The last 8 weeks since the World Health Organization declared Coronavirus a pandemic have been nothing short of an emotional roller coaster ride for many of us. From uncertainty around chronic illness and medications making us a higher risk to jarring numbers of lethal infection rates, we are all grappling with much despair.
Given all the sadness in the media right now, I thought it relevant to share stories of hope, ones where IBD patients, their caregivers and their doctors have not just survived but are making a full recovery. Check out the stories below of 4 IBD patients, a caregiver and a gastroenterologist, all survivors of COVID-19 and heroes who give us hope that we will all come out of this pandemic stronger and more united!
CARLENE, IBD PATIENT & CANCER SURVIVOR
Hi, my name is Carlene. I tested positive for COVID-19 in mid-March and I was hospitalized for 3 days at Memorial Sloan Kettering the following week. I live in Manhattan and no one I knew at the time had COVID-19 so I have no idea how I contracted the virus. My positive test result was surprising because I had self-quarantined before I came down with symptoms. I have a compromised immune system and I thought it best to be careful.
The complicating factors are that I was diagnosed with cervical cancer in 2011 and now have been living with ulcerative colitis for the last two years. I’ve tried a whole host of medications for my UC. I was on Remicade and Entyvio but those didn’t work as I continued to have symptoms and develop erythema nodosum all over my leg. I just started a loading dose of Stelara on March 3rd, which was 10-12 days prior to the onset of my COVID-19 symptoms.
How did COVID-19 present in my case? I developed a lot of symptoms that worsened quickly, let up and worsened again. Like many others with COVID-19, I developed dry cough (no mucus) out of nowhere and it came on fast and strong. I have a fever of 100.6 F or so for about 3 days with body aches. I had nausea but no vomiting along with severe headaches. I lost my appetite completely along with a loss of smell on day 5. I had mild sore throats on and off with a slightly runny nose. One of the hardest aspects to deal with was the chest pain from the coughing and from the virus itself.
In the hospital, I was given an IV bag of Morphine along with cough and nausea medications as needed. I was also given Tylenol for pain and an Albuterol inhaler to help with the breathing. The doctors there didn’t recommend any trial drugs so I luckily avoided those.
It took a long time for symptoms to mitigate. Even after I came home from the hospital, I was not well. I was stable enough to be home and could focus more on wellness and recovery.
During my recovery, I kept up with my vitamin intake from buffered vitamin C to D3, zinc, folic acid and magnesium, I tried to focus on wellness and getting through the worst parts of COVID-19. I hydrated a TON. I drank a lot of water, Gatorade and plenty of refreshing hot teas other than the couple of day when I couldn’t drink or eat anything without feeling nausea.
For a good few weeks after onset of symptoms, I still had shallow breathing, a dry cough and it hurt to breathe and cough many times. It felt like there was a heavy weight in my chest. And recovery is not linear with COVID-19. It is a roller coaster ride. One minute you might be feeling okay and thinking this is behind you and bam, another aspect of it hits and knocks you down again.
That said, now I’m about 7 weeks out since symptom onset and I just had my second Stelara dose last week on April 27th. I just donated plasma a few days ago on May 5th and learned what an arduous process it is! There’s an interview process and the whole thing took about 2 weeks to get approved. But I finally did it and I’m happy to be able to help out the community in any way I can.
My words of advice to IBD patients like myself: Please be careful. This virus spreads like wildfire and you won’t even know you have it. COVID-19 isn’t an easy thing to ride out. If you need help, go to the hospital and seek the medical care you need. Take the time out to rest and recover and listen to your doctors. And finally, don’t panic! You can and will get through this.
ANTHONY, IBD PATIENT & OSTOMATE
On the weekend of March 14-15th, 2020, I held services as a Lutheran pastor at my church in Long Island, NY. The next day, I developed a cough. Wednesday night, I felt run down and started to get chills, aches and pains. Thursday morning, I felt like I had a fever.
The testing itself left me feeling confused and bewildered. I couldn’t pin down whether or not I needed an appointment but once a friend got through testing, I decided to go for it.
A couple days later, I received the news that I had tested positive for Coronvirus. I probably could have told them that from my symptoms. I had fevers that didn’t want to go away. Nothing dramatically high, but annoyingly persistent. My aches and pains made it hard to get comfortable. The chills and cough meant sleeping was difficult.
The complicating factor was that I live with ulcerative colitis. I’ve had an ileostomy for 30 years. I had gone from from being an excited college freshman to dying in a hospital bed in a 2-month timeframe.
