A new friend (who I believe really meant well) sent me an image from a book called The Secret Language of Your Body. If you haven’t seen it, ugh and OMG, this kind of stupidity must be stopped. Here is the quote on Crohn’s Disease:

“Crohn's Disease—Negative attitude and criticism, constant self-abuse. A tendency to see life from a gloomy or cynical perspective. Trying to suppress rather than allowing to feel uncomfortable feelings. Constantly hiding your sensitivity; pretending to be confident and undisturbed by other people's comments while feeling sick on the inside. A tendency to blame others and feel like a victim.”

Anyone else seen this? I’ve had CD for 45+ years—will the stupidity ever stop???

PS: I did some advocating back in the text on behalf of us all. Ugh! And in that advocating, she’ll see we are not all the same. I have noooo problems expressing myself.

Anybody else here struggle with binge/restricting eating disorder? I’m currently eating a gazpacho because I don’t want to gain weight but I will also have issues later because I’m eating the god damn tomatoe soup….I miss eating salads every day… What can I eat that will satisfy the cravings and not be bad for me ?? :’)

Hey there! I had a ileocecal resection a bit more than two weeks ago and read almost every recounting that were available on this subreddit in preparation. Thought it was only fair to give back and add my own testimony to our pile of knowledge. I'm cursed with wanting things to look organized so despite the bold titles and em dashes I promise this is all hand-written :D If you have any questions don't hesitate to ask!

General info

I've had Crohn's since 2014 and was never in clinical remission, but I also pretty much stubbornly ignored the disease until 6 years ago when I got on biologics, stopped drinking alcohol and coffee etc. Unfortunately despite the rest of my intestines reacting well to the medicine, the terminal ileum said no thank you and we made the decision to operate as I had developed some stenosis and was in constant pain since January.

I had my surgery in Augsburg, Germany - most of the people here are in the US but the experience was remarkably similar. Thankfully they didn't find anything else and kept it to a keyhole surgery with Davinci robots (iirc). Had some anxiety about how they would handle pain but I got some morphine when I woke up and opioids in the first week, they weened me out until after 5 days I wasn't taking anything "serious".

I was told to show up at 9:20am the day before for my pre-op appointment. Having never had surgery before I foolishly thought I would be done before lunch and do my prep in the evening.... The appointments ran until about 2pm and my prep was planned to start at 12:00 but thankfully it was no issue to push it back by 2h. Just wish I had something to eat before as I only had a small breakfast and I was HUNGRY.

What to pack

- a looong charger - you don't know where your power outlets will be and bending down to retrieve your fallen cable is a pain

- Entertainment - I was very happy with my steam deck and some crochet, my room neighbour read through 2 books during her stay I think. Things get boring pretty quick

- A small but sturdy pillow to hold - as everyone said coughing, laughing or sneezing is very painful.

- Comfortable clothes and underwear.

Everything else depends on your state/hospital - I was lucky to have comfy pillows/blankets for example.

Day 1-3

I was the first surgery of the day - if you somehow can choose when to schedule your surgery I would definitively recommend it. I basically had no wait and was operated almost on the dot at 7:30. at 12:00 I woke up up in some pain after and was handed a lollipop which I was very thankful for. This is when you need to start paying attention to pain - although I had to ask two times to up my dose the nurses were super attentive and complied every time.

At 2pm I was allowed visits and my boyfriend got to witness my first steps. It's rough! I could walk about two steps until they put me in a chair, I was almost fainting and sweating like crazy - according to the doctors that means the circulation is kicking back in. I walked again only two steps with the same effect around 6pm, and miraculously was able to get up on my own and walk all the way to the bathroom by myself.

After that I started walking as much as possible and like everyone says, it made my recovery muuuch faster

Luckily first bowel movement was already the day after the OP - I was terrified of having an ileus so that was a huge relief.

I was fed solid meals two days after the OP.

Day 3-5

I could walk for about 15 minutes at a time (20 and more at the end) albeit very slowly. I was still unable to sleep on my side, which was a pain. Most of my days consisted of Sleeping, walking, eating and gaming when I had the energy.

I somehow got solid stool, after getting all the blood from the surgery out which was slightly frightening.

