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People with stomas - Suggestions for a future nurse

I am studying to be a Registered Nurse and while I have Crohn's disease, I don't have a stoma.

What I would like to know is what helps you the most when you are receiving healthcare? Are there particular characteristics of nurses that you value or things that are said/ done that upset you? Are there particular things that you find challenging and need more support with?

While I of course value the teaching I am receiving, I thought it would be beneficial to see what you all could suggest to me so that I can build upon providing patient-centred care, whilst decreasing the stigmas attached to stomas.

fuzzy butterfly

Well-known member
Hi Lara. Id like to thank you for wishing to know about us as people..
Personaly..i appreciate kindness and supportiveness. That a nurse will listen to what i have to say and try to help as much as possible to resolve any issues i have. To suggest anything that they have found out about that may help make life easier for us. Be that from medical knowledge or other patients experiences,as all can be beneficial.
To be able to reassure us that having a stoma is a good thing and we can live as normal a life as we want with one. They can be literaly life savers and not to be embarressed or ashamed of having one. I loved mine it did save my life in more ways than one. Even give it a name (Hetty) as a stoma nurse said it can help with acceptence of it. Not that i was bothered about a stoma. At that stage i welcomed it with open arms as my pain was gone from the moment i woke from the surgery.Two years n a reversal later im still doing well and no pain since. Fingers crossed it stays that way.
Hope this helps and god bless you for caring enough to ask us. Wishing you all the very best,im sure you will make a great nurse . 💕💕Mandy
@FuzzyButterfly I also named mine too! As a 23 year old with a stoma, giving it anthropomorphic qualities really helped me cope with the realities.

As for your question, I agree, be supportive and understanding. Be willing to listen because when I had to have my diversion, I was at a point where I didn't even know which way was up. It was helpful to have stoma nurses that didn't assume that I immediately comfortable with the situation and really understood that, yes, this sucks. And it's okay to cry or be angry or whatever you need to do to cope. But no, it's is not the end of the world. And honestly, I don't know if you feel comfortable disclosing your diagnosis, but for others with stomas due to crohn's, it may be nice to share so that patients can relate better.

But the most important thing, be knowledgeable. Don't just know one product out there (for example, hollister). Do your research even if it goes against your establishment, and try to find the right products for the right person. Because every one is different. Having some tricks up your sleeve are great to have, and most of the time you'll probably get them from your patients. So listen!

Some tips:
1. Have your patients look into the Colo-Majic liners! They are seriously life savers. No more odors and super easy to just flush down the toilet. They're out of Canada and won't be covered by insurance probably but they're $29.95 for a box of 100 liners. Worth every penny.

2. Prepare them for blowouts because they happen all the time unfortunately. So keep a little pouch of extra supplies, underwear, pants, etc. with them at all times.

3. Get a great belly band! I use the Ostomy Secrets' one with the place to tuck in the pouch so nothing sticks out. But there are a ton of great options.

Hopefully that was what you were looking for. My stoma nurses have been so critical in my experience, especially since I've been battling pyoderma gangrenosum for 9 months. They've been lifesavers because they're patient and refuse to give up on me so I'm sure you will be the same! Good luck with everything!
In addition to the great suggestions already given, I'd add a sense of humour, there's nothing quite like having a laugh to make everything seem normal when you first get a Stoma.
I was 22 when I got my stoma and before surgery was assured by everyone I wouldn't be having a bag well I woke up from my surgery and there it was I wasn't happy I told nurses to put me back out and get rid of it,I didn't want to see,touch it nothing and my stoma nurse was excellent she changed my bag for me for the 1st week or so but she made me realized that it's not going away and I'm gonna have to do it myself.A few years later she retired and I went through a few stoma nurse just because still to this day after over a decade with my stoma I'm very selective on who I let touch it.

As for naming it I've never thought about that before but I'd say he looks like a Carl.

fuzzy butterfly

Well-known member
Hi tubes hope Carl is doing a good job for you..
Stomas not the greastest looking thing in the world but boy they do work wonders for peoples lives.
If i was to need another (had reversal 1yr ago) . I wouldnt think twice about having one. Best wishes 💕
Something I stress to EVRYONE who either is soon to have a stoma, spouses/family/caregiver of someone with a stoma, and anybody who asks me about mine is do not sympathize the stoma. What I mean by that is do not feel sorry for someone with a stoma. This stigmatizes the situation and the stoma becomes a shameful thing rather than what it is: an adjustment--a temporary change, or in some cases, a permanent lifesaver.

A month after I had my colon removed, I was back in the hospital for a heart issue. The charge nurse came into my room just to ogle me and said "Oh. You don't look like someone with a stoma...." and then walked out of the room. I never saw her again. Don't know what that was all about, but it still makes me angry.

Stomas are weird, this is true, but they don't make us less of a person. I don't advertise mine, but when someone finds out about Bob, I am very open and willing to talk about it. In fact, I enjoy keeping it a secret to make a point. (Right now I am nearing my 1-year anniversary working in the OR as a scrub tech and NO ONE at work knows about Bob.) My point being that we are still the same people we were before the stoma and can still function in everyday life just like everyone else.

I guess what I am trying to say is be empathetic, but not sympathetic. As a nurse, if you are sympathetic, your patient may start to think you know something they don't and may second guess themselves and how they feel about an already potentially stressful situation. Be encouraging and put a positive spin on things. Stomas are not the end...they are the beginning. :)
Something I stress to EVRYONE who either is soon to have a stoma, spouses/family/caregiver of someone with a stoma, and anybody who asks me about mine is do not sympathize the stoma. What I mean by that is do not feel sorry for someone with a stoma. This stigmatizes the situation and the stoma becomes a shameful thing rather than what it is: an adjustment--a temporary change, or in some cases, a permanent lifesaver.
I agree 100%! I had home care nurses who would say how sorry they were that I was so young and with a stoma... it was really confusing for me - I was alive!!

If anything, feel sorry that I have an illness that has destroyed my body at a young age, but not the surgery that has given my life back.
Having a stoma saved my life I'm very thankful for the stoma and my surgeon who gave it to me. I was reversed about 4 months ago now but still have life of issues. 3 feet of small and 1 foot of large is gone including ileocecal valve is gone so always using bathroom even in remission. Having the stoma I was pain free for once and I put all my weight back on and just got healthy again. As for feeling sorry I don't care for it either maybe in the beginning but after that it's just way of life just becomes the routine. A stoma is the biggest life saver for anyone with IBD. As for my in home ostomy nurses biggest thing to look for is person. After seeing them a few times to they remember your last conversation or remember what you talked about in terms of ups and downs or problems. Stuff like shows they are there for YOU and to help you with a life that is tough. Also everyone is different trial and error don't like someone taking care of you let them or the facility they come out of. That's what I personally loved from my nurses the time they spent with me wasn't just change the bag and go. We had funny conversations and talked about vacations and they were like a friend to me and it eased a lot.