"reasonably good remission" is a bit of an oxymoron, no? There are different definitions of remission but endoscopic remission means no visible inflammation...if it were me I would want to up...
I am still on mesavant 5 years after I was told I can stop it.... because the last time a doctor told me i could stop it "because it wasn't doing anything" and i listened to them, I had a massive...
Hi JML to answer your question, entyvio doesn't work for everyone.. it's also very expensive.... that's why. Remember also stories and reviews on the internet will be biased by the worst cases...most...
Antibiotics story here. When my sister with crohns was living in Austria and she had a flare up, the hospital gave her a course of antibiotics and it fixed her 🤷🏾♀️ Btw entyvio is probably the...
In parts of Asia they still use squat toilets (have come across them in Japan and Taiwan), as well as standard western toilets. These are Very advanced nations (in some ways more advanced than the US...
I can understand wanting to stay on entyvio, just wanted to say I was diagnosed with pancolitis and xeljanz is the only drug that put me in a full remission. It's actually known for particularly...
I've been on low dose prozac a few months, which we started to try to help my fatigue issues. It hasn't had any effect on my fatigue or energy levels (probably because i don't sleep enough) but it...
I don't think it helps inflammation per se, but it's good for IBS symptoms. I have a lot less abdominal pain since I started it (I am in remission endoscopically and was still getting pain without...
Thinking of you 🤗🙏 Hope all goes smoothly...
Half joking here.. but if you want to lose your appetite I can recommend prozac.... ye gods the nausea 😵 It was terrible for the first 3 months, now it's tolerable, but I refuse to take anything...
I agree, get a doctor who is informed about UC, and probably you need a new colonoscopy as things might have changed since your last one two years ago. I am not sure a CT scan is diagnostic for UC...
I think I've been on that one when I was triple immunocompromised (prednisone + infliximab + imuran) as a preventative measure against respiratory infections (at least it was trimethoprim combined...
Hi All thanks for the advice. Wish it was a vacation but I'm here for work, however it has been a fun trip. I have not located a Walmart or Costco sadly....now I'm curious. Old hat, yes it was KLM...
Thank you both! It is beautiful here and the weather has been much better than back home. Indeed I saw florastor was recommended when using antibiotics. It also mentioned on the package that it...
Thanks! I'm in Princeton. I picked up some florastor from the local cvs, maybe I'll just try that while I'm here as it's only a short visit....
Hi All I am currently visiting the US from Europe and realised I've forgotten to bring my vivomixx with me (equivalent to visbiome/vsl#3). Can i purchase visbiome or vsl#3 from a regular pharmacy or...
I had low vitamin D the year before I was diagnosed, I wish i had known the significance of this at the time...
I've been on birth control for years, doing 3 weeks on and 1 week off. However in the last few years I was getting terrible headaches during the 7 day day break and when i casually mentioned this to...
Yep I've never had an accident from the prep. It feels more like when you need to pee, so it's uncomfortable but you can at least hold it until you get to the bathroom. Scary to think that this can...
Awesome news 👏...
My arthritic dog is on type II collagen. Do you find it makes a big difference?...
There have been shortages of methotrexate recently, for that reason I would personally avoid it (I just had to go through the stress of one of my medications - luckily not related to UC - going out...
If I understand correctly, the OP was offered a choice of infusions or pills and they opted for pills, hence the decision to try rinvoq. OP personally I applaud your team for not wanting to use...
How high is high? For example my hospital doesn't start to worry until it goes above ~200. When flaring I had values in the thousands....
Do calprotectin measurements work for you? They aren't helpful for everyone but for me they are really sensitive to rectal inflammation and whenever I'm in doubt about my symptoms I send off a fecal...
Hi I'm from the UK but not currently living there, yes we have incontinence pads, they should be in any drug store. Most railway stations and airports will have a Boots store where you can buy these...
Thank you so much for the update and great to hear you are improving. I hope the improvements will continue in the coming months! Did your doc also see an improvement in the severity of the remaining...
Prepping may also affect the absorption of antibiotics?...
It seems to be because the disease is different in different people. Research is being done to predict what drugs will work for someone on the basis of analysing a biopsy....
You should/could check if you have developed antibodies to humira which is a blood test. Depending on the outcome of that, it may be an option to double the frequency of the injections (i.e. weekly...
Just get it checked... and please let us know.... if it is infected you don't want to wait...
You might have cellulitis in which case you will need antibiotics. Do not mess with cellulitis as it can escalate to intravenous antibiotics and sepsis if left untreated. My mum had this last year...
PS Serenity - because I have relocated many times (internationally) I needed to dig up my childhood vaccine record, so I contacted my childhood GP and they had all my vaccines from birth on record...
I had my titres checked a couple of years ago. They were good. I think I had at least three vaccines though because MMR was new when I was a teenager so I had one then, but I definitely also had my...
Lol...
Here you go. Feel free to critique... https://www.sciencedirect.com/science/article/abs/pii/S0016508518346857 ...
Yes I do. Will have to dig it up...("I went to an IBD lecture from my gastroenterologist 2 weeks ago and he showed the stats" is not going to cut it) I am talking only about UC here, and not crohns...
Yet, UC is actually more common in men than women...
Iron pills can make a flare worse, I agree with the above that an iron infusion might be both more effective and better for your bowel....
Hi sorry to hear about your continuing problems. I had the same question as above. Are you at a "good" hospital? My sister in the UK found she got vastly superior treatment for her autoimmune...
It's not that new.... it was approved for RA in 2019, and it is related to xeljanz for which there is > 10 years of data. And the biologics are not without risks either. I'm not sure how old you are...
I am on xeljanz which is similar to rinvoq (they are both JAK-inhibitors but rinvoq is more targeted than xeljanz). Just had my 5 year anniversary, no side effects, normal cholesterol (i think it...
I agree with quincy! When I'm flaring, I know there are some foods that I can't "tolerate", meaning, they will make me feel worse (mostly those with high insoluble fibre content), and there are some...
I agree on the food prices.... but I would just eat what you like (within reason), it gets soooo tiring to monitor and analyse everything. If entyvio is going to work it will work, so try to relax...
There is not a fixed time to respond. It is common to feel better in a few days (which is not the same as remission), but some people also need a few weeks before they notice anything, and one is not...
Well, at least it sounds like you didn't get a placebo! Good luck, hope the next dose feels better......
Hmm well... I am on xeljanz now but my doctor already said he doesn't like to prescribe it for over 65s because of the risks of side effects, so even with all the new drugs there may not be an option...
What do they do in that situation if the patient is flaring and no drugs are working?...
Clo - do you take remicade with MTX? (I forget sorry) It's just if you're taking 2 immunosuppressants at the same time that will also have different risks for surgery....
I think by the time we get to our 90s, many conditions can cause bowel incontinence (including dementia), so I wouldn't necessarily let that be a deterrent for getting a j-pouch. Plus i assume...