Any Long Haulers have Ulcerative Colitis from Covid

Hi again, I forgot to ask you what state and city you may be in. I am looking for a new doctor that is compassionate and understanding of this disease. I am in minnesota. I had a repeat covid test last night, and it was not detected this time, probably Asthma like you. I also had the the Johnson and Johnson vaccine one day before they pulled it off the market. Thanks for all your help. Us long haulers need to stick together because we get it. Thanks Kitty2

I’m in Memphis, TN and am just fortunate I found doctors that took me seriously!! My Internal Med doc was checking with me the whole month I had COVID. I had all the Pfizer boosters and am uncertain about getting this new booster. Any thoughts???

Hi..thanks so much for your reply..I have not had a covid shot since I had the johnson and johnson which I had problems with right away..got me to the ER with the highest blood pressure I can ever remember and really bad back pain. I have not been taking any vaccines of any kind since the initial one. I am so glad for you that you have doctors that understand that this is real. I also have a unruptured brain aneurysm and went to a new neurologist and he made me feel like I was making a big deal out of it. He kept repeating that I had anxiety..he was actually giving me anxiety..I will not be going back to him thats for sure. I made an appointment to go back to the long haul clinic for a follow up...maybe thats what I need as they deal with this all the time. Please stay in touch..do they want you to have the vaccines ? Sincerely, Kitty2 sending virtual prayers and hugs.

Kitty 2!
I’m so sorry you are having these issues. I used to work in Neurosurgery!! A brain aneurysm of any kind is a huge deal. I’d go see a Neurosurgeon to follow you for that. You are absolutely right about not knowing how it’s going to be on any day!

Hi..you cant believe the conversation we had when I was at the appointment..this dude made me feel worse during the appointment ..all he said was that I had anxiety..he was a quack . He just said I needed to have a sleep study. We just have to hang in there, one day at a time.

So interesting to read folks’ accounts of bowel issues after having had COVID.

I think I had a mild COVID case 4/2020. Low grade fever for 3 weeks, but no one was testing and primary not seeing patients at time. When I called, primary, was advised to take Tylenol, rest and get fluids.

Started having horrendous headaches around 5/2020. Saw neurologist 8/2020, who prescribed a whole host of drugs with no relief. Finally started taking Gabapentin 12/2020. Some relief.

Then, had full -blown COVID 12/2020. Tested + 12/8/2020. Down for a month.

Starting 4/2021, began to experience explosive diarrhea about every 3-4 days. No regular bowel movements since 4/2021 thru today, 9/2023. Gastro has no idea what’s going on.

It’s been horrible. I travel quite a bit and never know when the explosion will hit. The occurrence is now about every 2 days. Clock work. Never never had issues before 4/2021.

Going to be tested for bacteria and such late Oct 2023. Thinking about trying gluten free to see if that’s the issue (tho never had this issue before 4/21). Ugh.

Hi..thanks for your reply..they know covid has caused gastrointestinal problems but they really do not know what to do except to prescribe a bunch of meds that have alot of side effects that make matters worse. I am a long hauler and my immune system can not fight off anything anymore. I know all about the explosions, mine are on a daily basis. This is a ugly disease and no cure for it at this time. I just got retested for covid twice in the last month, both were negative but I got some nasty virus now that I can not fight off. Get tested for the bacteria , did they do a colonoscopy on you also? I hope you start feeling better soon, we all need to stick together. Sincerely, Kitty2

Kitty2 — thank you so much for the reply. Sorry you’re experiencing such bad symptoms. There’s been so much happening with me over the last 2.5 years that I can’t attribute to anything but COVID. Severe debilitating headaches, legs don’t work when I stand and start to walk, lightheartedness and racing heart to the pint of almost passing out, out of breath when I climb stairs, fatigue, and of course the gastro stuff. Unfortunately, I believe COVID has unleashed a host of ailments on the world and there are no cures. Thx again for sharing.

I had colitis symptoms for approx 5 weeks. But I think it was caused by widespread inflammation and edema which also was going on. I started taking probiotics which helped some. Was not able to take steroids as the inflammation caused bilateral carpal tunnel which I had to have repaired. The colitis symptoms have gotten much better. Hope you get better soon!

Hi I actually got a laugh when so many people said their go to is oatmeal, and nut butter on bread with banana, I've eaten many hundreds of those myself! You sound like me with the multiple symptoms, my heart goes out to you. I've had horrible GI symptoms for almost 2 years now. Just had my 2nd abdomen CT with contrast scan, nothing of consequence showed up, have had coloscopy endoscopy, you name the test I've had it...along with GI, also have cardiac arrhythmia, and the heart racing wakes me up at night so my sleep is horrible, Chronic fatigue, now the new insult of nerve tingling and feet numb. I even had my thyroid removed! as my Endocrinologist and Cardiologist were SURE it would cure at least the heart arrhythmia, but NO still have it. After the surgery recently developed the nerve symptoms Why? One thing you can try for your GI symptoms, and I've tried a lot and its not a Med...I've tried meds and fiber and you name it for the GI issues, nothing worked, and I'm nauseous every day most of the time too. I go to a Chinese doctor for acupuncture which helps a little so far for mostly just feeling a bit better for a day here and there, but at least its something and feeling close to normal is a joy, but really disappointing when it goes away again. BUT this might help you and its not any meds, he also recommended a Chinese healing based diet for my endless bowel problem...its a lot of carbs and grains, and a not wonderful watery rice porridge for breakfast and I also have a hot cup of bone broth with that. You can eat only cooked vegetables, and fruit only 2 times a day and NOT for breakfast. nothing can be cold only room temperature or hot, and no coffee or tea for now only hot water. Everything has to be cooked and you MUST have a grain with every meal, NOT whole grain, it can be noodles or cooked grain or can include bread but nothing whole grain. Meat, fish,chicken and only soft spreadable cheese. mIlk ok. NO spices NO pepper only salt and soy sauce. I'm sure you can find a version of it on line its classic Chinese medicine healing diet. Hes not big on probiotics thinks they cause too much gas ( which they do to me ). After only 2 days of it, I had my first day of regular bowels. I could not believe it, he thinks if I can keep this up I'll get more nutrition from what I eat and I'll feel a lot better, I hope so! Worth a try and its not meds that for me so far all have side effects that are almost as bad as the symptom. I'll give you some hope, my sister had this too, not nearly as bad as me, but she is over it after having it for a year. I'm almost 2 years but maybe our bodies will eventually fight back or there will be at least some progress in understanding what covid and sometimes the vaccine has done to people. I was vaccinated 5 times so who knows if that contributed, also had covid once, right after that all my symptoms started UUGH! I wish you well and try the Chinese diet, its the first thing that actually worked for me through all this time.