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poopydoop

HealingWell Forum
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Member Profile
Display Name
poopydoop
Profile Created
12/16/2018 8:03 PM
Last Seen
Yesterday 1:48 PM
Total Posts
1849

Last 50 Posts

Fecal occult blood test vs. Calprotectin stool level (MD use)

Hi so I'm actually not a biochemist but a scientist in a different field.... I have heard from multiple IBD specialists that calprotectin is most sensitive to inflammation in the rectum. So you could...

Yesterday 1:48 PM

Ulcerative Colitis
Weighing my option of being hospitalized.

The urgency is mostly from inflammation in the rectum, which is also usually the last place to heal, so if your number if BMs is decreasing significantly but urgency is still there I wouldn't loose...

6/3/2023 12:30 AM

Ulcerative Colitis
Been a long time since I was on here!

Rinvoq is more targeted than xeljanz which means it may be more effective with lower risk of side effects. There is limited evidence for the first of these and I've yet to see evidence for the...

6/1/2023 1:45 PM

Ulcerative Colitis
Worried about Rinvoq :(

Would agree with Tonito. If you've ever been on prednisone the risk of a serious problem is much higher. I've been on xeljanz over 4 years and no side effects. My cholesterol also went up a bit at...

6/1/2023 1:12 AM

Ulcerative Colitis
Stelara. Shorter than 8 week intervals?

I made a poop chart during my last flare - kept a record of number of toilet visits in my diary then plotted a graph in excel. I also added a second line with my calprotectin numbers (which i was...

5/23/2023 12:16 AM

Ulcerative Colitis
undigested blueberries

When you have UC and are flaring, sometimes the transit time for food is too fast for things to be digested. But eating too quickly and not chewing things can also have the same effect....

5/23/2023 12:02 AM

Ulcerative Colitis
Been a long time since I was on here!

I doubt it has "never' been done before as there are plenty of experimental GIs and the clinical trials will have tested different doses but whatever 🤷🏾‍♀️ I would have thought it makes more sense...

5/21/2023 3:16 AM

Ulcerative Colitis
Been a long time since I was on here!

Bacon Girl, are you allowed to continue on the high dose of rinvoq for a bit longer? I'd be reluctant to drop the dose if you're not in remission and still on steroids....

5/20/2023 10:34 AM

Ulcerative Colitis
Stelara. Shorter than 8 week intervals?

Hi I cannot advise on the stelara although it would seem sensible as similar adjustments are made with other biologics. The issue is not the number of bowel movements- some people can go 4 or 5 times...

5/18/2023 5:06 AM

Ulcerative Colitis
Renflexis infusions

Some people notice improvements almost immediately (I met one woman who said after her 1st infusion she slept through the night without needing to go to the toilet, for the first time in ages). Many...

5/18/2023 4:56 AM

Ulcerative Colitis
Where is everyone?

Aaah I really want an EV but they're currently outside my budget. That being said the charging actually puts me off - not always convenient for long distance travel if you can't find a charging...

5/16/2023 10:18 AM

Ulcerative Colitis
Approved for Rinvoq, but sick at the moment

It's possible you still have covid without testing positive. PCR tests are more reliable than self tests but even those can give false negatives. I remember watching a hospital documentary early in...

5/15/2023 3:49 AM

Ulcerative Colitis
Where is everyone?

Old Mike - I looked up carnitine after you mentioned it and apparently one of the side effects is having breath and sweat that smell like fish. So.. I think I'll give it a miss 😆 even if it was a...

5/15/2023 3:40 AM

Ulcerative Colitis
Has anyone taken infusions for UC relief?

You don't need blood tests before every infusion....

5/13/2023 2:45 AM

Ulcerative Colitis
Rinvoq (Upadacitinib)

I am not a microbiologist but as I understand it, the JAK inhibitors target different components of the immune response than say a biologic does. The effectiveness depends on the role that component...

5/6/2023 8:05 AM

Ulcerative Colitis
Rinvoq (Upadacitinib)

The good thing about the jak-inhibitors (i.e. xeljanz, rinvoq, jyseleca) is that their effectiveness does not seem to be influenced by how well you responded to other drugs....

