How a physician with Crohn’s in Ethiopia is helping others with IBD cope

She’s a physician in Ethiopia looking to pave the way for those with IBD. She understands the need because she was diagnosed with Crohn’s in August 2016 at age 22 while she was a fourth-year medical student. After suffering from debilitating symptoms for eight months, she finally received a diagnosis. Dr. Fasika Shimeles Teferra says in her home country and in developing countries, she had always been taught that inflammatory bowel disease was non-existent. She felt isolated and alone as she embarked on her journey with chronic illness. There were no resources. No support. She had no clue where to turn when it came to being understood and knowing how to navigate nutrition.

In her school of medicine, an IBD diagnosis was morbid. She was told if she continued to learn about her illness, she’d die from the stress.

“Despite my medical background, I expected death to be imminent. The breaking point which later turned out to be a turning point for me, was when I was suffering from ovarian cyst torsion, explained Dr. Teferra. “Even though I was in remission at the time, every OBGYN who saw me in the ER refused to operate on me. One doctor refused to operate on me because I’m a “complicated patient with IBD”. He wanted to wait to see if pain meds will help solve it.”

Luckily, one doctor decided to operate on her, but unfortunately, she lost her left fallopian tube and ovary in the process. At age 23, she lost half her chance of being able to conceive a child. Her Crohn’s relapsed a few weeks later and depression set in. (Note: Luckily, she is due with her first child in June!)

“I went to my doctor and told him I was quitting med school (I was 5th year at the time and just starting my medical internship). But what he said changed me forever and made me feel less alone. He told me he was treating multiple IBD cases and that my disease was much more common in Ethiopia than most thought. He also told me Crohn’s was manageable with medication.”

Holding onto new hope

With a renewed sense of hope, Dr. Teferra started advocating for herself and looking for local support groups to connect with others who lived with IBD. The problem—she couldn’t find any! She joined a Facebook group based in the United States and recognized the need for support in Ethiopia.

“I reached out to a couple of gastroenterologists here in Addis and told them I wanted to start a support group in Amharic focusing on sharing experiences, supporting one another. My hope was to help others who were struggling with coping with their diagnosis. I thought sharing my story would make a difference in someone’s life.”

Launching Crohn’s and Colitis Ethiopia to make a difference

After speaking with multiple doctors, Dr. Teferra decided to start an organization that would not only focus on support groups, but also advocacy work for policy makers. The last published data on IBD in Ethiopia dates back to 1990s! She recognized this lapse in research led to major gaps in treatment for IBD patients. This inspired her to launch Crohn’s and Colitis Organization Ethiopia in January 2020. When the COVID-19 pandemic hit in March 2020, it put everything on hold as the world stood at a standstill.

Even though the organization exists, Dr. Teferra is struggling to garner participation in support groups, because sadly the stigma of IBD leaves many in Ethiopia to suffer in silence and shame. She says fellow IBD patients prefer to communicate directly with her, so she has taken it upon herself to meet them and their families to better explain their condition and how to live a full life with it.

“I try and explain to the patient and their family how they can best take care of themselves and how family members can offer compassionate and empathetic support along the way,” said Dr. Teferra. “Many people discontinue their medication the moment they experience a side effect. I’m also passionate about discussing family planning and breastfeeding. Because of my medical background, I am able to give reliable information about IBD and I am able to use my story to guide the narrative.”

Dr. Teferra also has a registered dietitian who serves as a board member for Crohn’s and Colitis Organization Ethiopia. The nutritionist can provide guidance about how to enjoy Ethiopian cuisine and manage diet in the context of cultural foods.

But Dr. Teferra is only one person and can’t address the growing need for support and care. Even though local gastroenterologists have her contact information, and she tries to meet with as many people as possible, as you can imagine, it gets to be a lot.

Bringing IBD to Prime Time in Ethiopia

During an interview about COVID-19 on national television in Ethiopia, Dr. Teferra took it upon herself to also speak about IBD.

