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Bowel cancer, stoma care and the use of plant sterols

PeterPeter Posts: 24

I was diagnosed with Metastatic bowel cancer in August., 2017 and I am currently on my 19th session of chemotherapy. Doing OK on the chemo with not too many side effects. I also have a stoma as my bowel was blocked. This is working fine as well. I Al just getting on with my life. Love my holidays, keen on DIY, enjoy short walk and I am a volunteer with a local Friends group managing our village green.

My GP asks me, each year if I will go on Statins as my cholesterol is a bit high but my Oncology Consultant syas no. I have been advised to try plant sterols, which seem to work according to reports. Does anyone have any any know of any of their use, particularly with a stoma. Do they cause wind or loose output from the stoma which appears to be have happened in my case, although I have been fighting a winter cold bug and taking antibiotics.

Many thanks

Peter

Answers

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    Hi Peter, I am interested in your question too as I also have high cholesterol. I used to take plant sterol Margerines and drinks but stopped when I had my Tumour and part of the bowel removed in Dec 2018. I will be interested if you find an answer to this question. I am heartened that you are able to get on with enjoying your life despite the amount of chemo you have received. I hope that this will be my experience. I only had my 1st one last Friday. On Folfox via Picc Line and pump. Going ok so far but I know it’s very early days! I wish you all the best and keep enjoying your life. Regards Jackie

  • PeterPeter Posts: 24

    Jackie

    Thank you for your comments. I am also on Folfox via a PICC Line following my sessions at Preston Rosemere Cancer Centre. About to go on cycle 20 and beginning to slow down a bit but still getting on with life (off to Tenerife at the end of April). I think I will restart my Plant Sterols when my pump comes down at the weekend. Will keep you posted how I get on. Look after yourself.


    Peter

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    Thank you Peter, I hope you have a nice holiday and good luck with an answer to our question re. Plant Stanols. Take care. Regards Jackie

  • PeterPeter Posts: 24

    Hello everybody

    Sorry that I have been missing for quite some time but I have been trying to get on with my life and I have been very busy. Since early 2019, I have been to Tenerife and to Crete twice, although the second time was a disaster. My wife had a fall and fractured her pelvis in 3 places, so I was her full time carer. Not good when it's sunny outside but it had to be done.

    My colon cancer is sort of behaving and I have been on and off chemotherapy, although I have bee in limbo since the end of February but am now due to start a new session in a couple of weeks. I have completed 45 chemo sessions since I first started. Now beginning to catch up with me a bit. However, keeping plodding on. Just redecorating our kitchen and breakfast room after I carried out major changes to kitchen units in November and December. I am putting on 8 rolls of ceiling paper and 10 rolls of wallpaper - I have already lined the walls and repainted all the woodwork. Just completed the ceiling. In between I have replaced our garden fence and though about laying 72 flags at the side of the bungalow (thought better about that). We have also grown and nurtured 460 bedding plants for the garden and planted potatoes, peas, carrots tomatoes and cucumbers. We are also hoping to get back to Crete in September, Covid 19 permitting.

    Everything takes longer due to chemo, but it is not a bar to doing anything. It spurs me on to prove that I am able to face all the challenges head on. Life still goes on and so it should. It is now time for a nap (nothing to be ashamed of ) after all today's exertions. Everyone look after yourselves and take care.

    Peter

  • LouiseJLouiseJ Posts: 679 mod

    @Peter

    Hi Peter,

    It is good to hear from you, I have been thinking of you and your wife recently wondering how you are getting on.

    I am so sorry to hear of your wife's fall while you were away on holiday. That must have been a very stressful, worrying and upsetting time for you both. I hope she has made a good recovery from that.

    I remember that you were having regular chemotherapy, but also that you always have so many projects on the go in the house and garden! I don't know how you keep up with them all! You did inspire me to decorate this time a year ago actually, I did our outer kitchen, front porch and greenhouse (attached to the house). I am always astounded at how many bedding plants you raise! We have started a gardening thread, if you ever feel like having a read or post something there. We'd love to see what you have grown. 😀.