5/5/2023 11:59 PM

Ulcerative Colitis
Rinvoq (Upadacitinib)

I am on xeljanz which is from the same family of drugs as rinvoq and have been in remission for 4 years. I previously tried infliximab (including at a double dose of 10mg/kg), entyvio and...

5/4/2023 12:25 AM

Ulcerative Colitis
Rinvoq (Upadacitinib)

Ooh that's excellent news 😀...

5/3/2023 9:54 AM

Ulcerative Colitis
Rinvoq (Upadacitinib)

I was off prednisone when i started xeljanz and had severe inflammation in my rectum with associated awful symptoms. Xeljanz worked. Having your symptoms controlled by prednisone is not the same as...

5/3/2023 12:26 AM

Ulcerative Colitis
Been a long time since I was on here!

CC - I am skinny and I still get told my UC is because of poor diet......

4/27/2023 11:02 PM

Ulcerative Colitis
Been a long time since I was on here!

Oh i totally get you.... when I was flaring badly I had so many people say to me "How are you - you're looking well!" when I was DYING on the inside. It was so invalidating. What exactly is "sick"...

4/27/2023 5:06 AM

Ulcerative Colitis
I'm back :(

It's the same in europe, conquer UC. i tried to get shingrix for a while but it wasn't available (and noone had heard of it) so I just gave up. The best I could get was a blood test of my chicken pox...

4/24/2023 1:17 PM

Ulcerative Colitis
Annoyed with my IBD team

Well they ought to explain it properly to you.... but indeed, it's a good option (not the only option) with a relatively high success rate so hopefully it will do something for you and fast....

4/24/2023 7:26 AM

Ulcerative Colitis
Annoyed with my IBD team

It's not a biologic, it's a jak inhibitor. If they told you it's a biologic they are even more uninformed than we already knew.......

4/24/2023 3:26 AM

Ulcerative Colitis
Been a long time since I was on here!

It's not really a loading dose in the same way as biologics (where you need to build drug levels up in the body over time), but a higher dose to help kick start remission. The JAK inhibitors have a...

4/22/2023 10:22 AM

Ulcerative Colitis
Why is oral mesalazine capped at 4g?

Also: i have taken double doses by accident a couple of times. You'll be fine....

4/21/2023 2:45 PM

Ulcerative Colitis
Why is oral mesalazine capped at 4g?

I am on 4.8g oral and 4g rectal so 8.8g total. I have seen studies using higher doses of oral (up to 9.6g) I'm not sure why they're not used more often...I don't think there have been large scale...

4/21/2023 2:42 PM

Ulcerative Colitis
I'm back :(

Ps if you take an immunosuppressant you may mount a lower immune response to ANY vaccine, regardless if it is live or otherwise. That is why it may be beneficial to get the vaccine before starting...

4/21/2023 2:15 PM

Ulcerative Colitis
I'm back :(

I've been on xeljanz for 4 years and not had a shingrix vaccine. There is an increased risk of shingles on xeljanz and rinvoq but you'd be pretty unlucky to catch it in the first few weeks....

4/21/2023 2:09 PM

Ulcerative Colitis
Been a long time since I was on here!

Bacongirl I have been following this quietly, I am so sorry to hear how you've been handled in the hospitals, that is crazy. And in a country like the US, I thought they had enough resources....I...

4/21/2023 2:45 AM

Ulcerative Colitis
Restarting Entyvio?

When i switched from entyvio to xeljanz I had an entyvio infusion then started xeljanz 2 weeks later, so that there was still some entyvio in my system. I agreed with my GI that if xeljanz didn't...

4/20/2023 10:38 AM

Ulcerative Colitis
FDA Approves Bivalent Booster

I am still seeing colleagues lain low for weeks with covid infections so I will take any vaccine that's offered to me (which it currently isn't in my country 😠) as I'd rather be out of action for...

