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GrittyHope

HealingWell Forum
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Member Profile
Display Name
GrittyHope
Profile Created
3/11/2022 2:01 PM
Last Seen
3/14/2023 2:54 PM
Total Posts
91

Last 50 Posts

Just so tired. Natural route failed for me.

Was going to chime in with the budesonide advice too: a steroid that’s more gut-specific. It helped me immensely last year when I was in an awful flare that sounds v much like yours. (I tapered off...

3/11/2023 1:08 PM

Ulcerative Colitis
Study on ME/CFS and gut microbiome with crossover interest for IBD

Hello, everyone! I just came across this recent research on the gut microbiomes of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, which notes some similar findings with folks who...

3/10/2023 10:36 AM

Ulcerative Colitis
Article: Not enough data to support multiple annual COVID boosters, U.S. CDC advisers say

Hi, all. Keith, you note "I’ve seen news reports that we’re much more susceptible to colds, flues, and other viruses because of the social distancing and masking for a few years. Our immune systems...

3/6/2023 8:20 AM

Ulcerative Colitis
Question for menstruating people

Hello! I was on oral contraception for seven years in my twenties but haven't been for about 12 years now. My UC symptoms began around the time I stopped hormonal birth control. I was also flare-free...

2/22/2023 9:59 AM

Ulcerative Colitis
GI appointment update

I’m so sorry you’ve had such a bummer of a day. I relate to the medical trauma: sometimes appointments just bring up layers of memory. Your husband needs to deal with his issues. His comments were...

2/21/2023 12:51 PM

Ulcerative Colitis
Treatment when newly diagnosed

I'm sure others with longer histories of trying different medications will have insights here, but I wanted to pop in and say that when I had a major flare / disease exacerbation last winter/spring,...

2/3/2023 8:53 AM

Ulcerative Colitis
Stelara here I come!

Such great news, Rusty! Cheering along with you....

1/25/2023 7:46 AM

Ulcerative Colitis
Appendix

Hello! I had an emergency appendectomy last January. My UC (really ulcerative proctitis), which had stayed mild for eleven years, had started to flare mildly before the appendectomy, probably from a...

1/24/2023 12:34 PM

Ulcerative Colitis
Fresh from Pfizer deal, Roivant posts 'best-in-class' ulcerative colitis data on rival to Prometheus

Rusty, I read that in the article and though, "Oof, it doesn't even pretend we're people; it just tells the truth that it's about a 'market.'" But then I remind myself that while COMPANIES are out to...

1/23/2023 10:04 AM

Ulcerative Colitis
UC -> Since 2006 -> Confused -> Need Suggestions

Last winter my weight was too low after serious flare, and I increased it by eating extra snacks with butter and nut butters: I made blueberry muffins with flax seeds and would warm up two each night...

1/20/2023 8:02 AM

Ulcerative Colitis
Novovax?

I'm so glad your case at Christmas wasn't too bad! From everything I've heard, it's a good idea to keep resting and hydrating and taking good care for the next few months after an infection. I'm...

1/12/2023 3:09 PM

Ulcerative Colitis
Novovax?

Thanks, Susie! It's definitely being used here for primary and boosters, which is great news. My bigger question is about the medical research on its efficacy against new variants. I will keep...

1/10/2023 3:03 PM

Ulcerative Colitis
Oxymoron Remission

Just wanted to chime in support, Clo. I learn a lot from everyone here and am so grateful for your presence. I wish there was a magic SIMPLIFY wand for all of us....

1/10/2023 2:57 PM

Ulcerative Colitis
Currently Flaring

I'm so sorry you're going through this. My understanding is that COVID can trigger flares in most autoimmune diseases, in part because it messes with immune systems and in part because of its...

1/9/2023 7:10 AM

Ulcerative Colitis
Novovax?

Hi, folks, I'm watching the news about new variants (and the estimate that 1 in 38 Canadians have COVID right now) and due for a booster. Had Pfizer in August, so I could get the bivalent now. But...

1/8/2023 10:33 AM

Ulcerative Colitis
Confused about Zeposia

I'm just going to chime in that when I had to step up to a biologic last winter (I'd gone more than a decade without medical treatment, but the disease progressed and we found out I didn't tolerate...

1/3/2023 12:49 PM

Ulcerative Colitis
Long time no post - flare or not?

