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124 Covid Experiences from UC’ers

Ulcerative colitis covid cases 2021
The mix of participants and their related countries

All of the survey participants were asked if they tested positive for COVID-19, how they managed to get past the virus. About half of the participants decided to respond to this next question. Below are their answers:

  • I got all the symptoms, which made me not eat for two weeks and went on only eating a very minimal amount of about half cup of soup with alittle chicken for two weeks. it helped clear my symptoms up, to the point I thought I was cured. Then six months later I had a flare up and properly diagnosed with uc. which I’m in a flare up over three months and counting.
  • i was on azathioprine when i got covid. didn’t clear the virus. they advised me to stop aza and take fabiflu. i got over the virus. luckily my colitis has been under control and i’ve been without the aza now for a year. only on mesalamine.
  • I had been on prednisone for a couple months before testing positive. COVID symptoms lasted for about 3 weeks. I had lost of taste and smell for about 2.5 months. Temperature of no higher than 101 for about 10 days. No energy for 2 weeks. No congestion, but did have nasel sores and felt very weird in the middle of my head the whole time….unlike any other virus I have ever had. I did not take any additional medication except for Tylenol at a regular doses to help with fever and aches. I was and am still taking Lialda. So, I wonder if being on Prednisone helped me from getting worse????
  • I have UC but was not having issues when I caught Covid. I did experience abnormal diarrhea during that time but no blood
  • 2 weeks with flu like symptoms. 2 months trying to regain my energy and proper breathing.
  • Very long and rough illness. After I was well I went on Prednisone off and on for several months, it has taken me a long time to get over the UC symptoms. I did a very strict diet, clean eating and tons of water. Stayed on the same medications but it has taken a lot of discipline getting to normal. Not vaccinated.
  • No bad experience. Mild fever. Phyiscian prescribed ivermectin and kept all my uc medication continous. Added paracetamole on sos basis.
  • Received the monocolonol antibody treatment
  • I was covid positive and it took around 16 days for me to recover from the virus without having any severe problems. I was taking Mesalamine from past 7 years and maintaining a healthy diet but once I got covid, I noticed some changes in my bowel movements and it triggered my UC. My doctor said that the reason for the inflammation was caused by the antibiotics and pain killers which I took during my covid treatment. I was suffering with severe gastric pain and blood in my stools so my doctor prescribed me prednisone for few weeks and it helped me to get better. I got my first dose of covid vaccine after 4 months and there is no side effects or any health issues after that.
  • Ok, I got pretty sick. Took about 2 weeks to get over the bad part. I am still very tired and get exhausted at times, like when I am in a flare. Ita been 8 months since I had it.
  • Not pleasant but after worrying if I’d be worse affected than others it was a pretty standard case of flu symptoms
  • I tested positive on July 5 2020. There were no effects on my UC. I had a fever for 9 days and I lost 15 pounds. I take a Simponi injection once a month.
  • I got my first shot of the Physer vaccine on 3-11-21. On 3-14-21 my grandson and his family visited me from Arizona. They went back to AZ on 3-15-21. Grandson called me on 3-16 and said they all had Covid so I wasx exposed.l I went to Urgent Care on 3-16, got tested as I was already running a fever – tested positive. Got reallly sick , fever, chills, headache. On 3-19-21 Dr. called and said I was eligible for a infusion – went to Urgent care and was hooked up to the IV which took one hour and then I had to sit there for an hour – The nurse giving it to me said I would feel 100% better when I walked out of there – I was 100% worse and spent a bad night with fever and chi9lls which were going away before I got the Infusion.l so went back to urgent care when they opened the next day (a Saturday) at 9 AM – was told nothing other than I had covid and to face it – i battled it for another week. I am 85 and the only thing different now is that I get out of breath easily, especially when going up and down stairs. Never had this before covid. I’ve had UC since I was 23 and triked everything under the sun until I started on Medical marijuana 2 years ago – that cured me – Only take a few drops of two different oils twice a day on my tongue! MM is a miracle for Ulcerated Colitis people.Only problem is, it’s expensive and have to be recertified by state every year and that costs $100 and recertified by doctor every year and that costs $170. I was told not to get my second physer shot after the Infusion for at least 90 days – I didn’t get it at all but now my adult son has covid and I might get this new delta virus so am going to get the second physer shot now.
  • Tested positive and stopped Azathioprine. At time no advice from our healthcare system but found info online which also found its way to Adams site. Our system now also recommends this strategy. Day 2-4 pains and bedridden and hoping for the day when it stopped getting worse, which was day 5 so restarted medication day 6. Not usual energy for 2-3 weeks and only actually “ill” for about a week. Wasn’t really in fear before positive and certainly feeling immune now.
