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dval (@dval)

Ulcerative Colitis flare from flu shot?

Digestive Health | Last Active: Mar 24 12:27pm | Replies (16)

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@astaingegerdm

@dval – Oral budesonide sounds like a good choice now.
My GI story is convoluted! In my 40s I was diagnosed with GERD and gallbladder dysfunction. After gallbladder was out symptoms continued- gravel in bile ducts, causing pancreatitis.
Twelve years ago I developed diarrhea suddenly- autoimmune colitis. Even after treatment I would get bloated, have pain and fatigue. It took years to get a diagnosis, because of different types of biopsy results. I was then treated with immunosuppressant for several months. I’m still fine except for extreme Brain fatigue. I compare it to burn out from the stress of continuous abdominal pain and discomfort.

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Replies to "@dval - Oral budesonide sounds like a good choice now. My GI story is convoluted! In..."

I’m so sorry and I understand. GI issues are so unpredictable and they take their toll emotionally too. I believe there is also a stigma attached, especially when you’re on a special diet. When I was at my worst (bloody diarrhea all day and night, too weak to leave the house) I researched constantly, read studies, prayed… I found much evidence on whole food plant based diets; one guy even claimed that it cured his Crohn’s disease. I was so desperate and miserable, I figured I had nothing to lose. I sent my husband to several grocery stores with lists and notes and started cooking and eating a plant based diet. Friends and family, while trying to understand this “vegan” like way of eating, were apprehensive, yet supportive, and we all learned a lot. There are so many recipe sites out there and I was determined to stop losing weight and to feel better! And it helped!! I started the new way of eating a couple weeks before the first Entyvio infusion and by the end of the loading dose period, I had stopped bleeding. Three months later my weight stabilized and for the next 10 months I felt better than I had in years. I do have extreme fatigue after an infusion and this annoying respiratory mucus, but I can live with these side effects. I was thrilled to be able to leave the house without fear. Of course, this covid world has changed all that, but I was in remission and I felt healthy. I think that’s why I am so devastated to be back in a flare. I am fortunate, though, to have a brilliant and compassionate GI doc that is always reachable, compassionate and treats the patients, not the disease state. Sometimes I meet other patients in the infusion center that are on Entyvio and we talk about our conditions and how lucky we are to have our doctor. Yes, these autoimmune diseases come out of nowhere and knock you on your ass and people just don’t get it! So again, I thank you for your comments, support and for sharing. I wish you the best in your battle and more good days than bad ones. These are things we have to live with and find ways of doing so….