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...
Oh guys. Still here and not doing well. Had a good cry at 5 am today. Will be calling my doctor to set up something this week. This diarrhea and tiny poops and constant butt puckering aren't letting...
So happy for you that it is working and your new GI is smart enough not to change it. I didn’t realize we started around the same time. I am at 11 months now but not sure if I am going to stay on it....
Sorry this happened to you! Even pooping 30x a day on Rinvoq, I didnt see the pills in the toilet. I doubt I absorbed them well but not sure where they release in the digestive tract. My GI said they...
Randy, I am glad you found a partner accepting of you, too. Mine is awesome and he experienced our first flare together (well my flare). I didn’t know how he would handle it but he did everything I...
Thanks mom! I cannot remember all the scientific names versus brand names. I also got bloodwork on imuran and 6mp pretty regularly. I had to stop imuran in 2020 because I got MRSA and could not kick...
Is aza the same as imuran? I took imuran for 8 years but 6mp for maybe 2 years. 6mp caused liver issues but imuran never gave me any side effects at all....
I have UC but this is definitely something that makes me sad all the time. I think I would have been a good mom but after 18 years with this horrific disease, I do not think I am physically or...
FG not yet. My GI wants to wait on that. He doesn’t seem like he is leaning that way. That’s why I was on here. I don’t think I have seen anyone on Zeposia. SG thanks for looking that up! So do you...
Aww no! What a bad combo! Are you able to still take the loading dose with the flu? I haven’t gotten very sick yet on Rinvoq. I hope you feel better soon! Idk if this helps, but I started...
TB he did mention this very thing as well! I wonder though would I have to take prednisone to switch over until zeposia starts working? I forgot to see if zeposia had a loading dose phase. My main...
I love melatonin and take it often with no side effects. I think I read that it helps with free radical damage and oxidative stress and is generally protective for us to use. I have had bad gastic...
Oh guys. I need your thoughts. I saw my actual GI yesterday and he feels that I need to switch to Zeposia due to my lipid panel being so high on 15 mg of Rinvoq. He said it is supposed to normalize...
Well, it’s just not good digestive wise. I felt a lot better on Simponi. My joint pain is better on Rinvoq though. I still can’t have a varied diet and now have horrendous SIBO and food allergies we...
That number isn’t too bad honestly! I think you just need to eat more animal protein even as protein shakes if you can. I love equip beef protein powder. I remember back when I flared as a vegan, my...
Thinking about you girl and wanted to check in about the surgery consult and how you are feeling!...
Good luck TG! I have been on it since April 3. Took a few months to notice anything but am in remission. Its not the same remission as a TNF inhibitor unfortunately but at least I am not in the...
That is so awesome! You must be thrilled. Scopes in remission do not bother me as much as a flare scope does. I usually feel back to normal within a week. A bit longer if biopsies were taken since...
Hey minnie. I have had right side pain for a long time in remission and in flares. Rinvoq has not relieved it at all and I started it in April. Mine is from not having an IC valve anymore and having...
Are there any meds available there before you decide on surgery that you haven’t used yet? Having a surgery consult can give you more information at least but I definitely would exhaust all your...
Old Mike yes we are lifers here but I dont mind! It is nice having lifelong friends with UC to discuss what works and what doesn’t. I dont think anyone in my daily life is interested in my deep...
Conquer I am not sure what GI mapping is. My GI runs the typical tests like all the bacteria and viruses and fecal calprotectin. Is this in addition to the regular testing? I am at a normal...
I hope skyrizi helps you! My doctor’s office has good success with it. It was one of my options after simponi stopped working. Let us now how you feel after the first dose!...
I hope you get enrolled and can find some relief, Linda! UC is such a thief of joy and I know you have struggled for a long time, too. Do you know if everyone gets the drug or do some get placebo?...
I definitely needed the full loading dose of 45 mg to notice anything. I wasn't a quick responder whatsoever. It was a slow working drug for me compared to Remicade and Simponi (those worked...