Living with a stoma

[Stepdancer]

Stoma I have been told my debulking surgery I will lose my bowel has any one else going through this and living with a stoma and how bad is it to live with.

[BanksiaRose]

Hi. I have a permanent ileostomy following debulking in 2018. It does take a bit of getting used to but I had great support from stoma nurses and dietitian whilst recovering from surgery and after discharge. If you treat it as a friend you’ll get along just fine. Now I eat much the same as I did pre stoma but remember to chew food well. I wear the same clothes as before. Support underwear is available on prescription in UK. I hope this helps, but feel free to ask any questions. Best wishes, Sandy

[Stepdancer in reply to BanksiaRose]

Thank you Sandy for your reply I find it very hard to except that I will have to have a colostomy after my debulking to remove everything that is cancerous hopefully I will be able to come to terms with it if I want to go on and have some life and learn to live with it.

[Northenlights]

Hello sorry your faced with this another cancer moutian to climb. I was told when I had a reacurrnce of Ovarian cancer on my bowel that I would have a stoma. Prepared for it and went though some hard times coming to terms with it, my husband struggled, but got support from a lovely friend who had, had her stoma for a number of years. It is a loss I let myself be sad and angry etc.. I didn't have a stoma my surgeon managed to remove the mass without giving me a stoma. Not sure this is helpful 🤔but I find not feeling alone on your journey is so important good luck and best wishes 😊

[Stepdancer in reply to Northenlights]

Thank you I do believe that I will lose my bowel the surgeon said that there is cancer on the lower bowel as well as the liver and spleen which the spleen has to go and a full Hesterectomy so thank you for your good wishes.

[Neona]

I have had an iliostomy since my surgery in 2016. It is supposed to be temporary but there doesn’t seem to be any possiblilty of reversal any time soon. After initial restrictions on food I eat just about everything except whole mushrooms, sweetcorn and coconut. Changing the bag was a nightmare at first but is now a doddle. I probably prefer to stay home more now near the loo but have been on holidays, a cruise and shopping etc is ok. A stoma also has advantages as bouts of tummy troubles aren’t too much of a problem and constipation helps. Need to watch out for dehydration though. I hVe weekly iv infusions of magnesium and fluids- don’t know if would still need this if didn’t have stoma but suspect stoma is the culprit.

[Stepdancer in reply to Neona]

Thank you I hope I don't have to have magnesium as I believe it takes a long time to go through and I find it hard sitting Al that time.

[Tulips66 in reply to Neona]

Hi Neona, I read your reply to stepdancer the other day & you said you can eat nearly everything except mushrooms & corn & I have read that they can cause blockages but I have eaten both since my op with no problems but I wanted to ask you do you eat greens like broccoli, peas ,cabbage or what about onions & if you do , do they cause you any problems eg. diarrhea , odour ? I have been too nervous to try them & miss having them so interested to get your input please X🌸mag

[Neona in reply to Tulips66]

Yes I eat all greens and onions. Only avoid whole mushrooms and sweetcorn because I read that they don’t change in the gut so assume that if you get a blockage it won’t clear. However I do nibble mushrooms and eat mushroom soup. I have never actually had a problem with any of it. I love Christmas pudding and mince pies but seem to feel poorly if do more than nibble at them- in my own mind? Not sure!

[Tulips66 in reply to Neona]

Thanks Neona, I will experiment with a few more veg & see how I get on & hopefully they won't cause me any trouble 😜I hope you are keeping well especially during this pandemic, I think we are heading for stricter restrictions here this evening as cases are unfortunately climbing. Take care & thanks again 🌸 X

[Jonich]

Hi I’ve had a colostomy since my debaulking surgery about three years ago. It is tough and different but it does get easier with support. There is a fairly new stoma support group set up by Ovacome which I think you may find helpful full of people who have been through your situation

[Stepdancer in reply to Jonich]

Thank you for that I think it would help.

