When I woke up from the anesthesia after my colonoscopy in 2013, I was told that I had Ulcerative Colitis and that there was no cure. I was told there were treatment options available and we would discuss them next week.
And that was it.
I wish that there was not any more IBD diagnosis. Unfortunately, it is becoming more prevalent and pediatric cases are increasing as well. Every year 70,000 people are diagnosed with IBD. Let’s give these people some hope. I recently found out that the office I used to seek treatment for my Ulcerative Colitis will not hand out the new patient packets for their IBD patients. Free resources that they won’t utilize. This is unacceptable.
was left to my own devices to search the internet and social media trying to figure out what the hell was happening with my body. I was given very little hope and a whole lot of fear. At the time, there were less than 100 hashtagged #ulcerativecolitis posts on Instagram. Now there are over 127,000.
I don’t want anyone to ever wake up to those words again and be left to read the worst of the worst on chat forums on Google. There are so many resources available now, and so many treatment options that remission is possible if you have the right care team and find what works for you. This is why I walk for the Crohns and Colitis Foundation. Come join me on Sunday, October 1st at 1pm at Hawk Island (1601 E Cavanaugh Rd, Lansing, MI 48910) and take a walk with me.
Sign up here: http://online.ccfa.org/goto/hopesparkers
Or if you can’t make it, if you would consider donating I would greatly appreciate any contributions to my team fundraiser.
Thank you for supporting me. I hope to see you there!
Today I bring you, in my humble opinion, the guru of IBD (inflammatory bowel disease): Amber Tresca. Amber is an IBD advocate. She works hard to bring forth the facts about IBD, answer questions and support patients as the navigate the confusing paths that these diseases take us down. She does amazing work on her blog, podcast, twitter chats and all of the articles she writes. Amber is the real deal when it comes to advocacy, and I’m so honored to share a bit about her here. Thanks for participating and all that you do, Amber!
When were you diagnosed with Ulcerative Colitis?
I was diagnosed with ulcerative colitis in the fall of 1989; I was 16 years old.
What do you remember most about that day? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?
What I remember most about the day I was diagnosed was that everyone seemed to know the language of healthcare but me–the many questions from physicians and nurses when I was admitted to the hospital were completely foreign. If it were possible to tell my 16-year-old self one thing, it would be that the way things are today is not how they will stay.
In my opinion, you are the information guru for IBD. If you don’t have the answer, you usually can find a trustworthy resource! That’s pretty awesome. What is your favorite part about being an IBD expert?
My favorite part from being an IBD expert is being able to make a difference in people’s lives. There have been many instances over the years where I’ve been able to provide a key piece of information that helped someone with IBD alter their path in a positive direction.
What are some of your other favorite things to do outside of IBD awareness and education?
Outside of my IBD life, I enjoy movies, crafting, playing with my kids, and am an avid reader.
What is something you have accomplished that you are most proud of?
I’m proud of my most recent venture, with is the About IBD Podcast. Podcasting is not something that I had any experience with, yet I leaped in with both feet and my work has been well received.
Who inspires you?
I’m inspired by my children as well as the many IBD advocates and industry professionals that I work with in the IBD Social Circle.
What are some of your coping mechanisms for dealing with stress?
Stress is always a huge issue for anyone with a health condition and my stress relief usually involves spending a day away from work and in the kitchen cooking and baking, preferably for dinner guests.
What keeps you hopeful?
What keeps me hopeful is learning from the many researchers and practitioners whose daily work seeks to better the lives of people with IBD through research and the improvement of patient care.
Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?
A mantra that I’ve taken from one of my favorite books, Dune, by Frank Herbert, is called the Litany Against Fear. It’s quite specific to the book but it reminds me to have courage in the face of fear, because fear is transitory.
“I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing. Only I will remain.”
Time for rapid fire this or that:
Chocolate or Vanilla?
Coffee or tea?
Hot or cold?
Sweet or sour?
Charmin or Cottonelle?
Neither! Seventh Generation
Dog or Cat?
Running or walking?
Road trip vacation or resort vacation?
Android or iPhone?
Sunshine or rainy day?
Dinner our at a restaurant or a nice home cooked meal?
Doing the dishes or laundry?
