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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.


On the other side of the curtain

I spent some time earlier this year on the other side of the hospital curtain. My best friend went in for emergency surgery. I was thankful that it was a day I was already planning on working from home, so I was able to drop everything to go see her when she woke up in recovery. It brought up a flood of emotions seeing her in that hospital wing, a little loopy from the anesthesia, but still looking beautiful.

hospital surgery recovery ostomies advocacy stephanie hughes bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyThankfully, it was a successful surgery and she is doing great and was even able to leave the hospital just a few hours after the surgery. I spent those few hours there with her and her husband and the nurse who was monitoring everything.

This was one of the few times in my life that I was sitting in a waiting room, unsure of what was happening or going on with someone I really care about. When I went home later, I just crashed. I felt like I had been hit by a bus and there was nothing left. I tried to do some work the best I could, but mostly just curled up under a blanket on my couch and watched Gilmore Girls and eventually fell asleep.

It made me realize how much it takes out of you being the support for someone who is going through this sort of thing. I got a glimpse of what it must have been like for my husband and parents and sisters and friends every time I was admitted to the hospital and after each of my surgeries. It hurts me to think about all of those nights my husband stayed with me at the hospital, or when he had to return home while I was still there. I think about those 25 days I spent in the children’s hospital when I was 13 and can’t even imagine what that must’ve been like for my parents. And while It makes me sad to think of all they went through, it also makes me so thankful. I am thankful that I have such wonderful, loving people in my life that are willing to endure that and to be there for me, no matter how hard it is and no matter how much it takes out of them.

I realized at the beginning of the year that 2014 was the first year I hadn’t had surgery in three years and the first year I had not been admitted to the hospital in over five years. I had a period there where about every other month I was spending at least a night in the hospital, if not more. At that time, I don’t know that I could’ve imagined a period in life where I wouldn’t have to worry about when the next hospitalization might come.

Of course just a couple of months ago I had to deal with that again as I checked myself into the hospital 4 times in 4 weeks due to an intestinal blockage that was complicated by my pregnancy. By the third time I told my husband that I needed to go back to the hospital I could see how difficult it was for him. At times, I think it was harder on him than it was on me.

But during those times, both recently and in years past, through overnight stays and surgeries, I always had an army around me, helping to hold me up and get me through it. And now, I do know that I will never take for granted those people who have put their lives on hold and spent long hours waiting for news from the doctor on behalf of me or sleeping in the most uncomfortable chairs known to man.

Caring for someone with a chronic illness is not an easy thing. Those people have been through a lot. They live in a land of unknowns. For those of us who are dealing with an illness, we at least have a better understanding of what’s going on and we know our bodies well. But for those on the other side of the curtain, there’s little comfort they can find as they wish there was something more they could do, something to make the other person feel better. But they can simply sit and wait. Those of us with a diagnosis are not the only ones living with that disease. Our loved ones are impacted just as much sometimes, just differently. And these people are stronger than we sometimes give them credit for. I, for one, do not know where I would be without them. They give me strength to keep fighting and something worth fighting for.

If I never had Crohn’s disease…

if i never had crohn's disease

If I never had Crohn’s disease, I would never have known how much pain one internal organ can cause.

If I never had Crohn’s disease, I wouldn’t have missed out on so many nights out with friends.

If I never had Crohn’s disease, I wouldn’t know so well the awful sounds and smells that fill a hospital ward.

If I never had Crohn’s disease, I may never have known how far my family would be willing to go and all that they would be willing to do for me.

If I never had Crohn’s disease, I would never have filled my body with medical-grade poison, because it was the lesser of two evils.

If I never had Crohn’s disease, I wouldn’t have spent so many nights crying when I was in middle school because I felt so alone.

If I never had Crohn’s disease, I may never have learned to have true compassion and empathy for what others might be going through that you don’t see.

If I never had Crohn’s disease, I may have spent a good deal of my life wrapped up in petty arguments because I never understood that there are more important things in life.

If I never had Crohn’s disease, I wouldn’t have sped home so many times hoping I could make it to the bathroom.

If I never had Crohn’s disease, I definitely would have had far fewer times where I didn’t make it to the bathroom.