The doctors tried all kinds of things to help me, but I kept getting worse and worse. I was there for 33 days. They gave me an ilesotomy due to toxic megacolon. At the age of 18, I thought that was the name of a heavy metal band!
My life was a wreck at that point. I was six feet tall and just 130 lbs. I had to drop out of school. I could barely walk. And now I had a bag attached to my waist. The sight of my ileostomy freaked me out. I changed it as quickly as I could so I wouldn’t have to look at it.
I’m now 48. I gained back my weight and added on way too much over the years. But as healthy as I am, I am fragile in certain ways. Dehydration is always a threat, even on good days. When I get sick from a cold or stomach bug or whatever, it triggers me. I have PTSD from all that I went through as a young adult.
So, when I contracted the Coronavirus, I was naturally very fearful. I didn’t want to go to the hospital. I never do. Every illness triggers me emotionally.
As I recovered at home, I developed an awful skin breakdown above my stoma. It was over an inch in diameter and the wafer wouldn’t stick to my skin. Don’t get me wrong, my ileostomy saved my life. I am grateful for that, but at the same time, my ostomy sometimes affects my life negatively at times like it did while I had COVID-19.
The fever, chills and aches lasted for five days. I was miserable and having to constantly change my ostomy didn’t help. Finally, the fevers broke. The chills stopped at the same time. So did the aches and pains. A week or so in, the cough started and it just recently died down. But for weeks, I felt too exhausted to walk and spent much of my time in bed recovering.
During this time, I wished I could care for my congregation. People were scared. One of my congregants died, probably from the Coronavirus. 2 other people related to my church also died. And I was out of commission. I prayed when I could. It was hard to focus.
I am thankful that I recovered from COVID-19 and am able to share my story today to give you all hope. I realize that it could have been a lot worse. Surviving both toxic megacolon and now COVID-19 is a source of strength for me. Many of us may be facing similar challenges and we can and should support one another. I believe now, more than ever, we need to connect as a community and let love see us through.
BRANDI, IBD PATIENT & J-POUCH WARRIOR
My name is Brandi and I was diagnosed with UC in 2003. I’ve had a total of 6 surgeries where I got a j-pouch and then a j-pouch revision. I am currently on Stelara.
My COVID-19 symptoms started off like this: I had a migraine for 2 days and then a stuffy nose and sore throat. I had some body aches and fatigue but I also have a toddler so I didn’t think much of it. It wasn’t until my 13th day of working from home and quarantining from the outside world that I realized I couldn’t taste or smell anything. It was then that I put the pieces together that this could be COVID-19.
I was tested for COVID-19 two days later at a drive thru testing site in the parking lot of my doctor’s office. I didn’t receive the positive results until a week later. At this point, I felt like isolating myself from my family would have been pointless. I had already been around them nonstop for 3 weeks.
We were pretty sure my husband contracted the virus as well. He had a fever, chills, nausea and vomiting along with body aches and an earache. He didn’t get tested until after my test came back positive. He received a negative result for COVID-19 4 days later. We don’t know if it was a false negative or if by the time he was tested, the virus was out of his system.
During my recovery, I took Tylenol and just tried to rest as much as I could. I had taken my Stelara a few weeks prior to my positive test at the advice of my doctor. I plan on taking my next dose in a couple weeks as recommended by my IBD specialist.
If I could share any advice, it would be to try and be as careful as you can if you have to be around other people and maintain that physical distancing. I had to work until the government finally closed down schools well after Coronavirus was declared a pandemic. I believe I got the virus from someone at work even though I thought I was being really careful.
I am relieved and thankful that my body was able to fight off the virus. We often read about people who don’t beat it. I feel so lucky to be here, to share my story and to give hope to others.
To learn more about Brandi’s story, check out her guest blog post on having a baby with a redone j-pouch: https://ownyourcrohns.com/oyc-trailblazers-brandisjourney/.
CHRISTINE, IBD PATIENT & CANCER SURVIVOR
Hi, my name is Christine. I was diagnosed with ulcerative colitis in 2017. I was on Mesalamine for a while and now I’m on Entyvio. In the past, I’ve had a spinal fusion from car accident in 1992. I’ve also had a Bilateral Mastectomy from breast cancer in 2014.
I last had my Entyvio infusion over a month ago at the hospital. I was also still working at the time so I’m not sure how I contracted the virus. It could have been at the hospital or while working.
