Living with a stoma

Hi Sonny123

I am going to tag in a few people who may be able to give you some advice. blackstuff and AG1327 and Ewok. It is much better to come from people with experience who can understand the stage you are at and encouraging you going forward .

Take care ,

Court 

Thank you 

Hi Sonny123

I've got an ileostomy (Stacey stoma). I knew I'd be having a stoma before my surgery. I view it as a trade off, a tumour for a stoma. I don't feel as self conscious as I thought I would. It's like having a badge of survival. I feel fortunate that I was able to have surgery especially when so many people have had theirs cancelled because of covid. There are also lots of people that are not well enough for surgery or whose cancer is too advanced. They would give anything to be in our position. They're who I think about when I'm feeling low. I was also really scared of not waking up after the operation so seeing my stoma was a "thank God I survived" moment . It must've been a bit of a shock for you to wake up to a stoma especially if you didn't know it was a possibility. You need to give yourself the time to process everything that you've been through. It's an adjustment but you'll get there. Having a stoma won't stop you from doing anything that you did before. My stoma nurses are great and I'm sure yours are too. Cry, scream, shout but be kind to yourself. You've survived cancer!

Cheryl x

Hi Sonny123, I’m so sorry you’ve found yourself in this situation. It’s a huge shock and that’s hitting you big time now, Without a doubt you must have hoped this wouldn’t happen. Whatever anyone says it won’t make you feel any different, it is was it is. Disappointment after the first procedure will have taken its toll too. I had an Elape 2018 so I’ve had a bit of time to get use to the idea. It took me a while to accept my stoma or even understand how everything worked including stoma supplies but that’s been easy. My stoma nurse is brilliant and now it’s like talking to an old friend. The colorectal nurses are brilliant too and I can ring them anytime. You’ll be well looked after. I learnt about irrigation and feel I have my life back although it’s a new normal. I forget about my stoma now and there are days I don’t even notice it. I can sleep too without any concerns. So take heart, there are people here who can support you. Things can only get better when you hit rock bottom. I’ve been there too. 

Thank you very much for such an inspirational message. I was aware there was a quite low risk of it being permanent however I thought the odds was with me, from the feedback given. I'm struggling with the fact that when discharged from the previous colonoscopy procedure that I was discharged with a perforation near the rectum and been in severe pain for a few weeks alongside a week in hospital before this procedure.  I'm finding great difficulty in sitting down or lying down as the stitches are very painful in the rectum and a constant reminder. I'm very grateful for your message and will endeavour to take this on board. Thank you and God Bless x

Hi Ewok, thank you for your very kind message as its very helpful the way I feel at the moment. God Bless x 

Hi Sonny123.

I have had a permanent colostomy since July 2019. Like Chalet, I knew I was to have it before my surgery. I was really upset when I was told but my lovely colorectal nurse said that it was saving my life and that made me realise she was right and decided to get my head around it and just get on with it. I echo everything Chalet and Ewok have said. It just becomes the new normal for you and you don't really think about it after a while. I work at Wilko and we don't have a suitable toilet facility for me but I just make the best of it. I have only had a problem at work with a leak once since returning last August. You can do this!!

Love Kim x 

Hi Kim,  thank you for your kind message, as it does really help me to know that there is hope as I'm really stressed about the whole situation particularly as I was really strong and my wife's carer and struggling to cope as not being to be there to support her and the family.  Thank you and God Bless 

Hi Sonny, 

I haven't been on the forum for  a few weeks and have just seen your post. 

It sounds like you had a terrible shock after surgery as you were fixed on the odds being in favour of you not having to have a permanent stoma.  I hope you are getting on better now.

I had a temporary stoma about 40 years ago and was in pretty good health since it was reversed 12 months later. When I was diagnosed in March 2020 with a cancer that was going to require extensive surgery and a permanent stoma, it was the idea of having a stoma again rather than the cancer that hit me hardest! I couldn't bear the thought of going through all that again and having the stoma for life this time. The surgeon that gave me the diagnosis found this rather odd, I think, as he was seeing it as a reasonable price to pay for ridding me of the cancer.

Now I have had the surgery (almost 4 months ago) and am getting to grips with having a stoma. I couldn't bear to look at it for the first 3 weeks or so and gladly let nurses take care of it. Eventually, I realised I had no choice but to get on and manage things for myself and have done so since. 

I've had a lot of problems with it, initially with bags that leaked constantly and then with output that is very watery most of the time and causes a risk of dehydration, for which I have had to take St Mark's Solution in lieu of any other liquid and a shedload of loperamide! At least the leakages have stopped!

Like everything else, I suppose one gets used to it. I don't like it, but it is part of my life now and it has, as others have said, saved my life in the sense that it had to happen if I were to be rid of the cancer. I figure it could be a lot worse and I hope that the 'output problem' will settle down as time goes on. As I continue to recover from the surgery, I am reclaiming parts of my life and am now considering going swimming! My body will never be the same, but I am alive and cancer-free!

It's great that you have come through the surgery and hopefully you will learn in time to accept this strange appendage you have acquired!

I wish you all the best,

Osboz

Hi Osboz, thank you for your kind message and will take your points on board. Has anyone had a rectal resection as part of a tumour removal as am in absolute constant pain with the stitches in the rectum and was wondering how long before this pain becomes more bearable. Thank you again and God Bless