Reddit Ask Me Anything (AMA)- Crohn’s & Colitis Awareness Week!

Every year December 1st-7th is IBD Awareness Week which is a week dedicated to raising awareness for IBD and bringing attention to those affected by the disease. During this, there are some amazing events going on through the CCFA and other advocates that include Facebook Live Chats, Twitter Chats and much more!

This year I wanted to do something I have not done before in honor of IBD Awareness Week, and that is a Reddit Ask Me Anything session. If you are unfamiliar with this reddit.com has a section titled “AMA” where people such as celebrities, scientists, advocates.. you name it do these sessions and individuals come in and submit questions and the person hosting the session answer them. It’s a cool way to be able to talk with people and ask whatever you want.

The Reddit AMA I would like to do involves being an IBD patient and pursuing an advanced degree and the rigors and stress that come along with it and how we manage our disease while dealing with everything else. I will have a guest with me who is a Ph.D. candidate in Microbiology who also has Ulcerative Colitis. The purpose of the session is to raise awareness for IBD, give a glimpse into what it’s like being in a hard academic environment/program and succeeding while managing IBD. Not only for those who are pursuing something like this but for any patient trying to get through schooling, work or life. I think there is a lack of patients in these very stressful settings sharing their experiences and I would like to change that! You guys know what I do I am a Master’s Student pursuing a degree in Biology Research and some of my graduate level work has been studying gut bacteria and how they affect intestinal cells and relate to IBD. Now, here is the biography of my Co-Host.

“My name is Bently Shuster. I am a 4th year Microbiology Ph.D. at NYU studying properties of spore-forming bacteria in various lab and natural isolates. My research is focused on the phenotypes of the outermost layers of the spore and how they vary in their respective environments. While I am relatively on track, I was diagnosed with Ulcerative Colitis at the beginning of my second year. I spent all my time, when not at the lab or in the classroom, visiting doctors to address how sick I had become during my first year. I was originally diagnosed with endometriosis and IBS but after a laparoscopic surgery to remove the excess endometrial cells, my symptoms did not subside. A year and several doctors later, I could begin medication to help me function like a human while attempting to slave over my thesis. I hope I can help answer any questions as to what it is like to try to balance a Ph.D. with a chronic illness. Whether it is about trying to talk to your professors about the time you may need away, to finding someone who will be supportive and encouraging in your field, despite the handicap, it is always good to know that there is a way. I firmly believe that we can use our disabilities to inspire our work even if we are occasionally slower than our peers. The Reddit AMA will be held on Saturday, December 3rd. You will be able to submit your questions all throughout the day, and we will be answering them as they come. It should be a fun experience and cool way to raise awareness for IBD and give a glimpse of what it’s like to be in this environment.”

The Reddit AMA will be held on Saturday, December 3rd. You will be able to submit your questions all throughout the day, and we will be answering them as they come. It should be a fun experience and cool way to raise awareness for IBD and give a glimpse of what it’s like to be in this environment.

on62948

World Osteoporosis Day 2016: Love Your Bones.

Every year on October 20th is World Osteoporosis day. This day is dedicated to raising awareness about the brittle bone disease Osteoporosis. This year’s theme is Love your bones! I know this may seem a little odd to write a post about a different disease that is not IBD, but I was recently diagnosed with Osteoporosis due to steroid (prednisone) use and want to spread some awareness about this disease and what better day than a day dedicated to Osteoporosis?

What is Osteoporosis?

Osteoporosis is a disease characterized by brittle bones and increased risk of fractures that typically affects older post-menopausal women. However, the disease can be caused by other factors such as prednisone use. This is relevant to IBD patients because prednisone use is common. If you have ever been on prednisone for any amount of time, you know the awful side effects that come with taking this drug. It can get you out of a flare quickly and has saved me many times from horrible flares, but it can cause some serious damage especially to the bones. I have shared my story about having four total hip replacements by age 24 due to prednisone causing a rare bone disease called avascular necrosis, now I have steroid-induced osteoporosis.

Who is at risk?

Any patient who has been on prednisone needs to have a bone scan. Getting a baseline bone scan before starting prednisone would be the best option, but if not your bones need to be monitored. A lot of times it is not requested to have the test performed as often as it should be so you the patient need to advocate for yourself to make sure your bones are being monitored. That is what World Osteoporosis is about, urging patients to take care of their bones whether you are on steroids or already have osteoporosis there are ways to make sure you are doing everything you can to have healthy bones or rebuild those bones.

