Tag Archives: activism

My passion and reason for writing The Stolen Colon.

Will run for ostomy awareness

In just a few short weeks, World Ostomy Day 2016 will be here. And yes, it’s a day for raising awareness, but I think I have found a better way to celebrate the day… And that’s by doing things that I wouldn’t have been able to do prior to getting an ostomy. For me, that has been running.

will run for ostomy awareness 5k resilience

For the past 2 years, I have taken part in the WannaWearOne Ostomy 5K. The first year I did it from out of town as a part of the virtual race and last year I was able to compete in a local race in Durham, NC. (But that isn’t the only local race! Keep reading for more info!) ostomy run race resilience wannawearone This year, the race is taking on a different name: Run for Resilience Ostomy 5K. And I think that’s a very fitting title, because it’s about showing that having an ostomy does not have to stop you from doing whatever you want to do.

Last year’s race was not an easy one for me. I was about 3 months postpartum and I hadn’t been running in a very long time. But it was important to me to take part in this race and to do what I could to show myself and others that having an ostomy was not going to hold me back. I figured I was probably the last person in the race, but amazingly I was not, and I actually ended up winning 3rd place among ostomates in the race! (Check out my LIVE IN ACTION video below!)

So I encourage you this World Ostomy Day to get involved. The Run for Resilience is a great opportunity to do so. (And here’s a Where’s Waldo? opportunity for you: Can you spot me on the Registration page??) The run features races in 5 physical locations–in both the US & the UK–and a virtual race available for everybody to take part. Basically, the virtual race allows you to run wherever you are, while still being a part of the event and the awareness raised. Just be sure to post pictures using #IAmResilient! The races take place on different days during October, so check out the website for what’s happening near you.

Even if running isn’t your thing, find a way to do something. Think about things you couldn’t have done before your surgery. Maybe it is eating a certain food or sitting through a whole movie or going hiking. Find whatever it is and do it! Show yourself and the world that you are resilient and an ostomy is not going to hold you back!

ostomy run race resilience wannawearone


The Stolen Colon turns 4

It was 4 years ago today when I started The Stolen Colon. At the time, I was dealing with some really severe Crohn’s disease symptoms and I wasn’t even sure yet what I was going to do as far as surgery or treatment or anything. I say I wasn’t sure, but really, I think I knew surgery was inevitable, but I wasn’t able to fully admit that quite yet. (I mean, why else would I call my blog “The Stolen Colon” if I didn’t know what was coming??) I remember after leaving the consult with my surgeon to set up the surgery, I asked him how soon I needed to let him know if I wanted to cancel so as to not mess up his schedule too much. I knew I wasn’t going to cancel, but knowing that I wasn’t 100% committed just yet gave me a little peace of mind.

I started this blog because I was scared. I was scared of the surgery and what having an ostomy bag would mean for my relationship, my self-esteem, and just my life from that point on. I can’t remember the particular moment that I decided I wanted to start a blog, but I remember searching for people who had been through this surgery before me. I found a few brave individuals out there who were sharing their stories and I will always be grateful for them. But even then, I didn’t find enough. I remember thinking, “If I have to go through all of this, I at least want it to be helpful to someone else.”

the stolen colon blog post ileostomy crohn's disease inflammatory bowel ulcerative colitis stephanie hughes

I felt very alone during this time. I felt like no one could understand what I was going through and the decision I was having to make. So I started writing about it. It was partly to help myself process everything, and partly because I didn’t want other people to feel as alone as I did. I had no idea at the time the world it would open up to me.

My first post was titled: The blog I didn’t want to write. And that still rings true. I never wanted any of this. I never wanted to be “that girl who blogs about her ostomy.” But in doing so, I realized how many other people could understand what I was going through and had dealt with the same uncertainties I had.

You may also notice that I focused on Crohn’s disease in that first post, because that’s what I knew and what I was already comfortable with. I don’t know that I had much to say about ostomies at the time other than I didn’t want one! It’s amazing to think about how much has changed in just 4 years.

By starting The Stolen Colon, I have been given an opportunity to use what I have learned and experienced and help others not feel the same way I did when I was going through with my surgery. I am so happy that there are many more advocates writing and talking today, and there is a much bigger support network for those living with an ostomy. And while I may not have wanted this, I am glad for where starting this blog has led me to today. And I look forward to where it will go from here.

You had me at “nomenclature”

Inside look at the BioExperience tour

I’ve never been very good at chemistry. I actually do pretty well with math and science, in general, (even though I opted to stick with the humanities) but once you start talking about nomenclature and oxidation I start to lose my train of thought. So I was a little intimidated at the thought of going to a major pharmaceutical lab and learning about what they are doing to develop these incredibly complex biological medications.