    I am so glad that you continue to live as well as you can regardless of what the cancer and treatment may be doing. It is very inspiring to hear you share your story with us.

    I am assuming you have had to be in self-isolation due to the current health crisis, I hope you are both managing to get everything you need. Yes, definitely, let's hope you will be able to return to Crete later in the year.

    Take care, have a great day,

    Chat soon,

    Lou x

  • PeterPeter Posts: 24

    Hi Louise


    Thanks for your comments. As you will appreciate, I believe in facing this disease and treatment head on and I hope that is holding me in good stead. It is not always easy as you know but you have to take the downs with the ups.

    I am about to start painting my kitchen ceiling, a job I absolutely love!!! but it needs to be done. We were also thinking about planting some of our bedding plants, but it is raining at present, good for the garden though. I like your idea about a gardening thread and I will try to see if I can post some pictures.

    Brenda, my wife, is having physio (currently suspended due to Covid 19) but is steadily improving. She is ready for our holiday an things seem a bit more hopeful in that regard.

    I am going back on chemotherapy next week, nice eh, so I will probably taking a few more naps but I hope to have our kitchen finished before then. Yes, we are both housebound, by order of Boris, but it means that more gets done at home.

    How are you getting on with, any plans for the summer. Hope you are keeping well. Will post an update on life in Grimsargh shortly.

    Take care, stay safe and love to all.

    Peter xx

  • LaraLara Posts: 3

    Hello.

    I am new to the site. My name is Lara, I am 35 years old, a mother to a gorgeous 2 year old, and in treatment for stage 3 colorectal cancer.

    I have been very lucky to have responded well to the chemoradiation, which reduced the size of my tumor. Three weeks ago I had my surgery which removed the cancer, but they found cancer cells in 6/11 lymph nodes. I am adapting to my temporary ileostomy, and expect a call any day to learn about my chemo plans, which will likely be 5FU and Folfox, and possibly last 6 months from what I understand.

    I have to say, it's been refreshing reading about you living life as normal while in treatment. I don't know yet when I will start chemo, but I would be lying if I said I wasn't scared. I feel like I have gotten lucky with treatment so far, and have gotten used to the feeling of recovering from each stage. But with 6 months of chemo coming up (hopefully not more), I can't help but feel fatigued at the thought of powering through while potentially feeling worse and worse, before I get better. I am very conscious that I am sounding quite negative here. I apologise. Naturally, I am actually a very positive minded person, and I do believe its played a large part in my response to date. But this new information of cancer in my lymph has really thrown me if I'm honest, and combined with Covid restrictions, I can't help but feel a bit overwhelmed right now.

    My approach so far, has been to eat healthy, exercise and practice positive mindfulness which has honestly helped me overcome thyroid disease successfully last year, and I believe will help me through this. I do feel though, that there are many roadblocks right now, with the quarantine limiting my exercise, no creche for my daughter, limiting the help I was receiving from family, and now with my ostomy, I can't eat fibre anymore (I eat plant based).

    Oh I am sorry for this essay, purging my stresses. It's just such a relief to find this thread and read people are doing well. I really hope I respond as well as you have. I have high hopes of setting up a business this year and hopefully offer something of value to others. It makes me feel stronger again for the future for this inspiration to get back on the horse. I really appreciate it :)

    I am currently researching sources to allow me to eat a healthy, nutritious plant-based diet, while maintaining my ostomy. If anyone had any advice it would be greatly appreciated.

    Thank you

  • PeterPeter Posts: 24

    Hi Lara

    Sorry about your diagnosis but please stay positive. I was originally diagnosed with Stage 4 colorectal cancer with secondaries on my liver and lungs. I also have to live with a stoma. About to start my 46th chemo session after having 3 months off, mainly because of Covid 19. I have the view that I need to carry on as normal as possible, apart from a few extra naps.

    I am a bit older than you but my family is also very important to me - I have 7 grandchildren and love them to pieces. So, I have a lot to live for.

    So it's on with painting my kitchen ceiling tomorrow prior to hanging wallpaper on the walls, plus a few naps on the way.

