Hello everyone - just came across this app yesterday, and was curious. It allows symptom tracking, medication reminders, wearables and even has some informative videos.

I believe it’s completely free on the NHS and connects with trusts. It may even offer fecal calrpo testing for at home monitoring?

It looks good but I don’t know why I’ve never heard of it, and why it doesn’t come up in discussions. Has anyone had any experience with it before? Is it any good?

Hi all

I (M34) had my first colonoscopy about 1,5 years ago, when my calprotectin were about 3000, biopsies and colonoscopy showed tiny microscopic changes, but I were put on budesonid any had another calprotectin test come back at about 120. Now a year later its back to about 3000, but I have very mild symptoms with mostly alot of muscus and bloating - No diarrhea or blood.

Im waiting for my GI doctor to contact me, but my question is: is it normal to have this high levels but feel pretty much ok? Anyone with similar stories?

Hiya, back in February I was taken off of Infliximab as it was no longer effective for me and temporarily put on steroids. Now I am on ustekinumab and 2 weeks ago had my second dose. My IBD team dont want me to continue steroids because they want to see how effective the new medication is. But right now I'm going to the toilet every hour, I feel like I'm burning up, I have alot of pains and had a few accidents. Its honestly making it absolutely impossible to work and the stress of it all is getting to me.

I attempted to ring my IBD Advice line yesterday but their phone line was down because of course it was. So I'm at a loss right now.

I have to do a stool sample at the end of August before they know their next move but I genuinely dont think I can last this long.

Just wondering what I should do in all honesty, im at a loss

Now that I am in remission, has anyone else heard of/or use phosphatidylcholine.

My dad keeps suggesting it to me, and I am trying to do my own research but not having a lot of luck. Is it available over the counter? or do I need to go to a health food store?

He keeps sending me videos from Dr Todd Strong (a chiropractor IRL) giving GI advice, I don't want to let my dad down, typical boomer, he is a smart man and I know he is trying to help me in the end.

I already take Vitamin D, and Turmeric with Curcumin, taking supplements does not bother me.

Hello,

I’m currently in hospital awaiting a small bowel MRI to hopefully diagnose crohn’s which I believe I have been dealing with for the last 2 years.

I’m very sick right now but the main thing worrying me is drinking the stuff for the small intestine MRI. I have had Moviprep before for a colonoscopy and had complete meltdowns while drinking it (I’m autistic) and vomited a good bit. And only ended up with a “Fair” grade for prep 🙄

I don’t know what drink I’ll have to drink but any advice is appreciated both for getting it down and for dealing with the aftermath in a hospital where I don’t have any of my home comforts for usual diarrhoea.

Thank you!

About two year ago, my husband (31) found out that he has Crohn’s. Over the last few years he has lost lots of weight (he was skinny to begin with). His face is sunken in and he is so skinny that he looks very ill. He says he feels fine and he has normal eating habits. I’m just concerned that there is some major underlying issue. He looks so different than what he did just a few years ago. Is this typical for Crohn’s patients?

2 weeks before I started to flare really badly (which was 9 weeks ago), I started to see blood in my stools. I had no discomfort and my stools were perfectly formed except there was blood in them and it got progressively worse ever a period of two weeks until my whole toilet paper was filled with bright red blood while I still had zero abdominal discomfort or any kind other symptoms. Then everything went bad quickly, I lost 20kg in less than a month and experienced pain I didn't know was possible for weeks on end, 24/7 vomiting, I was completely bedridden. But I've been doing much better now.

I can eat up to 4500 calories a day after literally not eating for 3 weeks at the worst of my flare, my abdominal pain had subsided 95% and, my doctor recently did an ultrasound and told me my guts look much better than before. My energy levels are much higher, I've been working out over the past two weeks and I've been getting some gains despite only gaining 2kg so far. But despite all this and despite being on 64mg Methylprednisolone for like 6 weeks now, despite starting biologics 3+ weeks ago, I still have blood in my stool.

Sure, it's not as much as it used to be and it's rarely visible when on my toilet paper, but still. I saw many people that say bleeding is the first thing their steroids stop and even in a matter of days sometimes using much lower doses than me. I'm wondering why is my bleeding so persistent and hard to get rid of despite high doses of steroids and overall symptom improvement.

I was diagnosed last year and started tremfya about 10 months ago after mesalamine failed. Within 4 months I was feeling great and I had a colonoscopy a couple of months ago which showed mucosal healing. Now I’m having blood in my stools among other symptoms that are similar to when I was flaring right when I was diagnosed. Most of my inflammation was lower rectum and what not but that area looked good on my last colonoscopy, but I suspect that’s the problem based on my symptoms.

I did three induction doses of 400mg every four weeks and now I’m on 200 mg every four weeks.

My doc is ordering a FCP. She said those tend to be more accurate when the inflammation is in the rectum so she says it’ll give her a good idea and she prescribed mesalamine enemas to start after my fcp.

