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Building Confidence with an Ostomy (w/ video)  

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VeganOstomy
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March 8, 2016 11:30 am  

Let's discuss building confidence with an ostomy!

Share your tips.

My written article about this topic can be found by clicking the link below.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Sarah Elizabeth Hart
 Sarah Elizabeth Hart
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March 13, 2016 10:32 pm  

Thank you for all of your mini guides and advice. Your website is one of a few that have really helped to form my positive attitude toward life with an ostomy. It only has to be as negative as you allow it to be. I hate when people say that they are "sorry for me having a bag" or "wow that sucks you don't have one you can reverse". I LOVE my bag and the confidence it has given me to live my life. I would much rather have an ileostomy than have Crohn's diarrhea and pain all day long. Thank you once again for inspiring me to grow to appreciate my ostomy!


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VeganOstomy
 VeganOstomy
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March 14, 2016 4:01 am  

Thank YOU for being so awesome! It's amazing how a simple change in attitude can make any situation so much easier. Keep on doing what you're doing! Eric


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Kier at 180 Medical
 Kier at 180 Medical
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May 31, 2017 10:14 am  

Thank you for always being such a great resource. This is a great video!


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Susan
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March 17, 2018 11:10 pm  

I never had any of the “positive” experiences and whet I left gyre Hospital, too early to a horrible rehab facility, my Stoma Nurse hadca hard time getting me to cut my barrier etc, as I was not doing well frim the anesthesia and I cannot do anything BECAUSE I HAVE NO MONEY!!! I cannot afford a Stoma Guard, belt or a y other accessory as I have NI MONEY AND I AM SHORT WAISTED SO THERE IS NO HOOD WAY YI PIY MY BARRIER ON. I have 5 layers at my waist and after 2days from my fat everything just rollls down little by little unriom I change everything and start over.
Even my home Health Nurse could not apply the barrier without leakage on my incision and I had to go back to the hospital.
A year later, I have NO OSTOMATES TO TALK TO, the people I have talked to all have families and are not ALONE.
This just sucks abs I am HUGE!!!!
Cannot eat veggies with the skin, grits with the skin, whole grains, nuts, seeds or anything I ate before.
I have no wuakity oh life so wish is the point. AND I AN WAAAAAY OLDER THAN YOU and of I was 49 I would have more energy. I have my energy at all.
Sadly, I have all my papers I order.
and I pray not to wake up to this nightmare.
I am happy for you,
My life SUCKS!!!!


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VeganOstomy
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March 17, 2018 11:52 pm  

Hi again, Susan.

Were you able to call Peggy, from the group that offers patient mentors? They seem willing to help.

For accessories, you don't need any of them - they are optional. If you are having a hard time affording supplies, there are many charities that will help you (quite a few in the US) as well as people who are giving away their unused supplies. You have to check places like craigslist.

Unless your home health nurse is an ostomy nurse, it's likely she won't be able to help you, and you should be seen by a stoma nurse.

None of your obstacles are without solutions, so please make use of the resources available and reach out to more organizations, groups, and nurses.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Songbringer
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May 3, 2018 10:04 am  

