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What advice do you wish you were given when you first had stoma

What advice do you wish you were given when you first had stoma?

Found out this week that after 5 successful years on humira it is starting to become ineffective. Diagnosis is now to remove all or part of colon.

So what tips and advice can you give

Male 50 uk based


There are some things I wish I'd been told before I had my ileostomy, because if I had, I'd have got my stoma much earlier! I wish I'd been told that I wouldn't be one of the people I'd read about who have to empty their bag ten times a day or who pass rectal mucus several times a day, or whose medications stop working because they can no longer digest them. Those were my main concerns prior to surgery and led to me delaying having an ileostomy for about three or four years. I empty my bag once or twice a day, never pass mucus and my meds work fine!

I wish I had known more about the system for ordering stoma supplies. It's far more complicated than it needs to be, and my stoma nurses - who were incredibly helpful in many ways and still are - didn't explain it all to me. (I'm in the UK too, so can help you with it if you need it.)

I actually did know this one, but it's a good thing to know: in the UK a permanent stoma means you're exempt from paying prescription charges (even for prescriptions not related to your stoma). You have to apply for a medical exemption certificate.

And one I only recently found out: where I am, you can get a clinical waste bag which rubbish collectors will come for once a week. You have to arrange it with your local council and GP. I'm not sure if this applies across the UK or if it varies depending on your local council.

fuzzy butterfly

Well-known member
I wish I was told that I might still pass some stool and mucus from my bottom, as when that happened I nearly had panic attack. Was sat on loo ringing on my mobile phone my doc to see if I needed to go Back to the hospital, felt a right lemon when I was told it was normal :) .they told me just about every thing at the hospital but not that one. Oh well!!!
Unmasked I am putting off surgery for same reasons. Everywhere I read emptying bag 10-15 times a day. Been mayo clinic has that in their site. How does anyone even ever sleep?

fuzzy butterfly

Well-known member
Hi I found that if I didn't eat after 8pm ish,I only needed to empty 1,2 times in the night but some times I didn't at all. The amount of emptying varies person to person you may be lucky and not need to empty much, but I found that the relief from my pain was worth it..best wishes
What advice do you wish you were given when you first had stoma?

Male 50 uk based
Since you are in the UK, this doesn't really apply, but I was quite taken back by the cost of ostomy supplies here in Canada, and I needed to scramble to find an insurance provider that would take me with a "preexisting condition".

Even with insurance, I'm paying nearly $700 in premiums per year, which hurts this family of 4.
It's been 3 months since my surgery, and here are some things that I've learned (for an ileostomy):

1. Change your bag when you want to, but never let it get more than 1/2 full. When I'm at work, I prefer to empty my bag whenever I use the restroom. When it's empty it lays flatter in my wrap and is less noticeable. When I'm at home, I only change it when I have to. If you let it fill up more than 1/2 way you run the risk of getting leaks.

2. Be wary of gas. This past week I've sprung 2 leaks due to gas. I was being lazy and not "burping" the excess air out (thinking it's just air..what's the harm?) Well the excess air causes a back flow of pressure and the output starts to leak under your seals. Now I'm not only aware of the gas, but of the foods that cause it.

3.Get the right support. I've never used a belt, but I prefer to wear a wrap when out in public, actually almost all the time except when I'm sleeping. If you order samples through convatec or coloplast they sometimes will send you coupons for ostomysecrets, that's how I ordered mine. I've just got one wrap in black that I wash every other day or so. As long as you are careful and don't get it dirty you may be able to go longer, it is just very hot here and the extra layer collects a lot of sweat so I prefer to wash it more often. (When I'm home I let the bag just hang free, my boyfriend and family don't mind, even before I switched to opaque bags! :ybiggrin: It's just nice to have it wrapped up in public, feels a little strange but helps me "blend" )

4. Shave the area around your stoma. When I first got mine and was doing research they only recommend that males shave. But most women, myself included, have some sort of fuzz on their tummys. I was experiencing a ridiculous amount of pain during changes because the wafers were waxing my skin every time. Now I shave around and use adhesive remover, it seems to be the perfect combination.

5. They itch. Even for no reason. My stoma and the skin around it itch all the time. Sometimes its from an irritation from food, sometimes it's from razor burn (see #4), sometimes it's from sweat, and sometimes you don't know what is causing it. My nurse says everything looks great and there is nothing to worry about, so I just deal with it, but it does get very annoying. I found that the sensura wafer is a lot less itchy for my skin, because it feels like a second skin (versus a paper wafer which for me is VERY itchy)

6. I don't wear jeans anymore. Before my surgery, 90% of the bottoms I wore were jeans. Now I mostly wear leggings, or dresses. I find that having tight clothing around my waist is uncomfortable and can affect my output.

7. Be prepared. I carry a small bag with me to work/long errands just in case. It has all of the supplies I need to do a bag change. Luckily, I haven't had to do one on the go yet, but I'm prepared if it happens! It's also helpful to set up an area specifically for bag changes. I like to lay down a towel on the sink counter and lay out all of my supplies. It helps to have everything ready to go before you start your change, and being near a sink helps me wash my hands in between steps. Especially if you're like me and always make a mess with the stoma paste!

8. Find out what your insurance covers. I spent $100 on supplies through an online wholesale company- before I found out that my insurance covers my supplies 100%. Now I'm applying for a reimbursement but its doubtful.

All in all, I don't mind so much having Stewie. I received the ileostomy during an emergency surgery in June, and plan on having it reversed in Oct/Nov. It took a few weeks to get used to, but once I learned how to care for it properly it's pretty smooth sailing.
I wish I was told that once you have a stoma with Crohns you may develop other skin issues besides irritation. Some of these can scare you out of surgery, but they are all treatable and normal. I can say I suffered for a very long time because I feel surgery is a last resort. The down side (maybe upside) is I am extremely pain tolerant so I really waited until I had nothing left in me........Like the others are saying.......it gave me a life again.
Stay Strong
MLB - I agree with you. I suffered 5 years with a j-pouch and wish I would have gotten diverted at year 3 vs 5. I had a horrible time with my temp stoma 5 years ago. This new permanent one is a night and day improvement! I'm glad that people in another support group explained how much better a permanent ileostomy was and they were right.