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Ostomy Chat with Amber Wallace (Part 1): The New Patient Experience  

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VeganOstomy
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March 28, 2018 7:16 am  

I had the pleasure of doing a video interview/chat with a fellow ostomate, Amber Wallace, and I'm so happy to be sharing this new series with you!

In Part 1, we share our experiences of being a new ostomy patient.

For most people, waking up with an ostomy can be scary and stressful. We also share tips on how to better manage those early weeks and months following surgery.

Watch Part 1 below:

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Susan
 Susan
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March 29, 2018 3:53 am  

This was interesting but it would be very informative if you spoke to an Ostomate like me, no YouTube channel just, 64, gained 35 pounds eating foods for thickening output for an Ileostomy and not thin and short waisted and fat rolls and not a perfect body or a perfect Stoma.
I feel out of sorts as no one my age who does not look cute and adorable is on a YouTune video channel.
I feel lost and like there is no one I can really relate to as most people in their videos are young enough to be a Grandchild if I had one.
Where do older people, imperfect, like myself, turn for a feeling of understanding and age appropriate?
Also, I was told not to eat the skin on veggies unless they are steamed to the point of no food value to avoid a blockage. I am not able to eat salad like you do, ever chewed to almost Pate, it dirs not digest.
I need to lose weight and I do not know how since I cannot eat the way I used to. Where does a person turn when my HMO does not cover a lot of DR’s and each visit being $30 is more than I can afford? I can afford one specialist a month.
I still cannot work. ( I am on a low fixed income and I feel outbof the loop so to speak)


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VeganOstomy
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March 29, 2018 5:32 pm  

Hi again, Susan. Were you able to call Peggy, from the group that offers patient mentors? If you can't find a local group, I suggest trying to start one! When I visit the local group, I'd say that the vast majority of people there are 60+, so you really should have no trouble finding people (although, they may not all be online).

In fact, the vast majority of people who have an ostomy are over the age of 60, so while I can understand that you might feel isolated online, I can assure you that you are not alone.

The UOAA is the national charity that you should be in contact with.

They have the resources that I do not have, and people like Peggy should be able to help.

Re: doctor's visits, I don't know the US healthcare system, but I would also ask the UOAA if they can help or if they know a patient group that can help low/no-income individuals.

There are help and support for you out there, so please make use of them.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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AMS
 AMS
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March 30, 2018 11:59 am  

I wasn't surprised after surgery about my ostomy but my whole journey of you have cancer, we can't save your rectum, surgery is booked for two weeks from now, visit with my ostomy nurse, surgery, infection, bag problems, chemo....has been exhausting.  It seems my learning curve right now is trying to find a better bagging system than the Hollister.  The stupid bag gets all fuzzy as I move stool to the bottom. I hate how the Hollister bag gets super wet when I shower with it on...and I have to shower with it on.  My stoma seems to know when it is exposed and decides to cause me nothing but trouble.  I have tried to time bag changes and such but I have not found a quiet time for that thing.  It seems to have a mind of it's own.

Susan, I'm 45 so I understand seeing all these cute women showing off cute clothes and how they handle it.  The older generation isn't as tech savvy as the younger generation which is probably why you don't see a lot of the older generation online.  I agree with Eric about seeking out an ostomy support group.  I know there is one in my area that meets every month.

My skin isn't perfect either.  Three 9 pound babies took care of that.  I've found that a larger ring that I tear and then double up to cover a ditch on the right side of my stoma takes care of most leaks...fingers crossed.  I've also figured out that my flange lasts max 3 days.  That was trial and error.

I'm really at the point of not caring who knows that I have colostomy.  If someone comments on it then I'll do my best to educate them.  This ostomy saved my life.  I don't have bad feelings towards it.  And thankfully my husband has been very supportive.


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john68
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March 31, 2018 12:01 pm  

I have to say I have really enjoyed this interview, I can understand to frustration that some people have with a stoma and for me to see people of all ages shapes sizes its encouraging. Also Amber and Eric have also said that they to have had problems and set backs. Please any one feeling upset or down keep battling on it will be worth it.

ileostomy 31st August 1994 for Crohns


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Marcie
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March 31, 2018 12:09 pm  

As we are all one here as family, we do find our way..  For me it was finding my way over and over.. but I am now secure with my stoma.. (don't like it still) but after many try's and help from Eric etc. I am moving on !!  Just look backwards and see your success !! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Dona
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March 31, 2018 6:07 pm  

Amber and Eric,

Thanks for posting this video chat. It was interesting and I just have a couple of points to make.

When we first get our new ostomies I think a lot of us are inundated with 'stuff' as you remarked on. Some companies offer very good starter packages ( hollister sent me a good one), some very bad ( one box I got had only an elastic ostomy belt..., another just a small bottle of powder, I had no clue what to do with either of them). One thing we all have to realize especially when we are starting out is that we are a commodity to be marketed to. A potential revenue stream for whatever company gets our business. I am fortunate enough to be on medicare  so personally I am covered but it is a years long revenue stream for the big manufacturers of ostomy supplies and the services that provide them ( mine are though Shield). I do think we all need to be aware of this when we are given so many things right after our surgeries. ( not that people aren't trying to help out ..but our purchases add up to lots of money over the decades that we will need use these .)

On waking up after THE surgery.

I too was surprised as the 'thing' on me looked nothing like what I expected. What I wasn't clued in to was that right after surgery a different kind of appliance was used ( at least on me). It was much bigger and stuck out more as it had an extra ring above my new stoma to protect it). It was also kind of pasted down .. looked terrible. Once it was explained to me I was relieved, but it would have helped knowing beforehand.

Acceptance.

