Surgery after chemo ends in June with outcome of permanent stoma.

Hello Ollies Mum, I can understand both your concerns, I had a Lower Anterior Resection of the Colon and the surgeon told me when I asked him how long it would take he said that he had booked the theatre for the whole day! Don't be scared of the operation, I am sure you will be in good hands and I didn't feel to bad after it. I had a small problem as the small bowel went on strike which can happen occasionally so I had to stay in for a bit longer, but recovery was good otherwise and very little pain.

Regarding the stoma, did they say specifically why it would be permanent? I think that is a question that I would want to ask. I thought that if they had enough bowel to join together and a reasonable chance of  a 'new' normal they would go for a temporary stoma, which is what I had. If the surgeon can explain it more to you and a permanent one is the only way out you have to say to yourself, as my excellent Stoma Nurse said, that this is saving my life.  I have a friend who has had a colostomy for over twenty years and it is just a normal part of him. I had an ileostomy for a year (the reversal got caught up in Covid) and again you just get used to it and it didn't stop me doing anything.

If it hasn't been explained well, try and get some more information from them. In the meantime I hope that the chemo is going ok and not causing too many problems for you.

All the best, John

el

Hi Ollies Mum

I have rectal cancer and had a stoma in December (when I was 61) within a week of being diagnosed, prior to chemotherapy to try and shrink the tumour, Such a shock. It was scary but I had a lot of support and guidance from the wonderful stoma nurses. Having a stoma can be hard to get used to, I did struggle at first, okay, I admit it, the first week was awful(!) but within a few weeks it becomes second nature and it really is fine. Apparently about 1 in 500 people have one, so you have probably met someone with one without ever being aware of it. I try and look at it as being part of the whole treatment to save my life.

Search for stoma/colostomy etc on here and you will find lots of help and advice.  Also, do have a look at the Macmillan “ileostomy, colostomy and stoma” forum.  You are not alone. Best of luck with the rest of your chemo and the op xx

Hi Ollie's mum,

I had a lower Hartman's procedure 2 years ago at 57 leaving me with a permanent stoma. The initial thought was "oh no really", however it saved my life and is a normal part of my daily life. It's amazing what we get used to. 

After the surgery it will take a little while for your bowel to wake up as it has been handled. The best tips I can give you is to get mobile as soon as you can as it will help the healing process, drink plenty of fluids and small meals to start.

Your stoma nurse will give you a full understanding of how to change your stoma and ongoing orders of supplies. The nurse will need to agree to your discharge from hospital and be happy with you managing your stoma. You will likely also have weekly visits from a community stoma nurse at the start as your stoma will change and reduce as it heals.

Hope that's helpful and not overwhelmed you.

Best wishes

Martin

I don’t know if it helps, but about 6 months ago before my husband and I began this journey, I saw a social media post from a pretty young woman who had a stoma....something like “taking the stigma out of a stoma.”   She told her life-saving story and the worry about getting a stoma, and then how it eventually was no big deal.  She showed a picture of her pretty slim tummy with the flat, compact stoma bag, and it was such a pretty image I wish I still had the link to share with you.  It turns out my husband has not needed a stoma (yet) but I was fully ready to have it be no big deal.  He was worried and thought it would be unsettling for me to help him change it or whatever, but really as women we easily deal with changing babies nappies and let’s face it, handling our own menstrual flow, snd I think the stoma is clean and easy compared to those. Anyway, I’m not sure if that helps but just a thought.

Thanks for all your replies. I suppose it is coming to terms with a life altering procedure but if it means I am still alive will just have to learn to cope. My partner & me have been together 3 years & we both lost our spouses to cancer so dealing with my treatment & everything else is hard. He says it won't make any difference to how he feels about me but I feel bad that our lives will change from how we expected.

Hi Ollies Mum. I had my permanent stoma in July 2019. I cried when my surgeon told me I had to have it but my lovely colorectal nurse said that it was saving my life. From that point I gave my head a shake and decided to get on with it. Now it is just a part of me. If tomorrow my surgeon said that there had been a breakthrough and I could have it reversed , I would keep my stoma as I have heard of so many people who have had reversals and had problems. I'm also an Ollie's Mum, one of my cats is called Oliver! Good luck with your operation.

Love Kim xx