WARNING: This post may contain offensive language - not for the squeamish either!
So, while in hospital last week I was given raspberry flavoured liquid paraffin three times a day as my bowel was blocked. It tasted like toxic waste and not raspberries at all. Since being home I've done without until a couple of days ago when I thought I should try it again as didn't go much this week. But I thought that you need to all know that it should come with a warning - as I found out to my cost last weekend and again just now.
It tends to come out spontaneously the same way that it went in so I ended up with dark pink stains in my drawers in the middle of the supermarket last Saturday. A quick Blue Peter pad made from public toilet paper was enough to get me home without further embarrassment.
However, today it's popping out again. So, not only do I have hands which don't work and feel as if I've grabbed a shed load of stinging nettles, feet that can't feel if I'm standing up or not, legs like worms, chemo brain and am generally exhausted..... I've now got a leaky arse!!
Apologies!.... xxxxxxxxxx and another x
Written by
Kryssy
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When I had my first child the midwife warned me I could s**t myself she said the best thing you can do is leave your dignity at the door. It was a great piece of advice so I would give that advice to anyone on any treatment if you have any dignity leave it at the door until chemo has finished and pick it up on the way out 😊 Xxx
I can emphasise with you. I'm having same problems at minute, luckily however because I'm in hospital I only have to get from bed to en suite shower room. Thing is, I can't even feel it happening! Ann xx
Hi there Krissy, Gosh do sound in state & I really do hope that things improve for you soon.
I think that you should be careful using liquid paraffin, as I think that if you use to much of it then it can remove vitamin D from your system,but you would need to check this out.
love your humour/realism...thanks for cheering us all up...presume you are still in France? love C xx ps neuropathy can...boringly...become the new norm..!
Yes, live in France permanently. My mission in life is to laugh at myself and show nothing but kindness to others so it warms my cockles to know that I bring a smile to some of you. I just hope I don't get banned from Ovacome for offensive language. xxx
Your post is a perfect example of why this forum is so important. My lovely partner is a bit cynical about the need for online communities, but I read your post to him and, when we'd finished laughing, I think he understood that it's rarely doom and gloom, but people in a similar situation sharing all their experiences, supporting each other and yes, having a laugh about having cancer.
Hi Ali, my husband is also a bit cynical about my using this site.I have shown him and explained the help,humour,advice and empathy I ve received,seen and read on here from people who have walked the walk only helps! I think he now ' gets it' . XXX
Hi Kryssy, Thank you for your very colorful story we do need to see the funny side of this journey, though not funny at the time. Hope you can get on top of your side effects soon.
You've put a smile on my face on this sad day for me today (mum's funeral). Thank you. I agree about the dignity bit, I've lost mine completely after my 13 day stint in hospital!! I also passed out the other week and wet myself. My poor long suffering husband came to the rescue again. There's lots about this disease that no one tells you at the beginning. At least weve got each other to share our experiences with x x
So sorry you have had such a sad day. I wish I could have made you laugh on a better day. Love and hugs to you. I know exactly how you are feeling right now. It gets easier but it takes a very long time. xxx
I think someone has pointed out already that liquid paraffin is not common in uk. Perhaps you could look up the french for sennacot. Probably the same word! Prunes, raisins, red wine, chocolate all a bit tastier.
Starting on the prunes tomorrow. Gone off alcohol for some bizzar reason. Can't even stand the smell of it. Did the same each time I was pregnant (no drink ban in those days). My liver thinks I've already died and its gone to heaven. xxx
Constipation is a dreadful side effect of our treatments. I remember my first movement in hospital after a blockage - it was like passing a cactus. Never again, I thought.
I've been taking hot prune juice every morning with my breakfast. Being a morning pooper normally I stupidly took it at night - but only once. Missed a lot of sleep that night. I stopped the prune juice for a week last week as my potassium was above normal and prune juice is full of potassium. The pot stayed the same and I didn't poop much so ditched that and back on it again. I also have a supply of OxyPowder which I take once a week as a bowel cleanser. I'm NOT suggesting that everyone does this. I get Candida albicans sometimes and before starting the diet to kill off the yeast overgrowth I bowel cleanse for a couple of days with the OP. Used it for some years now without any bad effects. Quite the reverse actually. My skin always looks so much brighter and clearer afterwards and I love the empty feeling it gives me. If the prune juice fails or I feel a bit toxic I take my OP and away I go.
Everyone has their own method and there's some really good tips and help on this thread. Prune juice does it for me.