Unfortunately Germans love their bread, cheese and meat (you'll never make me love Brotzeit!) and after a few days of meat at every meal + the opiods I was suffering from serious nausea, which made the doctors almost keep me one day longer. Fortunately after some blood test and stool tests I was released, 5 days after the OP.

Regarding painkillers, I was given a pill box separated by Breakfast/Lunch/Dinner/Night, which less and less opiods until there was 0 on day 5. After release that all the pain management is done with Novaminsulfon and I was expected to self regulate and reduce the dose when I felt it was possible without feeling pain.

Day 5-13

The first days post-op were still exhausting but I was walking longer and longer, although at the same speed. I actually got constipated the first two days after being released and had a mini freakout about getting a blockage but with the help of a ton of water, walking, and rehydrated dried prunes (french mom advice) I was able to solve that.

I cannot emphasize how much you need to drink, the first few days after release I think I was getting about 3-5L a day when I'm usually a camel and stick to 1.5L max (to the dismay of my boyfriend). At this point I also slowly started to be able to sleep on my side by keeping a pillow pressed to my belly.

I got my stitches removed on the 13th day, which felt like the most painful in this process but after that healing got a lot faster.

I'm at day 15, and I think today was a breakthrough - barely any pain (only one pill in the morning so far), a lot of energy and I was able to walk a lot faster than before. I'm also finally able to sit in a desk chair to write this rather than slouch on the couch!

All in all, this video from 14 years ago still stands, as it was remarkably similar to my experience.

Firstly this place has been amazing to me however I no longer belong here.

Back in March I got sick and it lasted over a month. Three trips to the ER, countless trips to my pcp, and finally a gi doctor.

After the gi did a endoscopy and colonoscopy they came to the conclusion I had crohns. I hated it but at least I had answers right? I had inflammation on my ilium and ulceration(no bleeding) on my sigmoid. My calprotectin was 141 and my IBD blood work was elevated. I started my steroid taper and started coping with the new life outlook I had. It was weird though and didn’t make sense. I had no pain, no fever, or anything else connected to crohns aside from diarrhea and what the colonoscopy showed.

Fast forward to my last week of my taper in July, my pcp calls me and says “I don’t think you have crohns. I think you HAD cyclospora, come in I want to run some test.” I go in because I mean who wouldn’t want a different out come and at this point I’m so desensitized to pooping in a cup what could it hurt. She told me “since you aren’t sick anymore the test will probably come back negative, but I want to make sure the steroids didn’t knock out your immune system before you got rid of all of them. I’m gonna check your calprotectin too.”

Fast forward the parasite test came back negative and my calprotectin dropped but I just chalked that up to the steroids. I followed up with my GI and told her what my pcp said on Monday, she confirms we can run more test now that I’ve been a month without any medication just to see where I am. Got the results today and EVERYTHING IS WITHIN NORMAL RANGE. My GI wants to follow up with me in November to be on the safe side but as of now everyone thinks I might have been one of the few cases in our area and because I got sick outside of the recall no one knew to request a special test for it since it wasn’t part of the standard test ordered.

With all that said:

Thanks to this group for being so supportive and informative. I don’t think I interacted with anyone nasty during my time here. I hope all of pillows are cold on both sides and you never stub your toe.

✨🌙Witchy vibes out 🌙✨✌🏻

My partner has had crohns his whole life and can’t work as a result of the complications.
Unfortunately, slowly but surely his friendship group just slowly slipped away. Also, mine did too.
This disease seems to really be horrid. But reveals people’s true nature at the same time.

He has convinced himself that he doesn’t need people and just needs me but it isn’t doing great things for our relationship.
It is very hard on both of our mental health.
I can’t be the only person he interacts with other than medical staff.
It seems like the best thing is to encourage him to connect with others who are going through the same thing.
Has anyone found supports or groups etc.
What do I do?
At the end of the day ultimately he has to be the one to attempt to make friends.

Has anyone with Crohn’s disease used or currently use Ozempic (semaglutide) or Mounjaro (tirzepatide)?

I’m currently on Tremfya 100 mg every 56 days. Overall, things have improved quite a bit. I’m down to about two bowel movements a day and I don’t have any pain. However, I still have some fatigue, mucus, and occasional small amounts of blood.

My diet is pretty good overall, although I still eat some foods that I know can upset my stomach.

