I have been told since Easter that the nasty pelvic tumour which had broken into my rectum could not be removed . We had put all our hope into the gemcitibane /cisplatin shrinking the thing , but everything else has shrunk , or is stable ...but for the THING !!!!
I have awful loo problems , dreadful rectal pain , stuff yo wouldn't wish on your worst enemy ....ten days ago a plan was established for a stoma and three weeks of radiotherapy to try and shrink the tumour ....within 24 hrs that had changed again : top surgeon ( Gynae not colo rectal ) had seen CT scans and thought that he could do stoma and get tumour out !
It is not going to be easy but I m booked in on 29th August and am waiting for pre med meeting . I have already had a stoma talk and looked at stuff on line .....I am made of stern stuff as you know , but THIS is really shredding me .
I would be grateful for any advice , re can I shower , bathe , what clothes do I need ....It will be a big zipper cut again right through from under ribs to pelvis , three days minimum in intensive care , five days of IV anti biotics ( we know I have infection ......)
eventually stoma team at home , district nurse , private nurse if needs be ...will join Colostomy group locally ....what else can I do to get ahead , take control , eat ?
Yup , scared and worried , that's me now . It had to happen after seven years , six lots of chemo , a trial drug , that I am losing my nerve !
Help please xxxx
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angeladale
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Having a stoma is nothing to worry about. They are moving your bum to your tum so all it means is you can see where the pooh comes out. It’s clean and neat. When you go to have the stoma meeting they will mark a spot where it will be sited. So where something you wear often. So it doesn’t interfere with your waistbands. Jeans/leggings/trousers.
Bags are disposable. So I take mine off to shower and replace with a clean one after. It’s nothing horrible.
Mine is the same pattern as before the bag. I go in the morning. You will need a low fibre diet and things like sweet corn don’t break down and peanuts too so best avoided
A kit in your handbag which includes mini nappy bag type black bags/spare bags/seal spray and wipes. Mine squashes into a little make up bag. A radar key.
I wear lots of patterns so you can’t see the outline and support knickers to avoid a hernia.
Oh , thank you so much , that's such a help already ! Really practical information is what I need .....I am not squeamish , but about this , I do seem to be . I shall take up all your suggestions . I have been on low residual regime since easter and I really miss sweetcorn chowder , boo hoo ....peanuts not a bother xxxx
Ah , a new make up bag for the bits and shower before changing everything ? Brill , you are a star xx
Hi Angeladale,sorry to hear you need more surgery but Lily Anne has given you a lot of information, You need to hear it from a patient perspective as well as medical and you have a lot of information there now to gleam. I wish you well with the surgery and although its daunting you will be fine. Could I add perhaps a few nighties going into hospital instead of pjs as its more convenient post surgery
Hi Angela I too woke up with a colostomy and it’s honestly not too bad!
Like Lily Anne I carry a couple of spares and a pack of fragrance free baby wipes wherever I go! There is often not a sink in public toilets they tend to be outside the loo, hence the need for wet wipes.
Diet wise I have eaten peanuts in moderation as I love them but I’ve found peppers (red,yello,green etc) really give me wind and on a couple of occasions I’ve woken to a stoma bag not dissimilar to a hot air balloon and I’ve been surprised I’ve not ended up floating near the ceiling lol!
What suits one person can be a wind creator for others so it’s a matter of trial and error x I basically eat what I did before with a few minor adjustments.if you love sweet corn, try liquidising it to a purée.
My stoma nurse is amazing and gave me a lot of support. Ordering new supplies is a breeze just an e mail and everything is delivered to your door
As far as clothes go I wear loose tops over my jeans and leggings and I’ve not had any issues.
The worse aspect for me is what I call my stoma trumps, you have no warning they’re going to happen so can be a bit embarrassing especially in work!!
I’m sure a stoma will be so much easier for you and with your rectal tumour I can’t imagine the nightmares you’ve had so it should ease things a lot xx
I will pm you a list of foods etc I was given that I’ve found useful xx
Best of luck for next week and if you want any more advice just shout
I have just read about ballooning , pancakingand .... wind !!
I am wide shouldered and short bodied so tend to have lots of floppy tops : waistbands on jeans ? all my leggings etc tend to be fitted , I guess i will have to wait and see . I am in so much pain anything must be better !
