Help for wife on a steep learning curve please!

Hi RosieW2 - I joined the forum this evening, so don’t confess to be an expert by any means. I only recently had a left descending colon operation myself (11th September), so it sounds like I’m only slightly ahead of your husband. 

A few pointers from my experience. Hopefully helpful:

- The stoma nurses are brilliant and will schedule house visits soon after he gets home

- I decided to register with Bowel Community for reorders although you can stay with Charter

- I discovered Calamine lotion is very good for skin sores that can develop around your stoma bag - which I put down to a settling in period.

- Roughly a month since my op - my stoma has shrunk to what I understand will be it’s final size

- I named my stoma earlier on “Lance” as Mr Armstrong is also full of sh#! - a minor thing but somehow it has helped add some humour

- Alot of people I know helpfully shared “I know a friend who had a disaster with a stoma bag” stories. I know I’m early days but this hasn’t been my experience. I use the drainable bags ref 10421 and find the seal very good

- A lot of what he needs will be provided to your husband, but in addition I bought a folder-able mirror small enough to fit in a wash bag which helps greatly with replacing the bag

- Sorry to be graphic at this point - for the purpose of clarity - often I stand and drop the stool directly into the toilet water - sometimes I kneel, often if the stool is looser or the bag fuller. 

- Finally, in my case my surgery was an emergency so I view my Stoma as positive. I was in a lot of pain pre-surgery and the stoma has helped relieve the pain

if you or your husband have any other questions or want to contact me directly feel free

i wish you both the very best

T.

Hi, RosieW2 I had my stoma fitted in 2019 after an emergency operation which left me with 150 cm of small bowel being removed. Quite a shock when I woke up 24 hours later with my new friend, Gollum ! Stoma nurses are wonderful as are the surgeons for advice. Cannot live without spray for removing adhesive and plenty of the special powder for soreness. Used to have a rucsac with spare pads, wipes spare undies, etc. Don't t forget to ask for a key to the disabled toilets, you are entitled to one. I do not now have Gollum since last December. Only thing to have a good supply of loperamide with you is useful. I still take about 20 a day, but what the hell. Ensure drinks are good as well if you lose too much weight - I lost about two stones but now keep fairly good, still just about 9 stone 5 but ok. Keep safe, Peter.

Hi 

I had an ileostomy in March which hopefully will be reversed at some stage in the future. The extra things I find I need are removal spray, barrier wipes, salt wafers and flange extenders. All which I get with my order of bags as and when I need them. I also order packs of soft wipes from Amazon. I do get some every month with the order along with the bags to dispose of everything but I like the thicker soft ones. I also bought a waterproof mattress protector as I have had a few leaks in the night.  I got one that is cotton on the top and it's not hot and sweaty and easily washable.I sleep with an old soft hand towel over my bag just in case and if I do have a leak (which isn't very often now) it just means I just have to change myself and not all the bedding and it just avoids ruining the duvet

I also have a bag with everything handy in it. I have one of those toiletry bags that opens out with different compartments in it so you can see everything straight away. I always have at least half a dozen bags cut to size ready so I don't get caught short. Someone else mentioned calamine lotion which is great as when I use the flange extenders they make my skin very sore. I try not to use these very much but they  are handy to have as a bit of extra confidence when you go out. 

I find I don't need anything extra in the bathroom when I empty my bag. I have an ileostomy so the output is usually very loose and I use drainable bags, so just sit on the toilet and empty in. I think to be honest it must be easier for us ladies due to our anatomies to be able to do this, nothing dangly in the way!

I hope your husband gets on ok with this, it takes a bit of getting used to but I can change my bag really quickly now.

Oh I also have one of the VI Poo sprays in the bag, useful for a quick blast of a nice smell if you empty the bag away from home and I also bought some disposable toilet seat covers for sitting on public loos if needed! I am not good with public facilities.

Reading back on this it sounds like I am a right fusspot but having all the stuff to hand makes life so much easier,

Good Luck and take care

Great advice.  can I ask what is this make of soft wipes you buy on Amazon? Many thanks

https://www.amazon.co.uk/gp/product/B0728D7XFK/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1

Hi here is the link to the wipes that get from Amazon. Find them really good

Take care xx

Thank you

Hi, I wanted to share a recent discovering. My stool, I think maybe because of the positioning of my stoma, can be sticky. Which can be difficult to clean when dried. Wipes can cause my stoma to bleed. Tonight very carefully I used a small tool, similar to a nail file to clean off the dried stool. With use of a mirror and steady hand. I found it worked really well and as a result the stoma feels cleaner and more comfortable. I’ve not seen this tip mentioned by other so thought worth mentioning. I hope your husband is getting on alright with his stoma.

Kind Regards

Mr T.Rin

Hi, 

Have you got an ileostomy or a colonscopy? I have never heard of this before and just wondering what you are cleaning? Is it the actual stoma  or the skin around it? My output is very liquid and doesn't dry at all. I have an ileostomy.

Take care xx

Hi, I have a colostomy. My output sounds thicker then yours and I did think it might not be an issue for ileostomy stomas. Sorry for any confusion caused. 

For colostomy stomas - I clean the stoma, very carefully with the tool. I change my bag every other day and sometimes there is a little caking - best removed. Even with the size of the template whole reduced to stoma size.

Hope this helps clarify 

T

Hello Folks,

Just picking up on the thread that has been developing and thought I would add a bit.  I am two years and counting into an ileostomy - name of Charlie - and not reversible so we are together for the long haul.  There is so much I can relate to here.

I second a lot of the advice given already.  So do talk the stoma team about extra products as they know what is out there and can make a guess at what will suit you best.  It isn't a one-time deal though.  I lost a lot of weight pre-surgery and as some of it went back on (try being force fed calories by the dieticians - not as  much fun as you would think), the pouches that worked so well at the beginning had to be swapped for a better fit.  So things can change.

I used 'washers' at first (soft circular material to surround the stoma and help even out the bumps) but now have swapped to a paste which is working fine.  Releasing spray is a must and I have a barrier spray too (Cavillon) which helps protect the skin from moisture.  There are other sprays and a powder which may suit others.  Again the stoma nurses will have all the information.  I have gone to them rather than grope around getting samples that may/may not work for me.

I use the pre-cutting service from my prescription delivery service and the company has been excellent.  All the tracing and scissor work has gone so that is less hassle.  I do change the pouch daily, just a personal preference, but I'm not so  happy with the fit over longer.  I have a thick output too Mr.T.Rin and it helps to give the little chap a daily wash and brush up because it is a bit sticky.  It also minimizes leaks.  I rarely have them these days but I had a period when it was hell every night.  Check that you have the right pouch as it was then that my nurse tried something with a deeper base to accommodate the change in shape of stoma and tummy.

One piece of weird/good advice I was given.  If you have trouble getting the pouch aimed down the toilet, try sitting backwards.  Yes, sounds crazy. Think of riding a seaside donkey and you'll get the picture.  One word of warning, either get the pants down far enough or take them off if you don't want to be shackled by the ankles - there is no privacy with a stoma..... But the design of the toilet is wider at the back and it is easier once you stop laughing/crying.

Don't think you are a fusspot at all Phoebe21.  We are all in the same boat paddling like heck.  But it does get better, doesn't it.  And as someone said on another thread, this stoma thing saved our lives and that is a positive. So hope this helps someone out there.  Stay safe and sane everyone