When I was first ill and in a severe flare and trying to get diagnosed, I was having issues that kept interfering with diagnosis — one time I felt so weak and “off” I went to the ER and my blood...
I agree with poopyd! Isn’t there anecdotal stories that if you develop antibodies to humira then you might also to remicade/inflectra (or vice versa) because they’re somewhat related medications? Or...
Re: probiotics. I don’t really notice a difference when taking them so I suspect it’s a gradual thing. My thinking is they don’t hurt, so throw as many different strains as possible in there. I take...
I have diverticulosis which sometimes leads to diverticulitis and there is a risk of perforation during a scope with that. So maybe your colo-rectal surgeon, being not as familiar with UC, was...
I believe it can happen. They had a term for it that I can’t remember now. Forgot to mention that I also went to ER one day right before the hospitalization because I felt really weird and weak and...
I don’t know about stelara, but many of the drug companies have a “no-pay plan”. I get my Aimovig (migraine medication) epi-pens for free. I used to get my Apriso for free when I was taking it. I’m...
I was hospitalized when first diagnosed. Mainly because it was going to take weeks to months to get a GI appt for my bloody diarrhea! Welcome to US specialty healthcare! Treated for pancreatitis for...
Just wanted to add — I’m on entyvio and a 5 year remission. I still get blips where things are not bad but not normal. It never hurts to add in some rectals (if you haven’t already) as those are...
FYI — also on entyvio for 5 years now! Glad it’s given you relief and hope it’s long-lived as mine! 😀 I’ve had both vaccines (moderna) a 3rd full dose booster , and a 4th “regular” booster (which...
So sorry. I can imagine the confusion and fear you’re experiencing! I had a scare many years ago. Had a weird growth on my cheek. Dermatologist removed it then the biopsy came back positive for some...
Did you just start the vsl or is this something youve taken for awhile? If it’s new you might try stopping it to see if it helps....
FYI — this is an old wives tale so don’t know if it actually works but what the heck it can’t hurt — they say rodents don’t like the odor of Irish spring soap. So you can cut the bars in half or...
I think you said you’re on pain pills? Just wanted to add they give me horrible constipation. Which could be why your bowels aren’t moving. I had bad lower back pain when I was at my sickest but it...
Was there any sun at all when you went out at night? Some medications will give you an allergic reaction to sunlight. Had it once and it was horrible. Do they hives go away when you’re back inside?...
I don’t know which drug you’re talking about but you can check to see if they carry it here: https://costplusdrugs.com/medications/categories/gastrointestinal/ I think so far they’re only carrying...
Good thinking on going to ER. Unfortunately this disease can be so severe but getting a GI specialist can be a long process as there are too few of them and too much disease out there. Let us know...
Just be aware it takes a long time for colon inflammation to heal. You’ve only had 2 doses so far so are probably too early to see remission. Count your progress in weekly steps. You should see...
I remember (thankfully only vaguely now — knocking on wood!) that feeling of wanting so badly to be better and to have my life back. Patience is hard!!!...
I know nothing about the pens either. But I do know that entyvio dosage is 300 mg every 8 weeks. So if you’re only getting 108 mg every 8 weeks then you are definitely undertreated. Contact your dr...
I’ve always had constipation my whole life. Prunes have never worked for me which is a shame because I do love them. Apple juice or an apple works sometimes. The best thing for me is daily Metamucil....
OMG! You should have been a comedy writer clo! I hate spiders too and tarantulas give me the physical willies so I can only sympathize and know I would have done the same, imagining them crawling up...
I sympathize about UTIs — I know them and the pain too well. I go from zero to peeing blood in about 2 hrs. Crazy pain! So sorry. Mine were occurring about every 9 months. I started taking the cream...
Could possibly just your body reacting to no prednisone and things will even out after your infusion. Fingers crossed!...
Great news Rusty! Keep us updated how you do on increased dose. Don’t worry about the budenoside until you see improvements/feel stable. Getting off the prednisone is the most important thing....
CBT is helpful for anxiety if you don’t want to try the med route. Basically you learn to “hear” and combat the negative voices in your head. There are books and maybe websites or apps. What I recall...
Thanks for the update! Hang in there! Keeping you in my thoughts and prayers!...
Late to the party but congrats on 1 year remission Sara! So happy that after all your struggles you found a med that works for you!...
Fingers crossed! So glad you are feeling so much better! But not so sure about dropping the budenoside while tapering off prednisone. Watch that closely....
Maybe MAB is monoclonal antibodies? I know of someone who got those several months ago and also dramatically improved their covid symptoms but don’t know if they have any form of IBD though. I know...
After I was in symptomatic remission, a colonoscopy showed microscopic inflammation. I think that was about 6-8 months after I began entyvio infusions. The next scope (another 6-10 months later?)...
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...