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poopydoop

HealingWell Forum
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Member Profile
Display Name
poopydoop
Profile Created
12/16/2018 9:03 PM
Last Seen
Today 1:36 PM
Total Posts
922

Last 50 Posts

Failed Humira, and now Remicade, what’s next?

Hmm well, I'm a female of child bearing age, and I've been taking xeljanz for 2 years. I would guess the risk factor is blood clots, which has been demonstrated for arthritis patients over 50 with...

3/2/2021 3:12 PM

Ulcerative Colitis
Questions for people who got covid vaccine.

I have 2 sisters with crohns disease living in the UK, they both got the Astra Zenica vaccine a few weeks ago and did not flare. Tbh I'd be more worried about flaring from covid, especially if I...

3/1/2021 4:43 PM

Ulcerative Colitis
Dr Albert Snow cures UC too good to be true?

Which medications did you try and what did the doctor offer you that would "severely compromise" your immune system? I've taken 5 different immunosuppressants in the past 4 years and none of them...

3/1/2021 3:08 PM

Ulcerative Colitis
Pfizer or Moderna?

Also it's not just about mortality, but the fact that roughly 10% who have a covid infection develop long covid (i.e. symptoms lasting months), including young fit and healthy people....

3/1/2021 12:37 AM

Ulcerative Colitis
Pfizer or Moderna?

Yeah having seen friends in their 30s be incapacitated for 9 months by long covid, I am very much looking forward to getting a vaccine. One of them had both her pfizer shots and says after the 2nd...

2/28/2021 5:19 AM

Ulcerative Colitis
About to Give In to Biologics

Biologics are made from organic material, e.g. infliximab has mouse and human components. Xeljanz is entirely synthetic....

2/28/2021 12:10 AM

Ulcerative Colitis
Failed Humira, and now Remicade, what’s next?

Xeljanz definitely the fastest, if it's going to work for you. Most people notice something in the first week. Entyvio takes weeks or months to have an effect....

2/26/2021 12:51 PM

Ulcerative Colitis
Failed Humira, and now Remicade, what’s next?

I think cimzia is another tnf inhibitor so I wouldn't choose that because you've not really had a full response on two other tnf inhibitors. Any of entyvio, stelara or xeljanz are worth trying....

2/26/2021 11:12 AM

Ulcerative Colitis
About to Give In to Biologics

Xeljanz isn't typically given for crohns. It's very effective for UC. It was licensed for UC in 2018. Xeljanz is also not a biologic but a JAK inhibitor....

2/25/2021 3:06 PM

Ulcerative Colitis
Blood in stool

I've found FCP really sensitive to my flares- well because I'm a nerd i made a chart of fcp through time versus number of BMs and they tracked each other. That being said, it took me years to figure...

2/23/2021 1:07 PM

Ulcerative Colitis
Blood in stool

But having symptoms and being in a flare are not necessarily coincident - hence the importance of fcp tests - so I can fully believe some people will have blood as their last symptom. One doctor once...

2/23/2021 11:33 AM

Ulcerative Colitis
3 years without a colon

Hi, love your updates. Never know when I might need to join the jpouch club, so this is really reassuring....

2/23/2021 1:02 AM

Ulcerative Colitis
Alternatives to a Colonoscopy? Can’t Afford One...

You could do a fecal calprotectin test, which will be high if the inflammation is worst in the rectum and sigmoid colon. Might not help your case if the inflammation is more distributed along the...

2/22/2021 10:12 AM

Ulcerative Colitis
Flaring after my third infliximab infusion :(

Hi M I think it could be wise for them to measure your blood levels of infliximab before switching to another drug (normally they do it just before an infusion to get the trough level) to see if you...

2/20/2021 4:30 PM

Ulcerative Colitis
Flaring after my third infliximab infusion :(

Hi, i flared after my 3rd infusion too, while tapering pred. I'd got down to 5mg when it happened. The hospital acted like they'd never seen that before, so it took 6 weeks to convince them it was...