4/19/2023 11:33 PM

Ulcerative Colitis
Annoyed with my IBD team

You don't have to think positive, unless you find that it helps you. It doesn't help me 🤣 (in fact generally I want to punch people in the face who tell me to stay positive). But I'm happy you have...

4/16/2023 11:49 AM

Ulcerative Colitis
Coffee drinking

Iron pills can aggravate IBD (talking about the high dose ones, not the low dose you get in a multi vitamin). Iron infusions are generally well-tolerared but expensive....

4/16/2023 4:53 AM

Ulcerative Colitis
Annoyed with my IBD team

Given your history, prednisone is not going to put you in a sustained remission even if it helps you feel better. Sounds like you'll have to steer your IBD team and push for a biologic. I would look...

4/14/2023 2:14 PM

Ulcerative Colitis
Annoyed with my IBD team

What a bunch of idiots. Sorry but this makes me really angry. The protocol for antibodies is they should try increasing dose/frequency first, before stopping. And there is something called informed...

4/14/2023 5:36 AM

Ulcerative Colitis
Back after a long time

OP, I'm sorry to see you're suffering so much. When my flare was at its worst I had zero quality of life. It doesn't have to be like this. The meds that you fear are much safer than prednisone...

4/12/2023 6:57 AM

Ulcerative Colitis
C. diff vs. bad flare

Sorry i can't answer most of your questions except to say that I was once subjected to repeat c-diff stool tests when the hospital didn't believe i was flaring. Sometimes a single test gives a false...

4/9/2023 3:46 PM

Ulcerative Colitis
Does Stelara work better the longer you are on it?

When I started xeljanz I had to stop azathioprine/allopurinol cold turkey because it's too much immunosuppression to take them together. As a result i had some improvement on initially starting...

4/6/2023 2:40 PM

Ulcerative Colitis
Been a long time since I was on here!

Sorry, i should have said north America.......

4/2/2023 9:28 AM

Ulcerative Colitis
Been a long time since I was on here!

4 years on xeljanz and I didn't have a shingrix vaccine... I thought I was missing out on something but hearing these horror stories maybe it's not so terrible... Like many things, shingrix is not so...

4/2/2023 3:11 AM

Ulcerative Colitis
Imuran for UC

Some medicines must be taken on an empty stomach... some must be taken with food... and a whole bunch don't matter when you take them. That's why....

4/1/2023 2:16 PM

Ulcerative Colitis
First flare?

Yes they can be. Sorry you are suffering so much. Your GI needs to put you on a new treatment asap. Important thing is can you retain fluids? Do you have a fever? I've never been to the ER for my UC...

4/1/2023 12:14 AM

Ulcerative Colitis
Cabbage Juice

I often wonder why people come on this forum if they hate it so much.... I remember seeing posts about cabbage juice years ago. I think it worked for 1 person. I juice every day, through flares and...

3/31/2023 10:06 AM

Ulcerative Colitis
Imuran for UC

I was advised to take it after dinner to avoid nausia. Agree with Susie it would be wise to check in with your doctor....

3/31/2023 9:50 AM

Ulcerative Colitis
Any Withdrawal Symptoms after Stopping Azathioprine?

No withdrawal symptoms and will add I was very happy the day I stopped it....

3/30/2023 9:44 AM

Ulcerative Colitis
I am doing a lot better on filgotinib

That's great news! Hopefully will continue to improve with time....

3/28/2023 2:09 PM

Ulcerative Colitis
Been a long time since I was on here!

The difference between entocort and uceris (aka cortiment in Europe) is that entocort is mostly released in the ileum and right side of the colon (ascending colon) whereas uceris targets the full...

3/28/2023 12:12 PM

Ulcerative Colitis
Xeljanz and Birth Control (Venting)

Oh no how frustrating!! I have been on xeljanz plus birth control for 4 years. I'm aware of the risks but xeljanz plus pregnancy is also not desirable, so......

3/24/2023 9:41 AM

Ulcerative Colitis
Colonoscopy. Every two years?

I know but I am in Europe so have to follow the protocols here.....

3/18/2023 1:48 PM

Ulcerative Colitis
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