Let me take a step back. A few weeks ago, I was invited, along with a number of other IBD bloggers and health activists, to visit Janssen Biotech’s headquarters in Philadelphia for their BioExperience tour of their lab and production facilities. I was really excited for this opportunity because it meant not only that I could learn more about what is being done in the world of IBD treatment, but it also meant that I would have a chance to hang out with some really amazing people. (It also was the first time I spent any time away from my 8-month-old, but that’s another story for another day.)

plevy-janssen janssen biotech bioexperience tour the stolen colon biologics biosimilars ibd inflammatory bowel disease crohn's disease ulcerative colitisOur first stop was the Research & Development facility where we got to speak with some of the minds behind the formulation of inflammatory bowel disease treatments. I was especially looking forward to this part because my former GI – the one who helped me through so much with my Crohn’s disease, including my surgery – actually moved from medical practice a few years ago to head up the IBD research department with Janssen and was one of the people talking with us that day!

So right here, let me say that no matter what you think about pharmaceutical companies, know that there is someone out there who truly cares about those of us living with IBD and is working tirelessly to find treatments, preventative measures and hopefully even one day a cure. I completely vouch for this man and for his passion to help patients.

A lot of the discussion here revolved around the introduction of biosimilars to the pharmaceutical market. Biosimilars have been compared to the generic form of a particular medication, but that’s not actually an accurate comparison. Here’s a quick breakdown:

biosimilars-generic janssen biotech bioexperience tour the stolen colon biologics biosimilars ibd inflammatory bowel disease crohn's disease ulcerative colitis

I think the most important thing to keep in mind is that a generic can used interchangeably with the name brand medication, but that’s not the case with biologics and biosimilars. While somebody who has not been on a biologic and is starting one could be assigned a biosimilar, for someone who has had a good response to a biologic, switching to a biosimilar may not produce the same results. Basically, we just don’t know enough yet about the interchangeability of these medications.

We took a tour of this R&D facility and where the product is formulated and put through clinical trials, giving us the opportunity to see where the process of making biologics begins. We were able to speak with many of the scientists about the work they do at the facility and ask many, many questions. We learned this is a 24-hour, 365-day operation. They literally do not close down for anything.

The same thing goes for their major manufacturing facility. This place takes it a step further as we weren’t able to tour the actual facility, since it’s locked down in order to prevent any contaminants from getting into the product. Seriously, it’s pretty hardcore. In certain parts of the facility, the workers have to don one or more layers of contaminant-free clothing in order to protect the process. And keep in mind, these workers are there for 12-hour shifts and have to change into and out of these gowns each time they leave the protected parts of the facility. That means every time they need to eat, use the restroom or get a drink, they have to de-gown and re-gown after. The employee who demonstrated for us said he usually does it about 6 times each shift. And all of it is done to make sure that the product is contaminant free.

lab-suitThe entire process was fascinating, from the researchers to the men and women who are actually producing the product. It takes about 90-days to make a batch of Remicade, but these scientists have been studying and working with this basis of this product for more than 20 years! So know that a lot has gone into the medications that are available to us today.

It was a great experience getting to see the facilities first-hand and learn more about this process and all that goes into it. (Even if the chemistry involved still went a bit over my head.) It gave me a new appreciation for all of the time and people involved in each infusion of Remicade and any other biologic. And I realize more how important it is for patients with IBD to have some understanding of what biologics and biosimilars are and can discuss their options with their doctor.

Of course, a highlight of the trip was getting to spend it with some amazing advocates, whom I admire so much. The trip was packed full of tours and events, so we didn’t get as much time to simply hang out as I would have liked, but we still managed to have a great time… and look pretty nerdy in the process.

ibd group

*Disclaimer: Janssen Biotech paid for my travel and accommodations to attend the tour. Everything I have written is my own and I was not compensated for my time or for writing this post. It is not my purpose to promote any specific medication, but to encourage everyone to discuss any and all options with their doctor.


Pregnancy with IBD Twitter chat

I know a lot of you followed along with my pregnancy with having an ostomy and IBD, so I am excited to take part in a Twitter chat discussing pregnancy, birth and parenthood while living with IBD as a part of the IBD Social Circle. I will be co-hosting with Amber Tresca of About.com, so we will be able to discuss our personal experiences with our families. Dr. Loftus of Mayo Clinic will be joining, as well, to give us the more scientific and medical perspective.

The Twitter chat will take place next Wednesday, March 9, at 12:00 p.m. EST. You can follow along with the hashtag #IBDSC and by following our Twitter accounts: @smlhughes@AboutIBD / @EdwardLoftus2.

I hope you’ll join us for this chat! We’d love to hear about your experiences and to answer some of your questions, as well.

IBD Social-Circle-TwitterChat 1 Final

**Janssen Biotech Inc. is paying for my time to advise on this chat. All thoughts and opinions expressed will be my own.