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37uclady
(@37uclady)
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Joined: 2 months ago
Posts: 3
11/06/2019 7:41 pm  

Hi Everyone,  I was hospitalized in 2016 when oral medicine was no longer an option to treat my UC. I was perdnisone dependent and started Humira. I had a life threatening drug reaction to the Humira and developed interstital lung disease.  Fortunately I survived having a great Pulmonologist! I underwent a lung procedure and 8 months of aggressive prednisone treatment. After an exhausting 37 year battle with my ulcerative colitis in Jan 2019 I had a total proctocolectomy with an ileostomy. I'm thankful to be here and a part of your forum. Thank you for all of the things you share that I learn from.

 God bless you all.  37uclady


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VeganOstomy
(@veganostomy)
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Posts: 2343
11/06/2019 9:39 pm  

Welcome, 37uclady!

Thank you for sharing your story. That sounds like quite an ordeal! I'm glad you're here and I hope your journey moving forward is a positive one!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
(@squeakyandliza)
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Joined: 3 months ago
Posts: 141
11/06/2019 10:36 pm  

Welcome 37!!

I am relatively new to this site too. It has been very helpful and the members very friendly. 

My situation is sort of the opposite. I went by ambulance to the ER and had emergency surgery to remove my colon and get my ileostomy. Then I was diagnosed with Crohn's/UC. They weren't sure which it was but said they would treat with Humira either way. 

How are things going with your ileostomy so far?  Have you named it? Mine is Squeaky. 


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john68
(@john68)
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Posts: 1311
12/06/2019 4:41 am  

Hi 37uclady, welcome, it’s been a long road and you have survived the journey. The best for a healthy future 

ileostomy 31st August 1994 for Crohns


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Raine
(@raine)
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Joined: 1 year ago
Posts: 55
12/06/2019 7:54 am  

Welcome to VO I hope you find lots of information and support here.

BTW, it seems we've been on the same path. I was diagnosed with crohns 37 yrs ago and had a proctocolectomy last year.  

Raine


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LK
 LK
(@dlkfiretruck)
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Posts: 529
12/06/2019 11:49 am  

37uclady...Welcome to this site. I can certainly relate to your long journey. My diagnoses is still being thrown around after 50 yrs. Of trials often by fire!  You are certainly in the right place here.  Chime in any time to ask or to help.  All the best and heal well.

Linda


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37uclady
(@37uclady)
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Joined: 2 months ago
Posts: 3
12/06/2019 3:48 pm  

Thank you VO and everyone for the warm welcome. I look forward to connecting with each of you as we live the ostomate journey. 

I'm doing well as newer ostomate but in need of some advice. I'm in real need of a stoma guard but I'm not sure which one will work best for me. I developed a parastomal hernia under my ileostomy. It is small and mostly on the top side of my stoma. Never the less it is causing me discomfort.  As a curvy lady now with a small lump I use the small CT18511 Coloplast SenSura Mio Convex Flip 2pcs barrier.         I tried just wearing the Coloplast ostomy belt but it wasn't enough support.  

      After seeing my surgeon and being told not to lift more than 15-20 lbs the rest of my life and to wear a parastomal hernia support belt my CWON RN fitted me for the NU-Hope hernia belt. I have been wearing Nu-Hope the belt for the last month but I really don't like the pressure from the Nu-Hope parastomal hernia belt but it is the only support I have. Now that I have my barrier and hernia belt I really need to get a stoma guard that will work with what I use. 

I know how uniquely different we all are but there are so many of us that I'm hoping someone out there similar to me will share which hernia belt with a stoma guard works best for them.                                                                                                                37uclady

 

 


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Awc19
(@awc19)
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Joined: 5 months ago
Posts: 20
13/06/2019 9:13 am  

Have you looked at Eric's video and article about stoma guards, I am only 2 1/2 months into my ileostomy journey and I ride bikes so I needed a stoma guard. I got the one that is the least expensive but got one of the best reviews. The company was quick to send it and it came with 3 different sizes of collars to accommodate different wafers and bags. 

It is the Sure Guard brand. I don't know if it would work for your situation but if not, maybe one of the other ones he reviews would be right for you.

Good luck,

Alice

Alice


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 2343
13/06/2019 11:01 am  

Hi 37uclady, 

Hernias can be complicated on their own, and some improvisation may be required to find something that works for you as both a stoma guard and support band. 

Comfizz has products that come to mind, although, they may not ship everywhere. 

I product like this might be what you are looking for:

Support Belt 15cm in Level 3 Support – Unisex

 

 

1560438076-15cm-support-belts.jpg

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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37uclady
(@37uclady)
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Joined: 2 months ago
Posts: 3
14/06/2019 12:49 am  

VO and Alice thank you for your response. Yes, I watched all of Eric's videos before and some again after my surgery. Thank you Eric for being so open with your life's journey. You are a great source of knowledge and support for ostomates around the world. Thanks to your video on stoma guards I knew exactly what I wanted to order but now I'm looking at what is available with a whole different perspective. Thank you both for your recommendations. I appreciate all of your help.

37uclady

 


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