“Since it was Primetime, I was able to reach multiple people at once and I was able to send out the message that those with IBD are not alone. I plan to use such platforms to continue to share facts about IBD and that it does exist in Addis. In the meantime, I am working hard to find a researcher who can work on this with us. We cannot challenge policy makers without evidence, and we cannot change the minds of the medical community without research.”

Dr. Teferra says gastroenterologists in Ethiopia can testify that IBD cases are increasing daily. There is lack of medicine, lack of education, and lack of understanding. Many patients struggle to afford medication and choose to discontinue it because of lack of availability.

Overall, Dr. Teferra main mission with Crohn’s and Colitis Organization Ethiopia is to improve the quality of life and health literacy of people living with IBD in Ethiopia and provide the patient community with a better understanding of their condition by empowering them to take charge of their own health.

Connect with Dr. Fasika Shimeles Teferra on Twitter: @DrFasika.

Email: fasikateferramd@gmail.com

Why IBD Forces You to Take Off the Rose-Colored Glasses and See Clearly

I remember the first time I put glasses on in fourth grade and no longer saw the world unclearly. I can still recall the first time I wore contacts sophomore year of high school and experienced how crisp life is supposed to look. Prior to glasses and corrective lenses, I thought my vision was how everyone else saw. I recently came across a discussion on Twitter by Jessica Caron (ChronicallyJess) about how you would describe your IBD journey at the beginning—in one word. One woman, Emily Morgan (@EmMorgan27) replied with the word blurry.

That response got me thinking. It’s spot on for so many reasons. Take yourself back in time to the first week you were diagnosed with Crohn’s or ulcerative colitis and the clarity you’ve gained and continue to gain with each year that passes.

When I was diagnosed with Crohn’s in July 2005 at age 21, I remember sitting almost stoically in my hospital bed because I was so overwhelmed by not only what the next day or week would bring, but the next hour. All my plans, all my goals, all my dreams that were once crystal clear became incredibly hazy. The thought of thinking beyond that moment almost made me feel dizzy with dread.

What does this new world of chronic illness look like?

What would be possible with IBD? Who am I now? How has my identity shifted? Where do I go from here? What will my friends think? What will future employers think? What’s it like to be on medication for the rest of my life? Will anyone ever love me? The list goes on. The vision that I had the first 21 years of my life was forever tainted.

But as the years rolled by, I came to realize the rose-colored glasses I wore prior to diagnosis didn’t give me that clear of a reality about not only my own life, but those around me. Prior to Crohn’s I just expected everything to go my way. Prior to Crohn’s I felt invincible. Prior to Crohn’s I didn’t think twice about my health and what a gift it was.

Now life is anything but blurry

Looking back over the past 15 years, my vision of life with Crohn’s is anything but blurry. As I grew older and more mature, this disease of mine made me see the world clearer than I had ever before. The darkest days have led me to the brightest, shining moments. Nothing is taken for granted. Nothing is expected, but rather overly appreciated. This disease forced me to see the strength inside myself and the resilience that I never knew existed. This disease has demanded a lot out of me and still does, but it’s enabled me to discover a newfound gratitude for life’s simplicities and provided me with superhero strength vision of who is genuinely in my life, and who is not.

It’s gotten to the point where I don’t even know if I would have been the same adult if I never got Crohn’s. My IBD is not my identity, it’s only a part of who I am. Now I credit not only my contacts, but my Crohn’s, for improving my vision.

Digging in the Archives: Emails I wrote following my Crohn’s diagnosis in 2005

When I started my blog, Lights, Camera, Crohn’s, four years ago, my main mission was to be the voice I desperately needed to hear upon diagnosis. As I reflect on my 15 year diagnosis anniversary, I thought it may be helpful to give you a behind the scenes look at some of my email archives from 2005…days after finding out I had Crohn’s disease. I’ve never shown these to anyone (other than the recipients, of course!)…but my hope is that in sharing private feelings, you’ll be able to see how my perspective about life with IBD has shifted and evolved since I was a 21-year-old girl feeling up against the wall with nowhere to turn.

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Photos taken in May 2005 (prior to diagnosis) and September 2005 (while on 60 mg of prednisone).

