Stomas

Hi Philip

I.used to think the same as you but it does get a lot easier when you know what your doing .

In the way of what you can and cannot eat , when to change your bag that really is more of routine unless like me you have had bad days when anything you eat goes straight through , or the opposite with constipation too.

I have was first diagnosed with Bowel Cancer in Oct 2016 so had my dear quite a few years now and won't be able to have it reversed as I have Stage 4 as I have secondary cancer in my body lung , peritoneal,  chest wall,  and at the top of my Liver .

So don't despair it will get easier but if there is anything I can help you with please message me and I will gladly help of I can 

Take care 

Jimbobs 

Hi Philip 

I know exactly what you mean, I had LAR early August and I actually dreaded the changing of the bag, to be honest I was clueless and to make things worse I was out of hospital without the knowledge or health to deal with it.  The pain meds were so powerful I didn’t grasp what I was told.  I found a way of dealing with it as I recalled a nurse saying hold on and let the warmth of your hand bond it to you.  
I know that you probably think that you don’t know where to put it, I did  I couldn’t see the thing, it will get easier as your stoma develops. you are at the toughest time

Your Stoma nurses will help, they can guide you and if you need a change of bag they will sort it and get your prescription sorted.

It took me a while, I had to have a mirror placed in the right place, little pieces of kitchen roll made into circles to put around the flat stoma and I found it tricky  but the heat of my hand held it. They gave me a belt and convex bags, Eakin rings to protect my skin and I now feel fine about sorting my Stoma.

Talk to your Stoma Nurses they’re angels.

I hope things improve, keep checking out the threads here, there are tips and tricks to deal with it.

That horrible cancers in the bin and your Stoma saved you

with very best wishes

take care

Ta Ann.  Like I said above, forcing myself to try buck up. Just felt so damned low last night.

Thanks a lot. Finally slept a fair bit. Tryingto be positive.

You are allowed to feel low. I certainly did. It takes some getting used to especially when you can’t get the thing to stick and can’t sleep. I used to wake up with back ache because I was sleeping in sitting position and that was only if I got some sleep without attending to the bag. It will get easier. 
Hope you have a better day today 

Hi Philip. Please don’t be too tough on yourself - it’s early days yet for getting to grips with your stoma and recovering from the operation at the same time. Your head will still be a bit all over the place and your body has had a battering but it will get better. The stoma nurses will become your best friends and will be able to give you different bags to try and little sticky strips which you can add to make sure the bag is well and truly stuck. Have you thought about posting on the Ileostomy, Colostomy and Stoma Support page too?

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum

I used to set my little stall out on the bathroom window sill with a stand up mirror in front of me and a couple of bags cut and ready. Empty the bag and use the spray to remove it and pop it in a poo bag. I then cleaned the worst off the stoma with toilet paper then used a moistened wipe to clean off the rest. I then dabbed the area dry with kitchen towel/a dry wipe and then applied the new bag. I then used to press the seal down all around the stoma and then held my hand over it for a minute which warms the sticky bit for extra stick! Some people pop the bag under their arm or on a radiator but I’m not that dextrous and the heating usually wasn’t on!

If you are a bit hairy around that area then I think guys often shave around it to help the bag stick - a top tip is to put an empty toilet roll tube over the stoma to protect it!

You do not have to use the bags that the hospital gave you so it’s worth trying others to see if they work better for you - your nurse should be able to give you some or you can send off for free samples from suppliers online. I used the Salts Confidence with Aloe Extract and found them to be pretty sticky. 

Hope this helps but keep posting and talking and things will hopefully settle down soon

Take care

Karen x

Thanks all of you. Sorry not been back online much.

 Woke up yesterday after first decent sleep since admission last Wednesday., and forced my positive head on. Had long phone chat to my wonderful wife,  Resolved to win, not lose! Stoma nurse decided main issue was a lap site very close to stoma and in particular the masses of surgical glue thar prevented a decent seal.  New style bag with about 30-40% bigger sticky area, preceded by one of the sticky circles, and followed by a further bodging piece below where seal had been failing. Then read all the Salts and other leaflets, looked up community stoma nursing etc., to try and control my situation rather than being controlled.

 Sadly, slight leak at about 8:00 ( where 12:00 is straight up) at 01:30, then, inevitably, another 5 odd hours later. But, wanted original fastenings in place to help nurse work out solution.  Not same leak point as previously, and happened flat out asleep! Got cross instead of depressed, and even more resolved to get this right. But need working bodge and for me to be able to implement it, so lord knows when I'll get home, as no stoma care at weekends. Cannot, though go home leaking!

Hi @Philip. I hadn’t realised you were still in hospital so it really is early days. In a way that’s good as you’ll be able to see the stoma nurses every day and hopefully find a way to stop these leaks. My stoma was a night owl and I often woke with a very liquid full bag that I had to support to the bathroom to empty. Eventually I got into the habit of waking every couple of hours and emptying it with 1 eye open before going back to bed - not great but if it’s leaking because it’s getting so full then it could be worth a mid-night empty? Anyway I shall leave you in the hands of the expert stoma nurses and cross my fingers that you get it sorted by Friday so you can be home for the weekend

Hi. I didn’t know you were in hospital. Like Karen said it’s so early, I could barely stand let alone see my stoma. Take time to gain your strength and don’t worry about leaks. They’ll fix it. Take care. 

Hi team.  Thought I had messaged the other day, but clearly failed dismally!

Things improving. Stoma nurse applied fix version 4 Thursday 16:00, which stayed on solidly till her visit 10:00 Friday. She supervised me apply, with guidance but I did maybe 85%, then came back 16:00. Still secure, so I did about 98% pf job, with her advising on placement and being the second pair of hands you need at first. Still good this morning, so hopefully I will change once today (about 15:000) successfully, then again same time Sunday, then the stoma nurse checks Monday and supervises my work, and with luck it's off home to see my wife again!

Loperamide at 4mg three times a day has reduced output, as docs were fretting. Ok, but I don't want to take any opioid for very long!  Hopefully docs happy by Monday. No idea how one might assess output once not being measured by nurses!!

Thanks for the moral support, and sorry to have been such a sad sack.