I use stool softeners (generic) and/or miralax. Even my GI recommends miralax...
Very happily in a 5 year remission (so far) on entyvio. Infusions are easy — only 30 minutes every 8 weeks and absolutely no side effects. I recall being in symptomatic remission by month 4 but with...
Seems like I recall some older posts here about it. You might do a search...
Lol! Agree with garyi!...
Fingers crossed the flare is mild and quickly resolved it’s good your doc is being proactive! Knock it back before it gets worse! Let us know what his advice is...
Lol!!!...
This forum was the light in a dark forest for me when I became ill. All I got from my dr at first was “take mesalamine, eat what you want, you’ll be fine .“ when it became clear that wasn’t going to...
Entyvio infusions are quick — a 30 minute drip. Usually another 20-30 minutes to check in and get set up. I take my phone and tablet - either play games or read. My guilty pleasure is Starbucks so I...
I was in complete symptomatic remission by around month 4. But a colonoscopy around that time still showed some microscopic inflammation and disease. The next colonoscopy (not sure how much longer...
I agree with the others. I think a new dr will probably want to do a scope. Plus I’m not sure insurance will “believe” him on the needed med increase without one Personally I do not trust insurance...
I’m glad you’re doing better!!! As far as benzodiazepine and addiction— yes they are addicting but I feel that as long as you are aware of that AND afraid of it , it most likely won’t happen. I have...
I have a friend who got covid. She is on methotrexate for arthritis. Her covid symptoms were fairly mild (she is vaxxed and boosted) enough that she thought it was allergies at first. She got...
Have you tried suppositories instead? I remember trying to use a fleet enema (not mesalamine) for a sigmoidoscopy when I was flaring and it made me scream in pain. Mesalamine Suppositories are coated...
Personally I would stay where you’re at now. You won’t achieve “normal” or remission on prednisone. Not when your disease is prednisone dependent anyway. Some people can achieve remission on...
I take probiotics but switch brands a lot. I usually take one with the most strains I can find....
I put this in my smoothies when I was ill. I recently rediscovered it the other day and have been using it again. I’ve been putting it in my coffee or hot tea. Takes a lot of stirring to get it to...
Turning point for me and my anxiety was getting meds. I couldn’t analyze or power through those attacks no matter how much I tried. My mind was fixated on those worry thought and I couldn’t get them...
Just my 2 cents — I’ve been in this type of situation before where the dr/prescriber telling me one thing and insurance telling me completely different. I always suspected it was insurance making it...
There are! I think I deleted mine tho so can’t remember their names. One was a poop diary only. It’s called stool log. It was pretty rudimentary but my GI at the time asked me to use it. The other...
I do. Less in less out! Plus I also have diverticulitis attacks and that’s the first thing they do is put you on a liquid diet, the thought being that no food passing through will give it a better...
NCOT — My mother passed from dementia and it truly was the toughest 4 years of my life. I think we were lucky that her journey with it was not even longer but hers progressed very quickly and the...
I was just wondering this morning how you were doing TA! Congratulations!!! So excited for you! So is your entyvio self injected? How often? Are you managing that ok? I ask because I’ve heard this...
I have been using suprep which is 2 bottles — I the night before the second the day of. It’s cherry flavored and doesn’t seem as harsh to my colon as the gallon prep. My husband just scheduled his...
Keith— I’m curious why your dr said they’re not recommending evushield? I have a friend who is vaxxed and one booster who caught covid. Fairly mild symptoms. Got paxlovid and her symptoms disappeared...
Clo—maybe your mouser will put that old rooster in his place! Hopefully not the other way around!...
I developed late-onset UC — well after menopause so sorry but can’t answer to that. But I do know from this forum over the years that others have reported pregnancy seems to have an effect on their...
Clo — remind me what your tshirts say! I believe there are lots of imprint stores — both local and online. It might be pricey to only order 2-3 at a time but worth it! I’ve become complacent —...
The thing about prednisone to remember is that it is not a cure but is to be used only as a rescue med. it’s very detrimental to your body to be on it long term and can lead to osteoporosis and other...
I second Serenity’s post on all points!!! 😀...
Entyvio is the least of the immunosuppressants so I don’t think you have any worries there. However, surgery takes a lot out of you physically so I don’t think I’d have a surgery until I was soundly...
Is Bactrim a sulfite drug? I only took it once and had a reaction of hives so have never taken it again....
I can relate to this! After two years of heavy stress from my mothers dementia decline and then a 3 week intense stress as she passed, I went to get back on with my life and decided to go to a Piyo...
No I haven’t (as far as I know entyvio doesn’t yet have a bio similar) but just wanted to chime in my frustration that insurance companies think they have the right to go against doctor opinions and...
Wishing you the very best! Loved the FU to cancer cells! What a great and fitting name!...
Thanks for posting your progress! Really helpful for all of us to hear about a medication that’s so new....
Clo—you have been on my mind the last few days, wondering how you were doing, so thanks for the update! So sorry you are in pain. I’m sure you’re sick and tired of all the juggling of drs! I’m glad...
Thanks for the updates! And good luck to you! May the good poops continue!...
Ditto on adding rectals....
Btw…. If the emgality causes constipation, this is my methodology: Metamucil nightly. For the week or so after the injection, use stool softeners and miralax as needed. I’ve been on Aimovig about 3...
Yayyyyyy!!!!!...
If you don’t have poopourri spray, buy some! It keeps the smell down which is something I always worried about as I found it embarrassing. Other than that, don’t eat that day....
I always have blood in my urine and the drs don’t seem worried about it. Trace amounts of blood are considered acceptable apparently. I’m starting to worry about it tho because I feel it’s coming...
I’ve been wondering how you were doing! That’s a great sign that you were able wean off prednisone! It is too early for you to be in remission on entyvio yet but I really think you’re headed there....
Will be thinking of you! So sorry to hear of another bump in the road for you! Hang in there and keep us updated!...
I am doing a dance here in celebration of your antibodies! Glad the daily infusion is finally fighting that nasty bacteria (or sounds like it is since you felt better afterwards!). Hope it kicks that...
Damn!!! Please let us know how it goes....
When I was hospitalized they put me in a semi-ICU because my heart rate hadn’t been below 100 for several days by then. Sucky feeling! Probably was all the inflammation plus all my enzymes and blood...
Clo.. I can’t remember if you’ve tried other biologics? Just wondering if the switch to stelara (for instance) would help if it is the remicade causing the utis. Keith is on it for his pouchitis,...
That’s great news to hear! So glad the infusions are working for you. And bravo for the nurse. She sounds like a jewel....
After I was on entyvio about 4-5 months I was in symptomatic remission but a colonoscopy showed microscopic inflammation still. Had another scope about 6 -9 months after that and finally showed...