I would appreciate the food list ....in fact , I appreciate all help for the first time . I am very good at giving help but this is a big first !
The stoma nurse will mark both sides of your tummy with an X in the place you feel will be most comfortable to change bags and manage your clothes. I still wear my jeans and leggings without problems as my stoma bag just about comes under the waistband x
Colostomies are generally placed on the left side of your tummy and ileostomies on the right. I have a colostomy not sure if they’ve told you what there aim is for you?
Peppers! I forgot. Can’t have even a tiny amount without awful stomach cramps. Funny you have wind with them. Do you have the same with chillies? As same family but don’t seem to get me
No I can have chilli as long as things aren’t too spicy lol I’m a bit of a chilli wimp but that’s just taste x I certainly don’t get the hot air balloon effect 😂
Are you having a colostomy or an ileostomy? I’ve the latter but think the former easier to deal with as the faecal matter more solid and less frequent and fewer issues with blockages and dehydration. I haven’t found having a stoma too difficult ( to extent I’ve opted to keep it instead of more surgery-scared of anypne nessing about in my insides- mine was unplanned ( god knows why as I’d huge ovarian mass and 35yrs of endometriosis ) so not best sited but I manage to cover it with loose dresses and tops and big pants! I carry spares in a small bag , including knickers and make use of my radar key as more space to empty bag if out- I bathe with bag on then change after bath though you can just let them dry - I was told to change every few days but I tend to change daily in warm weather as the sticky stuff can breakdown with sweat and heat - i think if it’s a colostomy you just change bag after a movement if you use a closed bag or empty if you use open end bag - if it’s ileostomy you are going most of time so you just empty bag as you go - it really isn’t as bad as I’d imagined and doable x
Gosh , you've been through the Mill ! It is the practical stuff that I need so much , and you have really reinforced what i am only just beginning to understand .....
thank you so much for your good luck message too .....of course until I come round , I wont know what bits and pieces I will have .....hey ho .....
My best tip is see it as your friend - It is as it is, so it’s better to accept things and get on with living -i even gave mine a name ( apparently this is common even though stoma nurse looked at me like I was mad ) and I have conversations with it - it has made it all so much easier and now changing and emptying it is just something to add to my routine.
Diet wise I pretty much eat what I like ( my local stoma nurse said to try and see and not to be afraid of food) just chewing more when I remember and plenty of fluids x
Ok ,I need a name ....stoma nurse said this is your new, best friend so you must have a name ....proper food won't happen for three weeks ? I have lost all interest in food and cooking , both of which had been my joy ....hope it all comes back X 🤗 thank you again xc
Will be thinking of you on 29th. At least you’ve got time to do your research and have good advice from ladies here who already have one. Disadvantage of having the time is I suppose more time to worry about it rather than just waking up with one.
You’re a real trouper and after seven years you’ll definitely get to grips with this.
Just want to wish you good luck, Angela. You're really having an awful time, you poor Love. I can't speak from experience but hope all the advice from the ladies who have 'bags' has given you more confidence. I was marked up for both , either colostomy or ileostomy, before my debulking and was horrified. Thankfully, neither was needed in the end.
Thinking of you with crossed fingers. 🤞 Love and a hug, Solange😊💐
Good luck for the 29th Angela and hope the galloping fever is subsiding. The answers to your post have helped some of my queries. I'm convinced I'll be having a colostomy at some stage. Xx
Sending hugs 🤗 and Hope the surgery goes well Angela. Can’t help much with advice just to say my sister (74) has had one for 8years and eats and drinks pretty much everything. Will be thinking of you 💐💐 jennyx
I hope you are now sorted innhospital. I have a colostomy after a bowel perforation following chemo number 2. I was horrified , no time to prepare, but it saved my life. I couldn’t look at it for the first week in hospital but then decided I needed to pull myself together and deal with it. The reality is much easier than the thought. Mine doesn’t stop me doing anything, I go swimming, wear fitted trousers still (white shorts in fact!!!!!) I do stay away from peas, beans, sweetcorn and nuts but otherwise it’s fine. I like others have put off having mine reversed as I don’t fancy more surgery. All my previous stomach pains gone and hours sitting on the toilet so for me it’s a winner. I wish you the very best of luck with your op. Diane
Woke up from my op expecting a stoma, but because the cancer had spread from the ovary and covered the outside of the bowel it wasn't needed. I was very happy about that.