    Look after yourself, stay safe, well and positive.

    Peter x

  • LouiseJLouiseJ Posts: 679 mod

    @Lara

    Good morning, welcome to the community. I am so sorry to hear of your diagnosis, I honestly cannot imagine how you are managing with it with a young daughter to care for too. I am so glad you found us here, as @Peter has already shown you will find so much support and understanding here form others who have either a similar diagnosis, or even a different cancer but knowing how it impacts your life and the life of loved ones around you.

    Please do not apologise for writing how you are feeling, and it doesn't come across as negative either. I think from just reading your post you are doing amazingly brilliantly actually. I do believe you are right in how remaining positive (even with the dark days we all face) can have a marked difference on how we respond to treatment etc. Don't give up! I know you won't. 😊 Being told that the cancer has shown up in the lymph nodes is understandably terrifying. Already adding to the terror and fear of the initial diagnosis you may be experiencing. I was. But my cancer nurse (I had breast cancer) said to me, 'Let's hope they have done their job' meaning hoping they had stopped it spreading further, which surprised me, as I had never heard that before. I had always assumed that the lymph nodes were a gateway to the rest of the body and no defence. For me, they did do their job thankfully.

    Having something positive and inspiring to look forward to will I hope really help you through this next stage of treatment you will be having. Just know that we are here to listen whenever you feel like sharing your days with us, we will be supporting you and routing for you every step of the way. I mean that sincerely, it's not just a whimsical saying.

    Also I just wanted to say tomorrow evening Wednesday, there will be a Q&A with Liz our Oncology Specialist Nurse. If you had any questions or concerns she may be able to provide you some insight and answers. I will tag you in the discussion where you can find the information on it.

    I do hope you are managing well during the lockdown, even harder with a young child when you are not able to go out freely etc.

    Please keep in touch with how you are getting on. We have a lot of other chats going on, Cancer Coffee Break category, we chat about all sorts of things, unrelated to cancer. It is a good place to hang out, and chat , sometimes it is good to 'get away' from cancer talk. Feel free to join in with any conversation at any time, or start your own.

    I hope you have a good day,

    Chat soon,

    Lou x

  • LaraLara Posts: 3

    Hi @Peter and @LouiseJ

    Apologies for my late reply, and thank you so much for being so kind and supportive. This is really helping me a lot. I am in a much more positive frame of mind this last week. I will have my oncology consultation Wednesday to learn about what my treatment will look like, so for now I am doing all I can to stay healthy and positive. I have reached out to a very good nutritionist and she designed a meal plan for me to stay healthy while not aggravating my stoma. Just removing the weight of the research and decision making around food has been brilliant for me, and I am able to focus on other healthy habits like exercise and rest. I missed this talk Louise, as it it clashed with baby bedtime routine. But thank you so much letting me know about it. I'm scared to start this chemo, but also eager to finish it. Both come together, so I hope to start strong and fingers crossed finish it strong too.

    I hope you are both doing very well this week, and sending you positive thoughts. I can't express enough how much your replies cheered me up. Thank you again x


    Larragh

  • LouiseJLouiseJ Posts: 679 mod

    @Lara

    Hi Larragh,

    It is really good to hear from you. I am so pleased you have been able to get some help from a nutritionist who has designed a meal plan for you, I hope that is going much better for you now. Relieving the stress of that will help you, we have to do whatever we can to make this path easier to walk. No worries about the talk, it was postponed as Liz is working with patients in her job. It is now going to be this Wednesday. I realised the time may not work for you with little ones, but you can post a question before if that is easier, or anytime as well. You have enough to be dealing with, if anyone here can help you with information or advice or just to listen, that's what the community is about.

    I understand the fear surrounding chemo, we only ever hear about the horrors of it before our diagnosis. But they have made huge advancements over the years, you will be in good hands. If you are unsure about anything ask your chemo nurses, let them know of any side effects you have. Just take it one day at a time.

    I hope your oncology appointment goes well on Wednesday.

    Here for you anytime Larragh, hope you have a good night's rest,

    Chat soon,

    Lou xx

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