Doing the dishes
Comedy or Horror?
Fiction or nonfiction?
Cake or pie?
You’re in the waiting room about to leave after a follow up visit with your GI. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?”
What do you say?
What I would say is that you will get through this because you will not allow it to defeat you. How you feel today won’t be how you feel tomorrow or the next day because you’ll get your spark back, and you’ll find that it shines brighter than it ever did before.
You can find Amber at the links below!
About IBD Podcast: https://itunes.apple.com/us/podcast/about-ibd/id1228402052
I don’t think I could write a post that named everyone I felt was my hero. I am constantly inspired to be a better person by my family, my inner circle of friends and my husband. For this purpose though, I’d like to take a little bit of time to talk about the people I have met the last few months.
I’m honored and humbled to have been surrounded by these amazing and strong people at patient panels recently. At each panel, there were about 3 out of the 16-17 of us that had not had any surgery. Almost everyone else had had their colon removed and now had a jpouch or were in the process of having the surgeries. Everyone had their own ulcerative colitis story to tell, but more importantly, everyone was there because they wanted to make changes and improvements for other patients. There were laughs, tears, hugs, debates, and a passion for improving the quality of care and treatments for this disease. There were friendships built, connections made, ideas sparked, and mostly…hope resurfaced. There are people missing from these pictures, some that weren’t at the conference and some I couldn’t get a selfie with but you all know who you are, and I’m so grateful for all of you.
I’ve been utterly exhausted and so frustrated about the amount of negativity and attacking I’ve seen on social media lately. I’ve been lurking in the background swiping through posts upon posts of complaints and negativity and worries and fears. This toxic thought pattern has drained part of my spirit and makes me question why I came out to start this blog and find support out here in the first place.
I’m starting a 30 day gratitude challenge for myself. I need this. I need to reconnect with why I blog about how having a chronic illness impacts my life and my mental health. I need to get back to gratitude for being alive, for having the gift of this life. I need to determine if I want to continue this. Be the change, right?. I’m tired of the negativity, so I’m not going to contribute to it.
Do you feel drained? Maybe you need this too? Feel free to join me, I’ll be posting daily throughout November in honor of the month of Thanksgiving- and just reminding myself to give thanks, and to find the light in the darkness.
Here are the dates and suggested writing topics I created for the month to spark a gratitude practice. Feel free to screenshot, join, share and follow along on instagram and twitter, I’m @flareuphope pretty much everywhere. Let me know what you’re thinking of his month and tag me in your posts so I can see.
I can’t say I’m entirely thrilled to be back home in -23 degree mornings (yes, that is a negative 23 temperature), but man, I missed the privacy of my own bathroom and only having to share it with one other person. Little blessings.
Vacation was different this year. This was my first non-sick/IBD related day off from work in over a year and a half. You could say I was looking forward to it. I wasn’t even realizing that this was my first vacation with my IBD. The thought did not even cross my mind at all. I was thinking of sun, and sand and not having to think about anything else but just relaxing and doing whatever I wanted. I still had the mentality that vacation was going to be about lounging and laughing and eating and drinking and just letting go.
My infusion was the Friday before we left, and we were driving to avoid the chance of me getting sick with my immunities being so low right after the remicade (we both came back home with colds anyway) and my fiance drove the whole trip. I was nauseated a couple of times and had some cold sweats but mostly got through okay. Absolutely no urgency. We stayed overnight in Georgia so I could get a goods night sleep and be in full vacation mode when we arrived on Sunday. I think part of me was thinking that not only do I have time away from work and obligations, but part of me kind of thought I was going to be on vacation from this disease as well.I was so ready for Sunday and to be feeling better. As we were driving in to FL and a few miles away from the house, we had the windows down and the sunshine filtering in and it all felt wonderful. I closed my eyes and felt the wind come through the window onto my face and just smiled, feeling so grateful that I was well enough to be there.
The first couple of days were great. We went fishing and relaxed, went out to the everglades and just did whatever we wanted. I was still seeing some blood, but I wasn’t in any pain or too concerned, just waiting for the remicade to do what it needed to and watching what I ate to try to avoid anything I knew triggered a flareup before. I smuggled my own Ketchup in my purse. I don’t drink anymore because it triggers inflammation for me, but I was able to find some iced coffee everywhere and was a happy girl.
