Hello

Hi Picklewigs and welcome to our group.

Brilliant name by the way! We all have lots of different experiences in the group of living with various types of stomas, so there should be plenty advice for you going forward and lots of experiences we can share. How are you feeling? It must have been a shock to have emergency surgery, and things will be very new for you.

Do you mind me asking what kind of stoma you have and is it permanent or temporary? This can help you connect with others who have the same type. I have a permanent colostomy and urostomy after total pelvic exenteration for recurrent cervical cancer so am a “double bagger”.my surgery was 4 years ago so I’ve lived with them for a while now.

Please feel free to ask any questions you like-never feel anything is too trivial or silly. It takes a bit of time for the stoma to heal and settle, so it can take a bit of getting used to. But I think most of us find we soon adapt and get into the way of dealing with it/them. We’ll have lots of tips to share with you about how we manage and from our own experiences. Although the nurses etc can be an excellent source of medical advice, there’s nothing quite like speaking with people who actually have lived experience, 

I hope you’re starting to recover nicely-take it easy, and I look forward to chatting with you in the group.

Sarah xx

May be very naive but I had not really heard of stomas before the op, this has been taken from my small intestine. I have cancer but waiting to hear of it's bowel which was originally thought due to the obstruction but biopsies are leading towards ovarian. Multi Disciplinary Teams have been on both cancers so should hear soon. At the moment I've no idea if this will be temporary or permanent. I'm taking things one day at a time, haven't got the head space to deal with much more. 

I'm glad I've found this group though, like most things you can't understand it if you haven't lived through it. 

Niki xx

Hi Niki

I I think most people know very little about stomas until it happens to them, so you’re not alone in this. Once you find out more, you could update us as there are differences between an ileostomy and colostomy, and some stomas are temporary and can be reversed while others, like mine, can never be reversed. 

It must be especially difficult for you not knowing your cancer type yet and any treatment required going forward and with the suddenness of everything and the shock of your blockage I’m not surprised your head’s in a bit of a whirl right now. Sorry, I didn’t realise you hadn’t been given all the information you needed and just hoped others who had been in the same situation might be able to add their stories for you.

Sarah xx 

Picklewigs,

An ileostomy is performed on the small intestine (i.e. ileum). A colostomy is performed on the large intestine (i.e. colon). With regard to an ileostomy, a variation on this is a loop ileostomy which (as I understand it) is designed as a temporary measure to relieve symptoms until normal functions are restored and the loop ileostomy can be reversed. I have both a loop ileostomy and a colostomy. The latter does not function because of surgical problems when removing a rectal tumour so the loop ileostomy does all the work. It works well and I have declined the offer to reverse it for several reasons. Manufacturers of stoma products give good advice and guidance on their respective websites, with detailed diagrams to help us all understand the processes involved.

Dulac

Thanks Dulac, I've not seen anyone yet so this info has been very useful. Hate the waiting game but putting my trust in the NHS. 

I know I'll probably have chemo and wondered if anyone has used a cold cap. Heard about them but don't know much about them and how it may help.

Niki

Hi you are in the best company here. If you have access to social media look up Damien at "Crohns ostomy life," he's a 30 something Aussie guy who shows videos of how he changes his bag and cares for his stoma. He's funny down to earth and open and honest we have learnt so much form his pages and content. Good luck going forward and I hope you have a plan soon. 

Xx

I heard from the hospital today and have an appointment tomorrow with the oncology Dr. Feeling a little anxious and scared, brain imagining the worst scenario

I have just received an email from a trusted source (Messrs Comfizz) showing the terminology and sketch diagrams concerning the various types of ostomy, narrated clearly. However, it is sprinkled with occasional YouTube adverts but if you skip those you should get a clear understanding of the reasons for these forms of surgery.

https://www.youtube.com/watch?v=xjcKoHsH_1w

Dulac

Thanks for that, interesting. Managed to skip the ads

Hi , just my experience but I think you’re right in putting your faith in the NHS. I had the permanent stoma 2 years ago plus the chemo/radiation and I can honestly say they were fantastic from the stoma team to the surgeon himself. I had a chat with the head stoma nurse on discharge. She said to me , do you know the difference between the treatment you have had and private healthcare? I said ok what ? She answered better food ! I really believe that , my treatment was second to none, including aftercare. So good luck and keep the faith, the waiting was by fare the worst part for me.