If I never had Crohn’s disease, I may never have realized what a blessing each and every day is.

If I never had Crohn’s disease, I never would have gone through two separate surgeries to remove my colon and my rectum.

If I never had Crohn’s disease, I never would have met so many amazing people who inspire me every day.

If I never had Crohn’s disease, I never would have found my voice in a world where people don’t want to talk about pooping into a bag.

If I never had Crohn’s disease, I wouldn’t have spent a month of my 13th year in the hospital, where I never would have met a wonderful nurse who told me all about China and I never would have become fascinated with that country and its language. Which means I likely never would have attended the University of North Carolina (since I only applied for their Asian studies program… which I didn’t end up doing, but that’s another story for another day) where I never would have met so many awesome people or had such incredible experiences. And I never would have gone out dancing with one of those friends one night and met a guy named Jarrod, who I never would have married and I would not be carrying this incredible gift of a child right now. And only God knows what’s in store for this child and all of the things that will happen because of this new life.

So you see, even if I had the choice to go back and live a life free of Crohn’s disease, I couldn’t do it. This disease has played such an intricate part in the creation of who I am over the past three decades that I do not know who I would be without it. Would I be happier? Maybe, but I doubt it. I have a family and friends who love me and have stood by me through some very difficult times, so I know that they will always be there for me. I have found an incredible community of people who have lived through so much and come out stronger on the other side, and I find them to be the most beautiful people in the world. I have learned that you never know what someone is dealing with behind the scenes, and that has given me patience and taught me to not always take everything at face-value. I have learned to be thankful for everything that you have been given, because you never know what tomorrow will bring. I have learned that sometimes shit happens and life sucks, but it’s what you do in those moments that matters most because that’s what makes you who you are

I realize that what I am saying may be controversial, so if you don’t feel the same way, I completely understand and I can’t blame you one bit. There’s nothing wrong with that. I realize that my story is not everyone’s story. I’m not belittling anyone else’s experience. This is just one girl’s opinion and is by no means a commentary on what anyone else should or shouldn’t do or feel. In fact, not feeling the way I do is probably a much more normal reaction than mine. But this disease has taught me so many things… about myself, about other people and just about life in general.

This disease takes a lot away from you: your energy, your ability to go to the bathroom on your own schedule, your dignity, your immune system, your blood, your feeling of safety, your desires, your goals, some friends, your health, your freedom. But it has also brought me to where I am today and I am so thankful for that. Yes, this disease takes a lot, but I have found that it has given me many things, too. And the things it has given me I would not give up for anything. Not even a healthy colon.

My best advice for new (and old) ostomates

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I have made an entire blog by talking about things to know and understand in the world of ostomies. But if I had to sum up the most important pieces of advice I have for those living with an ostomy, it would come down to these three things: 1. Have a positive attitude, 2. Build a support system, 3. Learn by trial and error.

what you need to know about ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyThe first two are pretty self-explanatory. Staying positive and making the most of the situation is crucial. Let’s be honest, if you’re faced with getting an ostomy, you’ve been dealt a bad hand. And no matter what you do, you can’t change that. So you have a choice: accept what you’ve got and make the decision to continue to live a happy and fulfilling life or not accept it and be miserable. Either way, at the end of the day, you still have the same hand to play, so might as well make the most of it.

Having support around you makes a big difference, as well. For those of you who have family and friends close by who are positive and understanding, consider yourselves blessed. Don’t ever take them for granted. Even though they may not understand everything you go through, having them in your life will help you continue on when times are tough. But regardless of whether you have that support or not, it is also important to have support from others who do understand what you have gone through. Whether these are friends you meet in person at some sort of support group, or others you find through online blogs or groups, their input and support will be invaluable. For years, I didn’t reach out to anyone about living with Crohn’s disease, and I found out later how much I had been missing out on. All of my ostomy and IBD friends hold a very special place in my heart and I would not give up my relationships with them for anything!

And finally… trial and error. Oh my gosh, this is so important! We all have a different story. We’ve all dealt with different symptoms, taken different medications, been through different procedures, and had different surgeries. No two ostomies are alike.
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