Hey everyone! I was diagnosed with IBS at 17, and after a few years of trial and error, I managed to get my symptoms under control. But I know that’s not everyone’s story—especially for folks with chronic IBS or IBD (like Crohn’s or Ulcerative Colitis), it can be a daily battle. I’m here because I’m using my tech background to develop a device/app that could help all of us better manage gut health.

Right now, I’m envisioning something that tracks:

1. Stool Frequency & Consistency (Bristol Stool Chart-style).
2. Food Intake (to see if specific foods correlate with symptoms).
3. Stool Analysis/Detection (not a full lab test, of course, but early visual cues if something’s off—like potential blood).
4. Symptom/Trigger Tracking (stress, sleep, hydration, medications, supplements).

But I want to hear from you—the people who truly understand the day-to-day struggles of IBS and IBD:

• What features or data points would you find most valuable in a stool-tracking app/device?
• Which aspects of IBS/IBD management are the biggest headaches? (E.g., meal tracking, flare-up prediction, medication reminders, etc.)
• If you track your symptoms now, how do you do it, and what do you like/dislike about that method?
• What would help make consistent tracking easier rather than feeling like a chore?

I really want to design something that’s useful and easy to integrate into everyday life—for everyone dealing with IBS or IBD. I know my personal experience might not match yours, so I’d love any feedback or ideas you have.

Thanks so much for reading, and for your help in shaping this project!

— A (former IBS-ridden) tech guy hoping to make life a bit easier for all of us.

Does anyone have bad middle to lower back pain on the right side??? I have it constantly! I don’t know if it’s just a bad back or what!

Hey guys. I'm a mom to an amazing 10 year old boy who was just diagnosed with IBD this past December. In November he was just finishing his first season of little league baseball. He was so full of energy and life. Everything is so different now and my heart is breaking for him.

I'm not sure if this post is a vent or a plea for hope.

His symptoms escalated in January. Things got bad fast. He was tired all the time from the blood loss. Going 10 plus times a day and losing blood every time. He lost 10 lbs since November and was already very skinny. He started prednisone and for one day I saw his appetite return and felt some hope. Then he got the flu. We spent a week in the hospital, started nightly enemas and an all liquid diet (he's only eating nutrition shakes right now). They gave him an iron infusion too. When we left the hospital he could barely make it to the car without stopping to rest.

The last 3 weeks has been the hardest thing he's gone through and the hardest for me to watch. We're meeting with the Doctor on Wednesday to talk about starting biologics.

How soon did you find the right one when you started the process? How soon did you get relief?

I'm so nervous to start what seems to be a lifelong medication for a 10 year old boy. It's so hard to feel confident in any decision for him. I just know I want relief for him. I want to see him smile and drive me crazy with his usual energy.

I know one day we'll be encouraging someone new to this disease and passing on words of hope but today I grieve and cry.

If you have a bulky stool, have you had a ton of pain in your gut after going but not before going? The pain lasts for hours after having a bowel movement including in my back. Not asking for a diagnosis as I know what’s going on, but curious if this happens to you all

Having a colonoscopy in like a day and I'm already eating more liquid foods (diagnosed colitis five years ago btw). Recently found out that I have this thing when I stand up my vision turns black. I am curious why? Has anyone had this before? It happens every time I go on prep btw. Have had it before the prep too but when I'm on it it's way stronger than usual.

In May. It was 7. .now it's 13.9.. should I be concerned

Since childhood I've been a diaphragmatic breather. In the last six months I got very sick (severe insomnia, gastric issues, anxiety) and I found my body struggling to breathe from my diaphragm. I've been under a lot of stress lately because of my health (including IBD, Gastritis, SIBO). It feels very tense and when I now force breathe from my diaphragm my body moves up and down i.e. rather than the abdomen moving up and down. I feel the diaphragm hitting resistance and it's actually very uncomfortable. The body's default seems to be chest breathing which is so uncomfortable and makes me so anxious. Sometimes hyperventilating at 40 breaths a minute! I've never chest breathed all my life and so those muscles have not been used for nearly 50 years of breathing. It's excruciating. I don't understand how decades of relaxed and automatic/habitual diaphragmatic breathing can just stop. When I stand my abdomen feels so bloated, tight, uncomfortable and painful to breathe (like the muscles of the abdomen hurt when they expand). I'm not sure how what I can do to resolve this? My GI says GI issues won't cause this degree of breathlessness. Can stress/anxiety cause a severe feeling of breathlessness? I may be developing a breathing dysfunction because of this. Just walking leaves me very breathless.