I’m glad you’re investigating and learn so much from these conversations. Just wanted to note that I learned last winter that the appendix doesn’t always manifest as a sudden crisis but can “grumble”...

12/28/2022 9:18 AM

Ulcerative Colitis
Entyvio Update: Now What?

(Yes the Entyvio Warriors group includes both UC and Crohn's patients--that's a good point.)...

12/22/2022 1:52 PM

Ulcerative Colitis
Entyvio Update: Now What?

I was on Budesonide while I waited for my first Entyvio dose, and also serious probiotics, and I think the Budesonide was doing the heavy lifting. However, I was able to wean off it toward the end of...

12/21/2022 3:13 PM

Ulcerative Colitis
Entyvio Update: Now What?

Some people in the Entyvio Warriors group on Facebook advise giving Entyvio six months, but that presumes you can stand living with whatever your symptoms are right now. My GI also mentioned that you...

12/19/2022 7:13 PM

Ulcerative Colitis
What’s the longest you’ve ever been on budesonide/Uceris?

I was on it for two months last spring. It was the extended release once-a-day version, and when I went off, I did taper by going to every other day....

12/19/2022 7:09 PM

Ulcerative Colitis
covid booster frequency?

Thanks, everyone! I'm actually an American expat, so it's always fascinating to see contrasts between the two countries. CCinPA, we're still VERY cautious (and far away from family), so I won't be...

12/9/2022 2:17 PM

Ulcerative Colitis
Paxlovid if you have IBD

I am on a biologic and very comfortable with western medicine, but I also see a naturopath for acupuncture. I asked her opinion of Paxlovid, and she said she's in favour of anti-viral prescriptions...

12/8/2022 4:09 PM

Ulcerative Colitis
covid booster frequency?

Thank you, Susie. The Canadian government's suggestion is a booster every six months, with the caveat that "a shorter interval of at least 3 months may be warranted in the context of heightened...

12/8/2022 4:06 PM

Ulcerative Colitis
covid booster frequency?

Hi, folks. Hope you're all doing well. No one had insights into LDN and biologics, which is okay--it was a very niche question! I'm still waiting for an appointment with my rheumatologist. In the...

12/8/2022 11:46 AM

Ulcerative Colitis
combinated therapy ( xeljanz + stellara)

My rheumatologist told me they won't do combined biologic therapy, but I'm not sure if it's due to best practice in medicine or due to our public health system's drug funding limitations....

12/7/2022 11:18 AM

Ulcerative Colitis
a long whine

Geezer, I'm just chiming in to say how ANGRY it makes me to see people need access to medication, knowing it can help, and facing all these bureaucratic roadblocks from companies trying to make as...

12/4/2022 2:13 PM

Ulcerative Colitis
Shoulder and Ankle Pain

I'm glad you got it checked out! Others may want to weigh in with more experience: it seems like these autoimmune issues sometimes travel together, and I think early stages of joint problems don't...

12/1/2022 3:33 PM

Ulcerative Colitis
Vaccine struggles?

I had a flare start last January with a coincidental timing with an MRNA vaccine, but I think it may have been brewing before the vaccine. Since I started a biologic without much warning in the...

11/30/2022 2:47 PM

Ulcerative Colitis
LDN with a biologic?

Hello, everyone! Last week, after a long wait, I finally had an MRI of my full spine, along with corresponding X-rays, to investigate the possibility of ankylosing spondylitis secondary to my...

11/30/2022 10:34 AM

Ulcerative Colitis
Shoulder and Ankle Pain

You might want to get the joint pain checked out? But in my own experience, whatever I can do to address inflammation in my body overall helps a bit with joint pain: I take curcumin and fish oil, I...

11/30/2022 10:23 AM

Ulcerative Colitis
How long have you had UC

I was diagnosed in 2011, in my late 20s. It was mostly mild / ulcerative proctitis for about a decade. Now I'm with you on Entyvio!...

11/30/2022 10:20 AM

Ulcerative Colitis
Quincy

Ooh, yes, I’m sorry about the Covid! I hope it resolves quickly and without any lasting nastiness. And bless dry needling, eh? So glad you have that!...

10/27/2022 5:23 PM

Ulcerative Colitis
Hallelujah!

