I have Ulcerative Colitis (also commonly referred to, or confused with Crohn’s). There is a big difference between the two, but they are commonly discussed in the same conversations. Today I will be sharing my personal and private story with you and the rest of the world, and how it’s affected both my personal and business life.
Before doing so, I must first say thank you to everyone close to me that has made living with this condition possible. Especially my wife Reena, my immediate family and the IBD team at Mount Sinai. Outside of them, not many people even knew I had the condition.
In addition to thanking those who have helped me along the way, I hope by sharing my story, I can help others find some information, resources or hope for their UC/Crohn’s (IBD) issues as well, as this is a silent disease that isn’t seen on the outside and not commonly openly discussed by those who live with it. This can be attributed to the shame and stigma that may come along with having an IBD diagnosis.
Before we jump into my own experience with Colitis, I recommend you watch the short video (yet detailed) video below that explains what it is, how it affects the body and the current options for remission and surgery in the world today.
For the most part, UC is a horrible auto-immune disease and one that people usually do not talk about. You’ve likely also seen commercials for UC medications on television, pushing drugs like Humira and Entyvio. I’ve had the pleasure of being on both; Humira worked for a while, but I had no positive effects from Entyvio after 9 months at all. Even while being on these medications, I was still taking probiotics and various amounts of prescribed Prednisone daily, between 20-40mg. Yes, I’ve also tried the holistic route and clean organic eating, with little to no success. I’ve tried them all… and will go into detail on all of that in this post today.
I’ve personally been diagnosed with UC for over 17 years now, and there is no cure (except surgery to remove the lower portion of the colon) — there is only the hope to go into remission. While there is ‘no cure’, there are several medications on the market to try and control the disease. The option is also there to get an intensive surgery to remove the lower portion of the colon and rectum (thus, removing all of the inflammation being caused by colitis), but this is usually the last resort and not one that I (or my doctors) feel I am at yet. This is not also simple surgery with a quick recovery, you will need multiple surgeries which takes place over a 9-to-12 month time period.
It’s also a tricky disease, as it’s one not really seen on the outside of the body, but is continually attacking the colon and digestion system of anyone who has it. In my own scenario, I’ve constantly been bleeding and getting sicker and sicker for the past 12+ months and my body feels as though it is attacking itself, leaving me constantly in pain. With little improvement in sight and lots of recommended remedies/medications continually failing, it’s been quite a strenuous and debilitating process.
Living with UC is a complete nightmare in itself, as it’s not just a matter of constant internal bleeding, it’s also an extremely weakened immune system while also taking a ton of medications in the process. For myself, it’s been somewhat tolerable, as I have the luxury of working from home, but I can’t imagine what it would be like for anyone with a 9-5 job or not having easy access to a bathroom at any given time. If this wasn’t the case, I would likely have already done the colectomy surgery to remove a portion of the colon.
Not only is UC something that controls how you live, eat and think, it actually controls every single aspect of your life. You need to prepare and know where you are going, how long you will be there, what type of bathroom access you might have and what type of food will be available. Even when in remission, a flare up can happen at any time — without any cause or reason (though it’s often associated with stress and eating habits).
One of the most common and upsetting things for people with UC or Crohns is how other people see (or don’t see it). Without having or understanding the disease, it’s easy to think it’s simply an ‘eating’ or ‘life choices’ issue, but it’s actually not. Yes, everyone has ‘stomach issues’, but UC and Crohn’s are a completely different story, and it’s tough to relate to anyone that has it if you haven’t experienced it firsthand.
This could break into a whole new story on its own, but I won’t go into it at this time.
It was well over a decade ago that I first started experiencing the symptoms of UC. I remember being on an Affiliate Marketing cruise and shockingly seeing blood in the toilet after going to the bathroom. Of course, when seeing something like this, you hope it quickly goes away and that’s that. However, that wasn’t the case, and it was only the beginning.
From here we would visit a wide range of doctors over the years. Some would put me on 12-18 pills of Asacol per day, while other holistic doctors would try their own remedies and infuse me with vitamins and medicines (which would only seem to provide temporary 24-48 hour solutions). For the most part, none of these would work. Then I came across an over the counter medicine called Digestive Advantage, which worked really well for a while, but was then discontinued. Even if it was still around, it would have only been a temporary solution.