  •  tested positive 5 months before I received my vaccine. I was completely asymptomatic
  • I have been on Entyvio for two years prior to getting Covid. I had been in remission. I had diarrhea as one symptom of Covid. I started bleeding and things progressed. I recovered without hospitalization but my UC flared. I had the vaccine approx. a month after having Covid. UC flare got worse. After the second shot of the Pfizer vaccine my UC had been worse now than ever in my ten years of having it. I am not against getting the vaccine, and it may just be coincidence, or maybe I should have waited longer after having Covid to be vaccinated. I have watery bloody stools 15 + times a day. I would be very interested to hear from other UC’ers who have been vaccinated after having Covid. Did you flare like I did?
  • My worst symptom was coughing each continued 2 weeks past quarantine. I took prescription expectorant and Tylenol. I was not in a hurry to get vaccinated after since I felt safe. My gi dr said PLEASE. July 31 started a nasty head cold. Runny nose, sneeze, some cough. Once this subsides I may get vaccine due to family and work pressure.
  • I was put on a Z-Pak as I also had bronchitis. After a fee days I started feeling better.
  • not applicable, thankfully!
  • My experience was pretty easy. But I did have more symptoms than a lot of my friends. I had a fever for a full 10 days.
  • I was without symptoms except for one long blood clot from my calf to my pelvis. I was hospitalized for over a week and Am still on blood thinners.
  • Second Astrazeneca vaccine mid June, 11 weeks after first. Came down with cold like symptoms 24th July. LFT positive next day, confirmed with PCR day after. On no meds for UC as in remission (pentasa supps when needed, UC diagnosed 5 years ago, second flare). Symptoms with assumed Delta as this variant accounts for 99% of cases in UK currently were: temperature, runny nose, sneezing, mild sore throat, headache, sinus pressure and muscle tension (not aches). Used paracetamol which was ineffective followed by Co-codamol which did help. On day five, I no longer needed pain relief but lost my sense of smell which has only very slightly returned along with nasal congestion (for which I am using a decongestant nasal spray) and appearance of a dry cough. I also used Vitamin D, zinc and echinacea.
  • I am meant to be on Pentasa but haven’t taken it for years. My UC episode was pan colitis 2014/5 and I have been fine since other than needing b12 injections ( although I very cautiously reintroduced certain foods and still careful with dairy, Strawberries, mushrooms and onion). I was barely leaving the house, staying away from people, online shopping and being ultra careful sanitising etc and still have no idea where/ how I got covid….I first experienced a sore throat around Christmas time then terrible back pain I assumed from digging in the garden but later learned this is Covid. A few days later I developed breathing issues. I was not hospitalised but suffered breathing issues, chest pain managed with a humidifier and inhalers plus was given antibiotics (prior to +ve test). I suffered headaches and fatigue. After a week or so I forced myself to get up and muck out my stable each morning. It was really tough and initially I could muck out but was unable to push the full barrow, but I kept pushing to do a little more each day. I closely monitored my SPo2 that was frequently on the low side especially if I climbed stairs. I reacted badly to the AZ vaccine 1 month after covid and ended up on steroids and needing hayfever mess daily. Despite an immune meltdown I did not suffer any UC symptoms. My recovery has been frustrating and I still struggle during and after heavy exercise I also struggle to concentrate and still get brain fog. I am now 7 months post covid. Weird side effect…my hair is strange and hair dye doesn’t hold in it, I am always hungry. But I am just cracking on.
  • It was moderate with heavy coughing only a few days, I had my first dose vaccine before it happened. No UC problem.
  • Started with a sore throat felt like I was getting a cold. Joints ached, then lost sense of smell and taste. Told to immediately stop taking Tofacitinib (immunosuppressant) by me IBD team. I then experienced vomiting and diarrhoea. The diarrhoea was made worse by being off my medication. Developed a full body rash and now am suffering from post viral fatigue having to nap 3 to 4 times a day. Have been off work 4 weeks so far.
  • Initially when tested positive. Many generic medicines which were given were not approved by my uc doctor. I stuck to some basic medicine and home medication.
  • I surprisingly did not have any gut issues during my experience with the virus. I was sick with symptoms for about 10 days.
  • I’m on azathyoprine and my COVID was about average for my age (48). 8 days of fever, loss of smell, but not much of other symptoms. I was not vaccinated at the time I caught it.
  • It was like a flu for the most part but I did have a lot of GI pain and diarrhea.