Every time my fiance and I have previously been to Florida on vacation, we usually spend a night at an oyster bar filling up on ketchup and horseradish and crackers and beer. It’s one of my favorite memories on our first vacation together, sitting on the patio with a corona and oysters, laughing and carrying on without a care in the world.
We went out to one oyster bar on our 4th or 5th night there, and I ended up breaking down. Reading over the menu, there was a large warning specific to “persons with autoimmune diseases” that eating the raw oysters may cause severe illness or even death.
I never thought I would cry over oysters. Or in public. At a restaurant of all places. It was like a scene from a stupid cheesy movie when the waitress comes over to ask for your order an you’re trying to pretend like somethings in your eye. Sometimes I just get so tired of this disease surprising me. And on vacation?! Vacation is where you’re supposed to leave all your problems behind, right?
As I sat quietly through dinner of french fries and my smuggled Ketchup I tried really hard not to let the tears drop down my face. I just wanted a vacation. A vacation like I remembered. Like I used to have.
When we left the restaurant, I cried for a little while though I really didn’t want to. And then I asked my fiance to help me redefine vacation. If vacation wasn’t going to be what it used to be, I needed to change the way I thought about it.
I can’t take a vacation from my disease. It’s part of me, and I can’t neglect to take precautions, take medications, and take care of myself. Even for just a little while. I can, however, go to the beach. I can take walks to wherever. I can put my toes in the water. I can walk on the pier. I can drink coffee. All kinds of coffee. And smoothies. I can do yoga. On the beach. I can go visit old trees, and get close to alligators. I can eat strawberries fresh off the farm. I can watch the sunset. I can make the most of what I’ve been given, and not focus on what I’m unable to do.
This vacation helped me realize that many things are still going to need to be redefined in my life in the future. I’m still mournful there are things I used to be able to do but choose not to do now because they make my quality of life lower due to the disease I have. It’s not easy to give up some of my favorite things. The letting go allows something else to be discovered, however, and I know that there’s more out there for me to find. I’m grateful that I was given the opportunity to try some of these things once before, and that I have memories of those moments to call on and relive when I want to. This vacation reminded me of what a gift my life is, and what a gift each moment is. I really never know if there will be a next time. Neither do you. Hopefully, I can remember that more often.
This girl is one of the most amazing people I have met in this community. Not only does she give all she’s got to fight her autoimmune diseases and everything that comes with it, she fights for everyone else that’s suffering. Through her #purpleproject care packages, caring tweets, and hilarious sense of humor, she’s always bringing a smile to someone’s face. I picked this post to share today to give a little insight as to what it’s like to have an autoimmune disease. “Remission is a sigh of relief, Remission is family, friends and never cancelling plans. Remission is Hope, a Future, Remission is smiles. Remission means normal.”
Kelly, thank you so much for all that you do and all that you fight for, and all the joy you bring to people who need it. I couldn’t be prouder to have you as part of my IBD family, and I know we’ll be in this fight together through Remission and beyond.
What is Remission to you?
i capitalize Remission for a number of reasons, but the main reason being i see it as a state, a royal majestic state. if you read much of my writing, im sure youre annoyed by my constant writing habit of writing in all under case, with very few exceptions.
as much as i hate to admit it, there is no way around “if”. “if i knew what being in Remission meant.. “if i had enough energy to finish my day as strong as i started it”.. i think every single day, i find myself finishing my “if” quandaries differently. “if” is one word i one delete from the language of chronic illness. its so limiting, so…
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December 1st begins the week of awareness for Crohn’s disease and ulcerative colitis. Since these inflammatory bowel diseases are the reasons I started this blog in the first place, I thought I should take part in this awareness campaign and share some information this week about Inflammatory Bowel Disease, specifically Crohn’s and Ulcerative Colitis.
5 million people in the world are battling one of these diseases.
That’s equal to the number of people battling Alzheimer’s in the United States as well as the number of people who die from tobacco usage each year. When I googled 5 million, these are the statistics that came up. As well as that 1.5 million people in the United States are living with Lupus. These are all terrible and scary numbers, and horrible diseases for people to battle, but that’s not my point.When I did this google search, after going through 7 search pages there had still not been mention of Crohn’s disease or Ulcerative Colitis. I stopped searching after that.
