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I know this is a sign for me to log off IG but it is so discouraging that unfortunately social media is breeding a culture of misconceptions around our disease so many reels because I searched for Ulcerative colitis in the search bar when you get all these videos about fake doctors or people with UC healing with diet and a bunch of nonsense such as parasites etc. Whereas I type one diabetes, not a single thing about curing it with food or blaming diet. I wish people understood that this is not something you can cure or make yourself go into remission to with food and herbs or parasit cleanse…our disease is just as valid as any other that requires medication .

hello, UC friends I have made previous post in the past about how my colitis tends to get triggered on my period or right after and this time it happened again it’s been a thing even for years but I’ve had undiagnosed UC just as long, I guess before my diagnosis I’m not sure if it’s a separate thing or if it’s just a colitis, but this time I was in pain for several days after a bad bout I had to go back to low residue and take it real easy. I do have a full refill of budesonide as a an emergency, but I’m not taking it unless my doctor said too I took the fecal test and it turns out that my inflammation is really nonexistent. It’s down to 36 normal is 50. It was at 400. Just a few months ago so Skyrizzi is working and that is awesome but it doesn’t explain why I am in so much pain and I can feel it in my colon around my cycle, I haven’t found anything specific to my diet. I was also tested for celiac and it’s negative. The stool test also consists of pancreatic enzyme and I’m waiting on that. Just wanted to vent here. maybe it’s reproductive in nature if my pancreas is producing enzymes although I do share quite few of it’s symptoms like bloating nausea unexplained weight loss even pains around my upper left stomach. Fun disease !

this experience is my own if you don’t resonate thats ok it’s a different story for each of us if you can relate it’s for you! Do you recall the days before diagnosis before symptoms when we were happy go lucky kids or teens? before our 20s and 30s were a thought in our minds? We could hold our poop all day at school and not e thinking about having an accident! Fo on long road trips with family and only have to pee! We could be in a huge park with no bathroom and the anxiety was non existen, No interruptions except for dinner or bedtime. when we would go poop at home they were healthy! no pain no lingering urgency and we moved on to play and go about our lIves? I took those days for granted! 🙂 I was rich health wise! Grown ups would go on about how good health is superior to material wealth and I have to agree wholeheartedly! Those days were my good ol days

I have been in contact with my GI. Anyways I’m feeling very discouraged and a bit depressed I have my next Skyrizzi infusion in 2 weeks but still dealing with symptoms: pain with urgency some blood At times, but what’s bothering me most is lack of appetite and my body not absorbing much so now I’m loosing weight again even though I’m only going at most 3 times a day. I’m 98lbs…when I was on budesonide bef my infusion I had normal appetite and was able to stay at 102…this feels never ending…I Miss feeling hungry I don’t even eat much I get full easily right now. I hate this disease. Im truly trying to increase fats little by little and protein but it doesn’t digest well. I just want to cry…

I’ll check with dermatologist soon but I was curious about why my toenails are thickening but don’t look like typical foot fungus. Has anyone dealt with damaged nails? I have some damage on my fingernails but it’s very subtle. my bloodwork was normal except border low for ferritin…could this be an indirect symptom or completely separate?

I recently found out that one of my younger cousins on my mom’s side was recently diagnosed with ulcerative colitis as well, he’s in his late 20s and I’m 31! I know many of you are the only ones who have this condition but for some reason I didn’t feel like it was my case and then I find this out, I hope I’m able to reach out to him and be a another support for him. We all know how isolating this disease is and debilitating. He like myself have struggled many years but doctors couldn’t find answers til now. Its kind of a relief it’s not something we did we were born with it.

I feel extra “special“ because in 2019 I was diagnosed with microscopic colitis after struggling with a few years of flaring and weight loss, I was too scared of taking budesonide I thought diet and probiotics would be better than anything “big p h a r m a “ instead I continued to struggle on and off, I flared horribly a couple months pp and was diagnosed with UC. I feel like an anomaly. I wonder if MC was just my UC in somewhat remission or a precursor. I blame myself for not taking any meds.