This process went on for a while and it just seemed like I was dealing with the problems of UC, while occasionally going into remission and hoping for the best.
A few years ago I met with a new local GI (gastroenterologist) and they recommended putting me on a biological treatment, Humira, a self-injection I would have to take each month. This actually worked quite well for roughly 2-3 years, then ultimately my body became immune to it as well. One of the risks of these biological treatments is that your body can build up antibodies at any time, which makes the medication stop working. After that, we recently tried Entyvio, which had to be taken through an hour-long infusion every 2, 4 or 8 weeks depending on how well it was working with one’s body. In my case, I was on Entyvio for roughly 9 months and never experienced any relief, thus leading me to feel sicker as each month went by.
It’s also important to mention here that it’s not just a matter of being in pain and constantly bleeding, the main concern is the increased risk of cancer as a result of the untreated inflammation brought on by Colitis.
Just a couple weeks ago I had a new issue arise. It was a severe case of hemorrhoids (or so I thought). It got so bad that I had to go to the local hospital and my GI doctor — both leaving me with little guidance on what the real underlying problem was. I was getting extremely bad fevers, horrible pains in my stomach and the effects of UC were still getting worse on top of all of this.
Since no one local had an answer, it was time to call my contact at Mount Sinai. After doing so, Dr. Ungaro (my doctor), contacted me immediately and said to come into the ER at Mount Sinai and have everything looked at by the IBD team.
The connection to Dr. Ungaro and the Mount Sinai team would prove to be of utmost importance. In addition to being an expert in IBD, everyone at Mount Sinai always went out of their way to answer any questions I had, and always spent more than enough time to make sure I was always confident in what they had to say.
Before jumping into the next phase of my progression and trying to find remission from UC, we must first cover how I ended up at Mount Sinai (the best IBD center in the world) and the importance of always having connections and making the right decisions to go with only the best when it comes to your health.
Just like in business, if you want to work with the best, you need to learn from the best. The same holds true for your health and getting to the right health physicians. Of course, there are always going to be great local doctors, but there are also going to be hotspots for the best doctors in the world. A good way to think of this is that your local doctor probably sees hundreds of cases that might be similar to yours, however, when you go to one of the best centers in the world, they likely see thousands or even millions of relatable cases. When it comes to IBD or anything relating to the digestive system, Mount Sinai in New York City is the place to be.
In addition to the outstanding expertise of Dr.Ungaro, Jean-Frederic Colombel, MD, director of the IBD Center and a world-renowned doctor with over 20 years of experience in IBD, would also be looking over my case and meeting with me while in the hospital.
How I gained a connection to a doctor at Mount Sinai was quite unique. My wife works as a drug and alcohol counselor and the psychiatrist she works with has a son-in-law in the IBD space, who knew a doctor at Mount Sinai. Roughly two months ago when I was having a really bad flare up, we had a call with him and he generously contacted the MS IBD team and set up an appointment. This is when I first met with Dr. Ungaro and the IBD team.
Among the many experts and doctors on the Mount Sinai IBD team, I also had the pleasure of meeting with Dr. Greenstein, who was very active in my case and time at the hospital as well. You can read an article on his expertise and studies in a recent NY Daily News article. (more on my visit to Mount Sinai to follow…)
Long story short, we were able to get a phone call and meeting together and that was the start of an extremely important connection and process.
With my current flare up already in a pretty bad state and several misdiagnoses on the hemorrhoids issue, it was time to visit Mount Sinai Emergency Room in New York. Timely enough, I also had a breakout of shingles that morning (which is another fun auto-immune disease that attacks the body when it’s usually in a weakened state).
We arrived around noon to MS and the first several hours were pretty rough, as this was just the general ER area. The one surprising thing was that an IBD doctor was sent over after we were admitted, as she was notified by Dr. Ungaro that morning that I would be coming. This type of super dedication and teamwork is key for the IBD team at Mount Sinai, which is why they are the best in the world at it. Several doctors would be examining over me in the ER, then I would later get a CT-SCAN.