Thank you for this. I wish the day would come when this wouldn't be an issue, but I don't see it happening. It's not an issue of vanity, as that has never existed in me. I went out once with my appliance slightly showing, and it was so difficult I never did it again. I felt like the whole world knew. My friend that was with me kept reassuring me it wasn't noticeable, and the whole time at Timmie's, I thought everyone was staring at me, although I had the reassurance of my friend that nobody was. My issue is that I am so horribly disfigured from multiple surgeries pretty much back to back, including Ileus so severe that my abdomen blew open through my incision (incompetent surgeon who ignored 10 days with no bowel movement post-op), it looks like I was attacked with a chainsaw. 2 years post-op and the disfigurement is still very prominent. I can not wear any of the clothes I used to wear pre-op, and that in and of itself is depressing. A closet full of clothes that just hang there never to be worn again. Plus with an ostomy that never stops and always leaking (seems to be under control now), I have ruined every piece of clothing I have worn since having this ostomy. My biggest issue is that I have psychologically not adjusted living with an ostomy, and don't see that happening. Combine this with the trauma I sustained from a horrific and severely complicated 3 month hospital stay that nearly claimed my life twice, a week in ICU, a month on TPN, drainage tubes hanging out of me, and other horrific things I endured plus the out of this world pain I suffered, living with an ostomy is nothing shy of a complete nightmare for me. Needless to say, the whole ordeal has left me so traumatized, I have even more so retreated into my shell and hide from the world as much as possible. Sorry for this blurb...don't mean to sound like a negative Nellie. I'd like to be at the point someday where I feel free to go out without a care if my bag/appliance is showing. How women wear a bikini in public with an ostomy is a place I know I'll never be at. What makes living with an ostomy even worse is knowing that if I had a competent surgeon, I wouldn't be in this situation. Now, when I do go out, I wear nothing but oversized pants (splash pants) that make me, with a very small frame, look like a clown. On the issue of sounds...I had a nurse suggest I tell people that it is my stomach growling...seriously? There is no comparison between the 2. I was in the grocery store once, and my stoma decided it was time to act up, while someone was about 6 inches from me in the same aisle. I froze in place so mortified, I was looking for the nearest crack in the floor to crawl into. He didn't appear to hear it, as his head never even turned in my direction, but it still was very humiliating.

Crohn's Disease Diagnosis/1st emergency resection during a massively widespread blackout-August 14th/2003. Ileostomy since August 2016. Cheated death twice in 2016 during a 3 month hospital stay.


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VeganOstomy
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May 3, 2018 1:46 pm  

Hi Songbringer,

Thank you for opening up like that and sharing your difficulties. I'm sure it was difficult for you to admit these things, but I'm glad that you did.

I want you to know that you are not alone with those feelings - believe me, there are many people who are feeling exactly like you are, but they haven't spoken up about it, or have only shared these thoughts in private.

One thing that I would suggest is to speak with a therapist about some of the negative feelings you have. I suspect that you may also be experiencing PTSD because of your surgery experience, but there are ways to overcome these, even if it feels impossible right now.

Some of the other challenges, specifically things like leaks, should be worked on using a stoma nurse as your guide. 

On a more personal note, I was also very self-conscious about my bag showing, but I slowly eased into it and I'm not as shy or embarrassed if it's showing or bulging. Your friend is right, though - unless people are looking, they will not really notice that you have an appliance. I can be in a room of 100 ostomates and still find it difficult to "spot one". 

I do hope and believe that things will get better for you!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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May 3, 2018 2:59 pm  

Any life changing illness is hard to come to terms with and one which needs some form of an aid like an ostomy bag even harder. Leaks, clothes, appearance very difficult problems to over come but their are solutions. Take a browse through the site for helpful advice. on the clothes issue for the ladies fashion offers many different solutions for all ages. Other folk being aware or seeing the bag, next time your in public take a good look around! people come in all shapes and sizes and not all supermodels. people have to use all sorts of aids to get around and most folk won,t even give an ostomy bag swollen up or partly showing a second glance, if they do its really their problem and we cannot put our life on hold just to please them. The better place will come for any one having difficulties, my personal note I remember going clothes shopping after my op. very under weight and sore and this bag thing. I tried on about 20 pairs of trousers and nothing worked. I had to leave without a purchase. I was in a bad way tired upset and not feeling very good. my friend who was with me suggested trying another shop and with much persuasion I did. first pair I tried on fitted and worked perfect. it was only a pair of trousers but it made me feel good!!! I could work with this and folks it will work.

ileostomy 31st August 1994 for Crohns


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sjlovestosing
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May 3, 2018 5:38 pm  

I just want to thank Eric for putting together this video. You are very real in presenting what can and may happen, but so positive in the presenting. This and all the other videos are giving me hope as a future ostomate.  (I am also following your advice so as to not be overwhelmed by all the information - I am taking this one step at a time.)