Everytime I eat anything that has any cheese or carbs I have poops like this. No pain or discomfort but this is what it looks like.

I, 22F, haven’t done a solid stool since the beginning of March 2024. Every single time it has been diarrhoea, not even nearly a normal poo. I go to the toilet between 3-6 times a day, sometimes there’s visible blood, sometimes a red flakey substance, sometimes there’s mucus. Sometimes it’s really dark in colour, sometimes more normal in colour. I have changed my diet many times within the year, no change. I started getting cramping and sometimes unbearable pain to the point i’ve been on the phone to 111 because i couldn’t move and was in the worst pain when i usually have such a high tolerance. I’ve had many blood tests, all come back absolutely fine. I had a colonoscopy, it came back absolutely fine. Just before christmas i had a bile malabsorption test (SeHCAT scan), results all came back fine. The doctors told me throughout this it’s just IBS, but i believe there is more to it. I’ve been prescribed with Amitriptyline to help the pain and it honestly drains you trying to push for more. Could this just be IBS? or do i need to keep pushing?

Any help is much appreciated, thank you

Hi all, I was given naproxen a couple of months ago which caused a flare up of MC. I was on loperamide for several weeks which helped a little, so my GP gave me budenofalk/budenoside. I have a history of severe mental illness and today after 10 days on the steroids I was raging and agitated. This is how my mental health crises start.

Called the out of hours GP and I have Lorazepam to ease the agitation. He said to reduce the dose of steroids and call my own GP after the weekend.

I would rather shit water than have an episode of mental illness. The episodes are severe, can last month's and are very dangerous for me.

My question is, are there any alternatives to steroids and loperamide? Can this flare up just disappear on its own?

I’ve had symptoms since then, and tested positive December the 28th. I can’t eat without pain in my upper gut and back, and oddly no diarrhea but it’s more so thin stools. My doctor doesn’t seem to care. It’s Enteropathogenic ecoli. I’ve never tested positive via stool test until December. No one in my life cares about what I’m going through except a stranger via messenger on Reddit. I’m in bed all day, I have the worst headaches 247 and brain fog. I eat and I get worsening pain in my face, my gut and I can’t stay awake, I have to sleep and I sleep for hours, even if I’ve already slept enough. How can someone have this ecoli for this long with symptoms? And twice I got norovirus with it. I’ve taken probiotics and they don’t do anything, I can’t afford any more medicine.

I couldn’t take the antibiotics they gave me, I react to almost all of them. I can maybe take liquid antibiotics as they’re easier on my gut but they don’t have liquid cipro. I’ve been suicidal because of the pain. No one seems to give a s___ and I feel isolated and alone with this.

Is it standard to test for NOD2 mutation?

I've written plenty of interview requests but never in this kind of form, so here goes, haha.

My name is Azalea and I'm a fourth-year journalism student at Toronto Metropolitan University (TMU) in Ontario, Canada, and am working on a final project of sorts for one of my courses. I've chosen to do it on microplastics and how they are connected to autoimmune diseases, but, more specifically, to IBD.

In order to tell this story, I will be using a long-form feature format and podcast-like interviews. I am relying on a mix of research (six main research questions to be exact) as well as the opinions and thoughts of guest experts, and, of course, the opinions and thoughts of those who have a type of IBD, to make up the story's content.

I would like to schedule an interview with someone where you can tell me about your experience with your IBD, how you think you will be affected in the long term, and whether or not you think microplastics have had any impact at all on your health and/or your IBD diagnosis. You don't need to be in a specific age range or a specific gender, or even come from a specific region/country. As long as you have been living with your IBD for between 6 months to a year, I am happy to speak with you.

