Stoma

Hello Blue1959

A warm welcome to the forum that members would rather not have to join;  I am so sorry to hear of your diagnosis and can completely understand why you are feeling so nervous about what lies ahead.  Whilst I don't have experience of having a stoma, there are quite a number who have and I have flagged up a couple that immediately spring to mind Dizzy1968 and MrsKS  (hope you don't mind, ladies).  If you search back you can read their posts and experiences and I am sure you will find the information on there useful.

And we are always here to offer support should you need it; a cancer diagnosis is such a major event in your life, so please remember you are not alone.

Big hug.

Irene xx

Hi Blue,

I'm so sorry you've received this tough news and are facing down this situation. No one wants to be here.

But I'm very glad you've found this forum before it all hits, as it's such a supportive and helpful place to be if you need it.

I'm almost 2 years past my cancer treatment, which did not include a stoma. But my best friend has one, from ulcerative colitis, and she's a powerhouse. It doesn't slow her down one bit. She says it took her a month or two to get used to it, a little longer to figure out which foods really don't agree with it (and she can plough through a cheeseburger like nobody's business for a skinny little gal), and swims and hikes and has lots of sex with no issues at all.

You can do this.

Get this awful cancer out of you and go on with your life.

Keep us posted!

Hugs

Suz

Hi Blue1959 ,

Welcome to the Macmillan online community although I’m really sorry to hear of your recent diagnosis. We’ve quite a few members here that have had temporary or permanent stomas prior to treatment for anal cancer so hopefully someone will be along soon to ease you worries a little ahead of your surgery on Thursday. Failing this we have a specific group on the site  Ileostomy, colostomy and stoma support if you click on this link you can join that forum as you have done here & pop your post on there also, there will be lots of support & advice there too. I hope all goes well for you on Thursday & remember we’re here to support you however we can. 

Nicola 

Hi Everyone 

thank you all so much for your comments I really appreciate it xx

Hi Blue1959, 

when I was told I needed a stoma, I totally refused the McMillan nurse phoned me and explained the reason why need one which was because my tumour was big and I couldn’t go to the toilet  and that it would be much better for me while going through treatment as it could be very painful, I reluctantly said ok, I was so frightened I didn’t know what to expect. 

I had the stoma done and I was petrified of it I couldn’t look at it and the thought of touching it, I had the stoma nurse come while I was in hospital to help me, I was really  tearful , anyway I was basically told I need to start learning to look after it as I couldn’t go home until they was happy that I could look after it. 

I just wanted to go home so pulled my big girls knickers up and started changing it, I discharged myself after the 5th day of being in hospital, my husband was so good when I got home he came in the bathroom helped me got all the stuff together and helped me clean and change it. It took me about 2 weeks to get the hang of it but after that it was fine. And I must say it was a big relief that I was able to have a poo without any problems. I have had years of bowel issues and having the stoma just took all that away. 

I have a removal spray to remove the bag I use sensitive baby wipes to clean the area and I had  a barrier spray, to put on before you put the bag back on and I also had a stoma powder that I use to put on as sometimes it got a little sore not sure why I suppose my skin just needed time to ajust but the stoma powder is brilliant I use it for everything now, I even used it for the sore I got on my bum from the radiotherapy and the sore cleared within days I brought it from Amazon. 

Iv been to see my colorectal surgeon in November to talk about a reversal I had a sigmoidscope and they found some lumps so took biopsies, luckily the biopsies come back clear but the lumps are scar tissue but they are big which is causing a stricture and so I now have a stoma for life and to be honest it was the best thing Iv had done, Iv had no issues with it and I feel it has given me a better quality of life.  The only problem I do have is I now have a parastomal hernia. 
once you have had your stoma done find some support knickers, I was not told this and ended up with the hernia now. 

I have a colostomy so I poo normally I can eat anything it doesn’t effect it at all, I still get a little constipated at times but I still take oramorph for pain, which can coarse constipation  also still have pain due to radiotherapy and when I release mucus from my bum it seems to irradiate it and can be painful. 

Nearly forgot to say your stoma will also make farting noises when you least expect it to lol even now 2 years after if I’m sitting on the loo and it decides to fart it makes me jump!! 

I hope this has helped you in some way and good luck, please if you have any questions please just asked 

Laura and ( Dirty Girty  ) my Stoma yes iv given her a name haha x x 

Hi Dizzy

Thank you so much for all the information I feel so much better about the operation now and you have given me such a laugh. Good to know about the stoma powder that sounds like a must have so will get some. Thank you so much for all the information it does help to know. Pleased your biopsies have come back all clear that’s great news love the idea that you have named your stoma I suppose it’s just something we have to learn to live with I was like you even looking at the pictures of the stoma I did not like but I will just have to learn and get on with it as I hate staying in hospital.

Thanks again xx

Blue1959, 

I think you heal better at home and I found by being at home your able to take your time and get use to it, what type of stoma are you having? 

Laura x x

Blue1959 

When I first had my stoma they gave me a little sample of the powder and I use to clean around it dry the area and put the stoma powder around it where the stitches was It definitely helped to heal it quick, but also I then started my treatment  and so I was bathing in Epsom salt baths every morning before going to the hospital for radiotherapy and I think that also helped heal the area where the stitches was. 

And I bath and shower without my stoma bag on. 

Laura  x x

Hi Blue1959 

I hope your surgery goes well and you will soon be on the road to recovery. I have an end colostomy, ie it’s permanent and can never be reversed and had my surgery for a different cancer almost 4 years ago now.

I did see some pictures of stomas in advance, and my stoma looks nothing like what I saw! I also have a urostomy because I had to have my bladder removed, and again it looks nothing like any pictures I have seen! Both of my stomas are much neater and nicer in my opinion! 

I don’t use stoma powder at all, as I find it very difficult to get on with, but these products are all provided free on prescription for you so there’s no need to buy in advance. I tried it for about a week, but found it made things worse for me so abandoned it.

 It’s best to try things out before you make a firm decision on what you need as things can change after your stoma settles down and heals. It’s definitely different for everyone. 

Sarah xx

Hi, i had the same back in April, there is lots of help out there its gona be diffrent but you'll get trough it, i joined a fitness class specifically for ostomates and that helped build confidence and i contacted other people to learn about stuff. Good luck if i can help just ask .