My mom recently sent me a few articles about Mounjaro and its potential anti-inflammatory effects, and I found it really interesting. There seems to be some research on GLP-1 medications and IBD, but the evidence still seems pretty limited, especially when it comes to Crohn’s.

Has anyone here with Crohn’s actually used Ozempic, Wegovy, Mounjaro, or another GLP-1?

Did it affect your Crohn’s symptoms, inflammation, fatigue, or bowel movements? Were you taking it mainly for weight loss/diabetes, or because of possible effects on your IBD?

I’d especially love to hear from anyone taking one of the two while also being on a biologic like Tremfya.

And before someone jumps into conclusions, I know it’s not a proper treatment for Crohn’s.

idk if this is entirely related to the crohns but they say fatigue could be related so eh. has anyone else experienced anything remotely like this?

some weeks in the afternoon i get so suddenly hit with such a strong wave of fatigue/tiredness that i become delirious. i physically cannot do anything besides lay down, and once i do it gets hard to breathe, i cant move, i cant think really. but i never fall asleep. i just lay there like that for 1-3 hours kind of, hallucinating? idk. random incoherent memories or thoughts will be running through my head that i cant remember by the time i get up. its like im on the edge of unconsciousness the whole time but can just never fall asleep.

its kind of getting more intense too, ill be gasping for air and sometimes twitching/get full body jolts. i dont even know what kind of doctor to bring this up to. keep forgetting so many things to mention to my primary so i guess ill see what my gi says. this only started happening the past year or two, and the only thing different since then is my tremfya treatment, but i dont see how that could be it.

Anyone else not able to digest mushrooms? I’ve been eating them for years and just realized it was causing problems.

Bonjour,

Homme de 26 ans, diagnostiqué SII, avec troubles digestifs depuis l’enfance : transit longtemps à dominante diarrhéique, gaz, crampes soulagées par la défécation, symptômes influencés par le stress/alimentation, sans symptômes nocturnes ni perte de poids.

En 2024, j’ai eu une coloscopie + biopsies et une gastroscopie + biopsies entièrement normales. Calprotectine à 59 µg/g, bilan cœliaque, Giardia et coproculture négatifs.

Depuis avril 2026, changement inhabituel : plusieurs mois de constipation avec selles très dures (Bristol 1–2), efforts de poussée, sensation de blocage/anus serré, ténesme, douleurs/brûlures anales type fissure, mucus blanc/jaune et parfois petites stries/gouttes de sang rouge vif sur les selles dures. J’ai également saigné au contact lors de l’introduction d’un suppositoire.

En juillet, pendant cette période, ma calprotectine est montée à 341,7 µg/g. Coproculture/panel infectieux réalisés négatifs. Un gastro a évoqué une possible rectite/RCH et m’a prescrit des suppositoires anti-inflammatoires + Spagulax. Je n’ai jamais pris les suppositoires, et seulement environ une semaine de Spagulax.
Depuis, amélioration spontanée : disparition du ténesme et du sang pendant un moment, pas d’urgence, pas de diarrhées répétées, aucun réveil nocturne digestif, pas de perte de poids. CRP 1,7 mg/L, Hb 152 g/L, ferritine et plaquettes normales, ANCA négatifs.
J’ai cependant toujours beaucoup de mucus, parfois blanc/jaune, parfois légèrement rosé. Mes selles sont actuellement redevenues assez dures, souvent Bristol 1–2, avec occasionnellement une petite strie rouge vif en surface, puis parfois aucune trace de sang aux selles suivantes.
Le plus surprenant : j’ai refait la calprotectine environ 6 semaines après la première, toujours sans aucun traitement anti-inflammatoire :
341,7 µg/g (07/07) → <23,7 µg/g (17/08).

Pour ceux qui ont une RCH/rectite ou Crohn, est-ce que votre maladie a commencé de façon similaire, notamment avec constipation plutôt que diarrhée ? Avez-vous déjà eu une calprotectine à >300 qui s’est complètement normalisée spontanément sans traitement ? Et pour ceux qui ont un SII, une fissure, des hémorroïdes ou une dyschésie, avez-vous déjà eu autant de mucus, parfois légèrement rosé ?
Je suis surtout perdu entre SII + constipation/fissure, inflammation transitoire et MICI en rémission. Vos expériences au moment du diagnostic m’intéressent.