  • Was practicing 100% of safe measures, developed pneumonia lost taste and smell terrible back pain, several different stomach issues from nausea to cramping to bloating to throwing up diarrhea to constipation ,terrible taste in the mouth, brain fog and all symptoms lasted 4 weeks. This happened in December before vaccines were available and I was not notified to stop by Humira by the Doctor Who diagnosed with Covid then Gastro told me I should’ve stopped using my Humira for that month I was symptomatic then another pharmacist at the Gastro office said that was poor advice you should never stop your Humira because the risks outweigh the benefits.. I would not have stopped my Humira even if I were told to do so because I fully believe for me the risk due outweigh the benefits. I have had brain fog ever since sometimes it gets a little better but it never goes away and it always comes back full force at times . I just decided August 3 to get vaccinated with Moderna realizing at this point the benefits of being vaccinated outweighing the risks with this new Delta variant and having elderly parents although I do believe any vaccination increases the risk of developing another autoimmune disease when you presently already have one which was my biggest fear keeping me from getting vaccinated. Now almost a week after being vaccinated I am still having Side effects of the vaccine which was five days ago and all are the symptoms I did experience during Covid just not quite as intently!
  • I tested positive for COVID-19 in Oct 2020 & have had my uc under control with Entyvio. None of my symptoms were extreme GI (mostly no appetite) related, however I did feel horrible & was in bed a good week with body/bone aches, unrelenting headache, sweats/chills, oxygen saturation dipped down to 90 but not dangerous etc. By 2 weeks I was significantly better. The hardest part has been the long Covid symptoms dealing with brain fog & a new found anxiety, they are still present & effect daily life. Wishing everyone good health. Side note, my brother who also has uc and had Covid was only sick a cpl of days and experienced no last symptoms!
  • I was taking Lialda, Vitamin D, and Zinc prior to my infection. My doc recommended Vitamin D, Zinc, Vitamin C, along with rest, fluids, lying in different positions throughout the day/night (including prone on my stomach), and monitoring my oxygen levels and temperature. Tylenol for fever, and if my oxygen dropped into the low 90’s and stayed there for an extended period of time, I was encouraged to seek medical care. I was able to recover at home. I experienced fever, diarrhea, the worst headaches I’ve ever had, fatigue, loss of taste and smell, minor cough and nasal congestion, and the strangest symptom of all was sudden crying spells. It took two weeks to recover, 6 weeks to be done with the cough, and 8 weeks to get back my taste and sense of smell. I had not been previously vaccinated.
  • Diagnosed with IBD/ UC in 2008 after my first colonoscopy, went through various worsening stages (and most of the medicines ) including c-diff and pancolitis before getting a fecal transplant and finding azothioprine / mercaptopurine treatment effective in ending about 80% of my urgency six years ago…having achieved some success with a strong immune suppressant like 6mp, messing with a rushed experimental vaccine does not look appealing at all !
  • I tested positive on Jan 6, 2021. Thank God it was a mild case – cold symptoms, headache, but I did lose sense of smell. It never progressed thankfully and my symptoms abated in about a week – the loss of smell lasted a couple weeks and the feeling of not being able to get a deep breath lasted a couple months. There doesn’t appear to be any long term effects. It didn’t affect my UC (diagnosed 2015, on Lialda). My doctor had me monitor my oxygen levels, take extra vitamin D and Zinc and I did drink a ton of water. As soon as it was available, I got the vaccine. No ill effects from the vaccine and I am very grateful for it.
  • I got it in July 2020 no vaccine at the time was on entyvio lasted 2 weeks I deem it to be a moderate case. Symptoms were chest congestion fever 103 deg loss taste smell lost 17 lbs in weight towards the end had what I thought was the start of a flare but only lasted 2 days then stools normalized. Did a regimen of probiotics vitamin c zinc while sick had to force myself to move daily not just lay there that was key hot showers to move out junk in the lungs. In the end no lingering side effects.
  • Did not have any symptoms.
  • I am no longer on any medications for UC. Stopped the Remicade about 2013. No problems since. I do not vaccinate.
  • I didn’t know I had it. I got the 1st of the 2 vaccine shots, but had to fly for a family emergency (daughter in stage 4 cancer), before I could get the 2nd shot, so I got the blood test to be sure I wouldn’t be carrying Covid to my daughter. The blood test came back positive with early stage Covid. I never did develop any symptoms, but had to cancel my trip until I had a clean blood test 4 weeks later.
  • Not vaccinated prior to getting covid, was really tired. Uc issues did not get worse thankfully. I’ve been in remission for the last few years too. Got the vaccine about 4 months after having covid. Hit me hard, but I was fine a few days after.