I feel extra “special“ because in 2019 I was diagnosed with microscopic colitis after struggling with a few years of flaring and weight loss, I was too scared of taking budesonide I thought diet and probiotics would be better than anything “big pharma“ instead I continued to struggle on and off, I flared horribly a couple months pp and was diagnosed with UC. I feel like an anomaly. I wonder if MC was just my UC in somewhat remission or a precursor. I blame myself for not taking any meds.

I’ve been on budesonide over 2 almost 3 months I was back to no and ate with no issues now after this period my uc seemed to have been triggered. I have gas pains constan since yesterday and yes feel relief for a minute but the pains comeback no matter what I eat I’m in pain. I don’t eat I still feel the pain. I’m supposed to be start my first biologic treatment within a couple weeks SKYRIZI. How do you guys cope? I messaged my care team a few days ago I will again since my symptoms are becoming more severe. In the meantime what are things you guys do? this sucks 😭

For some reason my hormones mess with my uc during my period but mostly afterwards, my body does a clear out. it’s been tougher cycles because I’m on budesonide which causes my periods to last longer and come heavier, I’m waiting to start my infusion in a couple weeks, I pooped a lot yesterday and had urgency but no pain, continued a little today but tapered off. I’m fine now only lingering subtle stomach pangs. Has anyone felt this? Not sure if it’s a true flare since it’s lessened and its triggered by hormones.

still waiting for the appointment to be made for my skyrizi the hospital that covers me will have to reach out in the meantime I’m on budesonside and it’s working well but I noticed that my body no matter what doesnt like to keep on any weight. I had left over weight from pregnancy and even when I flared at 9 weeks pp I did everything to keep on the weight, food kept going right through me and the constant reflux and nausea wasn’t a big deal because I was desperate to keep the weight. Now I have sludge in my gallbladder which puts me in a catch 22, I’m stable enough to eat almost everything but if I eat too much fat I get mild aches but if I eat plain I’m discomfort free but lose DOUBLE the weight. basically I’m constantly consuming high carb protein foods and still loosing weight. I even worked with a dietitian and calculated all my meals…Has anyone who got on a biologic and doesn’t have their gallbladder have been able to gain or maintain a healthy weight? I know my days with my little friend are numbered but my surgeon didn’t want to go any fi since my gallbladder is still functioning normally. I just hate being so skinny I’ve been that way for almost my entire life. Having people point out how tiny you are or if you’re sick isn’t pleasant And wanting clothes to fit better feeling more energetic would be nice for a change!

i’ve been budesonide 9MG for almost 5 weeks now I’m in the process of getting my first treatment, but my insurance was really weird because they only accepted one dose out of the three to be administered at the facility where my G.I. wanted me to go, but it turns out that my insurance won’t cover the rest so I had to fight my way to see where they would be able to covered. I am not having very many symptoms at all and I was wondering, what should I expect with those who are on Skyrizzi successfully?

im on week 2 of budesonide it’s working but the only odd side effect is sweet pee smell, im not at all diabetic…nor am I having any typical diabetic symptoms. Has anyones urine change while on this steroid?

currently on budesonide, my insurance rejected Velsipity and my drs were v frustrated and rig so! so now were hoping skyrizzi will be accepted. This would be my first medication ever after having issues for many years undiagnosed. Anyways inbetween that time and now I used to respond well with all probiotics from Align and other non mainstream ones. until my recent flare up which was pretty harsh. I tried probiotics a couple months ago while on mesalamine and it made me bleed and have pains. Researched visobiome seemed promising only took 1/2 teaspoon into my food then in the middle of the night I had flare up pain and all day, I had a GI appointment and even told my Dr who is amazing btw! and said it’s probably because I’m too inflamed. I forgot to tell her I don’t have any adverse reactions when I eat fermented foods like yogurt. I ate yogurt last night and no pain today! Do you UCers get similar symptoms from probiotics during a flare up? Were you able to reintroduce them when in remission?