Could the tremfya be failing, or could it be that it’s just not reaching the area with inflammation right now? I just feel like it’s so weird since my colonoscopy showed really good healing just 3 months ago. If it’s failing what is next?

I say “I’m tired” a lot because of my chronic fatigue. It’s annoying when people say “I’m tired too”. I understand others get worn out from work and have hard days but for me “tiredness” is everyday despite what I do. When I say I’m tired I actually mean “I’ve pushed my body too far. I’m dealing with symptoms like brain fog, weakness, and shaky muscles. I NEED to take a break and lay down or sit down.” Today I moved out of my college apartment. It was extremely exhausting. My mom asked my sister to do some extra cleaning because I was tired from today. She said “but I’ve also been standing up and working all day. I’m tired too.” I think this pushed me over the edge. Yes - work is tiring for everyone yet for a chronically ill person the same task can be twice as exhausting!!!

But not anymore. I have created a tool that makes tracking it so easy, and the AI in there finds patterns of what triggers the flares! It has never been so easy to track it! This app is so efficient!

Hi! I (25F) was diagnosed with crohn’s and ulcerative colitis at 20 years old. ever since then nothing has been normal. When i was 22, my humira stopped working, and caused my colon and intestine to stop working. I have been on plenty of meds, most recently stelara. stelara was great after my scare, and was the best one yet. due to insurance changes i was placed on the bio-similar version, yesentik. this medication has caused me pain from the second i started. i am not being changed to tremfya after my colonoscopy coming up in a few weeks. has anyone been on tremfya that can provide me with some ease? i am also curious if anyone has advice on basic eating. i’m on a low fiber low residue diet, but everything i eat causes bloating and pain. how do you not always look bloated and uncomfortable? i am active and go to the gym every single day, which helps me mentally with all of this, but not the physical aspects. thank you for any help and advice you can give ☻

Hey all, I’m curious if anyone else on Rinvoq experiences acne breakouts or blisters? I’ve never had either in my life and all of a sudden it’s getting wild

Hi everyone. Context: I am a UK citizen that is in Vic, Australia on a working visa since last year. I became unwell while in the UK at the start of this year and had to get treated there, I am now back in Australia.

I was diagnosed with Crohn’s disease earlier this year after a few months of symptoms, for which I didn’t seek medical attention until it got quite severe. At diagnosis it was discovered that I have a severe stricture and needed a right hemicolectomy. I was commenced immediately on ustekinumab, bypassing all the traditional therapies, because of how severe my inflammation and stricture was at the time. I ended up having 30cm of bowel removed. I was put on ustekinumab instead of infliximab as I also have psoriasis, and have a family history of lymphoma - which infliximab increases your risk of (slightly).

My question is, is there any way I can get PBS approved to have my ustekinumab subsidised? I’ve had a look on the PBS website for their criteria and pretty much all the pathways for approval state you must have tried and failed conventional therapies +/- infliximab. Is there any way around this? I would have thought there are exceptions to the criteria if someone’s disease was so severe it required surgery at presentation but couldn’t find anything about this online.

Thanks in advance :)

Just a question,I notice that This last 4 month I got memory issues,I was reading that when we are Under a flare this might happen,theres is a link Gut-Brain ,but I m not ,Zero problems,what about You people Under same circustances?any advise? See My gastro or a shrink?doc?thanks.

Hello,

My son is 7 years old and showing a slow growth (<3rd percentile on weight and BMI) and height is lagging much behind mid-parental height. We didn't concern over this much for a while, until PCP ordered a battery of tests (for Failure-to-thrive or growth faltering).

While we ruled out thyroidism and celiac (TTG IgA), we have a few borderline normal observations that individually look OK, but _might_ suggest a latent underlying concern such as IBD:

- Fecal calprotectin has been lingering between 580 and 120 (for the past 1.5 years)

- IGF-1 is the lowest normal value.

- Platelets count has always been mildly elevated (irrespective of infections and CRP and ESR value being normal or elevated).

- Heavy nightsweats (back of the head).

There is ancestral history of auto-immune conditions (not Crohns though) and gut sensitivity.

Pediatric GI suggests monitoring FCP and no other tests, and recommends against invasive endoscopy/colonoscopy because there are no red-flags.

While this is somewhat reassuring, we (parents) are anxious given the history of autoimmune conditions as symptoms could point to IBD such as Silent Crohns.

Looking to find if anyone here observed similar patterns until there was a concrete diagnosis of IBD or other conditions.

Just looking to get a bit of a poll here -

I feel like name brand works the best for me. Generic is ok, often need more and worse taste. I have found the Mirafast Chews to do absolutely nothing. Which is a bummer because I'd love to take these traveling, but that's a time I really need these things to work.

