Have you discussed a temporary ostomy? So your system has time to heal?...
Not sure that I had any withdrawal either; I hated the stuff - I was miserable on it. I’d also question the fact that you could get withdrawal from it, the med takes so long to build up and then...
You might be able to find someone on j-pouch.org. Do you have pouchitis? Low absorption and low B12 could cause low energy levels....
I have a jpouch and it dramatically improved my quality of life. Most of us who have had surgery only wished that we had it sooner. It’s not perfect but I live a much better life now....
Your body will adjust, just give it sometime. Is this because you recently had surgery? I did a lot of walking after my surgeries to get my body(intestines) moving again. I somehow found myself...
I’m fine on Stelara but you can have a blood test run to see if you’ve developed antibodies to Stelara. I had a similar experience with Remicade and other ant-tnf meds, gastrointestinally I was fine...
My GI is 90 miles from me and I have to cross the Hudson River and fight NYC traffic but it’s worth it for me....
I’ve been with the same Gi for 15 years. I fired the first two that I had and then I ended up with my current GI. I follow him from IBD practice to IBD practice as he moves around. I’d get on a plane...
I think one of the places that people go for IBDs in CT is Yale. Some others from CT go to UMass and other to NYC....
I recently did this test for Stelara. I had it done a few years ago for Stelara too. My insurance covered it. When I previously did it for Remicade my insurance didn’t cover it (10+ years ago)...
I couldn’t fast until I got UC - I would get hungry easily. After not eating for months during my first flare when I got healthy I had to teach myself to eat again, I just wasn’t hungry. I have a...
I would always take two Benadryls when I got home from an infusion and sleep the night away....
When I first got sick I just didn’t eat; I had no appetite and hated eating at the time because of UC. I probably ate 4 or 5 times in the first 3 months during my first flare. I ended up dropping...
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I ended up in a similar situation with serum sickness but mine was for all the anti-tnf biologicals. I tried Remicade (first one), Humira, Simponi, and Cimzia. I had bad reactions to all of them;...
I test when I have symptoms, I never had Covid until last month…. That I know of. Back in November I got the flu or something, and it’s probably the sickest that I’ve ever been as an adult (not...
Hey Joanna, Does your GI think that discontinuing NSAIDs will reduce your flare? What IBD treatments are you going to do? There are great treatments that have been FDA approved over the past 10...
I insisted on taking Palovid and I’m glad that I did, my PCP advised against it because of the taste and that she had a 5 day rebound that was worse than her original infection. I didn’t know about...
If you are suffering from lower than normal energy after taking steroids then you might be suffering for withdrawal. Mention it to your GI and they may be able help you with your withdrawal symptoms....
I got some awful cold or flu right after thanksgiving. I was in bed for a week. I don’t usually get that sick. I had Covid at the end of January and then again last week. It wasn’t a rebound, I got...
Sara, Since these vaccines have full FDA approval (no longer under emergency status) then doctors will have the option of giving additional Covid vaccine doses to patients that they think need it....
I’ve been unmasked for 18-24 months since vaccines became much more common and I was already taking boosters. I finished my Paxlovid course yesterday and today was my first day out of quarantine. My...
I know exactly where I got it and I’m mad about it. I took my dog to the vet and one of the vet techs was coughing and not wearing a mask (I wasn’t wearing one either). I got a $950 vet bill and a...
Long term they are hoping to develop a more universal mRNA flu vaccine instead of just guessing at what strain of flu will become the dominant one or two strains of the flu. Because of the Covid...
Hey Susie, It’s been awhile. Sorry that you’re checking in with a new diagnosis. PSC is usually a very slow moving disease. My blood tests sometimes throw off some weird liver numbers and my GI has...
The next generation of vaccines might be nasal vaccines against Covid and they are expected to be more effective against infection since most infections come through nasal passages. And there will be...
Wasn’t that always the prediction? It would be a once a year vaccine just like the flu and a possible combination vaccine of both in one shot. Most of the population has some form of immunity now and...
I don’t have any great suggestions but if you find a good doctor that you like then why don’t you ask them for recommendations of other doctors in different fields. They know you and might be able to...
Can you mail them to yourself? And leave the kit onsite....
I drink a whole bottle the day before up to Midnight for a scope the next morning. I’d have no problem fasting on coffee and broth for 2-4 days prior. I’ve never done it before for a scope, maybe...
Have a SIBO test run too, it’s easy to do and it sounds like you have some of the symptoms of SIBO (Small Intestine Bacterial Overgrowth)....
It is infuriating that these drug makers can make a slight tweak to the way the biological is delivered and then they get to extend their patent protection even longer in the US. Example: Humira....
My Gi has me use M of M for my scopes, but I have a jpouch. It’s effective for me....
I think this is one of the reasons that we see less posting on this forum, biologicals are so affective at treating IBDs compared to previous medications that were available to us. Prior to...
Does your GI treat a lot of patients with j-pouches? You want a GI who is familiar with j-pouches and their complexities. What meds are you taking to treat your crohns?...
When was the last time you had your pouch scoped? I go 2-6 times a day. My GI says that I have a large pouch....
I’m sure the blood clot risk is minimal but I would seriously keep up with your Covid vaccine schedule. As an IBD patient we are already at higher risk for blood clots and Covid causes blood clots so...
I thought it was cleaning supplies and that we live in too clean of an environment so we do not have enough good bacteria in our bodies....
It has been awhile, NCOT had surgery 3 Prime Ministers ago....
Don’t believe everything that the Big Pharma lobbyist tell you, they are out to pad their wallets and corporate profits. They’d rather charge $600 or more a month for insulin and have the less...
You could always ask for their formulary list for what is covered. It would be nice if we had universal healthcare like a real developed nation....
Looks like there are couple of variants that our current treatments and previous antibodies have VERY limited effect on. The only thing that is currently effective is the new bivariant omicron...
I like fasting instead - food can sometimes be our enemy. I’ll do a 24, 48, or 72 hour fast. I can do without food for few days and it lets my GI tract relax. Honestly, I’d rather just skip a couple...
You’ve only been on Entyvio for two plus months, I wouldn’t think that it’s working at its full potential just yet. I’d give it a week or two and if things keep improving then you may want to talk to...
Was it adding Pepto that might have helped you? Sleeping through the is greatly underrated - I don’t know how went all those years waking up hourly....
Flowers, I had really bad reactions to my first 3 Covid vaccines but both my Shingrix were uneventful - go figure. I know a few people who have had Shingles and you don’t want a bad case of Shingles....
I’d get your liver tested if it is pale/putty color. Pepto Bismol will turn it black....
What do you want me to call them? Ignorant, arrogant, uninformed, dumb, selfish? Polio was irradiated for decades in western countries(miracle of modern medicine) and now because of [insert...
How they impact you? My thought is that if I get one of these illnesses/viruses than that will affect my IBD more than a reaction to a vaccine....
Polio is returning where I live. Stupid Anti-vaxxers. I wonder if immunocompromised patients will at some point need boosters for Polio and MMR....