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Deterioration of this disease

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Re: Deterioration of this disease

I'm also doing the poo dance. I managed to shoot three huge hard bullets this morning but worried about the danage I my have done...bum certinaly very sore.

Just had our bathroom done. (Focus on big walk in shower with room for stool, other kind.. so missed chance for bidet...shit.)

I use movicol and senocot high strength but they are not reiable.

Jane

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Re: Deterioration of this disease

I too had my own poo gate sage - and ended up with bum operation - very very painful, as a result had bidet installed when re-doing bathroom. This is an invaluable piece of kit for all those women who are unable to reach over and put bum in bath.

Debs i hope the poo will come through for you and soon!

Take care - it is miserable I know.

Guest user
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Re: Deterioration of this disease

Oh Debs, I really feel for you. It's one more thing you don't need, isn't it. I know when I had a my own poo gate saga (last year on taxotere) how poo and the need to poo totally took over my life. I kept telling myself that everything must out eventually, but when it did I actually caused a bit of damage and had to go and see a bum specialist. To cap it all, like you, I couldn't use any suppositories and had to wait for things to heal naturally (which took ages because I was on Avastin too, which causes slow wound healing).

I was told to drink loads and loads of water - apparently you keep on absorbing water right the way through the digestive tract so you can, hopefully, ease things along. Also, I was told to take six movicol all in one go and I think that was eventually what did the trick - even though it wasn't pleasant.

Thinking of you lots.

Deirdre

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Re: Deterioration of this disease

Dear Debs,
We are all gong through this with you..I pray today will be the day!!!!!!!
Take care,
Love Janx

Guest user
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Re: Deterioration of this disease

Hi Debs, well it was berry gate its now poo gate, my heart goes out to you, there is nothing worse than that horrible feeling of being unable to go.

fingers crossed for you that there is some motion in your motions today!!!

take care

love

Carol xx

Guest user
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Re: Deterioration of this disease

Hi Debs
Im still dancing,any luck yet ? I really hope so I personally know how you feel and its so painfull.
Good Luck Debs

Love and Hugs xx
Jackie

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Re: Deterioration of this disease

dancing with everybody else and hoping you are more comfortable very soon.
Love Nicky

AnneS
Member

Re: Deterioration of this disease

Doing a poo dance and prayer for you Debs.Sorry you're having such an awful time of it. I'm not surprised you're finding it tough. We're all rooting for you Debs. Really hope tomorrow brings a better day for you. Love and big hugs Anne xxx

magsi
Member

Re: Deterioration of this disease

Hi Debs

Hope the unhappy and weak bunny will soon be bouncing around again.

Love and prayers

m x

Guest user
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Re: Deterioration of this disease

Well it looks like it is poo dance and prayer time. It is truly sh@t or bust time. Went to have my pamidronate and vinerolbine but guess what bloods not good I am nuetrapenic again got the pamidronate and told to go home to bed. They have told me to take sena and movicol not allowed suppositories or any other external help due to danger of infection. Feel like a very unhappy and weak bunny. I just feel sick all the time and I am off my food will try the strawberry tomorrow. Would love to do the litre of red wine but poor Ian may get done for 'assisted suicide' my livr can not cope with the odd glass at the moment.
Thank you for all your replies sorry this is all getting very me me me I promise I will give back to you all when I poo!!!!
Love Debsxxx

Guest user
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Re: Deterioration of this disease

....failing that a litre of red wine.....

Guest user
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Re: Deterioration of this disease

Debs

Not to be trite but have you tried a punnet of strawberries? I always found that when terribly bunged up a strawberry overdose did the trick.

The alternatives e.g. Indian curries, suppositories are too horrid to contemplate. Have a strawberry cream tea for some "gentle" persuasion.

Best wishes
D

Guest user
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Re: Deterioration of this disease

.............my post has disappeared - where did it go?

Anyway Debs there are stronger things than movicol - perhaps they can give you something stronger to help.

I agree with Ripley, we could do a poo dance, although I'm not quite sure what MOVEMENTS that would involve.

