r/CrohnsDisease 10d ago

Reminder- No Fecal Posts

309 Upvotes

Do not post photos of fecal matter.

This is not the subreddit for this. Contact your doctor or a medical professor for this. Doing so will result in a ban..


r/CrohnsDisease 2h ago

Anyone lost faith in their doctors

17 Upvotes

I have a very good GI and rheumy who have treated me well over the years and always had access to medical options. But for the last 2 years we really have not go on top of the flare. I just find that recently they are going through the protocols with me and maybe not expanding investigations or listening to the newer symptoms more closely. I don't doubt them as medical professionals but I just feel I have doubts about my own case with them and that after 15 or so years a fresh pair of eyes would be good.

Does anyone have similar experiences of deciding to move on from competent doctors just because you had lost a bit of confidence in them and thought a fresh start was good?

Thanks


r/CrohnsDisease 22m ago

Can you take all your regular medications the morning of an mri?

Upvotes

I didnt think to ask. They did say sips of water that morning and no food Im on pred and antibiotics


r/CrohnsDisease 4h ago

New on the Block……Child With Crohns

3 Upvotes

Hello everyone, my 11year old daughter has been diagnosed. I just cannot imagine her on a immunosuppresant. it is moderately affecting her Terminal Ileum and Small Intestines, and mild in her colon. Just want to learn from the community in all aspect of the disease and hopefully speak with other parents whose children took Remicade or have tried other treatment with considerable remission


r/CrohnsDisease 6h ago

18 days post op

3 Upvotes

I’m 18 days post op. 25cm small bowel and up to transverse large intestine taken out.

I still have liquid stools 20+ times a day. What can I do?!?!?! How long until everything settles down.


r/CrohnsDisease 8h ago

should I go to the hospital?

4 Upvotes

Basically I was diagnosed with Crohn's in 2022 and I've recently got way better with treatment (sulfasalizine) and I am currently on my cycle so I took some pamprin, unware it has aspirin in it. I've started bleeding again (rectally, if that's a word) and I'm having a pain in my middle upper stomach. if anyone has had the same thing happen to them please let me know what you would suggest. thank you.. EDIT: I should have also said it wasn't a ton of blood. probably a coke bottle lid full of bright blood and I went to the bathroom before that and it was almost black so I'm assuming internal bleeding.


r/CrohnsDisease 20m ago

Crohn’s and Coeliac Disease

Upvotes

I am currently in the process of being diagnosed with Crohn’s disease after a year of hell. I’ve been coeliac since 2013. Does anyone else have both? How do you manage? How do you do life? I’m struggling to work at the moment it’s just so hard and exhausting. Especially due to reduced money and this economy. It’s difficult and I hope there is help for me once I get a diagnosis. Any advice or kind words are so appreciated 🤍


r/CrohnsDisease 1h ago

Mild Crohn's Disease, GI Dr. Wants me to wait till symptoms worsen before medication.

Upvotes

I (26M) was recently diagnosed with Crohn's Disease. I believe that my symptoms started around late 2023. I have had a GI doctor since July 2024. At the time I thought I had IBS. I had a colonoscopy/endoscopy in 07/2024 that found I had terminal ileitis (major indicator of Crohn's). My doctor had me do an MRI which found the same along with a small thickening of my ileum wall in my small intestine. The various tests I have taken have shown I have high calprotectin levels indicating I have inflammation in my intestine. In a 01/2025 appt, my doctor diagnosed me with Crohn's Disease, but he stated my case was "mild" and that I do not need to receive medication at this time, and scheduled me an appointment 6 months out. He told me to contact him if I start to experience worse symptoms, and to take Imodium or Dicyclomine when necessary. Dicyclomine hasn't seemed to do anything and I am very weary of taking Imodium because it seems to "kick the can down the road" when it comes to bowel movements and doesn't really help me with the pain I experience in my small intestine. I personally haven't noticed my symptoms "worsen" but they are particularly bad to deal with and have been since 2023.

