Any Long Haulers have Ulcerative Colitis from Covid

I know that this original post is a bit dated but wondering how people are making out with their UC triggered by Covid. I am also convinced that my teenage daughter ended up with UC after two back to back bouts of mild Covid 19 in spring 2022. Very upsetting as she had no prior issues with her GI tract. Struggles daily and has not entered into any sort of remission yet. Tried Pentasa which was awful on her system. Switched to biologic (Humira and biosimilar) and still not doing the trick. Has anyone experienced any healing yet or medications that really addressed the symptoms. I still have a bit of denial going on and hope that perhaps this is still an overshoot of extra inflammation in her body and will slowly go back to normal.

Hi catz5000,
I got Covid 12/19/2021 right in the heart of the pandemic. I had Colitis in 2000 and then went into remission without any drugs for about 20 years. The colitis went into full gear and I have been sick with it since then. Unable to get an appointment with a GI physician so it went untreated. The drugs they used were harsh, hospitalized twice, many side effects from Mesalamine products, and Budesonide..horrible stuff which has caused many health problems for me..they wanted me to take an IV Biologic..Entyvio..listen to the side effects that are in the television advertising. No thanks..I have known patients to lose their hair, also a rare brain infection which is fatal and no cure for it. I am not on any meds at this time. It took a long time to withdrawl from Budesonide and I did taper of the drug pretty quick as I had every side effect in the book and it made me more ill than the disease itself. My life has been impacted from all of this , my system is still so inflammed all over my body, even affected my teeth and gums, feet, from head to toe. I never know when my gi tract will rebel, I get so ill with the cramping ect. I too struggle daily and the doctors do not get it. The drugs affected my liver also as my liver tests are high and I dont drink any alcohol. They are blamming it on Tylenol but I know thats not the reason. I now have a chronic cough and it wont go away. I pray that your daughter gets some relief so she can return to a normal life because she is young and does not deserve this. We did not ask for this . As my employment advisor tells me : this is your new way of normal.
Let me know if I can help in any way. Sincerely, Kitty2

Hi Kitty,

Thanks so much for your reply and so sorry that you are struggling. I hope that you continue to stay strong to fight for the treatment that you deserve. I appreciate hearing about your insight and experience regarding some of the treatments available. We are newbies with this disease and feel somewhat overwhelmed. Any type of remission right now is our main goal. I just recently contacted a naturopath for my daughter to see if she can try some lifestyle and diet changes that might complement her medication treatments. I also suggested that she try intermittent fasting to see if it makes any difference. I know that a lot of this is trial and error. I find that any type of lifestyle or diet advice is very much lacking with our GI doctor as the "go to" is always a new drug - which I understand why they do this but I don't want this to be the only treatment. My daughter is finally off high does of prednisone so at least that is a relief for now. It was nice connecting with you Kitty. Nice to know that there are people out there who can relate to what we are going through. Sending healing wishes your way.

Hi catz5000

Thank you so much for your nice note. I was thinking about trying a naturopath also. You are so right about the go to is always a new drug, which indeed have so many side effects and make you feel so much worse. The doctors just do not get it. Have you tried any support groups in your area? I have found that helpful, except now my zoom audio is not working so I have not been able to join in. I made a decision that I do not want all these harsh drugs anymore, I want to do this more naturally. One doctor said to me there is no holistic cure for this disease. They all know that covid caused alot of us to get this darn disease, They just dont know what to do about it. I am sending healing thoughts and prayers for your daughter and you. This is a tough deal, and like my job coach says this is my new normal. It is nice to know that there are others who get it and can be understanding about this. I would love to hear from you again and hear how your daughter is. Sending virtual hugs. Kitty2

Hi Kitty,

I will connect with you again after we see the naturopath and I can share what she tells us. I know already that she wants to do a food intolerance test so we'll see. Not sure if this will help in any way but will let you know what it turns up. Also during one of my Google search marathons I saw some info related to 30 day diets that are supposed to reset your system. Again, not sure if this is going to work but at this point willing to try anything. Will keep you posted! Take care.

I got COVID 10/22. While recovering, had many intestinal issues. The worse was bloody stools. This went on for a couple of months. I made an appointment with a gastroenterologist. After a colonoscopy and endoscopy, I was diagnosed with Crohn's disease. I am 52 years old and never had intestinal issues. I was prescribed Lialda (mesalamine). The first week on it, I experienced flu-like symptoms and could barely get out of bed. My doctor assured me that mesalamine is well tolerated so I decided to try again after taking myself off of it for a week. Instead of taking a 3.6g dose, I decided to start with a 2.4g dose to see if I could tolerate it. After a couple of weeks, I increased the dose to 3.6g with no problems. Other things that I have learned along the way are as follows. At first, I could not eat/drink the following; dairy (except the hard cheeses like cheddar, provolone, and parmesan), anything tomato based, certain fruits (apples), and had to stay away from alcohol and sugar (candy, fruit juices, sweets, etc.). I started to get a little bit better but was still not great. I, like everyone, did some research and begin to think my gut biome was messed up (i.e. too many bad bacteria and not enough good bacteria). So, I started to do things that would correct this. I took a probiotic (adding good bacteria) and the things that I think helped the most were a multivitamin(helps the good bacteria flourish) and staying away from sugar (starving the bad bacteria). I also drink a minimum of 2.5L of water a day (flushing your system) and exercise 4 days a week. It has been almost a year and I am still taking the Lialda and multivitamin. I have gradually added back most of things I gave up but still limit my sugar. I am close to 90% back to normal with few intestinal issues these days. I am very thankful but it was a long road. During the journey, I had to adjust my expectations daily and was thankful for the smallest amount of progress. Lastly, when I was in the middle of it, the one thing that I found I could eat without many repercussions was peanut butter and banana on sourdough bread toast. I still have it every morning. Peanut butter is good for gut health. I hope everyone gets mostly back to where they were before this crap.

Thank you so much for your help. I tried Lialda..I could not tolerate it or any mesalamine products. I also got lesions all over my legs from it. Thanks so much for your reply. Please keep me posted. They know Covid caused these gastrointestinal problems, but they still do not know how to treat this. Please get well..this is a journey. Sincerely, Kitty2

FYI, I started a sub-thread about a prescription for Zifaxin for abdominal pain. My symptoms are echoed in these discussions. Many thanks for the useful information.

I’ve had colitis for years but it has been much worse since I have long covid. I now have asthma which developed a couple of months after Covid. I tried Budesonide but my GI doc said this was a short term drug. I’m now on Cholestipol which has helped some. I also take trade name Imodium which requires a prescription but is much more effective than the OTC brand. My diet is very restricted. No dairy, no tomato sauce, no concentrated sweets, carbonated drinks, no grains. I usually eat a regular bagel for lunch and chicken noodle soup for supper. This is nuts. I’m scheduled for a Colonoscopy in December. I kept reporting this symptom when I got texts checking up on vaccine side effects but I have no idea if this is just from COVID .
I was out from work a month last year. I have a very compassionate Internal Medicine doc who has helped me through this. It seems many people don’t believe in this aftermath of COVID.

Good morning..thanks for your reply. This is so true what you said, many people do not get it. We sound so much alike. My diet is so limited also. I think when they left me on the budesonide 9 mg high dose for 9 months that made my colitis and overall health go downhill from the high dose with the side effects. Covid has taken us to a level that no one can explain. I was in urgent care last night again. I have a cough that is unreal. I probably have Asthma now too. The PA prescribed Albueterol inhaler to loosen things up. What is Cholestipol? Did they put you on biologics at all? They scare me with all the rare side effects. I never know what my day is going to be like on any given day. Kitty 2