[Tulips66]

Hi, I was told I would probably wake up after my op with a stoma & I had a few weeks to get my head around the news. I knew they wouldn't know for sure until they operated & I understood that they would do everything possible to avoid me having one but if it meant it was going to save my life I knew I would cope. I do have one & I won't lie I was very sick after the op due to the bowel taking it's time to start working again but eventually after going backwards several times I got home. It did take a few weeks to get used to the stoma & to learn how to change it. I did have a few accidents in the beginning but eventually I got the hang of it & you will too. I found the one piece drainable bags to be the best & now I never have any accidents. Your stoma nurse will give you all the advice & help you need. Have you been told you will definitely have one & will it be permanent ? I just found out in May that mine can be reversed in time but they won't do it till I have completely recovered. Your diet will change a bit too but you will eventually get used to what food suits you or what foods to avoid. Try not to worry too much, having a stoma is not as bad as you think & in 6 months time you will be wondering what you were worrying about. I wish you all the best with the op & if you have any questions after it just ask I will be happy to help. Will be thinking of you 🌸X

[Stepdancer in reply to Tulips66]

Thank you for letting me know I am really worried about this,the surgeon said I will lose my bowel so I have to come to terms with it I hope I can have some quality of life after, its very daunting for me to have to face such major surgery at my age of 79 I hope I can cope with life after this.

[Tulips66 in reply to Stepdancer]

Aw I can totally understand how worried you are, I have been there but promise yourself you are going to stay positive . There was a lady on my ward who was in her early 70's & who also had a stoma & she was so good at changing it she was giving me tips ( I was 53) , so you will learn to manage it too with the help of the nurses. Just concentrate first on looking after yourself between now & your op & then on your recovery. You will also probably have a stoma nurse come out to your home afterwards so if you have any concerns she will help. I will be thinking of you on the 2nd Nov & please let me know how you are, as soon as you are well enough to. All the best Xx🌸Mag

[Stepdancer in reply to Tulips66]

Thank you Mag this is helpful to know and good to know there will be help out there if I need it thank you for thinking of me on 2nd November.

[MH500]

I had a colostomy as a result of frontline debulking 4 years ago. I was devastated at the time but I can honestly say that I’ve got used to it and it doesn’t really affect my life now. I do everything that I did before. I feel that it saved my life so I’m pretty grateful for it really

Good luck

Marian xx

[Stepdancer in reply to MH500]

Thank you Marian that's a really positive response and gives me hope that things will get better for me please think of me on 2nd of November as I under go a long surgery of four to seven hours and hope I pull through at my age of 79 although I don't look my age it is still my chronological age.

[JackyYorke]

Hi,

I've had a stoma since my operation nearly two years ago. There are many thousands of us and there are good support systems in place. I found the best place for advice was the Colostomy UK Support Group on Facebook. It's a very active group and has certainly made my life easier. I hope everything goes well for you xx

[Mumsie13]

I had a stoma after surgery about 3 years ago. After a bowel resection I got an infection and the resection failed. "Sid" stoma was formed. I did not want a stoma at all but now I am really thankful as it saved my life. Yes there is life after a stoma - just a little reorganisation and planning but I found I could do most things I did before. Just make sure you support your stoma well. Your stoma nurse should give you advice on this. Unfortunately, with 3 surgical incisions I developed a parastomal hernia. It mostly doesn't bother me, just keeping an eye on it at the moment. Maybe not the best thing to hear but forewarned...........Thing is, it is doable - more than doable. I have come to regard my stoma as a friend as I was told it was unlikely to be reversed. I should also confirm that Colostomy UK is a very good support group. As well as having a Facebook group, they produce a free magazine - it's also on line. Also there are some good stoma suppliers out their (if you don't order through your GP) who offer advice and support. I find my GP practice doesn't know a lot about stomas and products so this can be helpful. Your stoma nurse should go through this with you and offer appropriate advice. Most of all take good care of yourself, be kind to yourself and focus on as many positives as possible although I know it probably seems hard at the moment. I sincerely hope all goes well for you. 🤗 Jackie