The interview could take the form of a phone call or a Zoom meeting (I am open, always, to whatever makes my sources more comfortable), and would be around 30 to 45 minutes. I would also like to be as transparent as possible and let you know that I would like to record the meeting and would be using the interview in my final project, which may be posted onto a TMU journalism course-specific website---no video, only audio for this. I would be recording your voice and mine and embedding that audio clip into my story and potentially onto the TMU journalism course-specific website.

I can't offer you any monetary compensation (I am, indeed, a "broke college student"), the only thing I can ask for is some of your time and your trust in me as a student journalist.

I know that it may be difficult to take me at my word---there is lots of mistrust with the media right now and I think that when some people hear the word "journalist," even "student journalist" they instinctively cringe because they are wary or because they do not like the idea of someone "in the media" trying to pry into their life.

But I am not prying. I will continue to be transparent---I was diagnosed with Crohn's Disease in March of 2023 and have spent a fair amount of time wondering about the connection between microplastics and my own health (you have to be at least a little bit curious to be a journalist after all). When I enrolled in this course and found out that we had an entire semester to focus on one specific story or topic, my mind immediately went to this one, not only because of how personal it is to me but also because I wish to better understand it. There is no cure for Crohn's Disease and there is no known cause for it either. It's something that I will live with for the rest of my life, and so I need to know more about it, almost everything I can. That includes this specific subset of research.

And I think it's a combination of all those factors, but ultimately I know that if I don't tell this story, if I don't write about this topic, it will always have way too much power over me. Once I face it and bring this story to life, then maybe I can think about the subject without crying or feeling like my life is over.

Sorry if that was too vulnerable! I'm not telling you this to get an emotional reaction out of you; I'm telling you because I want you to know that I understand, at least a little bit.

You don't have to do anything, and you don't have to respond if you don't want to. The last thing I have ever wanted is to make anyone feel like they have to do anything for me, especially when it comes to discussions around experiences with IBD. I'll be honest---it's hard for me to judge the reaction of a group of people I have had little to no interaction with, but this is my formal request:

If you are at all interested in this subject or know someone who is, and are willing to speak with me more in-depth for an interview, please let me know. If you have any further questions about me, my research, or what your role would entail, also please just let me know.

You don't have to tell me your real name, I only ask that you tell me about your real experiences. I can tell you about mine.

Thank you in advance ♥︎

I can usually taste saline flushes - it's like a "smell" or "taste" in the back of my nose, nurses say it's common - but I've never tasted the actual biologic before! I've been on Remicade and Inflectra, but they didn't have a taste.

Has anyone else noticed Avsola having a strong taste?

I have been diagnosed with microscopic colitis and undergoing treatment for it with budesonide.

Since the start of all this from 3 months ago, I have had continuous pain in my stomach (lower abdomen and right above my belly button). Once I started on the steroids the pain only worsened. I addressed this with my doctor who advised me that she spoke to a different GI than my own and they told her that microscopic colitis is not supposed to cause any pain and that I likely have IBS in conjunction with MC. This is what is likely causing my abdominal pain, not the MC.

Has anyone been told the same that MC doesn’t cause pain????

I’m a federal employee that has been working a hybrid work schedule for a while and Trump has issued an EO for a RTO mandate. I worked full time in person before and I was absolutely miserable. I spent more time in the bathroom instead of my office. Anyway, I didn’t get it put into my employment agreement for permanent telework, because they told me they would never return to the office full time. I’m now going to try to start the reasonable accommodations process to get a hybrid work schedule. That leads me to the question:

Has anyone had success in getting reasonable accommodations for their IBD? I haven’t seen my gastro in about two years, because honestly she was not great. I have all of my medical records, CT results with blood work showing inflammation markers etc, and colonoscopy reports that show Colitis, etc. My gastro put in there that the official diagnosis was Colitis and IBS, however, she also wrote that although those were the official diagnoses that I was essentially “fine” in my records no matter how much I told her I was suffering in my day to day life and she wrote it off as anxiety making it all worse. Those who have gotten reasonable accommodations, did your gastro have to be the one to submit the request? Or has anyone given their records to their PCP instead and gotten the paperwork completed successfully? How hard was the process? Wondering if I’m going to get stuck having to find another gastro to get another colonoscopy to get the same diagnoses again to be able to get the paperwork completed.

