Have you had a colonoscopy recently? You are definitely flaring and need something stronger. I really tried to do the tier 1 medicines but they never really helped me. I think you should be open to...
I had my first infusion yesterday of tremfya and I survived. My doctor made me take premeds to avoid a reaction. The nurse was at my home for maybe 2-2.5 hours. The only thing we noticed was my BP...
I hope all your biopsies are clear! That is what made me have to change meds even though I felt okay. Fodmaps are 100% a problem for me but I notice fiber in general can be hard. I do okay with very...
I am so sorry you are struggling right now. I have also dealt with restriction and binge eating. The only way out for me was to relinquish any rules I had about what was healthy and just eat whatever...
So sorry this was confirmed, Natty! I remember you wrote it on my post and I suspected this would be the outcome. At least she has you and hopefully an understanding doctor! My UC has always affected...
Upmc approved Tremfya for me so I will be starting as soon as we can figure out the infusion situation. Will let you guys know the day and update you. Optioncare (tremfya infusion company) who is...
Thanks Sassy! Keep me updated on rinvoq. I assume you will to do some bloodwork on it as well. I had strict orders every 3 months but had to do one month after I started it, too. I have always had...
Good luck with entyvio! I think ANY active inflammation makes me tired even if it is small. The body does not like to be inflamed and that may be affecting your energy levels. I also get a lot of...
Hey Sassy! We are all in this together. I am so sorry you are flaring but hope rinvoq can knock that out for you. It took about 12 weeks for it to work but it was good for my symptoms for a year and...
Natty, I will have to see research a NaPro doctor for endo. I am not familiar with that. I just saw the obgyn at my sister’s office (she worked at an obgyn for many years). I have been scheduled for...
Natty, it looks like you were about my age when you were diagnosed. When did you start having children? I have known only one other person (from high school) who was diagnosed with UC after...
Natty, I am all about being on as few drugs as possible so I understand. It’s a very personal decision. It sucks that all the heavy hitter drugs suppress the immune system but that has been the only...
Natt, what scares you about aza? I will be honest that I was on aza from 2012-2020 and it worked well with my biologic. I had no side effects at all (besides general immune suppression). We stopped...
Natt, definitely let me know how your scope looks next month. I am sorry your mom is also sick though. That is really hard. My dad also has UC so I know where I got it from. His was always mild...
Are you having any lower GI symptoms or are the main ones bloating and nausea? Typically a flare has some bleeding, urge to poop or diarrhea. I wouldn’t immediately think “UC flare” if those were my...
Quincy, thank you! I just hope it stays that way with symptoms. It’s terrible to not be able to leave my house with a diaper in the bad times. I messaged today asking if they would let me remain in...
Geezer, I am glad you are doing okay despite the other health problems. Long haul covid is so hard. I had it for 9 months and ended up quitting my job at the time because the migraines were so...
Old Hat, I still stop by from time to time but was doing okay and even went out of town several times this year. This was a surprise honestly since my symptoms always correspond with inflammation. I...
I am in a similar boat but not having symptoms. Will start either skyrizi or tremfya soon. I am also considering pregnancy in 3-5 years and the doctor said these are the safest options for me to be...
Hey guys. Hope you are all hanging in and surviving the holiday season. I just had my colonoscopy a week ago due to some high fecal cal. levels in October. The doctor said the scope looked good and...
I hope the doctor gets back to you! Flares are so time sensitive! Pain is typically my number one symptom that brings me to the ER but last year, it was the diarrhea. I had been going about 30 plus...
Wednesday, what did you end up taking? I am most likely starting Skyrizi this month since Rinvoq isn’t controlling my inflammation levels anymore. Only got a year of remission on it which sucks in my...
CC, that is what I told my nurse! I said I need to milk Rinvoq for everything I can since we don’t have many medications that work. I don’t wanna waste it while I am okay. It feels so rushed. I know...
CC, I am in the same situation. I get FC tested every 3 months on Rinvoq. My June 24 test was a 6 and my Sept 30 test was 275. He is already sending me labs to start Skyrizi and I don’t have any...
JML I will chime in and say a center that treats IBD is of the utmost importance so if you have to travel or even do a long distance virtual appt, it is so worth it. I am at a university hospital...
