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poopydoop

HealingWell Forum
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Member Profile
Display Name
poopydoop
Profile Created
12/16/2018 10:03 PM
Last Seen
Yesterday 3:13 PM
Total Posts
1548

Last 50 Posts

How do you confirm remission? Is it too soon to know if Inflectra has me in remission?

Calprotectin works best when you have classic UC i.e. worst inflammation in the rectum, because it breaks down as it travels through your colon so the test is less sensitive to inflammation higher...

6/28/2022 3:00 PM

Ulcerative Colitis
How do you confirm remission? Is it too soon to know if Inflectra has me in remission?

C reactive protein often not helpful but can be indicative. I've had 0.7 with severe proctitis. Calprotectin usually more useful, especially if you had a high value while flaring....

6/28/2022 12:54 AM

Ulcerative Colitis
antibiotics and uc flare

To add to my last post - I've never been able to use prednisone to get into remission. Only for symptom management while I wait for other drugs to work....

6/24/2022 6:32 PM

Ulcerative Colitis
antibiotics and uc flare

I was on prednisone for 2 years while we tried different drugs and got osteoporosis as a result. I won't take it again. Have been in remission for 3 years on xeljanz. Last time i started to flare...

6/24/2022 6:30 PM

Ulcerative Colitis
Foods while transitioning to remission

Re the "as tolerated" thing - the only way to know if i food is problematic is to try it and see if you feel worse afterwards. A food diary can be helpful (personally I could never be bothered with a...

6/24/2022 2:38 PM

Ulcerative Colitis
antibiotics and uc flare

You don't have to take prednisone if you don't want to! I refuse to take it any more (as does my sister with crohns). Hopefully you'll be fine. Probiotics during and after the antibiotics is a good...

6/24/2022 2:33 PM

Ulcerative Colitis
Interrupted Sleep

My thoughts: your doctor knows what he's doing. Budesonide is mostly absorbed locally (90%) so it doesn't come with the same risks or side effects as prednisone....

6/24/2022 11:29 AM

Ulcerative Colitis
Question about medication choices

Depends on the doctor but in my case they kept me on azathioprine on both infliximab and entyvio...with the idea to wean me off it once I'm in remission. If you're using it to prevent antibodies you...

6/23/2022 11:49 AM

Ulcerative Colitis
what kind of ingredient should we avoid in suplements?

Probably because the iron content in multivitamins is much lower than a specific iron supplement...

6/23/2022 11:36 AM

Ulcerative Colitis
Question about medication choices

You can get antibodies to entyvio but it's less common than with the tnf-inhibitors....

6/22/2022 4:42 PM

Ulcerative Colitis
what kind of ingredient should we avoid in suplements?

Iron supplementation is only necessary if you are anaemic or have low ferritin, as confirmed by blood tests. Fatigue can have lots of causes. I don't take iron tablets as they can aggravate UC but...

6/22/2022 11:43 AM

Ulcerative Colitis
"Weekends are quieter in the forum"

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...

6/21/2022 12:07 AM

Ulcerative Colitis
Question about medication choices

I also metabolize azathioprine funny. We tried a dose increase from 100 to 150mg but when my blood enzymes (6TGN and 6MMP) came back unfavourable I was switched to 50mg azathioprine plus allopurinol...

6/20/2022 11:55 PM

Ulcerative Colitis
"Weekends are quieter in the forum"

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...

6/20/2022 11:51 PM

Ulcerative Colitis
Brought my stool sample to the lab

OT - I stepped on one of my dog's poo bags this evening while out walking (because she got her head stuck on a thorny bush and was screaming blue murder so i wasn't paying attention where i was...

6/20/2022 1:09 PM

Ulcerative Colitis
Question about medication choices

I'm with keith, I also hate steroids because they gave me severe osteoporosis in my mid 30s. Have been on a couple of biologics, they were much more effective than 6mp/mesalazine type drugs and I had...

6/20/2022 11:32 AM

Ulcerative Colitis
Grape seed extract

It's always wise to check with a doctor before starting any supplements, especially when you're already taking medication. For example psyllium interacts with a bunch of medications (including...

6/19/2022 6:09 AM

Ulcerative Colitis
Brought my stool sample to the lab

Hahaha!...

6/17/2022 4:32 PM

Ulcerative Colitis
"Weekends are quieter in the forum"

Susie - yes I understand. What I was referring to was e.g. there have been posts saying the FDA is more careful than European counterparts. Or people making statements about Big Pharma and how...

6/15/2022 2:22 PM

Ulcerative Colitis
"Weekends are quieter in the forum"

People might be diagnosed when they are young, but I see very often on this forum that someone posts "I was diagnosed x years ago and mesalazine always worked until now" - in other words, the need to...

6/15/2022 3:45 AM

Ulcerative Colitis
Interrupted Sleep

I go 2-4 x a day even in remission...

6/15/2022 1:05 AM

Ulcerative Colitis
"Weekends are quieter in the forum"

Is it a young person's illness? I was diagnosed at 33 and I'm stuck with it for life (i assume...). I don't use Facebook groups because I don't want friends knowing anything about my health...

6/13/2022 5:29 PM

Ulcerative Colitis
Van Jordan

Not ALL research is privatised. Public funding is still available. Would be great to have more public funding of course but then you'd have to change the whole political system (and have more public...

6/10/2022 1:31 AM

Ulcerative Colitis
Curcumin supplement and nosebleeds?

Have not experienced it personally but turmeric is a blood thinner so it wouldn't surprise me. A quick google suggests you're not the only one who had this problem....

6/9/2022 2:47 PM

Ulcerative Colitis
CRC News

Letting patients die isn't good for business either.......

