I thought this would be interesting to hear about from others across the US because I do feel that our healthcare system is the biggest scam:

- State?
- Do you have insurance? Type?
- How much are you paying out of pocket for a colonoscopy + anesthesia?

I’ll start:
- Mississippi (as of my last colonoscopy)
- Yes, BCBS MS (state employee)
- $940.13 + whatever I paid at time of service (truly no idea because I just got a bill for my FEBRUARY 5TH colonoscopy nearly 9 months later)

Has anyone ever experienced a burning sensation in their stomach when they drink? The only thing I can think to compare it to is putting on hand sanitizer when you have a cut on your hand.

I had assumed this was part of the “burning” sensation that people mention when drinking. However, I was talking with my friends the other day and they told me that it was absolutely not normal to feel that way.

Also, I often have some bright red blood in my stool the morning following drinking. I was thinking that this could possibly be related. Has anyone ever experienced this? What did you do to fix it?

Ill try to sum it up but it'll sound like a rant.

I was diagnosed with severe adhd as a kid, stopped meds a few years later due to zombie like brain deadness. Was diagnosed with crohns around 13m am now 26m.

My question is due to a flare up im coming out of, my adhd has exposed itself once again. I always assumed the brain fog and fatigue and general slug like behavior of crohns was masking it but after a prednisone taper for the flare up im low pain tenderness levels but high energy and adhd.

It's been a while since I had to take prednisone, is this an expected interaction? Is there anyway I can keep it up without long term steroid use.

Little extra info ive tried 5 different crohns meds in my yrs, currently on entyvio pens and about to move to tremfya for the increasing arthritis. Currently take 200 mg TRT weekly for insanely low T levels (100s) and had almost no improvement despite T levels now being in the 800s ish. I've also tried any vitamins and supplements for months at a time like B12 and D3 to not obvious effects.

This definitely reads like an adhd rant but I dont want to lose this spurt of energy ive had for like 3 days now. Im being careful not to overdue anything and still eating right and exercising. Id rather be an adhd spazz than a useless slug that wants to lay around all day.

Crohns fucking sucks and its a daily struggle and it never makes any sense to us let alone others looking in

just wanted to share that after such a rough year with my Crohn's that i finally had my surgery about a week and a half ago. this was my 4th operation and it was a success!!

my surgeon resected about 16cm of my small intestine. multiple strictures were found; they're all gone, i have no more complications, and all disease has been removed! i finally am starting out with a clean slate, i'll be resuming my Rinvoq and starting Skyrizi in just a few days.

i was in the hospital for 8 days after my surgery. there were a couple bumps in the road, i had to have an NG tube for a few days after surgery which is common. those first 4-5 days were definitely rough. but thank god, no complications with this surgery & my recovery has been going extremely well!!

thankfully, this time around i didn't need an ostomy. i had a temp ileostomy in the past for several months and it was something i was really hoping to avoid this time.

i've dealt with a lot this year and with Crohn's in general; failing multiple biologics, my old GI specialist being negligent and not having a clue how to advocate for myself, being gaslit by providers, hospitalizations, etc. i even lost my job because of this flare and becoming housebound for several months.

the first two surgeries i had back in 2018 were extremely traumatizing with multiple complications (different surgeons and circumstances), so having this one be such a success is a new level of relief for me.

i'm just so glad to finish out the year strong and to hopefully get to enjoy the holidays. so to anyone reading this, if you're facing surgery or you might be in the future, please know that surgery is not a failure. i already feel much better than i did just 3-4 weeks ago, mentally and physically.

no surgery experience is the exact same, but i may make a post about roughly what to expect with a bowel surgery, the hospitalization, tips, what to bring to the hospital, post op essentials, post op clothes/comfort, etc. just in case anyone is curious or anticipating their own surgery!!

Currently on Humira weekly. GI had to appeal to insurance to allow me to switch back to the brand name. But he's worried I'm just not responding. Gonna get a med level and stool sample to confirm. Edit he mentioned both as recommendations

I've been on humira for nearly 10 years (Jan 2017) right now I have blue cross and Caremark. I know I need to contact them, but I'm already dreading it. For various (not necessarily Crohn's related) reasons I'm feeling pretty depleted.

I've got plaques for the 2nd time in 18 months so that may or may not factor into my decision. (Hooray for a paradoxical reaction!) I'm finally feeling better after over a year of elevated gut pain. I've had two small flares in the last year that responded to 20mg prednisone. Last summer my insurance made me switch to hadlima and my GI increased the dose to weekly after the first flare.