How to maintain healthy bones.

Here are some tips to help love your bones:

1.) Get a bone scan! This is one of the most important things you can do if you are at risk for osteoporosis or have been on prednisone for any amount of time. Ask your physician about getting tested!

2.) Get your vitamin D and calcium levels checked. Often IBD patients are malnourished because of the disease, and this can lead to low levels of essential nutrients and also low vitamin D and calcium which are important for bone health.

3.) Diet and Exercise. Now, I know this is a tough one for IBD patients because often we can’t eat much or tolerate certain foods and do not have the energy to exercise but if you already have osteoporosis this is critical. Even if it is adding in nutritional supplements and doing the low-level exercise once a week is better than not doing anything at all.

4.) Being aware of your risk for osteoporosis and talking with your physician. If you have been on steroids or are considering starting steroids make sure you tell your doctor you would like to have your bones checked and monitored. Osteoporosis is not painful unless you fracture a bone and sometimes breaking a bone is when you find out you have the disease so being proactive about it is critical in the prevention and managing the disease.

Osteoporosis can be a serious illness if not treated which makes it essential to be proactive about bone health if you are at risk for the disease. I have recently started remineralization medications and also joined a gym to help with my disease and to prevent fractures hopefully. Prednisone can be a life-saving drug, and I would take it again (still do some days) if it meant keeping me from surgery and hospitalizations, but with that comes ensuring we as patients are proactive about our bone health. So on this World Osteoporosis Day 2016, I urge you to be proactive in your bone health and speak with your physician about getting a bone density scan and checking your vitamin D and calcium levels. Love them bones!

on62948

WeGo Health Activist Awards.

https://badges.wegohealth.com/ha-awards-2016?referrer=vfxKpQwLctOz0BFxWjHVdw

https://badges.wegohealth.com/ha-awards-2016?referrer=OOD932bZgTqwhSCiXjUfWQ

Every year WeGo Health puts on the Health Activist awards where you nominate a health advocate in your journey / community for an award to recognize them for making a difference in the community. This year my website,facebook page and twitter have been nominated for awards!

I am extremely excited and humbled for these nominations as there are many days I wonder if I am making a difference and helping patients. I and my advocacy work would not be where it is today without YOU the patients. Also, my IBD patient advocate partner in crime Jaime Weinstein who is the best partner in the world works hard if not harder than me for the community!

The awards are now in the “Endorsement” phase where you go and endorse me, which is basically voting for me to be in the finals. I do not usually do this, but because I am up for 4 awards I would love to win one for the community. NOTE: You do have to endorse me 4 times, once in each category. So, here are the links if you would like to endorse me. I am seriously humbled and honored to be in this position to truly try and make a difference in the IBD community and IBD patients lives. Thank you guys so much!

SupportIBD Endorsement Link.

HoneyColony Equilibrium Review

Disclaimer: I have been given this product as part of a product review through theChronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. Any products I review will always be honest reviews good or bad. SupportIBD or Aaron Blocker cannot be held responsible for any products reviewed on my site that you choose to use. Review Disclaimer.

As a graduate student in a rigorous scientific program I am ALWAYS looking for something that can give me more energy. Whether it is staying up late to study, getting up extremely early to get to the research lab or just generally needing to wake up I need something. As a Crohn’s Disease patient though I have to be extremely careful with what I put in my body because I never know how it will affect my disease. I drink A LOT of coffee which is not the best thing for my disease but it does give me energy. I am constantly searching for some type of natural substitute that will have the same effect as coffee in giving me energy or even something better than that. When I was offered to review the HoneyColony Equilibrium Energy Supplement I Jumped at the opportunity because it is an all natural, honey-based product.

Ordering and Packagaing.

Now, I did not order this product myself it was just sent to me from the company but I did check out the website itself and the process of ordering it to see how easy it would be. The website is very well organized and easy to find the product you are looking for or just needing general information! The packaging was simple just a standard box and bubble wrap around the product for protection. Nothing too fancy just simple and easy, which I like.

IMG_4510

The Supplement.

