← Return to Any Long Haulers have Ulcerative Colitis from Covid

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@kitty2

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

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Replies to "Hi catz5000, I got Covid 12/19/2021 right in the heart of the pandemic. I had Colitis..."

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.