Colostomy/Urostomy

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1137
MC22
Feb 08, 2024 1:37 pm

This is a great site, and I really have had some great positive feedback.  However, living with a colostomy is very different than living with a urostomy.  I myself have a urostomy due to bladder cancer and I find most of the discussions on here are geared more towards colostomy...and that's fine. I just think that it would be more user friendly if the site could maybe separate the two issues ... And have a section for colostomates and one for urostomates. Don't get me wrong, This site is great. Only a suggestion, certainly not a complaint.

Bill
Feb 08, 2024 1:55 pm

Hello MC22.
Here is a rhyme that's just for you.
I know I've posted it before
but maybe it's not one you saw.

Best wishes
Bill


~DON’T FORGET UROSTOMIES.

When we think of ostomies
we tend to think colostomies
and then of ileostomies 
and last of all urostomies.

Overall they all do matter
but here I focus on the latter.
This is because I realise
I’ve not brought these before your eyes.

Urostomies are fair and fine
at dealing with our spare urine.
Whereas we know the other two
help to rid us of our poo.

Stomas for a urostomate
can nonetheless exacerbate.
They too have bags that irritate
and quite a few debilitate.

It’s fair to say it is predicted
their mobility’s restricted.
When strapped around the leg it might
then keep that person sitting tight.

I cannot emphasise enough
that wearing bags can be quite tough.
No matter what the bags are for
they have related things in store.

It tends to pull when it is full
no way to say it’s beautiful.
And when the bag’s filled to it’s peak
that’s the time the bag will leak.

So people with an ostomy
from me will get great empathy.
I don’t regret my ostomy
but won’t forget that there are three.

                                    B. Withers 2013
(in: My Ostomy World Trilogy - Book 2. 2014)

 

Justbreathe

MeetAnOstoMate website turned out to be a lifesaver for me. I say this because, for me, this ostomy journey was a devastating event both physically and mentally.
Here, I found folks who understood my feelings even better than my family or friends could. Only a fellow ostomate can understand how you really feel.

Information sharing is key, as well as support and understanding, to ultimately bring more harmony into our ostomy life journey. I found here, virtually no ostomy questions that are not touched upon. Questions which some might feel, may be too trivial to contact a doctor about or even too shy or embarrassed to ask their own doctor about. They are all addressed here.

For me, anonymity was very helpful in seeking answers to each phase of this life changing medical and mental event. Sharing initial trauma feelings, ongoing support and finally acceptance was what I found with my membership here. I am not sure what my mental and physical attitude would be today without having found this site.

Additional benefits included: finding products and ideas to help with daily maintenance, innovative ideas and as a bonus - some great humor.
After all “laughter IS the best medicine”.

I have been a member for 3 years, an ostomate for 4 years - yes, I certainly wish I would have found it immediately after surgery but so very thankful I finally found it when I did as I truly believe it turned my troubled depression and situation into a more positive attitude and acceptance.

Sincerely,
An Ileostomate nicknamed Justbreathe 🫶🏼

MC22
Feb 08, 2024 2:02 pm

Thanks Bill... No, I didn't see your post earlier.  

Past Member
Feb 08, 2024 3:31 pm

I too have got a urostomy
which my surgeon gave to me,
and as well is an ileostomy
both are there for little Fairy.


Most of the time I'm pain-free
this for sure is good for me,
many have needed an ostomy
without where would we be?

(Okay, I am not a poet, just had a try.) ;)

 

Hello MC22. Fortunately, since having the urostomy in 2009, there hasn't been any problems with it for me. I have only one kidney so of course there was only one ureter to be connected to the salvaged bowel for the formation of the stoma.

Fortunately, I didn't need this due to any form of cancer. So sorry to hear that was the case for you. Hopefully, you have been having regular checks with your urologist as well as with a stoma nurse.

I have a form of an open appointment as such with my stoma nurse at the local hospital. I have only needed to go a few times, for the ileostomy, due to a few sores that no matter what I tried to ease it, I knew I needed her help those times. She used the silver nitrate that did the job.

TerryLT
Feb 08, 2024 10:16 pm
Very helpful

Hi MC22,  Try asking the administrators of this site.  They do monitor the postings, but I doubt that they read everything.  At the home page, there is a 'contact us' button.  It's a good suggestion and they might consider it.  We lowly members have no control!

Terry

 

My Ostomy Journey: Bruce | Hollister

Play
MC22
Feb 09, 2024 12:27 am

Thanks for the response... I am blessed to have a really great urologist. I have only seen a stoma nurse once before my surgery and right before I was released from the hospital after a 10-day stay... she came to my room for about 7 minutes and changed my urostomy before I came home. However, I do have a great relationship with my urologist and can call him anytime.

MC22
Feb 09, 2024 12:29 am

Thank you for the insight, Terry! I will certainly try that.

Happy-but-Newbie
Feb 12, 2024 5:35 pm

MC22, I had the same doubt at the beginning, but found that most issues are the same: flanges, skin irritation, water resistance, wear duration, etc.

I am a urostomate anyway... so I see your point about some things being different...

I am not exactly an expert, just 6 months into it, but if there's anything I can share, I will happily do so!

Tonkaplayer
Aug 28, 2024 5:16 pm

Hello, I too have a urostomy and feel that anytime I search the general internet for urostomy, I start with a small amount of info and then it turns to colostomy. Nature of the beast, I guess. I am new to my ostomy since January 2024. I had some real difficult times getting my bag to adhere. Worked through it with an ostomy nurse. Still, I have failures and lots of questions and some trepidation. I have not tried the pool, and mine closes in two days. Oops, missed summer; where has the time gone? I would still stick to a site like this and keep asking your urostomy questions; we are around. Look for a local burn and wound unit in a hospital; they seem to have urostomy/ostomy nurses on staff. Best of luck, and if you find a place for urostomy people, please pass it along.