I too had no trouble accepting the need for this surgery. I, like both of you, was very sick and would have died without it. I wish I had gotten it sooner. I think part of the problem as it is the option of last resort. Right at the bottom of the list of treatments the medical profession has to offer for  most of our conditions ( I realize we get here different ways), but even the surgeons and G.I. doctors are kind of reluctant to talk about the surgical option right away. I went through years of immune suppressants and then, when surgery was first talked about it was always broached as a TEMPORARY condition. It does not turn out to be  so for many of us.

This is all just from my own experience. I do not know the numbers . How many of us who present with IBD end up with ostomies, how many can be managed with infusions and drugs, how many people who get ostomies eventually have reversals?

And Eric .. HOW many of us are living with  an osotmy? ( In my case, also quite happily).

Thanks again.

 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Kerby
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March 31, 2018 11:15 pm  

Very well said.  


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VeganOstomy
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April 1, 2018 12:33 am  

Dona, thank you for posting that! Part two will get into acceptance and coping, so I'm excited to publish that soon!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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April 1, 2018 3:59 am  

Any one who has an ostomy unexpected will have a harder road to travel rather than the patient who has been ill for years. we get used to the idea as it will solve the problem and the pouch is a relieve. My wobble was about 6 months before surgery when the ostomy was talked about! in the end it was a scramble to get it done but I was happy/content a relief from pain and sickness. Healing starts in the mind if we can get our heads around what has happened it will be the first step!! I am pleased with my bag, yep their are days when its just a (       ) pain but I have to remember the bad old days! In 1994 when I joined the ostomy ranks the world was a different place, no internet for a start, not even every many mobile phones! and help was very limited. but it only took a couple of good folk to put me back on my feet. My Doctor, Surgeon and one nurse who seen to me at home plus one other guy  I never met. he was a lad who had had a bag for 3 years at that time and around my age. the nurse give me his number and I called him. the 30 min call we had give me probably the tips I needed to start my recovery. Just think what we have now, if any body had said back then I could take advice from a Guy called Eric in Canada and connect with dozens of folk half way round the world it would have asked "what they where smoking" Life can be great just bare with it, take advice if ye fall over get back up keep trying.

ileostomy 31st August 1994 for Crohns


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Dan
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April 1, 2018 2:23 pm  

Being that my rectal cancer was just in the beginning stage, I had no time to really think what do I want to do, especially when I was told I would not need any chemo or radiation, if we went for it quick. With in a few weeks I had my Colostomy, and I set myself up to learn as much as I can about it, and learn to deal with it. My Colostomy is for life time, my rectum was removed, and I am doing great.
Amber and Eric did a great job with this video, I have been watching Eric's videos since before my surgery, and learned a lot from him. Thank you Eric for this great website.
Looking forward for 2nd part of video.


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VeganOstomy
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April 1, 2018 5:02 pm  

Hi Dan, that's so great that you've been able to bounce back after your surgery. The education piece is so important and I'm glad you made the decision to learn more. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Kerby
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April 1, 2018 7:03 pm  

Yes, thank you Eric!!  


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Kerby
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April 1, 2018 7:17 pm  

I'm a 71 year younger Female. My body?  Not worried.  I'm glad I'm alive. I to had a fast diagnosis of rectal cancer. Chem/ Rad. In Hospital, back home. It was a Tornado.. I'm from Oklahoma. A the reading and few days in Hospital dies not prepare us for hands on. I'm like, how can I do this?  Keep this up?  I ran thru every emotion. I live in the United States. I'm lucky to have insurance but was on Medicaid at one time. Medicaid paid for all my expenses, everything. Look up your nearest office and get an appt. Things will get better. This is a great place to start. I was scared, tired, a wreck. Thanks to Vegan Ostomy I became a more confident Ostimate. I had my surgery in Nov. There's alot of knowledge to be learned and listened. Your not alone. 


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Kathy MacPherson
 Kathy MacPherson
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April 8, 2018 8:23 pm  

Most of what I discovered about having the "New patient experience" was through all the You Tube videos and reading the comments, and my own trials, failures and successes. Having found out that my hospital, surgeon and visiting nurses were all contracted to Hollister, I never even knew about other (AND BETTER) companies and products to use - and that they would send different multiple different samples to try until I found one that works for me. When I confronted my visiting nurse, she poo pooed all other products and told me she couldn't talk about them. Hmmmm. Now that I have found one that totally works for me, I don't have to buy all the other ancillary products (pastes, rings, wipes, etc.) and am saving Medicare and myself loads of money and shelf space. I only have to order my one-piece pouches, Brava strips (for my own peace of mind), and Osto EZ Vents. I have no skin problems anymore or problems with adhesives sticking to the skin when doing a change of pouch. I think that is something that should be talked about in advocacy groups - especially for new patients who are just trying to find a way to live with an ostomy. I did the trial and error with products and it paid off for me in the end. Just my 2 cents worth and thanks to all who have shared their experiences.


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VeganOstomy
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April 8, 2018 8:35 pm  

Hi Kathy ,

I have definitely heard of the problems caused by doctors and nurses who are bound by contracts. It does patients a huge disservice when the most optimal products aren't being suggested because they come from a different brand. 

I'm glad that new patients can learn about these other products through people who aren't bound by these limitations 👌

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
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April 8, 2018 8:47 pm  

Kathy, 2 cents adds up !! We are all paying our dues here.. Never mind a collection of thoughts and mostly understanding's.  Mysef=lf, it will be 4 years, doing better.  But as I read on, and I experance anything that show up on here, I am ready.  Great blog huh?  

Welcome new friend!!!!!!!!!!!!! 

 

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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