God bless,

Stella


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VeganOstomy
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May 3, 2018 10:11 pm  

I really appreciate that, sjlovestosing.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Songbringer
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May 4, 2018 7:59 pm  

Yes it was difficult to open up like that. I wouldn't be in the least bit surprised if there is a degree of PTSD. Thank you for the suggestion and for this safe place :)

Crohn's Disease Diagnosis/1st emergency resection during a massively widespread blackout-August 14th/2003. Ileostomy since August 2016. Cheated death twice in 2016 during a 3 month hospital stay.


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Songbringer
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May 4, 2018 8:12 pm  

I feel your frustration about clothing, thank you for sharing, and for the reassurance...you are so right about people being all shapes and sizes. My biggest hurdle/personal battle is that it has really put a damper on what was once a life lived like a gypsy...always active and on the go...now I am at the complete other end of the spectrum. My 1st year with an ostomy was a year from hell. I literally had broken, bleeding skin, oozing peristomal skin that entire time...my whole abdomen under my flange was eaten to raw meat, burning and bleeding. Thankfully that is now all behind me. It has taken me 2 years of trying practically every company's products and practically every style from these companies, trying to find the best flange and the best pouches. Because of my disfigurement, flanges would fall off in sometimes a matter of minutes...they weren't adhering to my scar tissue. So, I finally found one that works, and am hoping they continue on the path they've been going. I use Coloplast's Assura Deep Convex Flanges. They are amazing...they fit every groove, ridge etc like a second skin. Also switch between a hernia belt and an ostomy belt to keep my flange in my place.

Crohn's Disease Diagnosis/1st emergency resection during a massively widespread blackout-August 14th/2003. Ileostomy since August 2016. Cheated death twice in 2016 during a 3 month hospital stay.


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john68
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May 5, 2018 3:40 am  

Hi Songbringer, It sounds like you have come a long way from a rough start to where you are now. you hang in their work on each day to get a bit further. :-D 

ileostomy 31st August 1994 for Crohns


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Robert
 Robert
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September 16, 2018 9:23 am  

"I’ve heard of several people who HATE their stoma, and my heart truly goes out to them"

I hate to tell you this, but I'm one of those who hates his ostomy. I've had mine a little over four years. I lead a seemingly normal life. I can do almost everything I could before I had surgery. With clothing, I've had to make some changes, but generally I've figured out what almost works.

But having an ostomy has destroyed my sex life. During the surgery some nerves were damaged and as I result, I became impotent. What few erections I've had are very weak, short-lived, and totally useless. I've tried Viagra/Cialis and a few other things, but to no avail. I haven't had any sex since my surgery.

At the time I was diagnosed with rectal cancer, my wife and I were going though a divorce. Things simply weren't working out between us and we'd been drifting apart for quite some time. We don't have children, so our divorce was pretty straightforward and we split on good terms. She still came to see me every day when I was in the hospital and helped out during my recovery.

So anyway, I'm four years out from my surgery and again, zero in the sex department. I've tried dating a few times. With two different women, it got as far as a second attempt at intimacy (that is, with both women there were two failed attempts at sex). The second woman gave me the brutal truth with the "You're a nice guy, but...." and she told me that the bag wasn't the issue, but she didn't wan to be in a sexually frustrating relationship and it was best for both of us to break it off now.

I'm only 40 years old and I live a full life otherwise. People keep bugging me about when I'm going to meet someone I don't date anymore, even though I'd like to. Dating is hard enough and having the bag is already one strike against me. What chance do I have with anyone if I 'm impotent?


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VeganOstomy
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September 16, 2018 1:55 pm  

Hi Robert,

Thank you for writing. Impotence is a topic that I have plans to write about, but it requires quite a bit of research first. You aren't the first to ask me about it, and there are many men who are suffering in silence, but I don't want to offer suggestions until I know more about what treatment options are available first.