New to the group… long post ! 29Yo(F) My symptoms started 7 years ago.. hurt to pass BM and blood and mucus in stools. Minimal stomach pains. Doctor ordered blood tests and calproctein test. Blood test showed B12 and folic deficiency and CP was in the 200’s. Ordered sigmoidoscopy. Showed hemoriods.. life went on with on and off symptoms but pain in BM persisted. 2020 I was starting to have had enough - repeat - Cp around 200 - another sigmoidoscopy- clear. My metal health was declining and I went back to the doctors in 2024, increasing symptoms of constipation. Funny coloured BM, some stomach pains as well as the previous symptoms as before. CP of 263. Gastro team finally ordered a full colonoscopy with suspected mild chrons.. Finally ! Then I fell pregnant and the majority of the symptoms went away. Healthy pregnancy and baby, 2 months later my symptoms are back and worse than ever. I’m getting stomach cramping before I go, stomach cramping when I eat. Luckily I have the colonoscopy next Monday however I can’t fight the feeling of what effect this has had on my body in over the past 7 years and whilst I have come to terms with the fact that I may possibly have IBD( Will probably still be upset if I hear the words) I am petrified of the dreaded CC. So much so that I’m even gas lighting myself that my symptoms didn’t go during pregnancy. I know what will be will be but it makes it really hard to even contemplate such when I now have a baby. Just looking for some words of encouragement ❤️

We’re officially on the cancer pathway, wish me the best of luck guys. I’ve been bumped up to priority one and should have an appointment within the next couple of weeks.

If not bowel cancer, highly likely to be IBD. Absolutely bricking it.

Sharing my story because I am becoming really frustrated and am looking for advice. I am a 41 yo female for background.

About a month ago I started seeing a lot of mucus in my stool after a bout of watery diarrhea. The mucus was in every type of stool - hard, soft, diarrhea, etc. No blood however, no fevers, no abdominal pain. I started eating a bland diet to see if it would go away.

I decided to go to the doctor, who ordered blood tests (CBC, liver, pancreas), all that came back normal. I did a few stool tests - parasites, viral - all came back normal. I did a fecal calprotectin test, it was <30.

Over the last week my poo has been all over the place - one bout of super watery diarrhea after eating brown rice and a few other things. The past few days I’ve passed a ton (like several tablespoons) of bright, yellow mucus with diarrhea (I think set off by eating probiotic granola that had chia seeds as that’s what I kept pooping out), then even when things calm down there’s loose stool with white fluffy mucus, etc. This was after cramps, and now I have slight abdominal tenderness.

I was diagnosed with IBS in my early adulthood and have had cramping here and there over the years and am overly sensitive to food….but this current episode has me worried. I’ve been a non stop mucus factory for a month, and now diarrhea….ive never had these types of symptoms before and am worried it could be something like ulcerative colitis.

Anyways I know a colonoscopy is the way that they would diagnose IBD, however it feels like my doc and gastro have been dragging their feet because my labs show everything is fine, that I don’t have any inflammation, and my symptoms match IBS. Meanwhile I can’t eat anything with any bit of fiber it seems - or wheat, or vegetables, etc - without a massive explosion of diarrhea and mucus.

If it is something like ulcerative colitis, if I don’t get treatment soon and this continues, what could happen? Could this just go on and on? Are my intestines becoming damaged?

Hi everyone,

I’m a gastroenterology fellow and a PhD student researching inflammatory bowel disease (IBD). I have prior endoscopy experience, and I’m looking for a short-term hands-on training opportunity this March. My main interests are IBD and interventional endoscopy.

Ideally, I’d like to find an opportunity in Europe, but I’m open to options worldwide. If you know of any observerships, short fellowships, or hands-on courses, I’d really appreciate any recommendations.