If I was getting multiple AK’s, I would be concerned. Can you get a resurfacing laser to help get rid of most of those? That is supposed to help reverse the damaged skin. I would ask your derm if he...
CcinPa, I thought the same thing when I read this. They are right in the middle of the normal range. I thought maybe it was a typo and she meant 10 and not .10...
Sukay, laying on my side triggers bowel movements when I am having diarrhea. Luckily, my diarrhea has been gone complete since I started a new supplement called black seed oil. It worked overnight...
OH, you said that very well. It is hard EVERYWHERE to find a GI who really knows IBD and wait times everywhere have worsened. I almost died from incompetent care so many times so thinking of changing...
You can’t post images on here but if you just type out the written portion of the scope, that will help. Typically it is in the “findings” section or “notes” section on the paper. It will say what...
Good luck Michele! I hope it is an easy recovery for you and the pain is gone! I always feel like any added issues on top of UC just sucks. Like give me a break. One bad disease is enough for me...
Oh Linda. That is the sucky part of trials. Not knowing what you are getting must be really hard. I hope the increased dose helps you out. You are always in my prayers....
MB, I do not think Rinvoq can be combined with Humira. I think my GI said they prefer it to be the only immune suppressor in the system. I know it can’t be used with 6 mp or imuran. Would you be okay...
Can you post what the scope results were? Those are usually the most clear, especially if biopsies were done. You would be surprised just how many GI doctors know very little about UC. I have seen...
JML, hopefully you will be fine on it! It is so expensive. I bought several boxes as an experiment to see if it would fix my constipation. It did fix it but just with lots of diarrhea. We actually...
I haven’t heard of that antibiotic but I do fine with them and also get terrified every time I take them! I had MRSA in 2019-2020 and had to do 5 rounds of antibiotics. My UC was totally fine. I did...
Hey Keith. Wanted to see how the first month on Rinvoq is working for you! I am always curious how others handle that med. I just saw a cardiologist who isn’t okay with how much it has raised my...
My mom was on Ozempic most of last year. The diarrhea is no joke! Same with the nausea and headaches. She barely left the house when she was on it but she did lose weight. It really dampens your...
Lanah, that is really unfortunate about the cost. I was never on Imuran alone. It was always with a TNF inhibitor. It was never strong enough to use by itself for my disease in the breaks I had from...
Can your doctor’s staff fight with your insurance to cover Lialda if it worked so well? Do you know the cost without insurance but using a goodrx card or website savings card? Just throwing out...
Sorry you are here!! How bad are your symptoms right now? Like pooping more than 10x a day? Lots of blood? Pain? If they are worsening quickly, I wouldn’t fear starting a heavy duty drug. I think...
I had pretty severe joint pain on humira. More like frozen joints where I couldn’t use my shoulder or elbow or hand. Scary for sure. They just wouldn’t bend. I had joint issues on all the TNFs....
I like doing qigong in the yard. I started a few years ago as a way to help cope with life. I can’t do it successfully during flares though. I tried last spring during my flare but the yard is too...
Hey Keith. My GI has never mentioned testing and I have had it since 2011 or around that time. He said there is no need to test if he knows the diagnosis through a colonoscopy. How are you? I just...
Mom2, I am only switching if the heart doctor thinks I should. I see him April 15. If it is working well for my UC inflammation, I will stay on it since low inflammation is always my UC goal. My...
Hey guys. Hope everyone had a good Easter! Belly is still not great but not horrible either. I’ve had worse. The 30 mg increase made no difference after several weeks so I am back on the 15 mg since...
Remicade was okay while I was on it but I had to take it with 6mp or imuran. I couldn’t take it alone. The infusions were long but not horrible. My nurse was nice. Never tried Entyvio but my GI isn’t...
So sorry you have struggled for so long! This disease totally sucks the life out of you. I was in a flare from 2010-2014 so I understand the pain and constant hospitalizations. It is hard to keep...
Thank you all for your kind words. It has been a hard week with Sean. He has been in a lot of pain so I have been helping him as much as I can. We weren’t anticipating such a painful recovery but he...
Thanks Serenity! I teared up reading that. I just hate feeling so useless. I keep trying to think what changed. My two pets passed away last month and my mom got a scary ultrasound finding- 6 cm mass...