  • I felt bad for about 2 to 3 days. Lost my sense of smell, congestion, persistent cough, and yes, digestive issues. Most of the tough issues, including diarrhea, were gone within a week. I stay on my Apriso throughout the ordeal and the digestive issues eventually went away. I felt fatigue and had a few headaches for a couple of weeks after the main symptoms subsided. In April and May, I got the first and second shot of Moderna with no major reaction. I haven’t shown any symptoms of COVID since.
  • No chest or respiratory issues. Fatigue and loss of appetite Not vaccinated. On humira and methotrexate. Humira actually abated some of the flare and inflammatory issues… doctors kept me on it during positive testing. I tested positive for 4 weeks straight
  • I have not been vaccinated and tested positive before Christmas. I have been in remission controlling my symptoms for 5 years now. I felt like I had a fever when I first got Covid but never actually had a high temp. And I just generally felt like I was sick, maybe a little like the flu. But the flu has been worse for me. After about 24 hours I feel much better but not 100%. I had some lingering tiredness but nothing more than I feel I would’ve had with any virus. A couple days after feeling feverish, I did eat some Mexican food and then felt very Nauseous for about 6 hours. So I went back to a bland diet and was fine after that. I just listened to my body to recover slowly and I was good. I stuck mostly with foods I know are safe for me and pretty much always do. Things have been fine since. I feel I was very lucky to get such mild symptoms.
  • I had pneumonia (5% of my lungs were affected) and had to take really harsh antibiotics to cure from covid. I asked doctors to prescribe antibiotics that would be gentler on my gut given UC but they said that I would need harsh antibiotics regardless because it’s hard to rid of covid. Covid itself didn’t affect my UC however antibiotics did (rectal bleeding). My gut bounced back to normal once I stopped taking antibiotics and supplemented with probiotics. No long lasting covid symptoms 9 months after, the only thing is that my menstrual cycle got longer.
  • Rest. Fluids. Theraflu for daytime and melatonin for night to help sleep. Fully vaccinated with Pfizer. Did not lose sense of taste or smell. Symptoms Started with head cold, cough and then fever. Lasted for 3 days. Then just had lingering cough and fatigue but nothing too bad. No other underlying health conditions other than UC.
  • Fever only on day one. Extreme fatigue for six days. Minor cough and difficulty breathing.
  • I had barely a symptom…(sneezing and congestion) and in fact, was shocked I tested positive. I only got tested because my boss requested it. About a week later, I developed shingles!
  • I have been taking 3x 800mg Asacol twice daily and have had no flares for at least three years. At the beginning ofvthe year I switched to a Gluten-free, sugar free, dairy free nutrition plan and was feeling great. I tested positive in early June of this year and experienced all of the gastrointestinal symptoms – nausea, vomiting, diarrhea, loss of appetite. And while the fever, headaches and body aches were really challenging, the nausea was the worst. I did not feel like eating and lost about 5kg in a week. Hydration was crucial. Once the COVID symptoms eased, I went into a full-blown flare up which I am still trying to get under control. I want to avoid getting cortisone so have opted for supplements and probiotics which have helped ease the symptoms.
  • Loss of taste followed by positive test. Lasted about 10 days. Fatigue and headache main symptoms. Still had rare bouts of fatigue months after. UC hasn’t changed much.
  • Had covid Jan. 2021. Vaccines were not available. I was vaccinated with the J+J in late March 2021. Covid symptoms of fatigue, body aches, lack of appetite. Mostly gone although some inflammatory pain seems to be more sensitive.
  • I am double vaccinated so the effects were pretty mild all I had was flu like symptoms. Still have no taste or smells 3 weeks post covid
  • I take 2 Lialda daily. My Covid lasted under 2 weeks. I mostly slept the first 4days, then had some headache and nausea. I was lucky as my case was mild.
