Been lurking

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Hello Everyone.
Thought it was about time to introduce myself after lurking here for a few weeks. I’m a 64 year old relatively fit woman; I was diagnosed with Stage 3 rectal cancer (a bit of a shock) on 22nd December 2020 after colonoscopy. The only symptoms I had was a bout of diarrhoea in June 2020 and another one in November, the first I put down to a bug the 2nd I thought I should get checked out. I’d had clear screening tests in 2017 & 2019. I had the colonoscopy in early December 2020 without sedation and was interested to watch on the screen. It was obvious that there was something there that shouldn’t be and the doctor told me there and then that it was a concern and after I dressed & he called my husband in, he said he thought it was cancer. CT and MRI scans were done within a week and showed no spread (so fingers crossed). I had an anterior resection in early January with 12 lymph nodes removed one of which showed invasion which was suspected before the op. I’ve had a few infections (UTIs, yeast, infection in drain wound and suspected blood clot) but I’ve recovered well.

I stated chemotherapy on 040321 – Folfox. It’s meant to be 6 cycles each cycle over a 2 week period, however the second cycle was delayed by 2 weeks as my neutrophils were too low. I’ve just had my 2nd chemotherapy (reduced to 80%) and am in the recovery part of the cycle.

I agree with what others have said that the waiting period is the worst part as your brain runs haywire, I tried to use that period to try and come to terms with things and consider what is important to me. Once there’s a plan in place things become easier to deal with. I think it’s important to try and be as fit as possible for the operation as that will really help your recovery but be prepared to feel very very weak and vulnerable afterwards, so just be kind to yourself, take one day at a time, don’t try to push yourself - give your body chance to help itself.

I’d decided even before the operation that I’d take anything offered including any chemotherapy, however, once I researched some of the side effects of Folfox I did have second thoughts and made myself a bit of a nuisance with the oncologist trying to get all the information I needed to make an informed decision. I was particularly concerned regarding peripheral neuropathy as I do a lot of intricate work with my fingers and also enjoy walking, gardening and other activities that need balance and I was concerned peripheral neuropathy could hugely impact my quality of life. However, once my oncologist understood my concerns he has been very helpful.

I think I’ve been extremely lucky so far in my chemotherapy, the first cycle I didn’t really suffer with any of the cold or tingling symptoms. The only ones I had was a bubbling feeling on my tongue when I had a first sip of a room temperature drink (a bit like the Polyjuice potion in Harry Potter if anyone has read the books/seen the films), slightly sore mouth for a couple of days and tender skin around my nails for a day and feeling very very tired and weary. I rub hand cream on at least 10 times a day and massage my hands and that helps a lot. I also felt very zoned out for a few days after the chemotherapy and suffer from brain fog.

Since the 2nd cycle I’ve felt slightly more nauseous, had tingling of fingers 2 or 3 times for no more than around 30 seconds and again felt very, very tired and weary and pretty much zoned out for the 3 to 5 day of cycle and the brain fog is still there. I guess it may well get worse cumulatively as the cycles progress. I’m trying to stay positive and I believe that really helps (sometimes easier said than done) and take one day at a time.

My biggest problem at the moment is my ileostomy bags leaking. I use a one piece drainable convex bag and once swopping to these I did not have issues with leaking for the first 8 weeks I was home. However, since then there’s been no end of problems, even after trying different bags etc – it’s extremely frustrating to say the least and really disrupts my sleep, but I guess things could be worse.

My thoughts are with everyone in a similar situation or with loved ones in a similar situation and I hope I can give some help/reassurance/support to anyone else going through this. I’m very conscious that I’m lucky in that I have a great husband and grown-up son looking after me at home, and support from my wonderful daughter & relatives on the phone/email/zoom, but appreciate not everyone has this support in place, particularly in this Covid era.

  • Hi 

    So glad you decided to join in . What a fantastic and informative first post ! 
    I hope you will stay and contribute as your information would be really valuable for others to draw from .

    I see you have a dose reduction and hope that resolves your issues and gives you a clear run at chemo . It’s powerful stuff but with my mum it did take a few cycles to find the balance for her .

    Take care ,

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Hi and a warm welcome to the board from me. Thankyou for sharing such a positive post - it will be a great help to many people on here I’m sure.

    With regards to the bag leaking, have you remeasured your stoma lately? It shrinks quite significantly over the first few weeks. I used to get my stoma nurse to cut a new bag for me then use the plastic pull off bit as a template. I must admit I’ve never used a convex bag so my experience is limited but I can imagine how frustrating it must be to have suddenly changed like this. The only time I had a leak was when I’d used some of the powder and the bag didn’t stick too well. Please don’t suffer with it though. Arrange an appointment with your stoma nurse or maybe your supplier has a helpline that you can ring?

    Hope you continue to tolerate the chemo well

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Net77,

    On the stoma leaking, was a convex bag suggested for a particular reason such as your stoma not protruding far enough, an uneven area around the stoma or a hernia? I believe they are supposed to give extra pressure around the stoma and give a better seal but they didn't work for me. Also do you clean the parastomal area with anything other than water that might prevent a good adhesion?

    I had an ileostomy for a year and had an uneven area due to a slight separation of the stoma with the skin. I also had a hernia. I used Salts BE bags with a wafer seal from Coloplast that you could form around the stoma. I also used Stocare Protect spray all the time. It is a barrier spray for the skin and also helps the next layer to stick better. I still got some leakage just around the stoma but not to the outside.

