Debilitating Constipation & misery

Had my surgery on 9 Jan, & then restarted chemo last Friday. Honestly, I'm at my lowest ebb so far. Since chemo I've had no energy, & spent most days in bed. The nausea & constipation has been awful, I've been reducing down the painkillers (Oxycontin) and taking movicol & suppositories but I feel so horrible. I'm sick & tired literally of sitting on the toilet in pain, sweating & feeling as unattractive & ugly as I've ever felt. It struck me then how f**king lonely this journey is, when you sit there alone with no one who understands. I keep thinking if I can get something under my control I'll get through this & feel better, but it's Thursday tomorrow & I honestly don't feel much better at all, plus I've got more chemo on Friday. I know this time will pass eventually but I'm finding it so hard right now, breaking out into convulsing sobs every now & then...

19 Replies

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  • Hi Sarah.

    You've not long had your surgery. Everything takes time to settle. It is hard as you're dealing with healing and the chemo. It will get better. Honestly it will.

    It's hard to be positive sometimes with this horrible disease but we are all here for you. Don't be hard on yourself. Take the anti sickness tablets and all the meds you need and rest as much as you can. You're going through a lot.

    Thinking of you. Xxxx

  • Hi Sarah, sorry to hear you are at a bad place at the moment & it's hard to imagine you will get through this but you will.

    After my surgery I started sicking from the moment they had stitched me up till a day before I left hospital. I went on to have an infection in my mental clips which ment 4 of them had gone inside me & had to go back to hospital were they had to cut them out of me. I was so ill I thought I was going to die right there & then but I am still here. So I know how you feel but please keep on you will get there. As for constipation I found the suppositories made it worse keep up with the movicol & see if a home made fruit smoothie might help. If things don't improve soon then contact the hospital where you had your surgery. I contacted my GP but still ended up at the hospital. Take care Cindyxx

  • Hi Sarah, your not on your own we have all been through this s..t time. I remember having a melt down just after my op looking at myself with no hair, eyebrows or eyelashes.

    But it will pass ever day your getting nearer to recovery and the sooner you've done with chemo you'll look back on this time and think I've done it.

    Sending hugs xxx

  • Oh I feel for you.

    Regarding the constipation, I was at my wits end, having tried everything, and then someone suggested sodium docusate, two tablets morning and evening.

    My doctor now prescribes them and they work.

    Ask your oncologist first and see if they are suitable and if so can he can get them prescribed for you .

    I do hope this helps.

    Xxxxxx

  • Hi Sarah, my heart goes out to you, it is awful to be sick and tired and constipated and one isnt helping the other. I hope at this stage there has been some movement and that will make you feel better, if not ring your CNs tommorow. If you can a bath with warm water and epsom salts will help or even a foot soak with epsom salts. Rub your tummy anti clockwise and hopefully you will be doing the poo dance soon

  • Sara, I am literally one week behind you. (Behind in time zone too as I am in San Francisco, Ca) I was diagnosed about a week behind you (otherwise healthy 45 year old with stomach distended and essentially an ER diagnosis). Began chemo a week behind you, surgery Jan 18 and start chemo up again this Friday. I felt compelled to write to you. I too feel so low, scared and in emotional and physical pain. I came across you first here and then found your fb blog when I came home from hospital. I read your journey beginning to end. I can say I feel less lonely due to you. I wasn't sure I I could keep reading at first because your early journey was full of healthy foods and working out and I was reading this post surgery. But saw your treatment and feelings mirrored exactly how I have been feeling every step in the way. In my mind, we are in this together. Please reach out any time. I can't take away the pain, but I promise you I can be a friend at the exact same point in treatment to remind you - you are not alone. As for the 💩, here is the secret to my success:

    Docusate sodium tablets 2x / day (need dr prescription)

    Senna laxatives 2 tablets nightly (dr ordered)

    1-2 cups of coffee in am

    1/2-1 banana in am

    The final element: squatty potty (sold via amazon). Sitting in the "propper position was game changer. (I used a small box first because I was so desperate)

    Please try it all together and don't stop once you go, I took a break while in hospital and was slow to get things going again. I need you to get well to make me feel better. C'mon, lets do it together.

    💜 anne aka Spencer 🐶

  • Anne, your message is a Godsend 🙏🏼 Here I am awake,almost midnight. Everyone else asleep, the loneliest time. I envy my husband his gentle snore as I know he has peace in sleeping.

    I am so touched you've read my journey & that it helped you. I found solace in writing it, but cannot bring myself to post right now when I feel so low. Maybe that is an error, that we hide the very worse bits we feel as yes, I was so proud to post when I was eating well & working out. Those days seem far behind me now.

    I have at least managed some movement today, albeit like little rocks & stomach is still uncomfortable but that could be surgery pain?

    I will speak to the Dr at my chemo session about the docusate sodium. Already have a stool which helps. Even drank orange juice today as was told that helps.

    I'm just finding everything hard at the moment. I suppose that happens when you're low?

    Thank you for writing it means a lot. For me at the minute it's just about getting through each day & praying for better times. Sending you a virtual hug across the pond, & hoping you have a good day today, & all the other ladies xxx❤️

  • Hi Sarah,

    I'm sorry to read you're having a rough time.

    If you think about how much you've endured this last few weeks and still here to tell the tale, you might see yourself as the true warrior you are.