It wasn’t until later that night I was moved to another room (private room because of the shingles diagnosis as well) and was told I would need to take prep for a colonoscopy tomorrow (if you’ve had one, you already know the horrible drink process to clean out your system). That night I ended up having a 102 fever, which I believe was as a result of the prep process on my body and also the medicine from the CT-Scan I also had to take.
The following morning, the colonoscopy took place and afterward I was in another isolation room with Reena and my Father while we waited for a room to open up. Dr. Ungaro happened to stop by and was able to discuss the results of the colonoscopy. He said the average inflammation of a person is around a 5, and mine was around 190. I knew my colitis was pretty bad and something I dealt with on a daily basis, but it was definitely good that I was in the best hospital in the world to take care of the current situation.
With the CT-Scan and colonoscopy now done, along with several discussions and diagnosis from the IBD team (literally 8+ of the world’s best doctors and surgeons), it was recommended to put me on Remicade (another alternative to Humira/Entyvio, but with a good history of success). However, they still had to take care of the shingles first and do some other testing in the process. I was then moved to my own isolation room, where the process would soon take place and Remicade would be given through an infusion over the next two days.
Quick side note… all of the nurses at Mount Sinai have also been amazing. Having stayed at the hospital for several days, you never know how quickly things can change with a new nurse switching every 12 hours. A good/bad nurse makes all the difference in the world, and I was fortunate enough to have some of the most amazing and attentive nurses while I was there. Special thanks to Elizabeth, Ora, Susan, Alex, Corie, Heidi, Arjay, Paula and Ralston to name a few — all on the IBD floor.
As I’m writing this now, I was just released from the hospital less than 24 hours ago. This was after being told my inflammation levels are down to around 40 (after being near 200), and I’m personally feeling a lot better in the process. The Remicade is now in my system and appears to be going well. I will be working closely with the IBD team at Mount Sinai to stay on top of the issue at all times. It’s definitely great to be back home again, while also knowing their team is there should things worsen again.
So what… I have colitis. What does that mean? At the end of the day, it means I have a condition that I need to take care of and monitor it closely. This isn’t a sob story or a way to try and gain attention… instead, it’s an outlet to share my story with the rest of the world. At the same time, I’ve been given a powerful outlet through this blog and can reach thousands of people in the process. By sharing my own story, I hope to inspire others with Colitis and Crohn’s to let them know they are not alone and to not stay silent if they have these same struggles.
AND… when it does come to getting help, make sure to get as many diagnoses as possible and try to work with the best doctors in the world to find a solution. Never settle with a single diagnosis, as not all doctors are the same, nor is their experience or the knowledge of the teams working around them.
On the entrepreneurship side, as I mentioned earlier, I never would have been able to live with UC if I had a real 9-5 job or worked outside of the home. I’ve been fortunate enough to work from the comfort of my own home, which truly means so much more than just being your own boss or having different financial opportunities. Life simply wouldn’t be the same, nor how I would be dealing with the disease over the past several years.
At the end of the day, your health and family are really all that matters in the life. I know a lot of bloggers and marketers will show off their expensive cars and lifestyles, but that is something I’ve never really cared about — even less after everything we’ve been through after Superstorm Sandy. Family and friends are everything and they have all been here for me through this crazy process.
Having now shared my story with the world, feel free to contact me with any questions or comments you might have. I’ve always used this blog as a platform for not just my business, but also my life and it’s happenings. You never know who is ready, and hopefully, this provides some light not just for those with UC/Crohn’s, but for any horrible health conditions and problems that might be out there.
I’m definitely not cured of UC and it’s a long journey ahead. However, I’m extremely excited and happy to be in the place where I’m at right now while feeling better each day. In addition, being confident that I’m in the best hands and working with the most experienced and empathetic team of doctors in the world.
Thank you, everyone.
My name is Zac Johnson and I have been an online entrepreneur for the past 18 years and blogger since 2007. This is my personal blog and I welcome you to the site. In full disclosure, it is safe to assume that I am benefiting financially or otherwise from everything you click on, read, or look at while on my website.
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