I first had symptoms of no taste, no smell and no appetite on April 4th. I had a horrible cough and sore throat along with body aches/earaches/sinus issues. I also had a low-grade fever first few days. I developed migraines and all sorts of GI issues.
I remember going to an urgent care center (CityMD) in Long Island to be tested for the flu, strep throat and then finally, COVID-19. I found out on two days later on April 6th that my COVID-19 test came back positive and my tests for strep and the flu were both negative. I was not prescribed anything at the time. Two weeks later, I developed shortness of breath so I went to the ER and they took a chest X-ray which came back clear. They gave me fluids sent me home with Azithromycin (Z-pak) and inhalers.
During the most acute part of my illness, I self-isolated for 3+ weeks as I did not want to expose anyone else to the virus. Friends came by and dropped food and other things off by my front porch for me to easily pick up. Now that it has been 5 weeks, I’m going out for more walks a couple times a week and to pick up necessities. I wear a mask anytime I step out. I’m still not back at work; even though I was hoping to go back next week, I’m thinking I will need more time to fully recover.
My next infusion is at the end of May and even though my primary care physician is suggesting I skip it this time, I’m waiting on my gastroenterologist to decide when to resume my Entyvio. I am a bit afraid to go for an infusion but I’m also afraid to go into a flare at this time as well.
My tips for the IBD community mainly include stay safe and isolated as much as possible from this virus. Take all precautions when going to an infusion center or the hospital. This virus hit me hard but I’m praying I will continue to improve and I’m hoping to be healthy again so I can put this behind me once and for all! Hoping for the best for the IBD community!
ELLEN, IBD CAREGIVER
My name is Ellen and I’m a caregiver for my 17-year-old daughter, Jenna, who lives with indeterminate colitis of her j-pouch. Jenna is on Humira along with Budesonide and Tinidazole for the chronic pouchitis.
On the night of April 5th, I rapidly developed a headache, body aches, chills and fever and immediately thought it may be the beginning of COVID-19. Nausea and diarrhea developed by morning and I messaged my doctor to discuss. She evaluated me by phone and advised me to assume I was positive for COVID-19. However, I could not be tested since I didn’t meet the criteria without having major respiratory symptoms and because of limited testing availability in my area in New Jersey. She advised me to stay well-hydrated and take Tylenol as needed.
My course of suspected COVID-19 was very mild. Luckily, my fever broke after 24hrs. My headaches and GI symptoms were mostly gone by the 3rd day and had fully resolved by the end of the first week. Mild respiratory symptoms of throat inflammation, hoarseness, dry cough and chest irritation did develop but these were again mild. I had some shortness of breath if I increased my activity level otherwise I was ok. By the third week, I experienced fatigue with some residual respiratory symptoms at night.
I made it a point to contact Jenna’s gastroenterologist and make her aware that I likely had COVID-19. Her doctor’s recommendation was to continue all of her medications, to follow CDC guidelines for when someone has COVID in the house (which we were already doing) and to call if she experienced any symptoms. Even though Jenna handles her own oral meds, I help her with her weekly injections. To give her her Humira, she and I were both masked and used bandanas for extra protection.
During this time, there were only 3 of us home, including Jenna, my husband and me, so we each were able to isolate separately within the house. Jenna’s room and bathroom are on a different floor so it was easy for her to be distanced from me. She used the dining room to eat while my husband and I ate in separate areas of the home. The kitchen was challenging though, since we each needed to grab food. My rule was no one could enter the kitchen without a mask and hands had to be washed right beforehand! And if in doubt, wash them again!
Once I was ready to eat, Jenna did make me tea and toast but she made me get up to get it myself after she quickly escaped back to her room. Soon thereafter, I was able to get my own food and I resumed making dinner for us all (masked and thoroughly washed hands). Nevertheless, we continued to eat separately until recently. Doing so was about protecting Jenna’s physical well-being but isolating came at the detriment of her emotional health.
During this time, Jenna would text me throughout the day to see how I was feeling and to make sure I was hydrating. I would also keep tabs on her health. We were both concerned about each other but we were more anxious for her health. It was quite a relief for us once I started feeling better.
Being a caregiver is not an easy task nor is managing a household. I actually planned and prepared during the weeks before in case either my husband or I might get sick. The house was always fully stocked with food, supplies and clean laundry and I was lucky that my daughter is old enough to take care of herself. All that said, It’s hard on everyone when it’s Mom who’s the one down with a virus.
