radiation and this is a huge problem for me and gave seen a colorectal specialist in last 12 months as well as GPs. I'm dobsick of hearing the words it's just radiation effects! Oh that's OK then I'll just live with this shall I? I am using sudocrem and other nappy creams and whilst it calms it , its not solving my issue. Have had pile cream too but then another clinician said not to use as will make skin worse. Then there is the constant bowel movements which makes it worse as I'm constantly wiping , but the wiping gives some temporary relief to the itch...vicious circle. I literally don't know where to turn with this as as soon as I mention bleeding in that area they start ordering colonoscopys and don't properly listen to what I am saying. I willet you know if I find anything else that helps. Hope you feel better soon x

[Ladyparts in reply to Mumandwife]

That sounds just awful. I'm sorry you're going through it. And yes, it's all well and good to say 'radiation side effects' but what are we supposed to do about them?! I know that when I go back to my gp they will refer and then who knows how long I'll be waiting for relief and some sort of answer. Meanwhile work, family and life goes on! It's tough isn't it x

[Blue_Hawaii in reply to Mumandwife]

I use a barrier cream called Cavilon that helps x

[Mumandwife in reply to Blue_Hawaii]

Oh I will look onto that...thank you so much xx

[Ladyparts in reply to Blue_Hawaii]

Thank you x

[Cruiseaholic]

Although I’m of the male variety, I had exactly the same. I was prescribed suppositories which I used for about 5 weeks. My proctitis lasted around 3 weeks post radiotherapy and then magically disappeared

[Ladyparts in reply to Cruiseaholic]

I'm glad to hear the suppositories helped. Do you know what they were? I'm assuming anti inflammatory of some sort. Of course every new pain makes me think the damn cancer is back. Not fun!

[Cruiseaholic in reply to Ladyparts]

I know it’s very worrying but it’s highly unlikely the cancer is back. Radiation is brutal, I think something like 8,000 times more powerful than a CT scan, so the effects can often be long lasting. I’m wondering why you would associate the pain with a return of cancer. I didn’t have any pain warnings from my cancer and, to be honest, the same is true of anyone I’ve spoken to with colorectal cancer. Everyone is different, I guess, but I would bank on the pain being a result of the radiation rather than a cancer. Wishing you well.

[Ladyparts in reply to Cruiseaholic]

Yes, you're right. That's very true. For me, one of the symptoms when I was diagnosed was pressure in my rectum as my tumour was located at the back of my cervix. But this is different and feels more like burning than anything else. I'm pretty sure it's from the radiation as you say. I don't even have bleeding, just feels like my back passage is on fire!!

[Cruiseaholic]

Uniroid

Uniroid suppositories

[Ladyparts in reply to Cruiseaholic]

That's interesting - this is exactly the same as the hemmeroid cream the Dr gave me, but in suppository form

[algy999]

Hello it's a side effect of radiation that they don't tell you about. Look up pelvic radiation disease and it explains it all. The gps tend to know nothing about the side effects. The idea is to keep quiet about the side effects as it would put people off having radiation treatment. I have found this out from bitter experience. good luck Ian.

[Ladyparts in reply to algy999]

Yes, it's awful. I dread to think what the effect will be in 5, 10, 20 or 30 years time. Like everyone here I'm grateful to be rid of the cancer, but it certainly comes at a price. I guess there was no other option, so what can you do?

[Mariecapp]

Sorry that you are going thru this. I wet to my gastroenterologist and he said that I got rid of my cancer but there is a lot of radiation damage, which means proctitis, bleeding and very painful bowel movements. I'm also on blood thinners so when I bleed it doesn't stop right away. He gave me suppositories for it but I'm afraid to use it because of my bleeding. He said that he could do laser surgery also. I'll think about that. Best to you

[Ladyparts in reply to Mariecapp]

I'm sorry to hear that. Radiation certainly does a lot of damage. I can understand you being hesitant to use the suppositories. I'm going to call the colorectal specialist today and try and get an appointment. Who knows how long the wait list will be?!!!

[Stilllooking]

Hi have you tried beating up 2 eggs whites to the consistency of making meringue. Leave on for as long as you can this is very soothing best of luck 💖

[Ladyparts in reply to Stilllooking]

Interesting! Haven't heard that one before!