Any Long Haulers have Ulcerative Colitis from Covid

Posted by kitty2 @kitty2, Mar 1, 2023

Hi..do any of you have Ulcerative Colitis as a result of having Covid and what is working or not working for you as a result of this illness. Any feedback would sure be appreciated. I have been taking Budesonide for months now and i think this drug is making the Colitis worse.
Thanks in advance for your respones.
Sincerely,
Kitty2

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@gbw

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.

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Thank you for the diet suggestion and info. NO COFFEE…ouch. I’m certainly willing to give it a try. Anything to get past these symptoms.

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@pat100

Thank you for the diet suggestion and info. NO COFFEE…ouch. I’m certainly willing to give it a try. Anything to get past these symptoms.

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The Chinese medicine diet is working for me to stop the crazy bowel symptoms, I hate making food something to not look forward to, as its one joy we can have even when feeling awful. I tried lactose free, gluten free, fiber, you name it, I'd already given up coffee so that wasn't hard for me to not have it on this plan. This plan worked very quickly, within days! Really great to be able to be out in the world a bit without worrying about bowel uncertainty. My hope is once its stabilized I can switch to more normal healthy eating again and just use some of it. Its not horrible, its just different from my normal way of eating, and sometimes hard for me to plan ahead of time what I'm going to eat, but has been worth it (and I don't stick to it 100% but its still working). Have you looked into Dr Boon Lin a cardiologist in London who deals with many long covid people, he has some great videos and interviews. I just discovered him and find him very helpful, and its not about more drugs that don't work, its common sense things you can easily do to reset your metabolism in ways that are pertinent to long covid effects. It really helps me calm down about it all, because like all of us I can get Depressed and desperate to find a solution after almost 2 years of this. I wish you well, hope you find solutions that work for you!

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@gbw

The Chinese medicine diet is working for me to stop the crazy bowel symptoms, I hate making food something to not look forward to, as its one joy we can have even when feeling awful. I tried lactose free, gluten free, fiber, you name it, I'd already given up coffee so that wasn't hard for me to not have it on this plan. This plan worked very quickly, within days! Really great to be able to be out in the world a bit without worrying about bowel uncertainty. My hope is once its stabilized I can switch to more normal healthy eating again and just use some of it. Its not horrible, its just different from my normal way of eating, and sometimes hard for me to plan ahead of time what I'm going to eat, but has been worth it (and I don't stick to it 100% but its still working). Have you looked into Dr Boon Lin a cardiologist in London who deals with many long covid people, he has some great videos and interviews. I just discovered him and find him very helpful, and its not about more drugs that don't work, its common sense things you can easily do to reset your metabolism in ways that are pertinent to long covid effects. It really helps me calm down about it all, because like all of us I can get Depressed and desperate to find a solution after almost 2 years of this. I wish you well, hope you find solutions that work for you!

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Thanks so much for your reply..I am going to look this up..it is so hard to convince the medical profession about this long haul stuff..they just tell us we have anxiety or ignore us and just do not call us back. I am almost at two years too. Thanks so much for your information, we all have to stick together. This is my new normal..darn it. Please take care and let me know how you are doing. Kitty2

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I’ve spent the last few months being tested for gut cancer. Lost 2 stone in 6/12 post Covid and nausea which I ve put down to post nasal drip. But gastroscopy has shown severe extensive gastritis. Never had that before! All symptoms started post nasty bout of Covid partial collapse lung and inflamed liver spent some time in bed at home. There is a link with inflammation in the gut re paper in Nature.
V interested in your dietary suggestions as I have noticed I tolerate warm food better than cold.

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@fiona57

I’ve spent the last few months being tested for gut cancer. Lost 2 stone in 6/12 post Covid and nausea which I ve put down to post nasal drip. But gastroscopy has shown severe extensive gastritis. Never had that before! All symptoms started post nasty bout of Covid partial collapse lung and inflamed liver spent some time in bed at home. There is a link with inflammation in the gut re paper in Nature.
V interested in your dietary suggestions as I have noticed I tolerate warm food better than cold.

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I also have developed gastritis a severe case,thyroiditis, which is caused by autoimmune disease, barretts desease, I now have 2 ulcers,diverticulosis, lichen planus a rare eczema, glossitis on my tongue,nodules on both left and right thyroid looks to me covid was made to destroy are immune systems.

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