  • I am Dutch so please forgive me for my bad English In march 2020 I had probably corona. I became very ill and my lungs were infected. I ve stayed in quarantaine for almost 5 weeks. At one point I couldnt walk, talk and passed out a few times. Strangsly enoug the authoritues refused to test me. Back then the only way to test was a test at home with 2 people coming by. But the phases and the symptoms were the same. Except loosing my taste en smell But I am not 100% sure it was Covid alhough I was really sick. The second time or maybe first was octobre the 9th My son live in a student house and came home sick. We separate him but still after two days the first symptoms came My throat was burning I had a headache and a little bit fever. Three day later I was tested positive. These were my symptoms High fever 39.5 A lot of trouble with breathing Infected eye A lot of infections of my skin Lost of taste more than 3 months Lost of smell more than 6 months Word finding troubles Concentration troubles Most scary thing was I saw and heard things that weren’t there. My perception was so weird. For example I saw for sure that the logo on a car was Fiat and seconds later I realised it was Ford because my husband said how I xould be so wrong. I said things like can you get me a drink from the chair were I meant refrigerator and was sure I was saying the right word Or I was seeing a man walking toward with me with his funny dog. For 30 seconds I was both observing them. And I couldnt understand why they were gone. It was really scaru It took me over half a year before I could back to work for 100% And mainly because my bowels were completely infected. I took my pentasa but that didn’t help a lot I constantly fell a sleep Because the infection of my bowels were sincere I had a lot of pain. I went to the hospital but ended up in a clinic for people with sincerly pains. The doctor told me that because of the covid you can develop more pain experience in your nervesystem. And the pain in my belly was so extreme I could hardly walk more than 10 meters Almost 9 months later I am feeling so much better. My bowels arw still infected. And I still got a lot of pain. But most of the symptoms are gone. I need to take my medicine. But my breathing is a lot better and I can walk for more than half an hour
  • Did nor have Covid. I actually, since beingban immunosurpressed patient, I knew to stay at home, or isolated in my truck, as a truck driver who drove a bunk truck.
  • It was a bad experience for me since I had it twice. I got Covid pneumonia both times and was hospitalized. Now I have COPD on top of UC. I got vaccinated in March but I am afraid I might get the new Delta variant since I had the original variant and the UK variant. My lungs cannot take any more Covid and I am immunosuppressed because of my UC.
  • Had telemedicine consult with a doctor who does EARLY treatment of covid. used ivermectin to treat the covid within hours of the fever. Was fever free within 6 hours of ivermectin started. Day 2 had headache that was pretty bad and dr added Fluvoxamine and headache relief within a day. Took ivermectin for 5 days, Fluvoxamine for a week. Symptom free quickly and had to sit in isolation for full 19 days. Can find info about ivermectin if U google flccc ( front line covid critical care. They have protocols and list of prescribers. Also google Fluvoxamine 60minutes. No problems with UC during this time
  • Luckily I never got any of the respiratory issues that most people have. ALL of my UC symptoms got way worse though and have pretty much stayed at that level since.
  • Just fine. It was a 48 hour virus, 24 of those hours being bad with fever chills and muscle aches. Nothing long term.
  • I have had Ulcerative colitis for 19 years and had been in a UC flair for 4 years but on no medication as steroids quit helping. I sporadically take vitamin b12, Iron, and vitamin D for deficiencies. I had bleeding, stomach pain, joint pain, and urgency from the UC. I caught covid and was in bed for two weeks. I had high fevers (102.9), chills, body aches, severe joint pain, severe headaches, nausea, coughing, congestion, runny nose, and loss of taste and smell. I was in bed for two weeks and then broke out in an extremely itchy rash all over that lasted for roughly 4-6 weeks. The fatigue and joint pain lasted 4-6 weeks as well. I took 3 doses of zinc, vitamin C and Vitamin D while sick and then continued zinc once a week after. 2 weeks after being sick my colitis symptoms started to subside and after each dose of zinc they improved to the point of going away with the exception of my joint pain. I am 5 months out from having covid and still doing well. I did not have the vaccine.
  • On azathaiprine 50mg , dropped from 100mg when Covid began last year after feeling rough though turned out not to be Covid. Like most advised to shield but had to work when I could. Covid positive December 2020 (wife brought home from work) and you know you’ve got it. Stopped taking meds immediately and began again after 1-2 consecutive days of feeling better. 2 days in bed not too bad but worse than a 2-3 day cold/chill. 14 days to get back to feeling normal including the energy levels. Think having lower meds than most with alternative therapies helped in this case.

4 thoughts on “124 Covid Experiences from UC’ers”

  1. I have been in remission for 5.5 years. No UC meds in 5 years. Have felt the best I’ve ever felt. I fortunately have not have COVID but did get the Pfizer vaccine and within a week of first injection developed a UC flare. So devastating and frustrating. Anyone else in same boat? Remission… have not had COVID… but went into a flare from vaccine? I am not even considering 2nd Pfizer dose now.

    1. My son, 25, who has had UC since 2015, and mostly in remission, also had a flare within one week of getting the Pfizer vaccine, which lasted about 4 weeks. He was so reluctant to get the second jab that he delayed it for 4 months. His consultant insisted he get the second jab and eventually he did in July and didn’t get a flare.

  2. I am very afraid to get the vaccine. Where on the site can I find reactions good and bad from the vaccine from folks who are not on pharmacuticals -biologic I would like to know how others who do NOT take drugs but abide by SCD.

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