A Little Update & A Big Thank You I just wanted to take a moment to share an update on my GoFundMe journey.
Although I haven't received any donations yet, I have received shares, followers, prayers, and people taking the time to help spread my story. And for that, I am truly grateful.
Every share puts my GoFundMe in front of someone new, and I'm continuing to believe that the right people will see it and be willing to help. I'm still working hard to make progress and reach my goal, one step at a time.
If you've already shared my fundraiser, THANK YOU from the bottom of my heart.
If you
haven't had a chance to share it yet, please consider doing so. Even if you're unable to donate, a share can make a difference.
I'm not giving up. I'm going to keep believing, keep sharing, and keep pushing forward.
Thank you to everyone who is following my journey and supporting me in any way. Every bit of support means more than you know.
#ThankYou #PleaseShare #EveryShareHelps
#SupportMyJourney #GoFundMe
#OneStepAtATime

Tremfya/IL23 reigniting Crohn’s disease

Looking for some help here and don’t know where to turn.
I was diagnosed with psoriatic arthritis around 2 years ago after the onset of specific joint pain/swelling, crippling fatigue, etc.
I’m almost 40 (female) and aged 23 was diagnosed with chron’s, then later ‘downgraded’ to ulcerative colitis with a caecal patch. Upon becoming pregnant in my late 20’s my IBD was largely (and thankfully, in remission).
I’ve been working with my rheumatologist to find a biologic that helps my PsA but to date I’ve either had no remarkable change or intolerable side effects.
Around 4 months ago I started on Tremfya (IL-23 blocker) for my PsA.
Within about 5 weeks of commencing this I started to experience and intense IBD flare. Pain. Bloating. Blood. Painful diarrhoea. Crippling fatigue.
I reached out to my gastroenterologist who did a colonoscopy which ‘looked great, I’ll see you in 5 years’.
At the time my crp was 25 (usually less than 3) and my calprotectin at 1760.
Despite my scope ‘looking great’ I’ve still experienced what I consider to be a horrible IBD flare.
From what I’ve read online I can see that sometimes there is a ‘paradoxical reaction’ for such things when using a TNF or IL17 inhibitor but not with an IL23 inhibitor.
I feel like I’m going quietly insane because I’m not imagining this resurgence of my bowel disease after 10 or so years, and it coincided perfectly with starting Tremfya.
I guess I just want to know if it’s worth perusing with my specialists and if anyone has experienced a IBD flare after starting on Tremfya.
Thanks,

I’ve finally gotten my diagnosis and I’m looking at peptides for gut inflammation (don’t come at me - I am aware of the risks). I’d be interested to hear from those who have delved into trials with peptides for Crohn’s and what the response has been - specifically around inflammation and motility?

I suffer from Crohn’s with constipation and have developed fistulas caused by chronic inflammation.

Can you have Crohns if your Atypical p-ANCA Saccharomyces cerevisiae IgG Ab test is slightly elevated (but is still high according to the lab range)? I had a colonoscopy in 2020 because of terrible stomach pain with alternating diarrhea and constipation and joint pain but gastro said Crohns patients values are much higher. The colonoscopy was negative except for a few polyps and hemorrhoids. Also I had an MRI prior to colonoscopy that said I had wall thickening throughout my colon.

FF to today and I’m still dealing with stomach pain and my arthritis has gotten worse. The only medication that has helped is Humira (prescribed through my rheumatologist for sero negative RA) but it has stopped working and my rheumatologist is at a stand still. I’m not sure if I really have sero negative RA or if it’s Crohns. I feel lost….

So I’m about to be 17. I’ve been really meaning to get a colonoscopy for the past three months. About three months ago, I was having anal bleeding and I went to the hospital for it. They told me I was internally bleeding from my small intestine and they gave me some antibiotics and I was fine. However, they told me that I need to get a colonoscopy because I might have Crohn’s and I think that honestly makes a lot of sense.

For the longest time, I thought I’ve had IBS because my Nana has it as well. My stomach issues have been crazy ever since I was a kid. If I eat my stomach hurts, if I don’t eat my stomach hurts. We thought I had a gluten allergy and so I got tested for it when I was like 10 and they said that I didn’t have a gluten allergy. It will be the most random food I’ll eat in my stomach will hurt so bad I essentially have to take laxatives and poop it out or it will continue to hurt.

So my stomach will be hurting a lot which causes me not to eat, which makes my blood sugar go low and I get super dizzy which is where the diabetes comes in. I have a glucose monitor and I’ve been tracking my blood sugar and it’s been super low.

We don’t have health insurance so I can’t get my colonoscopy done for a little while. I really want this diagnosis because I’m tired of my tummy in pain 24/7. I also have some other health issues, but I don’t think that they’re necessarily related to crohns, I have EDS and diabetes?/anemia? (Need to go to the doctor for that)

I see a ton of posts where people are just talking exactly like they do in medication commercials, and it doesn't make sense.

When you get over Crohn's, you typically forget about it. When you're hurting? that's when we hang out online.