Seriously tho nothing worse than cramping pain - I hope you can get this sorted soon.

much love

Lenny
Member

Re: Deterioration of this disease

hi debs,

hope things get sorted in some way or another today... maybe the chemo will do the trick this time, there truly is nothing worse.... i suffered terribly this way thru' chemo.... this will be the strangest prayer i've ever made! but saying it as i type.

lots of love,

lenny
xxxx

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Re: Deterioration of this disease

Hi Debs

i Dont know if you remember me, but you helped me some what, during my mum's treatment and unfortunately when my mum passed away in April this year!

It absoulutely breaks my heart reading your post, to the point i'm at work choking back tears.

This site is amazing for ladies like yourself, something to let off steam.

I wish like others, that i could do something for you, to take the pain away, like i wanted to so many times for my mum.

It's bad enough that you have this dreadful disease, but to suffer and become like a prisoner in your home, is nothing more than cruel.

Your husband sounds amazing!

I'm thinking of you and the rest of the ladies on here.

Love Kerry xx

Guest user
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Re: Deterioration of this disease

Hi Debs
hope you have had a result - theres nothing worse and I think makes you feel so awful ( very strong black coffee helps me) but you may not be feeling up to that.....I am thinking of you and willing an upturn in your health....( and emotional well being) love jaynex

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Re: Deterioration of this disease

Aww Debs me poor bairn. I really feel for you. Yet again I wish I had a magic wand.I hope they can sort you out very soon.I have been so lucky. I just take Senna at bed time the second day after chemo and Im running normal after that. Took a few chemo's before I worked it out how to keep things moving.
Know we are thinking of you darl. HUGE BIG ((((((( HUGS)))))))) xxx Rita

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Re: Deterioration of this disease

Oh Debs, as if you haven't got enough to contend with! Every treatment for something seems to bring with it its own catalogue of problems doesn't it?

My Macmillan has just recommended movicol for me, she seemed to think this will be the answer....hmm lets see shall we?! Hope it works for you soon, it'll be such a relief for you and help with that awful nausea.

Thinking of you

Bex xx

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Re: Deterioration of this disease

Hi Debs

So sorry to hear that you have another problem to contend with, this really is a sh@@ty disease (excuse the pun!). I hope your Oncologist or GP can help you out with a solution and painkillers. Hope you are feeling the benefits of the transfusion.

Love
Linda

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Re: Deterioration of this disease

Hi Debs

Really hope the transfusion kicks in soon and you feel the benefit. 6 hours is a bl**dy long stay at the clinic at the best of times, so I really feel for you having to endure that when low bloods make you feel so weak.

I am going to try and do a poo dance for you to get things going. I am bunged up myself at the mo after Thursday's chemo (which is unusual as this regime has gone the other way usually), but haven't got over a week's worth like you. I must say I don't like Movicol at all - gives you loads of cramps and urges but not much to show for the pain. If you aren't drinking enough fluids then Milpar is quite good (although foul). Fingers crossed for a prompt evacuation!

xxx

Guest user
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Re: Deterioration of this disease

hi debs ,
hope you get your poo problem sorted out soon, when i had my first op on my back many yrs ago, i din't go for nearly 3 weeks and i agree it is worse than labour.
all the drugs just seem to either dry everything up or loosen everything up.
hope you get comfortable soon.
reneexx

brightlight28
Member

Re: Deterioration of this disease

Sorry you are still suffering Debs, and hoping the blood transfusion will have a good effect as well as improving the colour of your skin.