There is not enough awareness for this cause. Inflammatory Bowel Disease is an autoimmune disease that has no cure. No cure. That means 5 million people have been told that they will live the rest of their life fighting this disease and taking medication to try to ease the symptoms (we’ll discuss these in a later post). 5 million people are being told they don’t know what caused the disease to occur, and whether the treatment will work. This number is on the rise, and it’s time to take a stand so no one else has to hear those words.
Speaking with some other IBD Warriors, one of the most frustrating things to deal with is the fact that most people do not understand that inflammatory bowel disease does not have a cure. People are constantly asking when you will be normal again, when you will stop taking your medications or getting your infusions or watching your diet. When will you be able to go out and party again like the old times? People ask this because they care, and because they don’t know any better. They don’t mean to offend or frustrate you.
In my opinion, the only way to bring understanding is to continue to raise awareness and be open and share what inflammatory bowel disease is as soon as the opportunity presents itself.
I remember when I woke up from my colonoscopy, still spinning from the anesthesia and heard that I had ulcerative colitis. Oh. What’s that? I figured it was just something I could take some antibiotics for and it would go away, like bronchitis or something. Uh, not exactly. The doctor said we would meet next week and discuss my treatment plan. And there I was, in my hospital gown with my mom, sipping on my sprite and realizing that my life had just been flipped upside down.
Getting a diagnosis of “no cure”means a lot of emotional turmoil. You battle with “it could be worse” and “why is this happening to me?” It means I get to have good days that I won’t let slip through my fingers. It means I have days where I don’t leave the bed until late in the afternoon. It means I have to take pills every day for the rest of my life, and deal with the side effects. It means that I don’t know if my medications will continue working. I don’t know when my next flare up will be. I will most likely need to continue taking medications and receiving infusions for the rest of my life. I will consistently be watching what I eat, because I’ve found that some foods trigger flare ups for me. It means that someday, like 50% of others fighting these diseases, I may face surgery in my future. This may be surgery to remove part of their intestine, or their whole colon. And this means someone you know may be suffering. There are treatments that can put some of the symptoms into remission. Often these treatments bring very scary side effects. But they do offer a chance at a normal life.
It means I am passionate about raising awareness for these diseases. Every time I see someone else receive this diagnosis. Every time I go to the infusion center. Every time I go to the doctor’s appointments. Every morning and night when I take my medications. Every time I scroll my twitter feed and see someone else suffering. Every time someone from my IBD family gets admitted to the hospital.
Do I wish that I had never received this diagnosis? Of course. But I wouldn’t give it to anyone else in a heartbeat. I’ve met some of the most incredible people through this diagnosis that I would never have connected with if I didn’t go through what they were going through, or vice versa. And if I wasn’t fighting for more awareness, for a cure, who would be in my place? It could be someone you know.
Join me this week as I focus on these two diseases and how we can find hope while fighting them, and while healing.
Hi folks! Sorry I have been away for so long. I caught a terrible cold and was spending all of my energy on my day job and am just now getting it all back again and getting back into the blog! I promise it will be better than ever before, stay tuned for the next few months to see what’s coming!
In the mean time, I’m happy to introduce you to this week’s Wednesday Warrior, Shawn.
She’s a great example of how your life doesn’t have to revolve around your disease, and you can do amazing things still! Using ulcerative colitis as a driving force and determined to put herself and others fighting autoimmune diseases into remission without having to rely on harsh drugs and awful side effects, and she’s doing great work on this!
Check our her contact info at the end of the blog, and thank you Shawn for sharing!
Here’s Shawn’s story:
I was diagnosed with ulcerative colitis in 2008. At the time, I just took the medication (mesalamine) I was given and it went into remission without a problem. I had a few small flares over the next few years, but was able to get over them pretty quickly. It wasn’t until August of 2013 when I was hit with an intense, debilitating flare. Tests revealed my UC had spread. My gastroenterologist was the worst! He gave me no insight as to how this could have happened and refused to entertain any idea that diet played a role. Instead, he handed me a prescription for prednisone and mesalamine and made sure I was aware that I would need to be on medication the rest of my life. This infuriated me, but looking back now, I’m so incredibly happy that I had the worst doctor ever. It forced me to do my own research on causes and treatment of the disease because I was determined to get off prescription medications! 18 months later and it has become almost an obsession…I WILL figure out how to make people with autoimmune diseases well again without the use of debilitating prescription meds. I have found my calling!