So happy to hear you’re doing better! Keep us posted....

10/20/2022 4:51 PM

Ulcerative Colitis
How long for Entyvio to work?

The Entyvio Warriors group on Facebook is very active, and this question comes up a lot. Many people advise waiting six months or even longer. I started Entyvio in April and was able to taper off the...

10/18/2022 4:16 PM

Ulcerative Colitis
Portable Protein Options, No Splenda.

Oooh, I like this meatball idea, FlowersGal! Will borrow it. Thank you!...

10/17/2022 11:57 AM

Ulcerative Colitis
Portable Protein Options, No Splenda.

I wish fasting was an option for me, like for Keith! I don’t carry any extra body weight, and my blood sugar (?) / stress hormones need pretty regular protein. I haven’t found packaged convenience...

10/16/2022 9:05 AM

Ulcerative Colitis
Biologics and arthritis

Thanks for the feedback, folks. It’s a two month wait for MRI, bit I’m hoping the MRI and X-rays are illuminating, along with blood work. Trying to keep a good attitude: it feels a bit like I can’t...

10/13/2022 4:29 PM

Ulcerative Colitis
feeling vindicated

Charlie789, thanks for your comments on my thread, too. While my situation is different (the sacroiliitis was found incidentally), I just wanted to affirm that these experiences of knowing something...

10/12/2022 3:01 PM

Ulcerative Colitis
Vaccinations recommended and how they impacted you

I just had a pneuomococcal on Friday and my whole bicep got red and inflamed, but I only had a very slight fever and off feeling one day. Maybe an overall increase in body pain still. Haven’t flared...

10/10/2022 11:43 AM

Ulcerative Colitis
Biologics and arthritis

Thanks for these replies, everyone. waxmoth, I appreciate these studies! I wonder if quercetin is helpful for spondyloarthritis, which seems to present a different picture? I will definitely bring it...

10/10/2022 10:56 AM

Ulcerative Colitis
Biologics and arthritis

Hi, folks. I hope you’re all doing well. I haven’t been on the forum much the past few months as the whole family started a new school year (teachers and learners!) and it’s been very busy. The good...

10/8/2022 1:02 PM

Ulcerative Colitis
COVID infection best practice for UC patients

Thanks so much for this update, Flowers! I’ve had a course of steroids since my third dose, and I read that could diminish immunity further, but it’s good to know the relative mildness of Entyvio’s...

8/5/2022 9:49 PM

Ulcerative Colitis
Flare or something else

I haven't had this experience of rapid-onset symptoms with my UC--only with stomach bugs. If the pain gets worse and localizes to your lower right quadrant, get checked out for appendicitis too. In...

8/3/2022 5:16 PM

Ulcerative Colitis
COVID infection best practice for UC patients

Thanks for all the advice, everyone! Keith, I'm not sure if Evusheld is common in my part of Canada. Curious, my D levels were pretty good last time we checked. I might look at my bloodwork again,...

8/3/2022 1:22 PM

Ulcerative Colitis
COVID infection best practice for UC patients

Hi, everyone. I'm DELIGHTED to report that after my fourth dose of Entyvio, my fecal calprotectin is down to 14 (the lowest it's ever been). I'm fully off steroids and slated to be teaching back in...

8/2/2022 1:00 PM

Ulcerative Colitis
Update: Still in remission 1 year after starting Xeljanz!

Adding my cheers to the crowd here. Such great news!...

7/6/2022 6:22 AM

Ulcerative Colitis
Has Budesonide the same bad side effects as prednisone?

Budesonide is less absorbed systemically than prednisone. I was on a two-month course of Budesonide this year and had very few if any side effects--and I'm fairly sensitive to drugs. I would...

7/5/2022 1:14 PM

Ulcerative Colitis
My c-scope results and hip injections...

Quincy, thanks for the update. Re: the hip and low back pain, have you looked into pain reprocessing theory? Last month I read the book The Way Out, and I’m intrigued (as one who has suffered awful...

7/4/2022 6:32 AM

Ulcerative Colitis
antibiotics and uc flare

My flares in recent years have all followed antibiotics, unfortunately. I wish I had started on probiotics right away both times, especially Florastor (s. boulardii). I think there's some debate...

6/24/2022 10:35 AM

Ulcerative Colitis
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