Bright x

Guest user
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Re: Deterioration of this disease

Thanks Lily at the moment it is worse than labour pains.
Love Debsxxx

Lily200
Member

Re: Deterioration of this disease

Hi,
Debs I saw your post about poo problems and thought I would let you know how my similar problem went and hope maybe something may be of help to you. I had 8 chemo with the last 4 being double doses of cmf, given on day 1 and repeated on day 8 of each cycle.Cmf gave me the terrible runs including 14 attacks in one day at its worst, which was so painful as it burnt. I basically had the bath ready and sat in it after every attack, just to be able to stop the burn and cope. Similarly to what you have experienced I would dramatically swing between quick drying cement constipation and non-stop go go go!I kept a poo diary to track when the switch over happened. Just before going to blocked up I would start senna tablets and rhubarb is good, etc. The 'go cake' recipe is still probably around too. When on the 'go' spell even one tiny cherry tomato would make me have pains and problems for 48 hours. In the end for certian days I had to eat no fruit, veg or fibre at all. I also became lactose intolerant for the first days after chemo and realised that cutting out milk helped a lot. The second mouthful of coffee would have me running if not. My diet for a few days was potato (but no skin if a jacket), white bread, ordinary pasta, chicken and any meat but cooked so not much oil, white rice, jelly and no milk in anything. It is a miserable diet but it did really work for me and most importantly gave me back control and time out of the bathroom and thinking poo all the time.Hope any of my waffle may help or give you an idea to try and best wishes to you and all the other ladies on here battling through tough days
Lily x

Guest user
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Re: Deterioration of this disease

Hi everyone,
well I am still feeling ill but at least I look pink and not cancer gray. I went for the transfusion on Thursday as I sat in reception I had my head on Ian shoulder and one of the nurses asked was I struggling Ian said I was and things got moving rather quickly. I was given a bed and bloods done told I had dropped further, was not at all surprised to hear this as I have felt so weak. Plus I am having terrible cramps as I have not been since last Friday. Anyhow after brilliant treatment and care I was able to leave six hours later. On the way out I saw one of my usual chemo nurses she said I looked very pale. I should have gone for pamidronate and chemo on Friday but after long chat decided it would do me any good to have the poo problem on Friday night so I am going in on Monday. But up to now I am full of movicol but still nothing has happened so I think I may have been better of having it done after all.
I just feel so sick and can't stand these cramp pains.
Love to everyone, weather still beautiful here.
Love Debsxxx

Lenny
Member

Re: Deterioration of this disease

hi debs,

if i'm right today is a day of rest before you blood trans. tomorrow so hope that it helps with your breathing so that you can enjoy a little of the september festival in the lovely part of the country where you live. by the way i think ian has had a great idea about a support group there seems to be very little out there. i read your posts everyday and so you never far from my thoughts and prayers,

love

lenny
xxxx

crispy
Member

Re: Deterioration of this disease

Hi Debs

You're not exiting if determination has anything to do with it!
L and p Crispy

magsi
Member

Re: Deterioration of this disease

So do I Debs and I'm sure you won't
Mx

Guest user
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Re: Deterioration of this disease

Thanks celeste I hope I won't be exiting for some time yet!

Guest user
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Re: Deterioration of this disease

Debs I think you meant exciting not exiting!

Guest user
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Re: Deterioration of this disease

Thanks Bex, not sure Dr I met today will agree with dignified think I terrified him!
Hobbled into reception leaning on Ian everyone knows me and one of the nurses came over she could see I was struggling for breath. Didn't have to wait long before being shown into examination room. The door had been left open and various nurses walking past popped in to say hi. Anew Dr walked past us 3 times and we laughed I knew he was mine. Think I caught him of guard as I said 'well I don't have much confidence in you if you couldn't even find the right room' bless his little face dropped but he came in and continued with examination. He said 'Brian ' had told me I am the sort of women that knows what she wants and gets it. Well I still can't breath and feel weak but was assured that this will improve after blood transfusion on Thursday. I am being booked in for a scan in next few of weeks after 3rd lot of vinerolbine to see if it is doing me any good.
Well that all the news I have in my exiting world(not).
Love Debsxxx

Guest user
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Re: Deterioration of this disease

Its is an ugly stinky b*stard of a disease, there's no two ways about it! Glad you feel motivated to get up this week, even if it is only for more flippin hospital trips!

Hope you feel better as the week goes on and you find yourself getting up for some good reasons too!