2/20/2021 8:46 AM

Ulcerative Colitis
Biologics / infliximab - game changer

Hi Tblock great to hear you are doing so well and congratulations on your wedding! When I used to have infusions I met other colitis and crohns patients and recall people who had been in remission...

2/20/2021 3:48 AM

Ulcerative Colitis
Hydrocortisone steroid enemas/suppositories

Hi CC it was me, sorry not wanting to freak you out. Long term use can cause the muscles of the rectum/anus to atrophy, also known as steroid myopathy. Regarding thinning I was thinking of topical...

2/18/2021 7:02 AM

Ulcerative Colitis
Pancolitis to no symptoms in 16 days?

Hi that all sounds very stressful. Good advice from Beave above. I've had colitis for 6 years and I'm one of those people whose blood tests come back totally normal every time, i.e. no elevated...

2/17/2021 3:50 AM

Ulcerative Colitis
The long winding road to remission ?!

When i was tapering below 15 mg i broke tablets in half so that i could do 12.5mg, 7.5mg etc. I think i dropped 2.5mg every 2-3 weeks. Below 5mg i went in drops of quarter tablets. My dr didn't...

2/13/2021 2:23 PM

Ulcerative Colitis
About to Give In to Biologics

I could but I'm sure you're smart enough to do the research yourself :) A quick google for "topical steroids long term" gives you an idea....

2/13/2021 10:15 AM

Ulcerative Colitis
Pfizer or Moderna?

The vaccine has been developed and produced by Janssen, a Belgian company and subsidiary of Johnson & Johnson. Janssen does have experience with vaccines, including recently they developed an ebola...

2/13/2021 8:45 AM

Ulcerative Colitis
Pfizer or Moderna?

I think it means in a community. The trials usually compare the number of sick people in placebo group versus in the vaccine group....

2/12/2021 5:44 PM

Ulcerative Colitis
Pfizer or Moderna?

No, pfizer and moderna use mRNA technology, this uses an adenovirus vector. it's more similar to the astra zenica vaccine in terms of how it works. The 66% efficacy is based on a single dose and...

2/12/2021 8:26 AM

Ulcerative Colitis
Pfizer or Moderna?

J&J is ~66% effective with a single dose...

2/12/2021 6:31 AM

Ulcerative Colitis
About to Give In to Biologics

You might want to rethink ashwagandha as it stimulates the immune system and therefore potentially aggravates autoimmune conditions. I had a lot of fear before starting biologics but once you're on...

2/11/2021 4:44 PM

Ulcerative Colitis
How many don't take Prednisone when encountering a flare?

I tried budesonide (cortiment) before prednisone. It's a much weaker steroid and it did nothing for me......

2/11/2021 2:48 PM

Ulcerative Colitis
Persistant " mild" Ulcerative Proctitis: Advice needed

You can go up to 4 mezavants.......

2/10/2021 11:28 AM

Ulcerative Colitis
Colonscopy effects?

*holds hand up*...

2/10/2021 11:25 AM

Ulcerative Colitis
Colonscopy effects?

You should aim for absence of symptoms not relief of symptoms - why settle for 60% quality of life when you can get 100%? Ideally absence of inflammation is good too and your doc is right that...

2/10/2021 8:20 AM

Ulcerative Colitis
How many don't take Prednisone when encountering a flare?

You don't need to justify it, many of us have been there. I think with severe inflammation you'd need to get on a fast-working immunomodulator like remicade or xeljanz, and respond to it, if you...

2/9/2021 3:19 PM

Ulcerative Colitis
How many don't take Prednisone when encountering a flare?

Like you I could not function with the symptoms I experienced without it. I was on it for 2 years while trying different medications and now have osteoporosis. "Never" is a strong word, but I would...

2/9/2021 11:23 AM

Ulcerative Colitis
Pfizer or Moderna?

If I had the luxury to choose which vaccine, I would research which ones work best against the new variants, especially the south African and Brazilian strains. Don't think there's much difference...

2/8/2021 10:29 AM

Ulcerative Colitis
Do you ever feel completely alone?

Where I live (europe) biologics are used as "the next level up" after azathioprine, not because they are more dangerous, but because they are more expensive. I've been on loads of different UC meds...

