volunteer

I have a desire to spread the word... all of my ostomy nurses do not have an ostomy... how can you teach ostomy protocol without experience? So, I contacted two of our local hospitals about teaching new ostomates how to deal... I'm so hoping I can help... I needed it and it wasn't there...

I've had these same thoughts since I had my surgery. To help others. Not so much as to the pouch aspect (because we have good ostomy nurses here and they know what they are doing, they are specially trained), but more the emotional side of things and the 'regular' nurses in the hospital and how one is treated post-surgery. Like a leper almost. I felt very isolated and different from other patients. I noticed that the nurses would avoid me (and my bag). I didn't know what I was doing either at the beginning, but more than that, I felt marginalized and isolated because of the kind of surgery I had had. There were very few people other than myself that had an ostomy to deal with, none in fact. Doctors and nurses are supposed to be able to handle things like poop, but they don't like to and will avoid it; and you. This is something that needs to be addressed not only for ostomates but for people with bowel diseases. I wish you well in volunteering, Heaven knows we need people to share and help. You are right. It wasn't there. It's all about the poop, and I find that pretty disheartening in a supposed modern world such as we have today. Think of the little kids who have bowel disease, my heart just aches for those poor kids.

Thanks, HarleyDoll. It's so true regarding the post-surgical support. The doctors and nurses do not prepare you for the emotional pain that comes with this. I was disheartened as well. I hope to shed some light on those who are not given a clue as to how to deal. How long have you been an ostomate?

Mid February 2016 was my surgery, so just over 8 months.

I am lucky - I was reluctant to have the ileostomy surgery - until the team at hospital (Newcastle upon tyne, UK) called me in and sat me down for an hour with one of their nurses who has had hers for 20 years. She was also my nurse immediately post-op and some of her tips on changing pouches still stick with me daily.
I have to say that there were no issues with other staff either - I woke through the night a couple of nights post op, and a nurse was draining my pouch into a bowl, hoping not to wake me, knowing that I had had problems the night before with pain and that uninterrupted sleep would help recovery.
A couple of months post op and I emailed the team at hospital to say I was having problems - one of the other nurses who has known me over a decade called me back. By the end of the conversation she told me very directly to go to my GP and request antidepressant medication and counselling (6 months on I have not had counselling - NHS priorities I guess - but I am certainly in a much better place now) - she recognised that I needed more than just practical support.
I am coming up to my first anniversary and while I still have practical issues they are slowly being resolved.
I can certainly say that having a nurse who explained what she carries in her handbag for emergencies, how she wears her pouch under a swimsuit and just how to clean and to place a pouch made a tremendous difference.

They are an awesome colo-rectal team!

Words of Encouragement from Ostomy Advocates I Hollister

Many of our UOAA support groups need people who do visitor training; this could be a good outlet. Thanks so much for giving back. At UOAA, we need advocacy help on the national level as well.

Perhaps local for you:
http://www.ostomy.org/asg_pages_asg_006.html

I hope your hospital is better than ours in Texas. When our local UOAA group tried to assist, they wanted to run background checks and treat us as unpaid employees subject to their employment rules. It became more and more demanding when all we wanted to do was lend support to those who need to understand what it is to live with an ostomy for whatever reason. It's a very scary time, and who better to help than people who live the life?

I understand HIPAA complicates the volunteer world, but I would have loved to have had contact with someone who had already gone through the surgery and day-to-day activities and challenges. Who better than a real live ostomate?

I applaud you for wanting to help others. We need to stick together and

I considered making a YouTube video because of my inverted stoma. Lol!
I thought not only is having to change the bag unusual, but it seems my particular shape and dimensions are even more rare, and maybe I could help people.
I have a 12-year-old grandson who has his own address or whatever you call it. Once he put out a video of himself screaming for 5 minutes. And he has a number of subscribers, bless his heart.
Anyway, it turned out that my problems were such that the best alternative was a reversal, so I've now had that done.
I recently learned that while I was out of it, suffering from the toxicity of sepsis, my doctor had been working on making my stoma an "outie" during surgery but was unable to do so.
I'm certainly not home free. Altogether, I've had 4 surgeries: the original emergency, one stoma correction that didn't take, the reversal, and a hernia repair.
In my 30s, I had 2 cesarean operations, and I have bad scar tissue buildup. I'm bleeding from the stoma site again and worried to death that if I require any more surgery, it will cause me to have a permanent ostomy.
With my fears and tragic delivery of all my experiences, I don't think I'd be of much help, even though I have offers out to folks whose loved ones are facing surgeries.
I don't think I've retained the most important memories that would be more valuable to someone scared. I wrote down a lot of my thoughts, but when I find the notes, they feel like I've just been whining.
Oh well. That is the way I seem to be built. A lot of ideas that rarely come to anything. Turns out that a lot of folks listen to me in an unstructured way and feel better for it by way of unjudgmental conversation. Doesn't help society at large, just in my very small circle.

Ycats, that's an excellent idea. I have always looked at you as courageous. You now know why. Why not share your experience? Good luck and best wishes, Angelicamarie.

could start with a blog, been thinking about it. I have been doing research on trauma, a stoma is a traumatic event for most people. Support groups and assistance are in short supply in this city.