You are always so cheery and dignified, telling it like it is but without a hint of self pity. I have been feeling very sorry for myself the last couple of days and have been an undignified mess! full of self pity, rage and despair. Then there's you, good old debs, showing us all how it should be done, thank you and keep posting.

Lots of love
Bex xx

Guest user
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Re: Deterioration of this disease

Hi everyone,
Crispy and Magsi keep up the good work.xxx
Ripley I don't know how you can suffer the cold cap but glad it is working and you still have hair does it make a difference to eyelashes?
Well Mcmillan have just rung to try nd get to see me but it is looking like next Tuesday is the earliest. I am at clinic today blood trans on Thursday and pam/vinerolbine Friday. All I want to do is stay in bed so maybe this busy week is a blessing in disguise. At least I have to get out of bed! I have woken up each morning with a hangover type headache, ucking great as have not has a glass of wine since Friday. Bowels have gone the other way now cannot take any stuff in case I poo myself on long journey to hospital
Well I have said it before this is an ugly stinky disease and I wish they would hurry with a cure.
Hope all of those on treatments are doing o.k. Lesley wishing you well with rads. Sorry I am rubbish at mentioning everyone's names.
Weather is still good and we have the September festival in St Ives lovely time of year really hope Ian and I get to enjoy some of it.
Love Debsxxx

crispy
Member

Re: Deterioration of this disease

Hi Debs

Sorry about the weekend. Hope you manage to see more of the sea.
Still in my thoughts and prayers.

Love Crispy

magsi
Member

Re: Deterioration of this disease

Hi Debs
Sorry that the weekend was rough for you, but hope this week is much better.
You are both always in my thoughts and prayers.
As always
M x

Guest user
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Re: Deterioration of this disease

Oh Debs - so sorry - sounds awful - hope things have improved since then - and you have been able to get more than a glimpse of the sea - sending you much love , jaynex

Guest user
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Re: Deterioration of this disease

So sorry you've had such an awful weekend Debs - hope you're feeling a bit better now and that reaction was a one-off. Really hope the transfusion does the trick and gives you some energy as well as helping with the breathing, it must be awful for you.

Glad Ian's feeling a bit brighter too, thinking about you both.

Take care
Lesley xx

Guest user
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Re: Deterioration of this disease

Hi Debs,

Sitting on the loo is not where we want to be at the best of times, whether it's the runs or the turkey-sized poos, so I dread to think of the 6 hour shakes plus a thorough colonic irrigation. Euuughh. Really pleased to hear that the Egyptian cotton survived, but too bad about the pork chop - sounded lovely!

I hope the transfusion gives you the boost you need - I hadn't thought about how the red blood count affects the breathing, but thinking about it now it makes perfect sense as it's the oxygen that's being pumped into the blood, isn't it? (or something like that).

I'm really glad that Ian has felt better since seeing your GP. I find that that offloading, or verbalising thoughts that have been running around in your head unspoken, can really lighten the load and give relief. I have found the support from the hospice - whether it's counselling or complementary therapies - really beneficial, so I hope you find it helpful too.

Wishing you a good week.
xxx

Guest user
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Re: Deterioration of this disease

Bloody hell Debs - I hope the rest of the weekend improved after that. All that time on the loo, shivering and shaking is exhausting, - this disease and the treatment is bloody dreadful a lot of the time.

I too hope that you will feel much improved after the transfusion.

You take care mate x

nicky08
Community Champion

Re: Deterioration of this disease

Hi Debs
Hope you are feeling better after an awful weekend. Also that Diane is recovering as well. It is a truly awful disease in more ways than one as we all experience so many different things from the treatment alone.
To everyone on here going through bad times I hope you improve soon and the treatment does it's job and, as Candide says, thanks for all the support you all still give even when feeling so cr@p.
Nicky x

Guest user
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Re: Deterioration of this disease

Hi Debs

I've spent the weekend like a burst couch after my chemo on Friday and had stomach cramps, basically never been off the toilet either. I've never had this reaction before but that's one thing I've learnt there's no point in trying to predict what this disease will do next.