This article is dedicated to the newly diagnosed. We’ve all been in your shoes. What you’re thinking. What you’re feeling. What you’re struggling with. We get it. It’s not fair to compare where you are in coping to someone like me who has been dealing with Crohn’s for 15 years and been in remission for nearly five.

Here are snippets from my emails to friends. Reading the pain in my words and re-living this difficult time can be a trigger, but reflecting and seeing how far I’ve come is also incredibly empowering.

“I’m having a really hard time with this, harder than I ever could have imagined or dreamed…and I’m having a hard time trying to act like everything is great on the exterior. I feel like I’m on the brink of a breakdown…the drugs are getting to me so much. I woke up with visible shakes this morning and have been shaking all day. My moods aren’t me. I feel like I am a different person and that as much as I want to be the old Natalie, it’s just so hard to wake up smiling and happy. I’m getting tired of my family constantly asking me if I’m doing ok and feeling ok and everyone staring at me while I eat…I just feel like a pity case to so many people. I feel so alone in all this. I’m trying to be upbeat…and I know that it is going to take time to get acclimated to the lifestyle changes and everything, but right now I’m just having a difficult time figuring out who I am and where I’m supposed to be in life. The insomnia has left me up every night just thinking and wondering what the future holds and if I am ever going to feel normal again.”

“I try so hard to be strong and tough about this and it just all stays bottled up and I just started crying and am having a hard time stopping. It’s just so hard. I look at pictures and think back to even graduation time and it just freaks me out that I went from living a carefree, healthy life…to this. I know it is something that I will always have and that I have to get used to it…but it’s hard for me to handle at times. I don’t mean to complain or worry you or anything, I just feel as though I need to get out some of this frustration before I go to bed. I’m scared of getting sick again and having to go in the hospital sometime again…and I just feel like I can’t go a day without a thinking about all the what ifs. You know I analyze so much…haha…it’s like a living nightmare!”

“I’m sorry if I talk about this too much. I’m sure it isn’t the most appealing or attractive thing to have to hear from your gf…but sometimes it becomes a little overbearing on me…and I can’t hide my fears when it does. I mean I refuse to let this change who I am and the life I will lead, it’s just at times it seems so much bigger than me, and so much larger than life. I know I have been complaining a lot about my puffy cheeks and stuff…and I know that prob gets old…I just get so self-conscious about it…and it just sucks that I have exactly 2 more months left on the steroid. As my dosage gets lower and lower the side effects should stop and start to go away…I’ll believe it when I see it!  I guess it’s just scary to me to see the effects of a drug that are helping me on the inside and hurting me on the outside. I just want to look the same to you as I did the last time you saw me.”

“What I won’t ever apologize for is this summer, because I was going through a living hell, and I saw which friends were there for me and which weren’t. I was ridiculously ill from June 5th-my bday (August 24) and you were angry with me for not keeping in touch. I couldn’t even stand to get myself a glass of water for weeks and was hospitalized for days. I never heard anything from you. I know that people handle those types of situations differently… but that was the hardest thing I’ve ever gone through in my life, and I really needed a strong support system. Battling with a disease and feeling like I completely lost myself has made me have to be a little selfish these past few months. I’m just coming to grips with it all now and thank God I’m feeling well…but it is still an adjustment and has given me a complete different perspective on life.”

You guys. I’m sitting here crying. I’m that girl. I wrote those words. That was 15 years ago and thinking about that time still feels like a knife in my chest. Even though this disease has enabled me to gain so much gratitude and perspective, it still robbed me of a lot. It still hurts…sometimes more emotionally than physically these days since I’m in remission. These diagnosis anniversaries stir up a lot of memories. While I choose to think of it as a time to celebrate another year of taking this disease on with all the strength I can muster, it’s also a time that takes me back to some of the most challenging and difficult moments in my life.

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I colored this in my hospital bed after being diagnosed with Crohn’s.

I wish I could hug that girl and tell her it was going to be alright. The career, the love, the family…it would all happen. If you’re in that difficult space right now coming to terms with your newfound identity following diagnosis or getting over a flare up, please know this disease ebbs and flows. It’s not a constant. The good and the bad moments are fleeting, but your resilience and your confidence in coping becomes so much a part of who you are, it’s hard to recognize who you were before.