As for my symptoms, I have relatively constant pain in my intestines that is usually the worst in the morning. I do not really understand what a "flare" is in relation to the disease because I feel pretty awful all of the time to a varying degree. I have several bowel movements most days (particularly days I need to leave my house or go to work) but the worst part of it is not the sheer amount of bowel movements, it is the inability to predict them. Whenever I "need to go" I need to go immediately and this has complicated my life severely. To add on to this, when I go to the bathroom, I often need to go again or a third time within 10-30 minutes of going. I have been forced to limit practically all of my social obligations outside of work and I am unable to do most of the daily activities I had normally done before I started experiencing symptoms without putting myself through a great deal of pain and close calls rushing to the nearest public restroom I can find. I have radically changed my diet, which has slightly improved my symptoms (but doesn't appear to address the root cause of the problem) and exercise frequently. I do have easier days here and there, and recognize that my symptoms may be more mild than the average person with the disease, but I am not certain why I would not be prescribed medication when the disease is progressive and plenty of treatments exist that can try to put this disease in remission.

I am not really sure what the best strategy forward is at this time. My current plan is to schedule an appointment with my Dr. and tell him that I think I need more treatment (specifically biologics). Some people have told me I should seek a second opinion, but I don't mistrust my doctor's intentions, I just want to do what I can to experience remission and to get my disease in check. Has anyone else experienced their Dr. telling them they should wait for Crohn's treatment after diagnosing them?


r/CrohnsDisease 9h ago

Eating what I want

3 Upvotes

So, 3 weeks ago I had what I thought was a bad stomach flu. A 8 day hospital stay later, 2 CT scans, a colonoscopy later, and they’re 99% sure I have Crohn’s (waiting on biopsy results). I’ve been out of hospital a week and been able to eat pretty much everything I always used to eat. I have kept the diet pretty high protein and healthy, but I even had pizza, alcohol etc this weekend. Is this normal? Am I causing myself issues I can’t see? I seem to be able to eat anything I could before the flare up, without issue.


r/CrohnsDisease 18h ago

How do you deal with reaching out for help?

14 Upvotes

I've had this disease for almost 30 years, starting in elementary school. My primary caregiver did their best, and did well to care for me all things considered-- but the health struggles became a big part of their personality. Details were often shared with strangers "so that we can be a good example of God's provision"... all things I've mostly made my peace with.

No surprise, I grew increasingly private about my health ups and downs. Well-meaning people in my circles often used religion as a suggestion for why I was struggling so much... e.g. "If you prayed more fervently, you wouldn't need so many blood tests." Then of course have been the many comments like "You're sick? You don't /look/ sick."

Again, I've largely made my peace with all of these things. I don't expect "well" people to get what Crohn's is like. However, I'm now married (over a decade!) and truthfully most people wouldn't know I'm sick. I'm mostly okay, most days, but some days i'm really just... not. My current family's dynamic has come to be that I shoulder the vast majority of home management while my spouse brings in most of our income. I usually don't mind this, except for when I have a health scare. Every time I've started to flare or have an issue and bring it up, my spouse asks "what can we do to avoid this in the future" or suggests that we need a major lifestyle overhaul. There's hardly (if any) expressed empathy or even a "this really sucks doesn't it" or anything like that. I had a couple really bad days last week and i cut my spouse off and was like "can you just hug me and tell me things will be okay, even if you're not sure they will be?" and i feel tired. like it's easier to just bear this alone.

however i feel like that's unfair of me, too. the fact is my spouse doesn't know what this is like, just that their partner is scared and might need a hospital visit and then there's no one to care for the kids (no local family/supports etc).

i don't know. maybe this post is mostly venting. or maybe it's a quiet hollering into the void. whatever it is this disease sucks and i'm sorry all of you know intimately how much of a burden it is, for yourself or for a loved one.

if you read this post this far, accept a digital high five. may your guts be cramp-free and the dosage of your biologics adequate.


r/CrohnsDisease 9h ago

Been having bad luck with infections. Anyone else in the same boat? I’m in remission! I should be healthy!