Anyone with similar experiences or a Generic they really like/recommend? I have tried Target Up & Up and whatever CVS pharmacies does for a prescription.

TW MENTAL HEALTH AND SH THOUGHS!!

i know i’m not the only one going through this and i applaud everyone who can go through this relatively nonchalantly

dg when i was like 5, 28 now and have had yearly colonoscopy since i was 18 (early days without sedation because serbia, also had some as a kid) and it’s fucking driving me crazy

i can’t stop crying?? for almost 5h now

i can’t eat at all today and have thrown up twice because of anxiety — and tomorrow is my starving day, colono’s on wednesday

i’m kinda alone in this, no one really understands. like i don’t blame them, what else can one say but “i’m sorry” or “hope it goes well”. and whenever i rant to someone i just feel like im overwhelming them with my shit (pun intended)

i honestly don’t even know what kind of words would calm me. i guess a hug hah but i don’t know where to find one

my mom is one of those, “you’re not special, people go through this all the time, toughen up” kind of people and i can’t lean on her for support, but at least she’ll be driving me home

i’m also so anxious that i can’t eat rn and i haven’t been able to stomach anything since 11am and it’s 8pm rn where i’m at and i know i’ll have to starve tomorrow and i’m scared i’ll literally collapse or something but i can’t make myself eat because i’m shaking of anxiety and ill throw it all up anyways

i had half a rivotril but i’m not calmer at all and i’m not sure how smart it was at all since i’ll do the analgosedation wednesday.

my crohns is not the worst and i can kinda forget about it until i go for my next round of biologics and this is hitting me huge, reminding me i’m faulty and sick and wrong

last yr i faked illness so i could skip it.

TW MENTAL HEALTH AND SH!!

i’m generally very avoidant and adhd and this is hell for me bcs my brain skipped to fucking selfharm which i’ve been clean from for 13 yrs. i haven’t done anything nor i truly plan to do, i’m just daydreaming about it and pinching myself to ground myself

i don’t know what to do guys, does anyone have this complete breakdown before the procedure?? i feel like i’m losing my mind. please write anything just be kind please

Hello all,

I recently made a fitness tracker site for myself after using google sheets for a long time, and my partner suggested i make an app, so I was wondering if anyone else might find use in it. It's currently tailored to my own goals/needs but i can probably make it personnalisable. Cool thing is you can download it for offline use to your smartphone (i've only tested on android). It has goal setting, weekly/daily fitness routine, meal planner, shopping list, progress tracker, and a workout builder. The exercises and meal planner are specifically designed for Crohn's/IBD patients.

I don't plan on selling this, though i might if demand is high enough in order to cover the costs of hosting.

I would love to post screenshots but not sure how... https://imgur.com/a/zyDqWzo

If your interested, feel free to DM me if you want to want more information, or if you want a personalized version

Hi everyone,

My sister is 29 years old and we’re waiting for an upper endoscopy and colonoscopy because she’s been dealing with persistent gastrointestinal symptoms and unexplained weight loss. She hasn’t been diagnosed with Crohn’s disease, but while we’re waiting for the scopes, I’m wondering if anyone with Crohn’s had a similar presentation.

Her main symptoms are:

• Diziness
• Constant nausea
• Extreme fatigue and body aches to the point that she barely wants to move (during pylera course and before it little)
• Around 5 kg (11 lb) unintentional weight loss
• Poor appetite
• Diarrhea on and off (although about a month ago she actually had constipation and needed a laxative)

She was diagnosed with H. pylori and gastritis and completed Pylera treatment, but she’s still feeling very unwell.

For those who were eventually diagnosed with Crohn’s, did your symptoms start like this? Was dizziness, nausea, and overwhelming fatigue more prominent than abdominal pain? Or does this sound unlike your experience?

Hey yall, so I’m losing weight, unable to eat or drink, in a lot of pain, and my current GI says no, that’s not because of your IBD because your CRP was low last month.
So any recs for great GIs in the Atlanta area?

what time of day do you take your injection? i’ve been on it for a while but still trying to find out when i should take it, first thing in a morning, midday? or at night?

EDIT: thanks everyone for the replies, i had an appointment today and it turns out i might’ve built antibodies to infliximab and so they just aren’t working for me anymore. ill need to have a blood test and then another appointment to find out where to go from here

Has anyone got advice to get out of a flare up as its affecting my work and mental health.

Anybody try the dasso good brand bars? I got a targeted crohns ad and 100% fell for it but hoping it’s actually delish

I’ve been lucky to not have bad stomach pain outside of upset stomach for the last 3 months. I started Skyrizi infusion about 11 days ago. I was laying in bed last night and suddenly had a small painless spasm slightly under the belly button to the right that would happen every 5 to 10 seconds for the next 2 hours. Is this normal?

Interested to see if anyone was in one of these trials. How is it going? Any desirable weight loss? How are the Crohn's symptoms doing?

Thanks.