Thanks in advance for your help!

Ozone insufflation worked for me for 23 months until I did my colonoscopy prep, but I’m now getting it back under control- again with ozone. I have microscopic colitis, and Budesonide 9 mg was off and on. It helped but not like this. I really encourage y’all to google it and explore. Spain and Italy are where people are going, but a holistic doctor- mine’s an oncologist and likes to help people- can help. Just be sure to explore this as an option.

I 23F am getting a lot of testing done coming up. Will possibly need my gallbladder taken out and am in the process of getting worked up for IBD. I'm getting laid off in a few weeks and am trying to find a new job.

I'll start over with zero sick time or PTO. But I need these tests done :(

I have the option of going on unemployment after the lay off goes into effect. I'm wondering if I should take the unemployment for a month or two so I can get my health squared away (I have my dad's health insurance so thats not a worry thank goodness) and then find another job.

I would just hate to find another job, get hired, and then need to miss a bunch of work for tests and procedures.

Any advice?

TIA

Apologies for the long post, but I’m at my wit’s end—I've been in pain and hae been feeling sick for months with no clear diagnosis.

Health Summary

• Spring 2023: Routine colonoscopy was normal.
• December 2023: Tested positive for COVID-19 (at-home test), along with my entire household. Symptoms lasted a few days, then improved. Tested negative after a week. Did not see a doctor.
• July 2024: Began experiencing upper left abdominal pain, initially assumed to be heartburn. It was intermittent at first but gradually became more frequent and severe, often accompanied by nausea and fatigue.In hindsight, I also noticed increasing brain fog and exhaustion, making work feel more challenging despite no changes in my job.
• September 2024: Saw my PCP.Tests: Abdominal ultrasound & updated bloodworkBloodwork was normalUltrasound Findings: Kidney stones, but I’ve had them for years without abdominal pain, so I was skeptical they were the cause.
• October 2024:CT Urogram: Confirmed kidney stones but no obstruction.Urology Consultation: Ruled out any urological cause.Gastroenterology Referral: Ordered fecal calprotectin & fecal occult blood tests—both positive with calprotectin level >1100Treatment: Started on Prilosec & Pepcid AC. Recommended upper endoscopy.
• November 2024:Severe abdominal pain & nausea sent me to the ER. I felt like I was shot in the stomach with a harpoon.Hospital Abdominal CT scan: Unremarkable.Upper Endoscopy: Normal. Biopsies negative for celiac disease.Next Step: Repeat colonoscopy ordered.
• January 2025:Repeat Colonoscopy: Normal. Biopsies for microscopic colitis are still pending.Updated blood test was normal

Current Symptoms & Findings

✅ Symptoms:

• Persistent upper left abdominal pain
• Chronic fatigue
• Nausea & loss of appetite
• Feeling feverish despite normal temperature
• Brain fog & difficulty concentrating
• Occasional vertigo
• Diet makes no difference in symptoms

✅ Test Results:

• Normal: Abdominal ultrasound, CT scans (abdomen & urological), upper endoscopy, colonoscopy
• Positive: Fecal calprotectin (>1100) & fecal occult blood
• Negative: Celiac disease
• Bowel movements: Normal
• Bloodwork: Normal

Given everything, I’ve started researching Long COVID and Leaky Gut Syndrome as potential explanations. If anyone has experience with similar symptoms or insights, I’d greatly appreciate your thoughts.

Over the last couple of years I’ve had a few visible instances of blood in stools, not on paper but visibly within my stools. Lots of mucus. Over the last couple of months I’ve had a real change in bowel habits and a stitch like pain on my right hand side.

NHS doctors have done all the tests, FIT and calprotectin, both negative, all bloods great. They have suggested IBS but I know blood in stool is not IBS usually? My Mum was diagnosed with crohns later in life.

Obviously I am relieved somewhat, but also not sure where to go next? Any thoughts/advice? I am pretty sure blood in stools is not to be ignored.

Sorry if wrong forum but not sure where to post for advice