You're being incredibly brave about this. I think mental control is essential to our wellbeing.
Sending you my very best wishes and positive vibes.
Hi Angela hope you are feeling better and with all the good advise are ready for the op. It sounds as though you will be far more comfortable once it's done. Lots of love to you Bridie
Oh, and just to cheer you up, I've just looked at my calendar and you're having your op on the same day as Rufus has his, the big snip. Has to be a good omen.
Hi I’m thinking of you. You sound like your team have this sorted.
I used to work on icu 15 yrs ago and a stoma is very straight forward to these nurses and I can honestly say you will be in great hands and more often than not icu nurses have there own patient x
Angela, you are brave beyond words and you have already done a lot of preparation & information collecting. I can’t help with specifics but I am rooting for you along this new path. Linda 🔆🌻🌼🔆🌼🌻🔆
I'm glad that an operation is possible for you, Angela, even if it comes at a cost (stoma). Hopefully the surgery will resolve a number of current bowel issues. That all said, I'd be frightened too, to start with.
Just came back from lunch where I spoke with a colon cancer patient, who has two stomas. She said she was so horrified after the surgery, she could not look at it at all for several days. Now, it's simple routine and doesn't bother her too much. Her advice was to take some time and try out the various stoma supply products until you find a set that works well for you. She did say that she avoids being outside in excessive heat and/or sweating for too long, as that could cause trouble with the adhesive (if I understood that correctly??).
Good luck and here's to an end to the pain you've endured over the past weeks. Hugs. Maus
My stoma was a complete shock and I had not had any tuition before my op. As soon as I was up I was able to deal with it myself. When I went home the stoma nurse came to my house to help me a couple of times. I had trouble with sore skin initially but a change of bag type cured this. Sometimes I take citirizine as the glue causes some itching. Even though mine is reversible there doesn't seem any chance of it being reversed and I suppose I have got used to it. I do wear looser clothes for comfort but can wear most things that I wore before other than my close fitting evening dress. Wishing you the very best of luck for your op, Wendy
To begin with I avoided all the foods mentioned by the nurse- now I eat everything except mushrooms, sweetcorn and coconut which apparently don't digest so can cause a blockage. You can shower as normal and use a paper towel to dry the bag - it dries surprisingly quickly.
You are being very brave about what is going to happen.
I had a stoma four years ago and found it easy to cope with. However I was too scared to fly. Sometimes it filled up quickly and I wouldn’t have liked the queue for loo.
I was able to wear all my clothes. Also ate most things but steered clear of sweet corn.
I had mine for seven months and couldn’t wait to have the reversal op. All went well.
A few years ago I was carer for a gentleman in his eighties who was a lifelong alcoholic and lived almost entirely on bottles of gin, packets of Quavers, and peanuts. After a bowel cancer diagnosis, the medics decided on a stoma. Myself and the other carers were a bit horrified as he spent a lot of time alone, and we thought he was too frail, wobbly etc and would never cope. To our astonishment he was perfectly fine! I remember a couple of 'sore skin' days, which is common due to the adhesive sticky, and one episode of 'poohgate' due to going a bit too mad with the gin and peanut diet (!) but otherwise no problems. If he could do it I know a strong sensible woman like yourself will be fine! The only other thing which might be worth a mention is that the bags come in various styles/sizes - I think there were some adjustments in whatever had been ordered originally to a different one he could manage a bit better.
That's quite funny !in a sad way .....thank you so much for taking the time to share this and to make the point you are making . I really appreciate it .XX.
I have two stomas due to OC one for poo and one for pee since 2004 and2007 respectively.Every thing fine for first few years despite thinking the worst.It just means planning journeys etc ,big pants and looser tops.I have experienced problems in recent years with blockages but that has mostly meant adapting diet.We are all different so can only give general advice.Stoma nurses are very good for advice and have usually been able to help even with a phone call.Good luck.
Oh Viv , you are amazing ! It seems like a lot of organisation ,I cannot imagine how you have managed all these years . Clearly you have and thank you so much for bothering to share XX If you can , I can ......thank you again for support x
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