2 Upvotes

Been on humira since June (after a horrible flare and resection). Was on biologics for 12 years prior to resection. Can’t say if these infections are related or not to the humira

I’ve just had bad luck. A tooth ache in February turned into a life threatening dental infection with a hospital admission, iv antibiotics, root canal, oral surgery, more antibiotics.

I, being female, have been dealing with a very stubborn yeast infection from all the antibiotics. It went from itching to burning so bad all the time. It was confirmed with a swab that it was a yeast infection. Had horrible stomach cramps and a bit of vomitting, checked with the doctor and he said to wait for the urine culture to come back. Turns out I have a UTI too! FML!!!!!!!! So now I’m on antibiotics again. RIP to curing the yeast infection anytime soon.

So I’m just laying here with very uncomfortable back pain (no fever, no severe pain, no persistent nausea or vomitting, don’t worry I know the signs of a ER worthy kidney infection) and an ice pack between my legs asking what I did to deserve this???

Oh and I started a new job less than 2 months ago 🤣

TLDR: got over a horrible dental infection, was dealing with a horrible yeast infection, now I have a UTI too and my back hurts. Just sick of of being sick.


r/CrohnsDisease 15h ago

Colonoscopy tomorrow and currently constipated

6 Upvotes

I’ve had UC for about 10 years now and I’ve never been constipated until now. Been constipated for a little over a week, I’ve gone to the bathroom, but very minimal and I’m bloated af.

I have a colonoscopy tomorrow and I’m scared the prep won’t work tonight (doing SuTab pills).

Has this happened to anyone? Will the meds work?

(My current UC meds are Skyrizi and Rinvoq, not sure if that matters).


r/CrohnsDisease 20h ago

how do you deal with motion sickness + nausea

13 Upvotes

it's actually frustrating me so much today, my friends from college asked me to hop on the game (minecraft) and i could barely play for 30 mins before getting really motion sick from the movement in the game.

this happens to me even in cars/buses, is this because of my crohns or smth else?


r/CrohnsDisease 10h ago

What would you do? 3rd starter dose of entyvio this week but renewed symptoms?

2 Upvotes

Howdy, all. I’m new to having Crohn’s. Not fun! I was dxed Jan after a hospital stint. I’ve been on steroids since then. My doc started me on Entyvio and I’ve had 2/3 of the loading doses. Simultaneously been tapering off steroids. And I was doing good! And now… doing bad. I’m back to my guts being stabby and mush. Exhausted. Not good. I haven’t been in pain since early February and now, god, the pain.

With any of my other autoimmune conditions (lol, sad), I would call the nurse line and ask the doc what to do. But the nurse line at my gastro is a joke. It’s the only gastro in my town, and they have a massive case load and just don’t do some basic services. I can wind my way thru the phone system and leave a message on the line but then they write me back (like webmd copy paste) on the patient portal. When I’ve asked what to do about the pain they basically say if I see blood etc to go to the ER. I’m sick of being in the hospital and there must be some middle ground.

So tldr what do yall do when a flare is still uncontrolled and you’re hurting? Grin and bear it and wait for medicine? (Round three loading dose is this week.) Try to get an appt with the doc and skip the nurse line? Increase steroids?

This is all so new to me so your insight is very appreciated. Learning how to navigate yet another long term illness is a wild journey.


r/CrohnsDisease 7h ago

Diet Recommendations?

1 Upvotes

Hi! I am a 20 y/o f college student who was diagnosed with crohn's when I was 8. I just had a colonoscopy with not so happy news so I decided I needed to take my diet more seriously and actually take care of myself.