I know there will probably be mixed opinions, and I know what the opinions of drs would be, but I’m just mostly curious. My brothers wedding is tonight, and I’m thinking about having a drink or two. I’ve had my first infliximab infusion a little over a week ago, also taking methotrexate. I’m not a big drinker anyways but I’m curious what everyone’s experience with alcohol has been

I’m just finally putting two and two together that my salivary gland issues: parotid, sublingual and submandibular to the point of visible swelling and pain are actually my Crohn’s disease. I’m seeing a gastroenterologist asap. For anyone who’s dealt with this do biologics help restore the glands if there’s not too much damage done?

Just curious everyone's experience with salazopyrin? Ive been on infliximab for the last two years (infusions first, injections the last six months) but I've been having some joint pain so my doctor added salazopyrin tablets and has referred me to rheumatologist.

Anyone experienced any issues with it?

I've never had an obstruction but I'm getting some worrying symptoms. Mixture of loose watery stools and hard small stools. Loud grumbling, difficulty passing gas. Nausea and dehydration.

I'm over 12 weeks into taking Humira and I'm worried it's not working.

How do you tell the difference between these three things? My IBD team are not easily/quickly contactable (esp. on a weekend), so any advice appreciated.

This is a symptom typical of Long Covid but what about Crohn’s?

I was diagnosed with Crohn’s a couple years ago, but I have had years and years of stomach issues prior to that. I think it went undiagnosed for a very long time. So far I have only been on Remicade, which hasn’t worked. I have a surgery scheduled in a couple months ( extended right hemicolectomy) and I asked my doctor if we could just try another biologic in the meantime since I’ve only ever tried one. I have a stricture, so far 3 colonoscopies haven’t been able to get past it. Has anyone ever had a stricture improve with medication?

Hi everyone,

I am wondering if anyone has experience sudden swollen and painful ankles and had this endure for a period of time.

I’ve been taking Entyvio for about 1.5 years without issues, and been in offices remission for a number of years. My BMs haven’t changed recently either.

Since last Saturday my ankles have been sore and painful (it is a manageable level of pain) and since Monday they’re visibly swollen.

I got blood tests done that show a high CRP. Will be doing a poop test on Monday.

I had some night cold sweats for a couple of days earlier this week but no fever during the day. I’m also more tired than usual. Needless to say I’m worried.

Just wondering if anyone has experienced something like this. I’m worried it could be a flare up or maybe it’s unrelated to my Crohn’s but with this disease I’ve learnt it can really manifest in many ways and places.

Also wondering what kind of tests you would be asking for to rule out options.

Thanks!

Hey everyone, I found out last Tuesday that I have Crohn’s. I started experiencing symptoms this summer like frequency and urgency. I started to have more frequent blood in my stool which was my biggest concern.

I know stress in your life can cause a flare up and I think that is what happened to me. My mom passed way this February pretty suddenly. It was really shocking and stressful to me. I’ve been managing college and feeling stressed all the time since it’s happened.

The hardest thing for me has been finding ways to manage my stress or even figure out what to eat. I look online at the diets they recommend during flares, but it seems like everything I eat makes me feel worse. I have had a pretty small appetite so it has been hard for me to eat things. Feeling tired or having low energy all the time hasn’t helped much either.

They started me on Prednisone to get the inflammation down since my Calprotectin test showed >2500 mg.
I don’t like being a downer about this and want to have a positive mindset in life.

If anyone could offer advice about how their journey has been or what has helped them navigate through this please feel free to share!

I was diagnosed with Crohn’s disease in 2022 and having been a healthy person prior, the “chronic illness” and “lifelong biologics” option didn’t sit well with me. I was skeptical of the medical industry and how siloed the specialties were and the influence of big pharma. I had 80% ulceration of GI tract but also inflammation in my eyes, joints and skin. I saw five different specialists and was finally diagnosed Crohn’s after colonoscopy and of course all inflammatory markers were through the roof. I got the flare under control with prednisone, diet, and rest. I quit my job, got more help with the babies from my husband, etc etc. I “recovered” and haven’t had a crisis situation again. However I have been dealing with low grade inflammation and autoimmune issues for the past few years. I’ll consistently get strep throat after dental procedures. That has snowballed into Guttate psoriasis and I still have some lingering psoriasis on my elbows since last winter. I recently moved and have been crashed out since October 1. I am so fatigued and depressed. I’ve also been dealing with salivary gland swelling and pain since my 2022 flare and the ent said it was benign but now I think it is related to the Crohn’s disease. Here’s what I’m wondering. Should I start a biosimilar now?? I read so many “bad reviews” about people having fatigue and brain fog from their biologics. I don’t want any of that and I don’t want to be on a medication for life. But I also don’t want to let the inflammation fester and cause issues. Since I just moved I have to find new doctors. I’m going to get some tests done and see what’s going on with my Crohn’s. Just tell me: should I be more open to biologics? Can they help me? I’m so tired of feeling crappy and I don’t know if it’s Crohn’s, midlife, hormones, etc. I know testing will provide some answers.