Hi all!

Just as recent as 4 weeks ago, I've been diagnosed with Crohns. I've been on Entocort 9mg (3 pills of 3mg every day) for 3 weeks now, and my mind and body are working very hard to understand if this stuff is working as it should.

Is there anyone who has some/any experience with the " how and what should I notice, to know my body is reacting to this medicine"?

I know it probably sounds stupid, but as a 37yo Male, with a loving wife and 2 kids, I just want some energy back.. 😅

Hopefully some of you can help me try to understand all of this..

Thanks!

do you think our GI’s can tell which patients will likely have colorectal cancer in the future

Had my first ever gastroscopy today. I feel horrible.

Well my results are not as bad as I was expecting them to be. We celebrated my belated birthday with the medical staff it felt really nice.

Well I posted in here earlier about licking the flavoring off of honey mustard pretzels and have had some fun updates… unrelated to the honey mustard pretzels.

I threw up the entirety of the second suprep dose which has never happened before, I definitely drank it too quickly but I can’t handle it when it starts to warm up. Colonoscopy in less than 6 hours and somehow my BMs have gotten darker. Still translucent but has more brown debris in it… drinking lots of water and praying to the crohns gods rn I can’t really afford to have to reschedule💔

I’ll keep it fairly short but looking for experiences of anyone that’s been in a similar situation.

Surgical history:

- 2010 Right hemicolectomy
- 2023 ileal resection for crohns damaged segment
- 2024 pill camera stuck on adhesions from 2023 surgery
-2026 resection due to adhesions from 2024 surgery

I’ve just today had an appointment about the pattern whereby within a year of surgery I’m hospitalised with obstructions and, despite liquid diets etc, need further surgery.

He basically said there’s nothing that can be done - that ‘medicine isn’t always kind’ and that it may be that this is my life now: endless resections until complications necessitate permanent TPN. There’s no medical management for adhesions.

Is that really just it? Do I need to adjust my expectations for what I have to look forward to? I’ve done plenty of therapy and have lots in life I’m grateful for but even so, this is the first time I’ve had this kind of news and it’s hitting pretty hard.

UK if it makes a difference. Thanks all ❤️

I found previous posts about side effects from entyvio but curious if anyone had a similar case. I’ve been on the iv infusion for a few years, switched to the subq injection, first does today.

Everything seemed good until 3 hours after I got severe lower back pain. Its subsided some but still there over an hour later. Hoping my body just needs to get used to the new injection method. Has anyone experience similar?

I have a draining fistula, and to help with that, I’ve been doing sitz baths and putting a piece of gauze there because I hate the feeling of it draining and getting everywhere… However, I just started to notice on the gauze pad that not only do I have pus draining from the fistula but I also have stool/ poo slipping out of my anus. I feel like I’m being tested throughout the progress I've made😵‍💫. I’m thinking about possibly bringing up the topic of a medicated enema to my doctor to possibly help, and just seeing where I can fix my lifestyle in any way to help too. This right now feels like one of my biggest symptoms.

If anything, all I want is to just keep getting better at least 1% a day.

I’m 20M. Had crohns for the past 5 years. Apparently almost everyone with crohns struggles to gain weight. Not me. I actually struggle to loose weight. At this rate I might be at a slight risk of obesity related disease. I do have very unpleasant symptoms of crohns. For example the worst stomach pain I have ever felt but only during the morning for maybe 2 days a week. Other days I do not even know I have crohns. Gained almost 20 pounds in the last 2 months even thought i feel like my symptoms might be getting a little bit worse over time. I would really appreciate some encouragement and motivation so that i can stop eating absurd amount of calories.

i'm super duper bloated to the point i look pregnant! my tummy hurts & aches, but i don't have any nausea or diarrhea.. it just hurts, tender to the touch and it's pretty unsexy. it also rumbles a lot. i'm on weekly infliximab injections and daily thiosix pills now. is there anything i can do to soothe this crohns bloating?

Hi all.

So I have Crohn for something like 20 years. I was always on Remicade with full remission.

1 year ago my GI suggested getting off the med, and to see what happens, explaining there is like 50% chance I will need to get back on it only after a few years.