    Do you have a Clinical Nurse you can talk to about the nausea and constipation? There are many options and combinations they can suggest. Perhaps they might delay Friday's chemo for a week when you feel stronger and more able to cope?

    Yes it is a very lonely and infuriating place to be at times. But you have friends here who have been through, or are going through the varying stages of this horrid and undignified disease.

    You will get control but in the meantime sleep and rest is what your body needs. After my op, I bought a new bed and had a spare room done up for my recovery. I slept with at least six pillows. That was last April. I still retire to 'my den' when I need to process some thoughts or write a post or two..

    Suzuki has recommended epsom salts for a bath or foot soak. I second that.

    Whatever helps or works for you.

    You'll get through this.

    Much love

    Debs xxx

  • I'm sorry to hear that Sarah, I hope you get to feeling better soon. I had my surgery like 3 weeks ago, and still having trouble with bleeding and diarrhea. I hope things go better for you soon, prayers and love sending your way❤️💕

  • And you give everyone hope, we look up to you❤️💕

  • ❤️ Ivster you're very sweet, thank you. It's such a horrible time isn't it. I hope you're feeling better. We WILL get through this I know, but that doesn't make it any easier does it xxx

  • Hi Sarah. I had rotten problems w. constipation. I began naively with fruit & senna. My innards responded with raucous laughter while I was getting in a worse pickle. I've also resorted to crouching on the bathroom tiles, but of course that's no good for haemorrhoids - I was getting one type of piles but not the type of pile & was after. There's an expression that involves ... Bricks". I got it worked out in the end (sorry, couldn't resist that one) : industrial strength chemo requires industrial strength laxative. You need to work out when to start, how much to take each day, how often, and for how long. I needed to keep it up for a week but can't think now how many doses per day. Good luck. Pauline

    PS Just thought - being in bed a lot, therefore not much movement, won't help. I think our systems need activity to get things moving.

  • O dear how awful you do get to rock bottom and begin to think I can't take this anymore how much can one person take there is always another symptom to cope with surely the camels back will break... but we dint break we sit a quiver sweating on the toilet as your world falls apart ..... your strength is low coupled with I dare not strain too much because of the stitches you feel helpless .... we follow our pathway of treatment focus on the regime and get through one day at a time .... oc tries to rob us of our sense of self worth drags you down till we look at our ravaged reflection and say surely that's not me... I'm changed and will never be the same but I fight everyday to get back my life I'm not finding it easy it's a slow process ... I guess slow and steady wins the race is my new way forward 🤗❤❤

  • You summed it up perfectly Shellygirl thank God I feel a teeny bit better today, especially on the 💩 front...am persisting with the Movicol but will ask for docusate sodium at tomorrow's chemo appt, am sure tablets will be easier to stomach. Xxx

  • I had those and they worked a treat .... bit too much really so keep an eye on things ... all best for tomorrow ❤🤗

  • I'm on them too and find that they are working and don't cause me any issues.

    I was told initially to take 1 am and pm but have upped to 1 also midday when needed.

    I was told I can take up to 5 a day.

    Hope hope HOPE they help

    Clare xx

  • The night thoughts and loneliness is the worst. If I had discovered this wonderful site before I would have gone there. Instead I wrote long emails to friends and family and got loving and supportive replies which I put in a special folder named "Love, Life, Links". I still do!Now it is several 100 long and I still go there when days ( And nights) get tough

    Meanwhile here are my practical go to tips which along the way I have worked out and which work for me, maybe some for you....

    DRINKS

    1. Water, water, water.....

    2. Warm GInger, lemon (and honey) if you need sweetness. First thing in the morning and in the middle of the night if necessary. Buy fresh root ginger, cut a few peeled slivers and cover with a little just off the boil water. Stir to release essence. Add some cold water then and 1 tsp lemon juice ( bottle is fine). Add more hot to drink it Luke warm. It is a very comforting and healthy-for-your- guts drink . Now I can't start the day without it

    3. decaffinated teas.

    4. Flat no sugar lemonade

    5. TWinings lemon and ginger tea ( good afternoon tea)

    6. Boost your Vit C intake with fizzy orange tablets dissolved in water, daily. ( supermarkets do their own cheaper versions just as good as Berocca)

    BOWELS

    1. Forget movicol. Go for full dosage of sodium docusate( cheap to buy in supermarket but doc will prescribe if you ask) . If you know you are going to have trouble start with these at LEAST a day ahead of next chemo. Always take them with full glass of water or other drink.

    2. I naturally learned to rock myself on the loo as poo-ing was exCRUCiating in the weeks after surgery. Yes a more squatting position - but you have to balance against the other type of piles as you say

    3. Last wipe of bum with a little Vaseline smeared on to help keep anal area soft, really clean and reduce after pain. I also use diprobase(?) emollient cream which I got from hospital , at nights.

    That's enough for now! Take care Janet x

  • What a Great and informative reply , lots of brilliant tips

    Clare 👏🏻❤️💐

  • You poor thing Sarah. I don't know about anyone else but I've been there too. It's hard for anyone else to understand what we're going through. It's just the way it is, nonetheless isolating.

    Being very anti drugs even before OC I researched a lot and found alternatives. Found juicing helped especially with bowels and with energy levels. Get someone to buy you a Nuitri bullet excellent for this with mainly organic veg and some fruit. Helpful websites are THE TRUTH ABOUT CANCER, CANCER ACTIVE and CANCER TUTOR for more info about thus.

    You are not alone.

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