Hi, I've had UC for about 10 years. I've always been a huge gym goer. I feel 10 times better when exercising regularly. At the same time I have often wondered the same thing as you regarding...
Hi Faithmac, Like CCinPA, I've been tinkering with the remicade dose for about a year now. There's definitely been improvement since first starting, but its a really slow progression. I feel like I...
I'm still trying to get in remission on the higher dose of remicade, and I've been using the steroid enema's for quite a while. No issues for me.....
Hi! Often the starting dose is not enough for people to maintain remission. Ask your Doc to get your trough levels checked (and crp/calprotectin) before your next infusion, and try and get the dose...
Thanks for the encouragement and responses. I value all of your opinions and experiences… I’ll keep you posted!...
What's up guys? Some of you know my situation, but here's a recap: Diagnosed 10 years ago with UC. Started out with the mesalamines and over a short time failed all of them. Moved to the 6mp's and...
Hey David, I've had severe UC for quite a while, and what your describing is a fairly normal occurrence for me. I don't think they are blood clots, rather blood/mucous mixed with stool.. Definitely...
Thanks for the input poopydoop!...
poopydoop-I don't want to make things worse than they already are. I kinda feel like I'm teetering. Right now I have about 5 bm's a day with some urgency and bleeding. Not perfect, but its been much...
Hey Guys, Quick update: On remicade every 4 weeks at 5mg/kg, 150mg of Imuran, and using the hydrocort enemas nightly too, along with 7.5 of prednisone. Failed all mesalamines, 6mp, humira, simponi,...
CCinPA - It makes sense that we have to be direct. Its funny because I'm a very assertive person but they don't like it when you steer the ship, so to speak.. limey - I've heard that from a lot of...
CCinPa - I'm starting to wonder if my Doc is not fighting hard enough for me. Like maybe she's resigned to the fact that she thinks I should just get the surgery, therefore throwing in the towel....
Thanks Straydog. I actually picked a plan with BCBS anticipating getting surgery possibly this year. Out of pocket max is low. I think its just BCBS. My plan is super expensive I went ahead and...
Keith-I already met with one of the surgeons and I feel confident with him as my surgeon, but I want to hear from this other well renown doc from The Cleveland Clinic too.. My doc appealed once...
So frustrated... just got word back that my insurance (blue cross/blue shield) company denied xeljanz right now. I believe they said I have to try Stelara first... what is the point of having a...
Thank you both... I am definitely leaning in the direction of trying the meds first......
Hi Guys, I posed a similar question a while back, but I'm searching again for peace of mind before heading into surgery or not. I'm currently on remicade every 4 weeks(5mg per kilogram), imuran 150mg...
I know you think the konsyl is helping but I would try not taking for a few days and see if anything changes. I recently quit taking a fiber supplement that I swore was working, and my bowel...
Keith - Is this different than the monoclonal antibody treatment??...
I agree Keith, I'm just ready to be done with this stupid disease! Hopefully something works in the meantime while waiting for surgery. Thanks everyone!...
Thanks guys. Seems like pretty much everyone doesn't regret the decision to get surgery, when at the point when nothing else is working. If the zeposia or xeljanz work while waiting to meet with...
Ks1905 thanks for the response. I see you still take stelara?? Is this for the pouchitis or do you have chrons?...
Hello, So I met with my GI specialist yesterday and it looks like surgery is going to be the way to go. I've been through all the mesalamines early on, (diagnosed 10 years ago) and failed cimzia,...
It’s weird reading this post. This was originally written 7 years ago, and reading what I wrote then, is surreal. Well here I am 7 years later and still having a hard time with this stupid disease....
I use Beach Body’s Vegan protein powder. I can’t tolerate Whey at all....
Hambo - Yes, iron is another huge deal in the way I feel. I can't take any oral iron supplements. They destroy me :) Infusions are the way to go, if they are available to you....
I saw an initial response to remi but now after I get my infusion, I don't really notice any difference. Hopefully going to 10mg per kilogram will help. It definitely can't hurt to have another set...
Hambo88 - Yes, now my testosterone levels are good now. I take cypionate 200mg a week, split in two injections a week. I'd say it helps more with my energy levels, and overall mood. At first I get a...
Hey Van, I can totally relate to the seemingly impossible task of completely getting off prednisone and feeling like crap because of it. One thing that has been a game changer for me is hormone...
CCinPA- The rather concerning detail is that yes, I had my levels checked and I’m in “therapeutic range”. I had an initial response but this has been my track record. No antibodies but the medicine...
Thanks CC. I had some initial signs of improvement but then nothing. I’ve failed humira, entyvio, and simponi. Getting tired.. Haven’t tried xeljans or stelara yet, but considering surgery. Been 10...
Hi, I'm currently taking 40mg of pred right now, along with steroid enemas at night before bed. (Currently trying to get in remission on remicade. Dosing 5mg per kilogram every 4 weeks. Not working...
Everyone is so different when it comes to diet. I've had food and allergy test and they all came back that I have no allergic or sensitivity to food. But I know things that bother me in a flare. I...
This is a difficult one for me! During this last flare, I stopped working out and I felt absolutely terrible. (6 months) The prednisone killed my body. I'm not talking about just appearance, which is...
I agree with VanJordan. The only thing cannabis did for me was make me uncomfortably high, it didn't help with any IBD symptoms. I tried all different strains and concentrations....
I always lay still for at least 30 minutes in order for the medicine to travel as far up my colon as possible and then absorb....
Thank you for your input! Much appreciated... When I went to the doctor today, he basically said the same thing as you guys. "Its encouraging that I'm showing improvement, and it may take some time...
Hello my people... I've been battling a nasty six month flare. I've failed 3 biologics but just started remicade about 6 weeks ago. I was able to ween completely off prednisone (which is a miracle)...
I totally feel for you! This is my biggest nightmare when taking prednisone. Like you, my mental health starts to become an issue and I get to the point where I'm about to lose my mind. Unfortunately...
Yes, the sensitivity did eventually wear off, but I feel like it normally takes a couple months once I'm completely off prednisone....
Hi. Every time I ween off Prednisone, I get severe sensitivity with my teeth....
I will definitely keep you posted. I know the study I read about was in Germany and Syria with 92 Men over a 7 year period. I believe all saw a significant improvement over the 7 year trial. Also...
Hello, Sooo, Ive been doing everything possible to address this current flare I've been in for 6+ months. One suggestion I had was to get my hormone levels checked... I went and got blood work done...
I use a plant based protein. Shakeology.. its vegan made with pea protein. (They have a whey protein too.) I add a little cooked oatmeal with peanut butter and banana and its pretty good. I'm sure...
I'm definitely leaning towards trying remicade first. In the meantime, I'm waiting until I have 1 more infusion of Entyvio, just to make sure. Thanks for the input!...
LOL.. It seems to be helping me.. It's funny because yesterday I talked to my Doctor and mentioned the Metamucil, and he was like "NOOOOO", "The fiber is going to make things worse". I explained how...
I actually just got the regular psyllium husk metamucil capsules. Going to switch to this. I'm going to start out with 1 capsule 3 times a day. I will keep you guys posted! I appreciate all the input....
I appreciate your input! I had more formed bm’s today. I was definitely a little more bloated and gassy, but it was a welcome sight to have a little more consistency, and moved along a little easier....
Awesome, thanks! I took 3 last night, and today I started with 2 with both breakfast and lunch.. maybe I should scale back to 1 per meal. I appreciate the feedback!...
Okay awesome! I have the Metamucil gummies.. Do you notice that it helps things?...