Stoma confusion

Hello CraftyJo

Not trying to fob you off, but these are questions best put to your support team.  Places in the country seem to vary, but if you are lucky like me you will have access to a team of 'stoma nurses' who will be able to answer your queries based on your particular circumstances once the operation is performed.  You should also be able to find material on this site which gives fairly specific general information.  Other places to look are sites like this one (I use this Company but you'll be advised which one might be best for you)  https://www.coloplastcharter.co.uk/advice-and-support/ostomy-support/

Hope this helps.

CraftyJo, I had my stoma bag on the 14th Feb this year. I was told I could have leakages from my back passage after the opp.
The reality was I had mucous leakages regularly and took to wearing a nappy for my own peace of mind.
I then had actual waste matter from my bottom and I phoned my support team and was told it can happen after my type of operation which was a Loop Colostomy.
A few days ago it was very bad and so I took to taking the preparation prescribed by my doctor.
It looked like I was constipated although I had stools coming into my stoma bag.
But when the preparation started working I was very surprised to have to change my stoma bag 5 times.
I think the reason why I was having waste matter out of my bottom was because my stools were very hard and so were difficult for my body to pass into my stoma bag. 
However this is just my non medical opinion. 
So far for the last few days my stoma is active and my bottom is behaving okay.
You will know when to empty your stoma bag as it becomes obvious.
I was given a supply when I left the hospital and my Stoma nurse arranged a Coloplast Charter account for me which I use to order my supplies when  needed.
It's usually once every two weeks.
I have went through hell with constant diarrhea for about 10 months before my opp.
I have found my stoma bag a blessing.
My wife and myself decided to call it Bubble & Squeak.
My surgeon said the operation would give me a better quality of life and she was right.
I was put onto a 2 week pathway for my treatment and it has worked very well so far.
I have 2 more Chemo infusions to go and then another scan to see  how things stand after 6 treatments.
I too have rectal Cancer.
Good luck to you.

Chromeplated.

Thank you for your honest answer. I have had this problem for 3 years now and have no bowel control or sensation too. I have to wear pull up knickers day and night as I am now even having accidents in my sleep. I hate going out now. Can I ask how long did you have to wait for your referral appointment and then how long after that did you have to wait for your op? Thanks

As I mentioned in my post I was put on a 2 week referral notice and it was quite quick with firstly an appointment for a camera examination of my back passage, then a scan, then a consultation with my consultant.
I then had 5 weeks of Radiotherapy + Chemo tablets every day during the week with weekends off.
My surgeon told me my tumour had only shrunk a little bit and she was unable to remove it totally which would be no good and recommended the operation for the Stoma bag. 
Hospital appointments seemed to be quick and opp carried out on the 14th Feb. 
If you take about two to three weeks in between each stage of my journey then you have a reasonable timeline of my treatment.  
You will be better talking to your doctor about timelines etc.
Sorry I cannot presently update you on how long but I can go through loads of paper work eventuallhy and maybe give a better idea of how long things took.

Best regards, 

Chromeplated. 

Hi CraftyJoe.

I was diagnosed with rectal cancer at my colonoscopy on 6th February 2019. Mid March to April, I had 5 weeks of radiotherapy alongside chemotherapy. After this I had a break so the treatment continues to work.

At this point I didn't know for sure that I would have a stoma but I knew it was a strong possibility. After further CT & MRI scans, I  was told I would have a permanent colostomy. I had my operation on 17th July 2019. My rectum and anus were removed and I was stitched up, so nothing can be passed from there. It does all seem a long time when you are really worried, but the length of time makes sense when you realise that it is to allow the treatment to continue working. You can still go swimming with a stoma. Depending on the type of stoma you have, you will know when to change or empty. With a colostomy your output is thicker, and you use closed pouches, so you change it. With an ileostomy the output is looser so you use drainable pouches which you will empty as necessary. Hope this helps. Good luck. 

Kim

Thanks for that info x

Thanks for the info x

Emptying a stoma bag depends on whether it is a colostomy or iliostomy.I have an iliostomy and it is really easy to manage.yes you can swim and pretty much carry on as normal.

All the best

Kath

HI. I have an Ileostomy and I empty it nearly every time I have a wee the reason being I like to not have a half full pouch. I find it quick easy to keep it clean and flat. 
night times are a different story, I don’t eat much after six as I don’t want too much output

If you have a colostomy it’s different. 

Hi CraftyJo

There are quite significant differences between a colostomy and ileostomy so once you can confirm which you are having I’m sure you will get specific advice for each. But yes, swimming is not an issue with either of these. You don’t actually have any control of your output with either-it just happens when it happens, but you will be able to sense when it’s happening and soon get into the habit of changing or emptying the bags. 

I have an end colostomy and have not had my bum sewn up, but still have never once in more than 2 years ever had anything come out from my back passage. 

Oh, and no question is a silly question when you are faced with this. If you need to know something, ask away!

Sarah xx