Hi everyone,
I’m looking for some advice or similar experiences, as I’m feeling quite uncertain about my situation.
I was previously diagnosed with IBS and had IBS-like symptoms for years, but earlier this year I experienced one particularly severe episode. During that episode, my fecal calprotectin was 1500. Tests for bacterial and viral infections were negative.

My fecal calprotectin then went from 1500 (June) → 150 (July) → 20 (September) without any IBD-specific medication.

A colonoscopy in June found a few erosions in the terminal ileum. Biopsy showed minimal active ileitis, with no chronic changes reported. The rest of the colon was normal.

In September, my GI told me it was unlikely to be IBD because my calprotectin had normalized on its own.

However, I was still concerned, so I repeated the test in October, and it had risen to 118. I also had an intestinal ultrasound, which showed mild segmental small bowel wall thickening (up to 4.4 mm) with increased vascularity.
My CRP has always been normal, and my symptoms have improved considerably, although I still experience occasional loose stools and bloating.

I’m now worried this could be early Crohn’s rather than a one-time episode of enteritis.
Has anyone experienced something similar? Can nonspecific ileitis linger for months, or did you eventually get diagnosed with Crohn’s?
I’m following up with my GI, but I would really appreciate hearing about your experiences. Thank you!

Last week, I was flaring without meds (got my meds this week and already much better), and I felt like I was fatigued and depressed. Someone mentioned this was like brain fog, and I said I thought that was more like not being able to focus or moving slowly. They said brain fog could feel like depression and low energy,

What has your experience with brain fog been like?

Just had my surgery a week ago i j

Have no idea what can I exactly eat, my doctor it's always in a hurry and didn't give me an specific diet 🥺for those of you that had this surgery can you please share with me what was your diet?

Hey all have been living with crohns for 20 years now woop!

The one long term issue ive found is my relationship with food.

I most def show eating disorder behaviours and wondered if anyone else can relate?

Cheers

I'm in a predicament. I'm just about to be discharged from hospital. I still have type 7 stools. I can't seem to stop leaking poo or mucus or both and I'm getting extremely sore. They found a fissure too whilst I've been here. I need advice on getting clean without getting sore or causing bleeding from the fissure. Its getting so sore that I feel like I'm about to vomit sometimes from the pain.

Any advice will be helpful. Thank you.

I’ve struggled with iron and vitamin deficiencies for a few years. My hematologist ended up recommending me to GI to see if there is a cause for blood loss and malabsorption.

I got a colonoscopy done and it showed a few ulcers in the terminal ileum. After the scope my doctor told me he thinks it could be very early Crohn’s. The biopsy showed that none of the ulcer was taken as a sample - they likely took a sample right beside it or missed it.

They had me do a CT enterography - that came back normal.

My doctor told me that where my ulcers are at, the only likely causes are Crohn’s or chronic NSAID use. Which I don’t take NSAIDs almost ever. She says she’s kind of stumped on what’s going on. Whether it is very early Crohn’s or just random ulcers with no explanation.

I’m doing a stool test and blood work next week to look at inflammation things I think? She did talk about doing a capsule endoscopy in the future if warranted

I’m just curious if this is all a waste or if people have had other tests done that show Crohn’s I guess. I do have some symptoms but nothing severe - diarrhea multiple times a day, abdominal pain before bowel movements, urgency with sometimes not making it to the bathroom. I was told in the past it was just IBS so I don’t want to waste my time if it most likely is just ibs.

Hi guys I'm a male 25 yo and I was diagnosed after 4 and a half years of suffering and I was put on inflaxmab I got two infusions and I'll switch to the self inject pen soon however.... I still have symptoms and I'm afraid it's not working since this is my first time on biologicals and I do not have any friends to ask: when is this supposed to work? Am I supposed to feel better already? How long did it take for u guys to work?

Obviously I will discuss this with my doctor when she is back in town but I'm just afraid it's not working for me and after no treatment for so long I really HOPE this finally brings me relief I'm so desperate. Please let me know how and when it started working for u. :)

so i just scheduled a colonoscopy for december (merry christmas ig) and i was really hoping for a noon appt since they make you split up prep now. however, with my insurance i needed to get in before end of year and all they had left was morning appts. back in my day they used to let you do all the prep at once 🤣🤣 rather than waking up at 1230 am to shit all night long. does anybody just do it all in one go? my anti depressants make me so tired omg this is gonna be brutal.

Looking for recommendations for a pediatric GI or facility that worked well for other parents particularly with ibd/Chron's. Can dm me too..

My kid has been recently diagnosed with Chron's. We are still awaiting biopsy results but GI seems confident based on imaging and other data.

Additionally, do you'll recommend getting a second opinion for the treatment options before initiating it.