I will suggest seeking groups (online or off) that focus specifically on supporting men who are impotent. I would also suggest speaking with your doctor about newer treatment options. Viagra and other drugs may help with blood flow issues, but not nerve damage.

I would also invite you to post your questions and concerns directly to my online support group (www.veganostomy.ca/community/) to see if other men who are going through the same challenges can offer some advice and support.

Hang in there!

Eric

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Karen
 Karen
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September 21, 2018 2:32 pm  

Hi Eric,

I don't have an ostomy, but I'm related to someone who has one. I have a question:

To what extent do people with ostomies go to hide them?

Recently my brother and I decided to take a short road trip and we traveled via plane. When we departed from our city, we got thru TSA security very quickly. I made the air travel reservations and because of my job, I was able to get TSA pre-check for our departing flight but for some reason not for the returning flight.

For me, it was no problem. I'm a type-1 diabetic and I use the insulin pump. I'm used to the drill--touch my finger to my site and then touch it to machine and and wait for the green. Re attach my pump.

But going through security, I found out that my brother has an ostomy. I know he had cancer and that he had surgery to remove the tumor five years ago! He had the ostomy since then and has been keeping it a secret (his wife--my sister in law) is the only one who knew about this. When I asked him if Mom and Dad knew, he said no. He further told me not to tell anyone and not to tell his spouse that I knew.

I've been looking stuff up on line about ostomies and the people that have them. Kudos to you for being so open about yours, but my brother seems to want to keep his a secret. How long can he keep this up? Shouldn't he have shared this at least with family members? Or do a lot of people feel ashamed by their ostomies?


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VeganOstomy
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September 21, 2018 3:18 pm  

Hi Karen,

Thank you for taking interest in wanting to learn more.

There are so many variables when it comes to how someone may act once they have ostomy surgery. Some people do feel ashamed, embarrassed, angry, and uncomfortable. Others proudly embrace it.

While I would never look down on your brother for trying to keep it a secret, I feel that it will cause him more hurt and anxiety in the long-run. If his ostomy is temporary, which is often the case, then he may be able to keep it a secret for long enough to have the reversal. But if it's permanent, he may run into situations where not sharing with someone that he has an ostomy may cause more trouble than it's worth.

I don't know much more about your brother, other than that he's your brother. But if he's the type of person who may be receptive to finding support, maybe you could gently tell him that you've come across people with an ostomy online and there's a lot of positivity he could gain from it :)

I will say this: talking openly about having an ostomy isn't very common among men. This has been something I've been trying to change, but whether it's cultural or societal, very few men feel comfortable talking about it. That said, I have many men on my Community Forums and social media is full of guys (of all ages!) who have an ostomy and aren't shy about it!

If your brother is ever open to talking about it - I'm here.

Eric

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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September 21, 2018 3:49 pm  

Hi Karen, Eric is right too many guys bottle all sorts up and when it comes to a head it a far worst problem. This may be an unplanned opportunity your brother has never had. Slow and steady every ones personally is different. wishing him all the best. :-) 

ileostomy 31st August 1994 for Crohns


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dogtalkerer
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September 22, 2018 8:13 pm  

vegan, re read the logic article from your friend you posted.  the comments you are making come directly from  that article.  look at your own membership, then look at UOAA memebership, very very small numbers compared to the vast number of stomas out there.  as the article states, your sample size  is way too small to be making the statements you are making.   the predictions you are making about karens brother sound very biased  and without evidence.

 I've told very few people in the 10yrs I've had the stoma/bag.   I see no faults in doing this nor can I imagine any problems I could  possibly cause myself.   some of us guys , and some women for that matter,  are stronger than others and I always find it funny that the weaker often wish to pull the stronger down with them.  I'm in the middle, and prefer trying to catch up to the stronger than me.

I hide mine cause of the old saying, "outta sight, outta mind" it works well for me.  

 


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