6/9/2022 2:02 PM

Ulcerative Colitis
Mirikizumab: New med sounds very promising!

That's true, but 12 weeks isn't very long either. True healing can take months. That is really the limitation of clinical trials (or one of the limitations). On xeljanz I took 16 weeks to reach...

6/8/2022 3:52 AM

Ulcerative Colitis
CRC News

Yes I read that....but it also said they are a group who do not respond to other treatment options...

6/7/2022 2:27 PM

Ulcerative Colitis
CRC News

Yes that's correct. I think it must be a bug on healingwell as I've not had this problem before...

6/7/2022 8:14 AM

Ulcerative Colitis
CRC News

I couldn't open the link but googled the drug name and found another article. Sounds really exciting!...

6/7/2022 7:44 AM

Ulcerative Colitis
Does being around people-since Covid-bother you?

My sister had the merck drug (I forget the name) - managed to get herself on a trial because she has obesity - and recovered from covid within a week, no lasting effects. But she was also vaccinated...

6/6/2022 12:23 PM

Ulcerative Colitis
Does being around people-since Covid-bother you?

I would also take it....if it was available.......

6/6/2022 12:19 PM

Ulcerative Colitis
Pfizer ulcerative colitis drug leads to remission in a third of patients -study

Actually there's been some really interesting progess in cancer research recently, especially in the field of cancer vaccines...

6/5/2022 4:30 PM

Ulcerative Colitis
Entyvio/ remission

You can use the search function to find similar posts as I'm sure this question has been asked before (I think I even asked it in 2018). There are not many entyvio users active on this forum, plus...

6/5/2022 11:31 AM

Ulcerative Colitis
Mirikizumab: New med sounds very promising!

I cited my source and as well as the type of remission and the time frame ๐Ÿ˜‡...

6/5/2022 8:57 AM

Ulcerative Colitis
Pfizer ulcerative colitis drug leads to remission in a third of patients -study

The world is bigger than the FDA, and medical research is bigger than drug companies. Plenty of research is being done by academic institutions and noone earns a "sky high" revenue there. Indeed...

6/4/2022 2:04 PM

Ulcerative Colitis
Mirikizumab: New med sounds very promising!

I think most drugs which change the immune system have some cancer risk but untreated UC has a much bigger cancer risk. Also from what I remember, the biologics (which this is) are significantly...

6/4/2022 1:43 PM

Ulcerative Colitis
Pfizer ulcerative colitis drug leads to remission in a third of patients -study

Who is "They"? Medical research takes years and years and is very expensive. A lot of research is independent of drug companies. And if they don't offer a viable alternative to medications with...

6/3/2022 12:06 PM

Ulcerative Colitis
Mirikizumab: New med sounds very promising!

It's nothing like imuran, it's a biologic, and by the looks of it the safety profile is pretty good. I take a cancer drug to treat my osteoporosis, I donโ€™t think about it much. Didnโ€™t have much...

6/3/2022 11:54 AM

Ulcerative Colitis
The weirdest results

That's funny CC,at my hospital they give me a plastic envelope and I'm allowed to send the sample in the regular mail! Which would take a few days. (Since i work down the road from the hospital i...

6/1/2022 3:57 PM

Ulcerative Colitis
Pfizer ulcerative colitis drug leads to remission in a third of patients -study

I am not sure this is correct. Many patients respond well to at least one drug. Few patients always respond well (otherwise they'd never need to try different medications). New drugs are coming out...

6/1/2022 3:50 PM

Ulcerative Colitis
Does being around people-since Covid-bother you?

Fact Check-Japan has not authorized ivermectin to treat COVID-19 or revoked a vaccine mandate. Source: https://www.reuters.com/article/factcheck-japan-ivermectinandmandate-idUSL1N2TX1GK ...

6/1/2022 3:39 PM

Ulcerative Colitis
The weirdest results

I've had very meaningful calprotectin results by always taking the sample from the first poop of the day, when it's at its highest (I'm a scientist and like to do this consistently). During my last...

6/1/2022 1:31 AM

Ulcerative Colitis
2 weeks in

If we're going to be pedantic about things.... the effectiveness of enemas depends on the type of inflammation you have and your personal tolerance for the medication. I've had flares where they help...

6/1/2022 1:26 AM

Ulcerative Colitis
Does being around people-since Covid-bother you?

He is in Texas if that makes a difference...

5/31/2022 4:56 AM

Ulcerative Colitis
Does being around people-since Covid-bother you?

Clo. I would not worry about evushield but focus your efforts on getting paxlovid in the event you test positive. My friend's husband in the US managed to get paxlovid because he is high risk and it...

5/31/2022 2:07 AM

Ulcerative Colitis
2 weeks in

We have 4g bottles in Europe :)...

5/31/2022 1:15 AM

Ulcerative Colitis
Research linking food additives to aggravating IBD

Carrageenan is banned in Europe ๐Ÿ˜...

5/31/2022 1:11 AM

Ulcerative Colitis
Mirikizumab: New med sounds very promising!

The study found that 24% of patients treated with mirikizumab were in clinical remission at 12 weeks โ€“ meaning inflammation of the colon is controlled or resolved โ€“ compared to 13% of the placebo...

5/30/2022 2:02 PM

Ulcerative Colitis
Interrupted Sleep

There are no hard and fast answers. I never aimed for normal on prednisone because in my case that would require high doses for long periods, but high enough to keep me functioning (able to work and...

5/29/2022 10:57 AM

Ulcerative Colitis
Xeljanz Stopped Workinf?

I would imagine that's the case with most UC meds. Sometimes a dose escalation works, and sometimes it doesn't....

5/28/2022 6:20 AM

Ulcerative Colitis
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