Recently diagnosed

Thanks, luckily my op is midweek so fingers crossed I'll have some support x

Hi Carog,

Problems at beginning were solved by changing to a convex bag with a belt to hold it in place. As I say this worked fine for around 8 weeks before I started having lots of leaks. This might have been down to putting on a bit of weight I’d lost or just being a lot more mobile and gardening. My stoma is very high, on a level with my waist so not the best place when bending (not idea why they put it so high, the nurse said it was due to folds below but I don’t agree as more folds at my waist, however nothing I can do about it now).

The stomas nurses did send me other bags to try, some deeper convex bags and some other brands but they weren’t working either, so I eventually posted here and ‘crankshaft’ suggested using a wafer/ring between my skin and the bag. I requested some samples of Salts Aloe Rings 1.8mm thick and since using them – no leaks, although it’s early days yet as only being using this combination for a week but fingers crossed.

Hopefully you won’t have any problems.
Best wishes

Net77

It interesting to know the stoma can be placed in different sites which help or hinder. My stoma nurse said one them would mark me on the day of the op to show the surgeon where to put it.

Hope your recovery continues well. xXx

Just meet up with a friend who had my exact op 4 years ago and is 4 years on. So reassuring. He can do everything despite his ileostomy being permanent. He even has an occasional curry,hurray !!

Dear Carog 

I too had to have a stoma fitted. In fact, I’ve had both a colostomy and an ileostomy. In both cases, I was under the care of a marvellous team of specialist nurses who taught me how to work with the equipment. I even had home visits to make sure I was ok. 

As for supplies, they were well organised. The supplier rang me regularly to make sure I was kept topped up. The supplier also had their own specialist nurses who could help. There are plenty of people around to support you, and the stoma support group here have plenty of good advice. 

While I never thought I could manage, and the thought of a stoma was the worst part of my cancer diagnosis, it became second nature. Not without problems at times, but all easily overcome with our fantastic stoma nurses. 

Dear Wellspring, Thank you for your response. I'm slowly coming to terms with what is happening. The stoma is something I worry about but to fair I'm also worried about the op. It it so lovely to hear from people like you who have been through it and are coping well. I hope I am like that in a few weeks time !!

Take care, love Carog

Hello Nettie123,

I finished three months of chemo a couple of weeks ago having had surgery for a locally advanced tumour in my sigmoid.

My own chemo started about 7 weeks after my surgery, so guessing that you will have a while before you are considered fit enough to start. Really good to read that you have made a good recovery from the surgery, as that will hasten the time to start chemo.

My own chemo comprised oxaliplatin administered intravenously once every three weeks in my local hospital, followed by 14 days' of capecitabine tablets at home, with a week off. I had four rounds of chemo over just under three months. The team of nurses in my local hospital were excellent. I did experience significant side effects, which you may or may not. The good news is that my treatment was moderated in response to these effects and my side effects moderated. I felt supported by both the consultant and the nursing team. Always refer on any issues - major or less so. I had access in my Trust to a 24-hour service at the larger hospital where I had my surgery and called them a few times and again had great support. Every person is unique, but I hope that what I have written provides reassuance that you will be in safe hands

Now my chemo is over I still am experiencing some on-going side effects such as tingling in toes and fingers and an unpleasant taste but I can say it wis bearable and the stats suggest an improvement in outcomes further down the track  if chemo is prescribed.

I don't log on every day but do so from time to time and look forward to hearing how you get on.

Best wishes.

Hi Carog. 

I had surgery in July 2019, which left me with a permanent stoma. The stoma nurses are brilliant. I had a visit at home 2 days before my surgery to mark the place where my stoma was to be sited. She also brought several booklets with loads of information. I had a visit in hospital the day after my surgery from one of them to check how I was doing and bring me a holdall containing all the things I needed to look after my stoma. It all seemed quite daunting to begin with but I got used to it quite quickly. They don't let you go home until they are happy you can change your pouch yourself. You will be visited at home afterwards and put in touch with the company who will deliver your supplies. The company will phone you to set you up then you order from your gp surgery who sends your prescription and everything gets delivered to you. They even phone you regularly to make sure you have enough supplies and remind you to order. Regarding food, I think it depends on what type of stoma you have, mine is a colostomy. I can eat everything I did before.

Good luck.

Love Kim xx

Thanks Kim, I'm having an ileostomy and have been told there are quite a few things it is wise to avoid especially at the beginning. Due to Covid my first introduction to the stoma team was done by phone and I'm not sure they are doing home visits. It's all a bit strange during Covid including having to self isolate before the op and no visitors after the op. Lovely to hear that you are coping well.  Take care, Carog

Thanks for all the positive comments. I've had my last day at work before my op and trying to stay calm but so many thoughts gong through my head. Latest one is my polyp in my rectum is very responsive ie need to go aspa. When I have half my rectum cut out will the incision/ scar tissue be equally responsive so feel like I need to go despite the Ileostomy ?