My advice to other caregivers is to be prepared, have a plan and backup support if possible. It really does ease anxiety. I am fortunate that my case of suspected COVID-19 was relatively mild and I’m thankful that Jenna has not shown any symptoms to date.
DR. KEITH SIAU, GI DOCTOR
Hi, I’m Keith. I work as a gastroenterologist in a liver ward turned COVID-19 ward in Birmingham, UK. On Easter Saturday, as I was supposed to start my on-call nightshifts, I developed night sweats, muscle aches, headache, tiredness and diarrhea. I couldn’t think straight. I doused myself in perfume, and when I couldn’t smell a thing, I knew this was COVID-19. Like most people, I attempted to rationalize things. How? Where? From whom? What next?
I had been giving COVID-19 education at work and on Twitter, doing everything by the book and being obsessive with hygiene. I had no idea how I caught it. My wife immediately quarantined me away from my 2 girls (a 3 year old and a 6 month old). I phoned up work and the on-call staffing manager wasn’t clear on testing for staff. Like any responsible person, I turned to Google which was none the wiser, so I turned to Twitter for advice. The support was phenomenal – within an hour, I was contacted by professionals everywhere, including those who ran the Birmingham testing lab.
Luckily, I had access to a thermometer and an oxygen saturation probe. Given that I was likely to have exposed my family when I wasn’t symptomatic, I asked Twitter whether I should be isolated. I didn’t see the point of isolation, given that most people reach peak infectivity 2 days before being symptomatic. This was my get-out-of-jail card from my unimpressed wife. Her response was definitive – I was to stay locked up. The next 24 hours were hard. Much of it was spent FaceTiming my kids between episodes of comatose sleep. My wife was an amazing caregiver; she took care of everything for our girls and left food and water outside my door.
The next day, however, my wife developed fevers. She couldn’t cope with the children. I was feeling slightly more lively then and decided to break quarantine. Following Twitter advice, I wore a mask. This made my baby cry so that idea was promptly ditched. We tried our best with hygiene precautions, but that day was a particularly hard one.
On Easter Monday, hospital transport arrived to drop off a swab for my wife and me. We were aware of how deep the nasal swab had to go to avoid a false negative test (about 6 inches in). There was no way we could do that – I was coughing then and gave a sputum sample and did a superficial swab.
We stayed vigilant for COVID-19 complications. Fortunately, we had a thermometer and a saturation probe handy. We followed breathing regimens as advised on Twitter. We had enough food, although we had to ask a friend to drop off some cat food and paracetamol.
I don’t have IBD and I’m thankful for this. My patients had a lot of questions when the news of COVID-19 first broke, but thankfully, national societies and patient support groups have really stepped up to provide guidance and clarity when needed most.
My tips? If you haven’t been affected, stay healthy. Wear a mask, stay indoors, observe hand hygiene. Don’t be shy to reach out for help. During these times, no favor is too big and no question is too small. These are testing times. Make provisions: invest in a thermometer and an oxygen saturation probe. Make sure you establish your support networks early. Remember that supermarket deliveries can be patchy if you’re low on food, paracetamol, or essential supplies. Understandably, quarantine can be difficult if you’re alone.
Conversely, you can also play a part in helping others. You can also make a difference to the lives of others. Even something as simple as a phone or video call could make somebody’s day. I’m thankful to Tina for inviting me to share my COVID-19 story to give you all hope. My case was mild and I know some of my healthcare colleagues have not been so lucky. Stay safe and God bless everyone.
And that’s a wrap, folx! Hope this blog post helped allay some anxiety around COVID-19. Please know this community is here to lend you a shoulder to lean on and cry on. So, own your Crohn’s, own any exposure to Coronavirus, and take charge of your care proactively to hopefully prevent symptoms from spiraling.
LOVE, LIGHT & PEACE ALWAYS!
If you enjoyed this blog post and others, please feel free to share. Sharing is caring! As always, I love hearing from you all! Please do drop a line and say hello!
For more information on Managing IBD During the Pandemic & Tips for Telehealth, check out a related blog post: https://ownyourcrohns.com/telehealth-ibdcare-covid19/
Lastly, tune into About IBD’s podcasts on COVID-19 & IBD. In a recent episode, one IBD patient shares her experiences with COVID-19, IBD and donating plasma: https://aboutibd.com/2020/04/14/about-ibd-episode-68-what-its-like-to-have-ibd-and-covid-19/