How a first-grader is taking her Crohn’s and turning it into a positive

IMG_0029She’s a ball of energy and a sweet little chatter box, wise beyond her years. Seven-year-old Brooke, of Missouri, was diagnosed seven months ago with Crohn’s disease. She spiked a fever on New Year’s Eve 2017 that lasted for eight days, and from that point forward, life was never the same.

I had a chance to get dinner with Brooke and her mom, Tara, this past week. I couldn’t help but look at this little girl in awe. Despite already being hospitalized three times since March and starting on a biologic drug in August, it was as if she has dealt with the disease her entire life. She talked candidly about all the pokes of the needles and how she tells all the nurses they are her friend. She raved about the tater tots and pancakes at St. Louis Children’s Hospital. And laughed about how annoying it is when the lights go on in your hospital room in the middle of the night. She was more like a teenager, than a little girl.

Here’s how her Crohn’s diagnosis came about. After ruling out the flu, mono, strep and a UTI, doctors discovered she was anemic. The pattern of fevers continued for two months. Still no answers. As time passed, Brooke’s pediatrician started considering a GI issue. After an endoscopy and colonoscopy, IMG_0409Brooke and her family were told she had Crohn’s disease on March 2, 2018. In a matter of months, she went from being an outgoing, energetic kid to a hospital patient on a laundry list of medications. She developed her first fistula while on methotrexate and was on prednisone for more than three months.

Dealing with the diagnosis

Fast forward to this past summer and this sweet little girl received her first Remicade infusion four days before she started first grade. Brooke is the first person in her family to receive an IBD diagnosis. Her mom, Tara, says these past months have been the hardest she’s ever endured. Her mind races with the what ifs, as she navigates her family’s new normal.

“Were there signs we should’ve seen sooner? Ditarad we do something to cause this? Were we making the right decisions for her treatment and care? Brooke has a HUGE personality. When she was first sick, and before her diagnosis, she just stopped talking. She would lie on the couch for hours and hours every day. This was not my Brooke. She normally can’t sit still for more than a few minutes! I was SO scared because I knew something wasn’t right. Watching her in pain and miserable for two months while we waited on this diagnosis was miserable. You just feel helpless…all we could do was love her and pray,” said Tara.

Juggling life and family from the hospital

Tara and her family have encountered many challenges along the way. Between the costs of the medications, the hospital stays, all the tests and trying to juggle work. To say it’s been a lot, is an understatement. Tara’s husband, Josh, works from home which helps, but Tara is a preschool special-education teacher. She was out of paid sick days by the end of January of this year. Although both employers have been understanding of Brooke’s health situation, the family has taken a big hit financially.

remicadeWhen you’re going through this, you are spread so thin and it’s difficult to ask for help. We have another daughter, Haley, who is 10. Of course, when Brooke was in the hospital, either Josh or I were with her every minute. We live over an hour from Children’s Hospital in St. Louis, so it wasn’t possible to pop up for a quick visit. It was also hard for us to ask for support. We needed help mentally, financially, and logistically with many things. We have an AMAZING support system of family and friends who have helped us throughout this process.”

An advocate from the start

Brooke has been a true IBD warrior every step of the way. She doesn’t even cry anymore when she gets her IV. Brooke openly communicates about her diagnosis and is able to tell you which foods trigger symptoms, and which are safe for her to eat. She explained to me how she’ll have one strawberry at lunch at school, if it doesn’t “hurt her tummy” she has two strawberries the next day, and three the day after that. This little girl just gets it. Tara says in just a few short months, Brooke has already become a very good advocate for herself.

“Watching my baby go through this has changed me forever. IMG_2456Although I know she doesn’t know yet, what it really means to have Crohn’s, I am always so amazed by her strength. She talks about it very ‘matter-of-factly’. It doesn’t define her. I hope and pray constantly that anything that I encounter, I can deal with, the way she has dealt with this. It’s made our family stronger by seeing that we can face this together.”

A GoFundMe page has been created for Brooke and her family. Click here to submit a donation, every dollar helps!