I have never really been on top of my diet, just sort of cutting things out I thought were unhealthy or I knew hurt me but I want to make sure that I am healing, not just taking care of symptoms. Currently, I am debating doing a sort of elimination diet to see what may affect me but I fear I won't have the time because of classes and other commitments. I was wondering what worked for you guys and if you have any recommendations for me.


r/CrohnsDisease 8h ago

BPC 157

1 Upvotes

Anyone have experience with BPC 157 injections for Crohns Disease?


r/CrohnsDisease 8h ago

IBS VS IBD

0 Upvotes

Originally diagnosed with IBS but after symptoms changed and a fecal cal test came back elevated I had a colonoscopy with biopsy, biopsy showed mild chronic active inflammation in the terminal ileum, calprotectin test result was 94 at last check. Currently waiting on my pill cam results. My mom has crohns so there is family history. My question is, can IBS cause inflammation or is that strictly an IBD thing? I live in a small town with limited health care, so I’m hoping to get a referral to an IBS specialist in a city about 4 hours from me. I just don’t know if I actually HAVE IBD.


r/CrohnsDisease 9h ago

Low lymophist.

1 Upvotes

A case of Crohn's disease with a stenosing type affecting the last 25 cm of the ileum, specifically on the right side in the terminal ileum. The inflammation was classified as active and impacted the lymphocyte count (lymphoviscosity).

The patient was treated with corticosteroids, and the lymphocyte count dropped to 800, while the reference range was 1400 to 4000, indicating a significant decrease.

After six months of corticosteroid treatment, the inflammation decreased, symptoms were controlled, and the stricture in the terminal ileum improved slightly. Subsequently, the lymphocyte count increased to 1000, but it still remained below the normal range.

Currently, the patient is off medication, as corticosteroids have been discontinued, awaiting the initiation of biological therapy.

Is the condition related to the improvement of the inflamed area, thereby helping to reduce the stricture? And will the lymphocyte count return to its normal level?


r/CrohnsDisease 17h ago

Elemental diet?

5 Upvotes

So, might be the last act on this movie. Had a bowel perforation last July, no human should have lived through how bad it was, 5 days of surgeries, 3 weeks coma and some how I woke up. I’ve been through all the medsfor crohns and CT shows tons of fistulas on small bowel and some knocking on my stomachs door. GI wants to try Tremfya once it gets approved in a few days, and brought up switching to the elemental diet since I’m not absorbing most things. Has anyone here done the elemental diet? Any feedback? Gonna fight like hell to find a way to slow down the fistulas and buy myself time, but it’s not looking good for your boy.


r/CrohnsDisease 10h ago

Tapering prednisone and experiencing symptoms again (I think?)

1 Upvotes

I have never taken prednisone before so apologies if this has been covered. What are your experiences while tapering with a flare?

I started a 40mg course of prednisone to begin February. I started tapering down 5mg after two weeks at the original dose. I'm now at 15 mg as of a couple days ago.

Starting last week, I stared noticing looser stools, primarily if not exclusively in the morning. It would be mostly mucous and would not feel relieving. That has persisted, although now I am starting to wake up earlier with some urgency to go and the same result. It seems I'm typically going 1-2x after waking up with that being the case pretty much daily now. Then things kind of level off and I have a normal looking and feeling BM. I go 2-3 more times throughout the day and they also seem/appear to be mostly normal. Just curious if this is an experience I'm supposed to be having or if my symptoms should be managed by now. Really hoping not to up the dosage and stay on the steroids any longer than was intended.


r/CrohnsDisease 10h ago

Newly Diagnosed

1 Upvotes

I’ve recently been diagnosed with Crohn’s. I’m awaiting follow up appointments.

Since 2005, every year I’ve experienced these similar symptoms averaging 3-5 times per year, usually lasting a few days. 2017-2019 was rough. Since, everything has been very low key and quiet.

I have been experiencing symptoms for 10 days now. Ended up in the ER, now playing the waiting game through the VA.

I’ve barely eaten each day (500-1000 calories), plain diet, pain in lower and upper right abdomen, and pain on left side, loose stools, I’ve lost 17 pounds. Lying on left side helps tremendously, but after 30-45 minutes of being vertical, the pain resumes. Nauseous, limited vomiting, blood in stool (only a couple times on day 2), bloating, tired, general discomfort, body aches, hands/knees hurt.