2/8/2021 2:44 AM

Ulcerative Colitis
Sulfasalazine side effects

I second getting a new GI....

2/5/2021 8:31 AM

Ulcerative Colitis
Flaring now. What do you eat during a flare?

My go-to foods are chicken, rice, pumpkin, sweet potato, cooked carrots (i don't know what it is about orange vegetables...) scrambled eggs. Bananas are ok if they're ripe. No soap!...

2/2/2021 7:07 AM

Ulcerative Colitis
high dose probiotic and biologics (entyvio)

Yep. I've been taking vsl#3 with imuran, entyvio, remicade and xeljanz...

2/2/2021 5:06 AM

Ulcerative Colitis
The Anxiety of Returning Symptoms

When I'm doubting, I do a calprotectin test....

2/1/2021 2:05 PM

Ulcerative Colitis
Vaccine Priority?

UC is not particularly a risk factor for covid. Certain medications might be. I'm in Europe and have to wait until over 60s are done before immunocompromised patients under 60 (which i am) will be...

1/31/2021 8:43 AM

Ulcerative Colitis
Humira Question

I've also heard this before and wish I'd started biologics sooner instead of having under treated inflammation for years. I've been on a few different ones and have no significant side effects to...

1/30/2021 3:02 PM

Ulcerative Colitis
Husband just diagnosed with ulcerative colitis.

I would really avoid prednisone if you can. Yes it's cheap and it works quickly but 1. There is a risk of being stuck on it long term which is associated with irreversible side effects and 2. It will...

1/29/2021 2:32 PM

Ulcerative Colitis
How to deal with ulcerative colitis proctitis pain

That's sad. I saw 5 different GIs before I found one I like (and who got me in remission). He is a specialist in IBD and I also switched to an academic hospital (i.e. they are doing clinical trials...

1/29/2021 2:42 AM

Ulcerative Colitis
How to deal with ulcerative colitis proctitis pain

Colitis shouldn't cause daily pain when you're in remission. Sounds like you might be flaring and need stronger UC medication. For me pain is the first symptom of a flare. Have you done a...

1/29/2021 1:48 AM

Ulcerative Colitis
Any vitamins/supplements that are no-brainers?

Re psyllium, I was advised by a doctor not to take it within 2-3 hours of mesalazine tablets as it can prevent the absorption of drugs in the colon....

1/28/2021 2:01 AM

Ulcerative Colitis
How can you give yourself a placebo besides taking a fake pill?

So basically placebo is about training your brain not to respond to the illness without treating the underlying condition?...

1/27/2021 6:55 AM

Ulcerative Colitis
How Many Truly Believe That Food Will Cause/Stop A Flare

I'm not sure this is directly relevant for this thread but.... I had a phone consult with my GI this afternoon. He was explaining that there were different types of colitis, depending on where the...

1/25/2021 4:44 PM

Ulcerative Colitis
a good natural lube for enema insertion?

Just use the enema itself...

1/25/2021 7:23 AM

Ulcerative Colitis
Not in a flare

Body aches can have a bazillion causes, and not necessarily autoimmune. Is it in the muscles or the joints? I am prone to lower back pain which can refer into my legs due to a squashed disc in my...

1/24/2021 3:22 AM

Ulcerative Colitis
How Many Truly Believe That Food Will Cause/Stop A Flare

When I'm flaring, I avoid foods that make me feel worse. Fibre is the main problem, i.e. most vegetables and legumes. As my bowel heals I can slowly re introduce foods. I totally get you about being...

1/24/2021 2:47 AM

Ulcerative Colitis
Poll: Stress and UC connection

I think our bodies do not have the resources to heal inflammation if we put our energy into stress. For me that means stress can trigger flares or make them worse, but I've also had flares at times...

1/21/2021 12:58 AM

Ulcerative Colitis
What are my options? Bridge to biologic

I've heard of xeljanz being used as a bridge to biologics (since many people respond within 3-7 days and it's safer than pred) but it's not a mainstream protocol...

1/19/2021 10:44 AM

Ulcerative Colitis
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