Since that moment of enlightenment, my life has been a whirlwind! First and foremost, I completely changed my diet and in doing so, have been able to get my UC symptoms about 90% under control. I currently follow a STRICT paleo diet, eliminating ALL grains, dairy, processed foods, sugar, and legumes. For 6 months, I even took it one step further and followed the Autoimmune Protocol which eliminates nuts, eggs, and nightshades…foods that can cause inflammation in those that are sick. In doing so, I was able to take my healing even further, get off ALL medications, and add these foods back in with no symptoms! Food is medicine and it has been a game changer for me. Another plus? It has MADE me learn how to cook and it turns out that the kitchen is my happy place! I have eaten some of the best meals of my life while focusing on eating for my health. This is MY #1 PIECE OF ADVICE…even if your doctor tells you diet has nothing to do with your disease, IT DOES! At minimum, it is absolutely critical you get rid of all processed foods and grains. It’s not that bad, I promise!
Secondly, I had to make some major lifestyle changes. Living a rested, stress-free, health-fulfilling life was now my biggest priority. I had spent years in a super stressful job, had a crazy workout routine, ate at a caloric-deficit everyday in an effort to get to my ‘ideal’ weight, dealt with dramatic relationships, and spent one too many nights out until the bars closed. I simply could not live this lifestyle anymore, my health was more important. I immediately adopted a more ‘grandma-like’ lifestyle! I make sure I get at least 8 hours of sleep every single night which means some nights, I’m leaving social outings early, something I have learned to be OK with doing. I also don’t drink alcohol anymore (except for a very occasional glass of red wine) and have had to adapt to being the only one ordering water! Although I still workout regularly (I am a personal trainer after all!), I make sure to listen to my body and tone it down when I need to in order to avoid physical stress. I no longer allow dramatic people into my life. If I do have a stressful day, I make sure to spend at least a few minutes that day in full-on relax mode, focusing on deep breathing and muscle relaxation. This is my version of meditation! I also spend about 30 minutes every night doing restorative yoga poses to detox my body and mind from the day. In purposefully de-stressing my lifestyle, not only have I been able to physically heal, but it has helped me mentally cope with the battle at hand. This is my #2 PIECE OF ADVICE…get rid of as much stress as you possibly can and get some sleep! Eliminating stress is the only way to truly heal.
It may seem like this major life overhaul I’ve had would be hard, overwhelming, and not fun, but it is just the opposite. I’ve never felt so empowered in my life! I’m not letting this disease win! Yes, I have bad days. There are days when I don’t feel well and it’s frustrating. There are times when I want to go out with my friends and have a beer and a giant plate of nachos. There are times when I just don’t want to think about any of it for a second. But, I recognize that its normal to have bad days and negative thoughts. I don’t beat myself up about it. Its what you do with the negativity that matters. For me, I’ll take a nap or read my Us Weekly (my guilty pleasure) to take my mind off of it for a bit. If I’m frustrated, I’ll go get a great workout in and sweat the frustration out! After I take this time away, I turn my feelings into motivation! I head to my computer and do more research, looking for even more information that will help us all beat this disease. My bad days only fuel my fire! And this is my #3 PIECE OF ADVICE…YOU are not YOUR DISEASE! Don’t let it take over who you are. Let it motivate you to live your healthiest life and use those lifestyle changes as empowerment!
I have a ways to go, but in the past few months I have learned so much about treating and preventing autoimmune diseases WITHOUT prescription drugs. It is a possibility and so exciting! As I get information, I will be sharing it to help everyone else via my blog: www.well-belly.com. You can also sign up for twice monthly newsletters focused on wellness as a lifestyle on this site too! If you need ideas for what a meal should look like on a Paleo diet, follow me on Instagram: @well_belly.
I would love to hear from anyone who is struggling with their battle, has questions, or just wants to chat! Email me: firstname.lastname@example.org.