    If you don't use anything like this and want to try it your stoma nurse may have samples or she can put it on your prescription.

    Best of luck with the rest of the chemo, I had four cycles of Capox so can empathise with you, and I hope you manage to sort out the bag.

    All the best, John

  • Hi, 

    Welcome to the site, sorry to hear you are having trouble with leakage from your stoma.

     I also have an ileostomy and have suffered a few leaks mainly at night. I find this happens when my output becomes thick and I get what they call pancaking.  I got some little sachets of gel from my stoma  nurse to put in the pouch and she also suggested a few drops of baby oil to make the output slide down. I also use a barrier wipe and warm the seal on the pouch before I apply it. It makes for a firm stick.  We had a great gentleman that used to give me advice and he suggested warming the bag in your underarm!


    We are also entitled to 6 pairs of ostomy underwear a year on prescription with a little pocket to tuck the pouch in. I did get these  but goodness are they large! I will wear them if I am going outJoysomewhere for a whole day maybe as they do feel quite safe. They probably will be better with dresses as they show above the waistline on jeans or leggings. JoyJoy

    I hope your treatment goes well and you get minimal side effects. This site is great, I have had so much support and advice and there are some wonderfully kind people on here that have helped me so much.

    Take care and keep safe xxx

    Phoebeb21
  • Hi Court.  Thank you so much for your warm welcome and kind words.  I‘ve read your story regarding your Mum, it sounds like you’ve both been through the wringer over the years, what an amazing, brave, inspirational lady she is!

    I’m looking forward to getting to know you all on the forum and gain from your experiences and hopefully be able to contribute and help others too.

    Best wishes to you and your Mum.

  • Hi Kareno62. Many thanks for your warm welcome and kind words, it’s good to be here.


    Thank you for your advice re leaking bags. I regularly check my stoma and it hasn’t changed size over the last 9 weeks so I don’t think it’s that. I do quite a lot of research and although I’ve tried many options nothing seems to have solved the problem - yet. I have been in fairly regular touch with the stoma nurses but as yet none of us have managed to solve the problem. However, I’m sure there’s a solution out there somewhere – it’s just finding it.

    I’ve read your backstory – what a journey. I feel I’ve had it relatively easy so far compared to so many people.

    Take Care & Best Wishes

  • Hi John.

    Thank you so much for this very useful information. Yes, every flat bag leaked with me on first use so the stoma nurses though I’d be better off with a convex plus a belt - unfortunately I don’t have the flat tummy after 2 caesareans and other surgery. The convex bag also put extra pressure around the stoma to make it ‘pop’ out more – they worked very well for me for the first 8 weeks after surgery but the problems started after that. I’ve always only used water to clean the area after the adhesive remover spray.


    I’ve been using Coloplast Sensura Mio Convex (both light and deep convex) and am presently trailing Dansac (but they are leaking too). I have requested some Salts BE Convex and Confidence Convex Supersoft but I need to get a belt before I give them a trial.


    Is the wafer seal you mentioned a separate seal/collar that goes between the skin and the bag? I have just started using a barrier spray (Brava from Coloplast) as it was difficult getting authorisation for it even though it’s documented I have sensitive skin. I’ll see how this goes but may request to try the one you’ve recommended.
    Thank you for your good wishes I’m sure it’ll all sort itself out at some point.

    I’ve read your backstory and as I’ve said before, I feel I’ve had it relatively easy so far compared to so many people. I’m so pleased to hear your colonoscopy, blood tests and CT scan show all clear.


    Best Wishes & stay safe & well.

  • Hi phoebeb21.

    Thank you so much for your welcome, good wishes and the information you’ve given. I do think the problem might be pancaking and have been using a lubricating oil for the pouches to see if that helps, but the main problem is at night when it won’t slide down with gravity as I’m lying down. My stoma is quite high and is on a level with my waist which of course is where the most bending and creasing takes place which isn’t helping. I’ll definitely try warming the bags beforehand although I have tried warming them with a hairdryer after application as one of the stoma nurses suggested.


    Thank you for the ‘heads up’ re ostomy underwear – so much to learn, I’ll look into this.


    The people on the website are amazing it’s so good to be able to vent my frustration and you’ll understand because you’ve been there.

    I’ve also read your backstory, what a journey you’ve been on. Again, I fell I’ve had it relatively easy up to now compared to so many of you wonderful inspirational people. It must have been a very difficult time for you back in early 2020 being diagnosed and losing your Dad close together. I’m pleased you had your lovely husband and daughter looking after you so well after your surgery back in April 2020. I too am lucky enough to have a great husband looking after me and my son has been living back home with us since just after Covid struck – I’m sure it makes a huge difference having these people around us on a daily basis.


    I hope you’re continuing to feel as good as you were in Jan 2021.
    Take care & very best wishes.

  • Hi Net 77

    The seals were Brava Protective seals by Coloplast, they are sticky on both sides and you can mould them to the shape of your stoma. I was using the 2,5 mm thick ones. If you search for them on the net you can see what they look like. Whether they work well with the convex ones I don't know but could be worth a try.

    All the best

    John

  • Hi John.

    Thanks for this, definitely worth a try!  Will report back at some point.

    Best Wishes