"Weekends are quieter in the forum"

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 be my disease journey, HW was where I came for info. Especially since it was real time, real life, real people dealing with the same thing. This is where I learned about diets and food diaries and all the forms of medications and the symptoms they targeted AND how to interpret test results. This forum helped keep me sane when I was severely depressed over my disease. So thank you, one and all.

I think once we reach remission our lives get busy again now that we’re not home bound any more. Personally I’ve been in remission so long now that my memory of the bad times are faded enough that I don’t feel I can be very useful. I still check in every 2 -3 days but don’t reply that often anymore. I try to help with questions about entyvio but that’s about all I can help with.

As far as the vaccines, it was very helpful to hear how others were reacting — or not — since our immune-compromised state can be greatly affected by vaccination.

Why there aren’t more “newbies” I don’t know. I suspect other social media but also hope that it also means that all the new meds and treatment plans are keeping disease managed better and patients are finding remission easier.

iPoop said...

In my opinion COVID, vaccines, complaints about big pharma, and other such things have no place here. This is an UC forum, not for everything and anything vaguely medical related and one's fierce opinions on said OT things. Just seems like a recipe for infighting and disaster when deeply held, opposing beliefs go head-to-head. There's a number of mods who keep the peace here, best we can.

Disinformation should not be allowed on a medical/patient forum. Millions of people died from Covid and it affected everyone’s lives. Posting about HydroxyFraudaquine and eating horse paste does not belong on a chronic disease website; “we” (the medically frail) are some of the people most at risk for serious complications or worse from Covid.

If you don’t push back on this stuff then it will become more rampant on the forum.

If you’re worried about it being quieter on here and you value the site then post and answer more topics.

I don't think this is true. I suspect when patients are started on stronger meds from the get-go it's because they have a more severe case of UC. I still see the vast majority of people on this forum starting with mesalazines at diagnosis.

poopydoop said...
One gastroenterologist (not my doctor but we were talking in a social context) told me that 20 years ago it was common for UC patients to land in hospital for a week. Now that's much rarer and it's due to the introduction of biologics. In that context biologics have been amazing. It's also great that doctors are shifting away from using prednisone to control UC, again thanks to biologics and other new drugs.

When I first got sick I ended up in the hospital in 2005. My GI said that “usually” the first flare is worst because we do not have medications built up in our bodies - he was referring to immunomodulators. Remicade wasn’t available then. I ended up on cyclosporine, and I haven’t heard that used on here in 10+ years since biologicals because main stream.

Diagnosis is done by colonoscopy and that is what guides medicine decisions. We shouldn’t conflate mild, moderate, and severe UC - they are all treated differently.

Let's just add that some Ucers do use the enemas while on biologics. The first med many patients are given seems to be prednisone...probably because patients beg their docs for fast relief from the hell symptoms they are having. Enemas are a commitment and expensive. Prednisone is cheap and affordable.
A lot depends on what doctor (and his/her treatment values) we initially get.

q

I haven't been around because I'm doing well haha

I got diagnosed at 17 and I'm 37 now

I am so thankful for the long-time support here on HW. I have benefited greatly and continue to return for help, and even give a bit of advice to newly Dx UCers.

I am not on any social media sites...too old and paranoid. I have noticed a huge drop in posts here. Hopefully, HW will continue for a long time to come!