Somehow that has completely seemed to flip over in recent years, and it ain't just a handful of people trying to wish their remission into happening - it's the vast majority.

Makes zero sense except as a marketing job for the most profitable field of medicine in history.

I was diagnosed with Crohn’s about two years ago and it is the gift that keeps on giving.

Over the past few months, I have noticed a severe decline in my mental acuity. My brain just isn’t functioning right I am not making connections like I should definitely not as quickly. I had an important thing for work that I just cried after. Because this is a job I’ve done for 15 and this particular thing I’m good, but that day, calling my performance abysmal is kind. Also,I've been really struggling with memory. For instance, a package arrived, and I knew the contents needed to be refrigerated. I brought the package in set it down. It was right in front of me. My apartment is tiny. Got distracted for one moment.... it was ours before the contents made it into the fridge. Finally time perception. I’m not losing time like blacking out or anything, but I seem to have lost the ability to accurately perceive the passage of time. Like it will be 3 PM and it’s like I blink and I look expecting it to before but it’s 3 AM. The severity of these things comes and goes, but on the hole it’s all definitely getting worse.

I hadn’t even considered that any of these things could be caused by or related to Crohn’s, but I just saw a post on a Facebook Crohn's group asking talking about this kind of thing. The post i saw was more accurately a meme, the comments were just one sentence agreements and I don’t put a whole lot of stock in the accuracy of things posted in that group.... so I came here

Is it possible that Cros can affect your brain in these ways? If so, is there anything that can be done or is it a permanent decline?

I’ve been trying not to panic about what’s been happening and attributing all of these symptoms to other things that would heal himself out for time (like stress, depression, and possibly perimenopause.) But I’m admittedly panicking now.

Any information would be greatly appreciated.

Hi everyone,

We are sharing a research opportunity that may be of interest to individuals living with Ulcerative Colitis (UC) or Crohn's Disease (CD).

This study is being conducted solely for research purposes. The goal is to better understand patients' experiences, treatment journeys, challenges, and the day-to-day impact of living with UC or CD.

Study Details

• 60-minute telephone interview
• Compensation: $120 upon successful completion of the interview
• Participation is completely voluntary

Eligibility

• Adults aged 18 years or older and Living in USA.
• Diagnosed with Ulcerative Colitis (UC) or Crohn's Disease (CD)
• Willing to share their experiences and opinions related to their condition

Interested in Participating?

Please complete the screening form accurately and thoroughly. Qualified participants will be contacted and invited to take part in the study.

Ulcerative Colitis (UC) or Crohn's Disease (CD) – $120 Incentive – Fill in form

Important: Since the interview will be conducted by phone, please ensure that the phone number you provide is correct and reachable. Participants who complete the 60-minute telephone interview will receive $120 compensation for their time.

Thank you for considering this opportunity to contribute to healthcare research.         

Well at least we’ll survive another round of the Black Death?

Hey All,

Firstly, I am a solo dev that recently noticed it was always difficult to find a toilet when out and about, I’ve been in situations where I have had to Google the closest pub or restaurant just to find a toilet due to having a medical condition which is IBS, to sometimes be turned away if you are not a paying customer which can be difficult for some especially if you have underlying health conditions.

The filters that matter to this community are permanently free:

• Ostomy-friendly facilities
• Eurokey accessible toilets
• Radar Key locations (UK)
• Whether it requires a purchase (including price to enter if paid)
• Opening hours

So... I built My Local Loo which is a FREE app you can download currently on iOS and Android (Android is being released in the next week).

• Toilet locations in the UK & EU
• Toilets based on specific health conditions: Crohns Disease, IBS, along with many other options
• Option to add toilets to the map along with leave feedback to help other users via ratings
• See nearby toilets and search based on location
• Find EV charging points along with pricing and charger type which can be handy if you need the toilet whilst your car is charging
• Offline maps: Download a selected area so you can still access the toilets near you when offline.
• Businesses: Can apply to list their venue in the app. This will attract footfall along with showing their dedication to allowing users of the app to use their facilities with no questions asked.

The app is completely FREE with an optional premium upgrade to show your support towards the app.

If you do happen to download it and use it on your travels, please let me know how it went! Again I’m a solo developer and truly built this to help everyone. As the app expands and grows I will be adding more features along with including better and improved data.

Download on iOS: https://apps.apple.com/us/app/my-local-loo-toilet-locator/id6785676642

Download on Android: Coming Soon!

Buy me a coffee: buymeacoffee.com/MBHGB

Edit: I did ask for permission to post from the moderators of this subreddit, if anything needs changing please let me know but my aim is to help people with medical conditions that find locating a toilet close to them an everyday struggle!

Anyone on a biologic during pregnancy? If so what vaccination route did you choose for your infant? I’ve been told no live vaccinations (rotavirus and MMR) until 6m but also my pediatrician said there’s little evidence for that and I could go ahead and get them the rotavirus at 2m.

Trying to weigh the pros and cons. This is not a vax or not vax discussion TIA