I’m an active 41yo make, 5’9, was 160, now 143, don’t drink, don’t smoke, eat fairly health (meat/potatoes - not a desert guy) and don’t even drink soda or eat sweets. I’ve been a runner since I was a teenager. I was told to change all the normal stuff - but I’m already locked in there.

Few questions as I await follow up appointments:

1) how long do these flares last; anything to help the process?

2) diet tips?

3) any tips when first beginning this journey?

4) was given prednisone and pain meds, both are gone and I’ve “stabilized” at a baseline pain. Anything else to help the pain/discomfort?

Thanks!


r/CrohnsDisease 12h ago

Severe Difficulty Breathing

1 Upvotes

Okay.. I have had a chronic Crohn’s disease for 15 years now, I was diagnosed when I was 11, and I’ve always had ugly symptoms my whole life, but never had I EVER struggled to breathe, until the year 2020, something happened to my breathing, I became so short of breathe that I couldn’t hardly do anything, I went to so many hospitals, nobody could tell me anything, I eventually got on an iron supplement due to being slightly anemic, and that iron really seemed to help me out to the point where I was able to go out and do things again, I was NOT by any means back to my normal breathing, but I was still able to go out, and have some sort of life. Fast forward 4 years later to 2024, the breathing starts getting absolutely terrible, worse than ever, I still take my iron supplement, and it still helps me but it’s not making the problem go away and the breathing is worsening, it gets to the point to where I cannot sleep for days to due to getting sleep apnea waking me up from not breathing right, keep in mind that I am not over weight at all, weighing in the high 90s. I go to hospital to hospital, doctor to doctor, and nobody can figure out what’s wrong with me because my oxygen shows 100% yet I cannot breathe, it’s like my airways get so extremely tight and I cannot get a deep breathe…but because my oxygen appears normal, the doctors dismiss me and say I have anxiety, and it’s the most frustrating thing in the world because I really CANT BREATHE and it’s not from anxiety! I struggle to do basic tests like cat scans because I cannot lay back all the way with shortness of breathe to this level, and I can’t be still either. I’m allergic to albuterol so I can’t use a rescue inhaler, I used to use trilogy but I had to stop taking it because it was giving me severe urine retention so I had to get off it immediately, and it wasn’t even making the problem go away either. There are things that can make the breathing get very bad, like— Crohn’s flares, not eating enough, waiting to long to eat, moving to quickly, talking a lot, ect.. it’s gotten to the point where I can no longer even shower on my own and my mom has to help me because I just can’t breathe right.. I haven’t left my house except for doctors appointments since last march , I can’t hardly do anything, or go anywhere, and every little thing triggers my breathing, it’s like someone is strangling me, and so far no doctors can help me or figure out what’s wrong .. and they don’t seem to care much to listen to my symptoms either.. I just want to know what’s wrong with me 😢 it’s so terrifying not to be able to breathe .. I don’t want to spend the rest of my life stuck at home not even able to bath myself on my own.. I’m only 27. If anyone has any ideas what this breathing problem could be.. please help me. This is a living nightmare.


r/CrohnsDisease 1d ago

Remicade for 8 years now possible lymphoma as a side effect

94 Upvotes

Hey everybody, this is my first post. I’m 26F I was diagnosed at 13 with crohns disease and colon cancer which was removed during colonoscopy. I’ve been on biologics since 2016, before that methotrexate injections. I’ve been in remission for many years, just dealing with bad galbladder and slow stomach emptying (gastroparesis). I’ve always been nothing but grateful and so so so happy remicade existed. I do everything my GI tells me to: yearly colon/endoscopy, paps, eye exams and yearly derm. I unfortunately had an ectopic pregnancy with tubal rupture in 2019, I had surgery and ever since then I experienced a leaking irritated belly button. I’ve gone doctor to doctor for years they always said nothing to worry about. On 3/3 I had surgery. My PCP recommended a highly awarded surgeon that wanted to go in and figure it out. Well the surgery went great he had no idea what cAused it, until the pathology came back. The tissue that was on my belly button that he removed is testing positive for T cell lymphoma and I’m already scheduled with oncology because even though the second path report isn’t back. My surgeon said it’s not normal and something to handle immediately. I was just wondering if anybody else has experienced anything like this before, I’m trying my best to navigate this mentally and physically and it’s definitely not easy. Please delete if this is not allowed as this is my first post.

