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!

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. 

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

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.  

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.

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

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

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: https://comfizz.com/product/support-belt-15cm-unisex-level3/

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

I am also new to this forum AND ileostomy which I got on January 15 2020 in the Montreal area, Quebec. On January the 6th I was sent in ambulance following a Crohn’s crisis, at least it seemed like so. I thought it would be a 2 days stay... Well, things got out of hand quickly and after numerous problems, including pneumonia and serious infection, my Crohn’s had to be shopped which resulted in me having the ileostomy and... just 1 meter of intestines still in my body! Not fun at 68...

Pierre Racine, Laval, QC

@raspout66

Welcome to the forums! It's a shame that you had such an ordeal, but I hope that you've been recovering well. Please, feel free to ask any questions you might have as you adjust to this new lifestyle. 

Hi Raspout66 Welcome, brighter days are ahead.All the best with your recovery. The first while with an ostomy ain’t what it’s gonna be like when you get back to strength 👍

Hi Pierre, an ostomy takes getting used to, but I found that it gets easier to manage before long (and I am thankful for mine). Best wishes for a speedy recovery, LL

@awc19

how do you manage the bag not getting in the way of your pedeling?  I find that if my bag bloats in any way it gets in the way so I try and bike first thing in the morning and not eat which is not ideal.

Hi Kevin, I wore my bag inside of my biking shorts and didn't have any problems. I could sort of adjust it so it wasn't right at the joint so my bag didn't interfere with my leg motion. My bag did not bloat up unless I ate something that was a problem for me. I had my ileostomy reversed in October 2019. Life after an ostomy comes with its on challenges as I now have to be concerned where the bathrooms are on every trip and outing. I had my ileostomy for 7 months and by the time I was able to have it gone was when I felt like I was just figuring out how to live with it. This site was a godsend. All the best to you. 

@awc19...Hi there! Thank you for chiming in here. Your experience will be helpful to anyone who has  reversal. Please, Don't be a stranger!