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Did anyone tell you about having IBD or something else?

Posted by rely1ngonhelp @rely1ngonhelp, Sep 3, 2023

Hi everyone this is Jennifer again and I am asking this question because I saw a rheumatologist last Thursday afternoon. And he told me that I might have an autoimmune disease and even possibly have Inflammatory Bowel Disease. Were any of you told this and then tested for it and found out that you have it? I never had any outside of IBS and Fibromyalgia but now with my hands I am being told that I might have something autoimmune. He pressed everywhere on my body and all I felt was pain and extreme soreness and stiffness. I do have some swelling but I never knew truly why.

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kayabbott | @kayabbott | Sep 4, 2023

I have IBD, not from covid but associated with pre-existing celiac. Mine is collagenous colitis: it is diagnosed by microscopic analysis of colon biopsy samples. There are a number of other IBDs, such as Crohn's and ulcerative colitis. IBS is a bit like IBD, main difference is the physical evidence of disease as opposed to symptoms of. Hopefully he/she referred a gastroenterologist for you. From someone that collects autoimmune diseases, it is useful to keep a food log of what you eat and see if there is any commonality between that and your symptoms. Hard to avoid stress when our bodies are hurting, but escape is important.

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1 reply
dloos | @dloos | Sep 4, 2023
In reply to @kayabbott "I have IBD, not from covid but associated with pre-existing celiac. Mine is collagenous colitis: it..." + (show)
@kayabbott

I have IBD, not from covid but associated with pre-existing celiac. Mine is collagenous colitis: it is diagnosed by microscopic analysis of colon biopsy samples. There are a number of other IBDs, such as Crohn's and ulcerative colitis. IBS is a bit like IBD, main difference is the physical evidence of disease as opposed to symptoms of. Hopefully he/she referred a gastroenterologist for you. From someone that collects autoimmune diseases, it is useful to keep a food log of what you eat and see if there is any commonality between that and your symptoms. Hard to avoid stress when our bodies are hurting, but escape is important.

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Kayabbott
Curious what you mean by “escape”. I sure like the sound of that.

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kayabbott | @kayabbott | Sep 4, 2023
In reply to @dloos "Kayabbott Curious what you mean by “escape”. I sure like the sound of that." + (show)
@dloos

Kayabbott
Curious what you mean by “escape”. I sure like the sound of that.

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One problem with serious illnesses is that they can consume a lot of our time. They hit us physically and emotionally. Important to treat our illnesses, but not live in them. Any excape from the stress is good, exercize, volunteering, chocolate, movies and books, being with friends and family that support us, enough sleep, and basically looking out for ourselves. Be kind to yourself.

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1 reply
dloos | @dloos | Sep 4, 2023
In reply to @kayabbott "One problem with serious illnesses is that they can consume a lot of our time. They..." + (show)
@kayabbott

One problem with serious illnesses is that they can consume a lot of our time. They hit us physically and emotionally. Important to treat our illnesses, but not live in them. Any excape from the stress is good, exercize, volunteering, chocolate, movies and books, being with friends and family that support us, enough sleep, and basically looking out for ourselves. Be kind to yourself.

Jump to this post

Kayabbott,
I get it, and I try to do those things. But I do feel so many suggestions are great if you are fairly functional. I’ve been walking, resting, distracting myself in as many ways as I can but this thing is ALWAYS with me.
My main issues are impaired hearing, full feeling and underwater feeling ears, plus distorted vision. I also have stomach issues anxiety etc. but, I believe my perceptions issues (eyes,ears), hinder me the most in trying to live any sort of life.
Thanks for you comments. Good luck to all.

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kayabbott | @kayabbott | Sep 4, 2023

Good luck and best wishes to you as well. I have a number of autoimmune diseases and other nasty bits. I try to ignore them as best I can and find things that I can do. I think it helps to be an introvert because I look within to escape my maladies. Anxiety is a tough one. it can hit so many areas of life. Are there areas that you can use your hands, such as turning wood or clay, or other tactile hobbies?

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1 reply
dloos | @dloos | Sep 4, 2023
In reply to @kayabbott "Good luck and best wishes to you as well. I have a number of autoimmune diseases..." + (show)
@kayabbott

Good luck and best wishes to you as well. I have a number of autoimmune diseases and other nasty bits. I try to ignore them as best I can and find things that I can do. I think it helps to be an introvert because I look within to escape my maladies. Anxiety is a tough one. it can hit so many areas of life. Are there areas that you can use your hands, such as turning wood or clay, or other tactile hobbies?

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My vision is an issue. I was always a big reader, but find it difficult now. The light on the screen helps me somewhat but I also get screen fatigue.
Walking is helpful for me when anxiety is high.
I have become quite clumsy which is a new one for me.
Thank you for your suggestions.
I suppose I am just getting used to being in poor health. I had been a very healthy person until this.
(Now 16 months)

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1 reply
kayabbott | @kayabbott | Sep 4, 2023
In reply to @dloos "My vision is an issue. I was always a big reader, but find it difficult now...." + (show)
@dloos

My vision is an issue. I was always a big reader, but find it difficult now. The light on the screen helps me somewhat but I also get screen fatigue.
Walking is helpful for me when anxiety is high.
I have become quite clumsy which is a new one for me.
Thank you for your suggestions.
I suppose I am just getting used to being in poor health. I had been a very healthy person until this.
(Now 16 months)

Jump to this post

Long term illness is hard, physically and emotionally. It also changes the dynamics with friends and associates. Some people are there for and with you, others not so much. With long covid I can't do as much aerobic exercize, but weights and yoga stretches (physical therapy) help with my balance (neuropathy). I'm 69, and collecting illnesses has been a sucky hobby, but I have learned a lot from them. I have found it takes me about 1.5 years to adjust to the various afflictions.

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covidstinks2023 | @covidstinks2023 | Sep 5, 2023

Precious one, Yes! I have several issues with Long Covid that I didn't have before. I also already had IBS-C (I am on Linzess which has helped greatly) & Fibromyalgia which both were worsened with Covid and now, they are deciding which new autoimmune disease I have. They are going back and forth from Lupus to Mixed Connective Tissue Disease. I just know I have not been the same since Covid last August in many ways. It has greatly weakened my immune system, ramped up my arthritis (hands, knees & feet) & asthmatic bronchitis. I am now more prone to pneumonia.
God Bless you & I am praying for you. Hugs & Prayers....

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