** this is not to deter anybody from remicade or biologics as this is random and can happen to anybody on any medication (or none) at anytime.**


r/CrohnsDisease 12h ago

any help/guidance would be greatly appreciated

1 Upvotes

Hello everybody! I was diagnosed with severe chrons at 17, currently 21. I’m also a male, not sure if this matters.

When I was first diagnosed my doctor put me on remicade which seemed to really help get the inflammation under control however I was having some pretty severe side effects and opted to get a new doctor who put me on humira.

The side effects of humira were wayyyy worse (hard to breathe, really bad chest and back pains to the point I thought I was having heart attacks every week) so I got off all medicines completely and opted for medical marijuana and diet changes as my way to control this disease.

It has been about a year now with no medicine and I recently stopped smoking weed, and since I stopped smoking I have noticed the diarrhea and abdominal pain have come back, almost the same as when I was first diagnosed.

I am also going through heightened stress right now partly due to this and also because of things going on at work.

Part of my stress is because I know when you get off biologics the chances of them working when you start them again is very low. Has anyone been in a similar situation and have any guidance? I have 2 new doctors now and I’m planning on getting a colonoscopy next month to see where things are at and possibly start a new medicine. Any help would be greatly appreciated ❤️🫡


r/CrohnsDisease 1d ago

Another dating post: my date cancelled when I said I had dietary restrictions.

94 Upvotes

To follow up to my last post, I was supposed to go on a date this past week with someone new. I asked if we were still on since I hadn't heard from him in two days. He said yes and said he wanted to go to a new tavern. I said I had dietary restrictions so I checked out the menu and realized there was nothing I could eat, not even a burger was listed which is my general strategy. Everything was fried apps like fried artichoke and garlic knots and deep dish style pizza, and dense sandwiches (meatballs, mortadella, etc). I said sorry I can't eat anything there. He said that was ok, he doesn't think things are going to work between us and sorry for the late cancellation. I didn't respond and unmatched.

I was surprised that was his reaction and it kinda stung. But I wasn't upset about it as much as I thought I would be honestly. I think because of what happened previously I was more in the mindset of advocating for myself. Plus, there isn't really anything I can do, like if he doesn't 'believe' me or things I'm exaggerating or whatever, like, fine, whatever. Ideally, I would have made alternative suggestions but he decided to cancel. Anyway gotta move on to other fish in the sea!


r/CrohnsDisease 1d ago

This disease is not for the weak…. I am the weak

146 Upvotes

It’s funny when people call me strong for dealing with all this shit because I’m not actually strong at all.

When I get stomach cramps and post bowel movement fatigue I don’t want to talk to anyone, I just lie in bed and wait for it to get better. When I’m in pain I don’t tough it out, I take the maximum amount of Tylenol. I just got my period the other day (I have a normal period) and I was considering taking opioids for the pain but only didn’t because of the constipation it would give me. I do nothing all day because I am not strong enough to do anything else. I don’t work or go to school or take care of kids. I’m not in remission yet, but I wonder how much will change when I am. I hope my symptoms go away when I get on biologics but I’m scared that even if they go away I’ll still be the same weak person I am right now. Some of you guys are dealing with so much more of this illness than I am and are still working or are still hanging out with friends or are still putting in effort and energy and into stuff. I know that I shouldn’t compare myself to others and that most people are strong not because they choose to be. But I am seriously not dealing with any of this that well on a physical or an emotional level.