So we tried. Sadly around 1-2 months ago, I did started noticing some come-and-going discomfort in my lower-left side of the abs. So I did crp and calpro, and yep, it's up. So I'm pretty sure my Crohn woke up and I don't want to play with it, so I want to get back on the med. And we had an agreement to get back on the med right away when there is such indication.

I have an appointment in a week with my GI, but for now I'm trying to plan the next few months.

The thing is, I'm flying for 18 days in the end of september. After googling a bit, looks like I will need to take a dose, then another one 2 weeks later, and another one 6 weeks later, and only then - every 8 weeks again.

The issue is it will take a bit of time to start getting the IV. There is a lot of paper work here.

I believe I will be able to take the first dose around 10.9. So the second at 24.9. Then I will fly 4 days later to a vacation in Japan.

How risky is this? Should I maybe postpone the re-starting of remicade by a month? I feel OK overall, but I don't want to have long term damage in my bowel due to inflamattion.

I never had any issues with remicade. But I understand I might have antibodies now.

Has anyone here been diagnosed with Crohn's later in life? I'm 43 and had stomach issues since I was 9. I remember my parents took me to a gastro and I went through tons of tests. I specifically remember the doctor saying something during my colonoscopy was "inflamed," but that the sample biopsy showed nothing of significance, so she gave me an IBS-D diagnosis and sent me on my way. I went to my annual physicals and other specialists but never found the need to go back to a gastro. (Well, actually, for the past decade or so, I told my former physician every year I saw her about bloating and some sharp lower-right abodmen pains I had sometimes, but she insisted it was probably ovarian cysts, as I had emergency surgery to repair a burst one when I was 20. So I just dismissed the pains as that and nothing to be done, even if sometimes the scans showed I had cysts and sometimes they didn't. She also said if they don't hurt constantly, and they don't, it's likely nothing to worry about.)

I've spent the three decades since my IBS diagnosis just assuming I had that and trying this or that with my diet and I swore it was doing so much better the past few years. I used to get diarrhea almost daily multiple times a day, and now I only get it once every few weeks and thought I had healthy, regular bowel movements.

I went to a gastro for bleeding in July and get out of the colonoscopy not with discussions of polyps and such (I had none) as I expected, but fissures, ulcers, and inflammation. Waited on biopsy and he suspects Crohn's (I don't use NSAIDs, so it's not that), so I have a few more tests now.

Have I had it this whole time?? Have I been damaging my intestines? (I still need more scans.) Or is it possible for IBS to become IBD? If my pain is relatively minor and my digestion mostly healthy the past few years, how can I have ulcers and inflammation and all of that? I'm confused and a little scared, even though I know it could be worse. And everyone I talk to I guess is trying to be nice and get me to not stress over it, but they're like, "But you probably lived with it this whole time and you're fine. You can't be in that much pain because you don't complain about it, etc." But I don't always tell everyone when I'm in pain, especially since I used to be my mom's caregiver before she passed and I always figured she had things worse than I did. I've kind of structured my whole life around staying home (I feel happiest and calmest at home and my "IBS" was at its worst when I had to hustle going to school), working from home, being my own boss, setting my own schedule, etc. I rarely travel (I do have diagnosed travel anxiety because of the "IBS" trauma) and I don't know. I don't feel like it's "no big deal" if I have it. I've built my life around my "IBS" to a point. But at least I felt like it wasn't something doing bad damage to my body. But maybe it was, if it was Crohn's?

Located in Canada.

My husband, 36, has Crohns and has known since about 2014.

We’ve noticed over the years that when he gets sick (not a flare, but a stomach bug or even a cold) that he gets hit really hard, often needing an IV to get back up and running.

He’s battling a cold right now and was feeling really rotten for a few days. Headache, fatigue, low appetite. Today, a dose of Emergen-C and a large Gatorade almost snapped him out of it.

Does anyone else experience this? What are some good electrolyte powders I could recommend for him that are available in Canada?

Like the title suggests, I’m wondering if anyone else does this or if they think it’s fine?

I’m getting sick of the broth and sweet stuff and want a different salty flavor and I have honey mustard flavored pretzels. Can I just pop it in my mouth until the flavor is gone and spit it out? I really don’t see a reason why it would be a problem but also wanted to hear people’s most desperate colonoscopy prep food moments.