Oh Krystal,I sorry but this has made me laugh.I had Pacliaxol/Carboplatin last time the sensation in my finger tips was unreal.Pins and needles,burning,then add to to bouts of explosive bowel movements (can spell diorhea).I too was in the Supermarket when I dropped my purse,coins rolling everywhere.My fingers wouldn't they me pick it up,knelt on the floor to steady myself,bowel decides.... now is the time to let go...... I made to the loo but the perspiration was running.At the time I was mortified,now I look back and laugh out loud.What people must have thought? Feel for you,keep the humour! Best wishes Sharon x
Hi Sharon. I love it that you can laugh about it now. Some of the stuff that happens to us wouldn't be believed if you put it in a sitcom. I'm doing a shop today on my own for the first time with my numb fingers and wobbly legs and being trusted to drive. Whooppeee. Unbreakables only, hubby said. I'll see xxx
Thanks Chickysha. Trouble is I have only had one day at home since I came out of hospital last Friday. So looking forward to tomorrow when we can kick back and do nothing. Being retired is harder work than work itself. xx
Don't think you can be banned from making us smile. Gosh Rasberry Liquid Parrifin must be as pricey as the gorgeous Du Lac Chocolats my brother brings me from Nice every so often. I feel deprived as they only have the plain old stuff here in Ireland!, However it is good for skin irritation
Hi Suzuki. I have the choice of nut flavour too. Gonna give it one last chance and then I'm chucking it. Bought pads with wings today to stop embarrassing moments. Wings ay? Things have certainly come a long way since I had periods 30 years ago before my hysterectomy (without ovaries of course). xxx
Hi Lily-Anne. Nice to hear from you again. Been a bit worried for you since your last post. I hope you are feeling more positive now. Having never had a bowel problem I wouldn't know what's out there to get things moving. Bought some prunes today and I'm giving the liquid toxic waste one more shot tonight and if nothing happens in the morning then it's prunes for breakfast and my sat nav set for the nearest toilets whilst I'm out tomorrow. Take care sweetie xxx
Tried Movicol and it gave me gluten tummy. Must be some in there somewhere. Can't tolerate a snitch of gluten. Got my sticky winged whatsit secure in a pair of passion killer knickers for the night. Feels very weird. Better safe than sorry. Nite nite xxx
Thanks, Krissy, I sure needed the levity! Love your sense of humor! That's pretty much my motto too. Keeping positive and seeing the humor in a situation steals away it's power.
I think each one of us can relate to piling on the pads inside an adult diaper (Yup, it was like a stack of mini mattresses between my legs) just to make a short trip to the super market.
Bless you and hope it all sorts out and you feel better.
Poor you. What a laugh for us though. Due to my bowel damage I have to make sure I go everyday which for me as a once a month sort of person is impossible. I was worried about getting caught short so have been prescribed Docusate and Senna. I'm allowed up to 4 senna a day and 2 docusate. I find this very successful as I can control the dosage myself. Also this way I find time to find a loo if I'm out.
I seem to be keeping things bowel wise in order at the moment. If I go even one day without a bm I take 2 sachets movicol and 5mls duphalac and by next day am sorted. I'm delighted about that as i.had a horrendous week after cycle one with alternating bouts of constipation and diarrhoea. Hope you get sorted soon as well.
Well, I'm back in one piece. Only dropped one tomato, a pack of fabric softener refills and the car keys. The softener was picked up for me by a lovely old gentleman with a walking stick, the tomato rolled under the counter because I kicked it as no-one was looking, and I picked up the car keys all by myself but my wig almost fell off. Had two emergency stops in public loos and met a friend who almost didn't recognise me as she's seen me shaven headed all week. I feel like Captain Scott returning to base camp. Off to bed for a sleep. Wake me up on Tuesday zzzzzzzz
Absolutely love your sense of humour. It reminds me of one of my funny moments. Walking up 3 flights of stairs at the marsden with my partner, who I had left behind but could hear his heavy breathing. A doctor coming down said to him 'there is a lift'!!!!! I said I'm the patient not him!!!
Liquid paraffin has not been used in England for many years. First choice now is lactulose liquid which works well for me preventing post chemotherapy constipation due to anti nauseant ondasetron. Do not wait to become constipated - take for a few days starting evening of day one. Personally I would rather have the odd accident than the horror of being completely bunged up. Incontinence pads or pants are very useful.
I think they gave me liquid paraffin as I'm on loads of other drugs. I didn't mind as it was a bit more "natural". I'm on prunes now and all is well again. No more leakage thank goodness. Onward and upward, as they say. xx
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xxx
Great, GREAT news!!!
round 3 update
Gutted!