Given this product is considered a dietary supplement I wanted to look at what ingredients are in it to make sure nothing immediately made me think it would upset my crohn’s. The base of this supplement is raw honey which is great because it helps with the taste and raw honey has some health benefits to it and I also know I can tolerate raw honey. I am not going to list out every ingredient but it does have some prebiotics that support your gut flora, ginger, turmeric etc. All of the ingredients are natural and some of them are concentrated which gives them a stronger effect. Some of the effects that the website lists for each ingredient I don’t know the validity of all of it and as a scientist-in-training I take some of them with a grain of salt but that is just in my nature when it comes to products that are considered “superfoods.” They do suggest that to get maximum effect it helps to follow a clean eating diet.

Taste and Texture.

Given the base of this product is honey the taste to me was not bad at all. I know that some people have issues with the taste because it is definitely different but I handled it just fine. It has a sweet taste and a little earthy to me. The texture is also odd, it is a thick grainy texture but easy to swallow. For those who have trouble with the taste and texture it was suggested to put it in something like hot tea but I just ate it straight up!

IMG_4511

Health effects.

The recommended amount of this supplement is one heaping teaspoon a day because you only need a little bit of it for it to work and I agree. I started with one teaspoon a day but honestly, I think it worked too well as I had more energy than I needed so I ended up cutting my serving to about half a teaspoon. This product really worked for me! After a few days of using it, I realized I had more energy than I usually do and it also did not make me sick. I generally eat a fairly clean diet as well. With school getting back in session this supplement has been a great additive to my morning routine although I do still drink some coffee because I love it :).

Conclusion.

If you are looking for a healthy energy supplement I really do recommend this product. It is an easy healthy option for more energy and health benefits. I am a firm believer in using natural products if they work. I am however skeptical of most products because once again that is in my nature. I am by no means a health fanatic I do my best to eat right and exercise but I also am human and need certain things. If there is anything I can do to help my health whether it be a natural supplement or medication I am going to do it. This product has been a great addition to my diet and if you are looking for a healthy energy option you should definitely give this a shot.

Hip Replacement Update: Scar and X-ray Pictures.

I wanted to post one last update and recap of my recent surgical journey. These last few months have been some of the hardest I’ve had to endure in my young life.As most of you know back in February I dislocated my hip, which meant I dislocated my prosthetic joint as both of my hips have been replaced. I found out that my prosthetics were failing me after only 3 years and at 24 years old I had to undergo hip replacement revision surgeries to get my hips stable enough for me to get my mobility back.

I was devastated.

On March 7th I had surgery where my surgeon replaced my prosthetic joint with a new prosthesis and lengthened my leg, which was successful and my road to recovery began. I knew the other hip replacement needed replacing as well but I worked hard at physical therapy to build up strength in both legs in preparation for more surgery. Therapy went well and I went back to school for 2 months in the summer to get back on track with my classwork.

IMG_3192 IMG_4134

On July 11th I had my other revision done and leg lengthened so I wasn’t uneven anymore and the next recovery began. I am now 6 weeks post-op and just had my check up with my surgeon. Things are great. I’m walking without assistance, working hard in physical therapy and my hip X-rays look amazing. My surgeon and staff were so excited when I walked in, they were hugging me and celebrating this victory because they had personally seen the hell I was going through at such a young age (youngest hip replacement patient in the clinic). Both Scars are about 11inches long.

FullSizeRenderFullSizeRender

My recovery journey is still going, as it will be a life-long journey. To keep my hips in good health I have to exercise often and keep the muscles surrounding my hips in good shape.

IMG_4503IMG_4195

I did get some bad news the other day. I have Osteoporosis due to prednisone use and might have another rare illness. With this new diagnosis exercising and a healthy diet is a must to strengthen my bones. It sucks but at least it gives me a reason to keep my hips good and strong.

Being 24 and undergoing surgery that some people never need, and finding out my bones are so brittle I’m at a high risk for fracture is not awesome, but it’s the hand that I’ve been dealt. I don’t know what the next 10 years of my life have in store for me but I do know I’m gonna fight for my health. I am changing my diet, exercising and focusing on my overall health. I am continuing school given my health holds out I will get my Ph.D.

I’ve faced so much at such a young age and I’ve learned to not take anything for granted. I’m lucky to be walking and I know that can change at any moment. I want to give it everything I have because I have to get healthy. Not only for me but also for my family.

Other Posts: Side of Crohn’s Doctors Didn’t Warn me About.

on62948