Hope you are feeling a wee bit better and really glad to hear that you got your treatment.

Love Diane

xx

Lenny
Member

Re: Deterioration of this disease

nothing worse is there..... not fair!!! during chemo i was either like you are just now or the other way, i always called that making piles! but i am sorry and i hope tomorrow is a better day, it should still be sunny maybe you might get to enjoy it a bit. i'm sure ian won't mind the odd stain or two...

lots of love, hugs and prayers,

lenny
xxxx

Guest user
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Re: Deterioration of this disease

Well one step forward and all that. Had treatment yesterday and last night a friend from Manchester came for dinner We had popped in our local farm shop and got 3 big pork chops. They are their own pigs so we know they have a good life before making it to the table. Couldn't eat mine as I started to get griping pains in my stomach, this happened last week as well but I thought it was a one off. Well I had to leave the table say my good nights and spent the next 6 hours shivering and shaking on the loo. Talk about colonic irrugation(?) the eye of a needle springs to mind!! Been asleep most of the day but had to keep waking to check I don't poo the bed.
As most of you will remember with 'berrygate' Ian is very fond of his whit egyptian cotton sheets. Maybe I should check out e bay for some winciette ones.
Thanks for replies hope you are all enjoying the sunshine. I do get a glimpse of the sea from our bedroom window if I can stagger over to it.
Love Debsxxx

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Re: Deterioration of this disease

Hi Debs,

Just wanted to say I always read your posts and notice that you are often the first to support the newbies and others who need advice and support, despite your daily struggle with this horrible disease, I admire you for that.

Your strength, warm advice, and the way you cope really inspires me to carry on.

Hope you're having a good day today.

Big hugs and best wishes

Bex xx

Guest user
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Re: Deterioration of this disease

Hi Debs

So glad to hear that, fingers crossed, there may be signs that you are experiencing some 'green shoots of recovery' in your energy levels and hope that the transfusion helps you with that. Ian sounds like one helluva guy to be be thinking about a support group. Hope you have a good weekend.

Luv
Linda
x

AnneS
Member

Re: Deterioration of this disease

Hi Debs,
So glad you got your treatment and that Ian is feeling a bit better following his appointment with the GP.
It's good to hear that you sound to have a supportive GP.
I do hope you are able to have a reasonable weekend. We've had lovely weather here today.
Thinking of you both and keep your wonderful posts going.
Much love and hugs,

Anne xx

peacock
Member

Re: Deterioration of this disease

Hi Debs

Before I lose my connection again (don't ask) I just want to say that I hope you feel some benefit from having chemo today, without too many side effects too and sleepiness. I think you will feel much better after your blood transfusion - I needed one a few years back and could barely walk or breathe, but gradually improved after 2 pints were put back. (Maybe it was the vodka that went with them that helped, as in a bloody Mary!) LOL.

Have a great weekend

Guest user
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Re: Deterioration of this disease

Hi Debs

Really glad to hear that you were able to have your treatment today and am hoping that the blood transfusion will help next week with your energy levels.

Also glad to hear that "happy face" is back again.

Have a good weekend

Kay xx

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Re: Deterioration of this disease

Hi Debs

I havent posted very much but wanted to add my voice here to tell you how brilliant you are. Im only 31 and have been living with a secondaries diagnosis for a year, my primary diagnosis having been three and a half years ago. I have found the lack of information from my doctors about the reality of this disease confusing and in many ways more frightening than knowing what to expect. I have a wonderful husband but often feel very alone as my friends are all busy living lives that have been untouched by the kind of sadness I feel. Thank you for sharing your experiences with those of us who dont necessarily post but come on here to look for knowledge about what we are facing and support. You have many friends here who are following your posts and willing things to improve for you.

Heather. xx

Guest user
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Re: Deterioration of this disease

Hi all,

Great you got your treatment Debs, I really hope the blood transfusion helps you as well. Ian sounds like such a generous man to be thinking of setting up a support group, I'm glad he got some help and has happy face back.

Take care

Veggie