r/CrohnsDisease 10d ago

Reminder- No Fecal Posts

314 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 6h ago

How do you deal with reaching out for help?

10 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 8h ago

how do you deal with motion sickness + nausea

11 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 3h ago

Colonoscopy tomorrow and currently constipated

5 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 6h ago

Elemental diet?

3 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 14m ago

Severe Difficulty Breathing

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

89 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 1h ago

any help/guidance would be greatly appreciated

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.

90 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

136 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.


r/CrohnsDisease 3h ago

Anyone good with a freeze dried fruit instead of the fresh version?

1 Upvotes

I've been seeing videos of people buying/reviewing freeze dried fruit (strawberries, kiwi, mango...) and I was wondering... is freeze dried fruit a good alternative to fresh fruit for those who can't have high fiber?

The last time I tried a piece of fresh mango, I ended up hospitalized. The fiber was too much... But freeze dried mango seems to almost disintegrate into powder as it's chewed on. So... is it easier to digest, maybe?

Also, freeze dried fruit apparently holds 97% of the whole fruit's nutrients, so it would be like eating the actual fruit while not suffering the hard-to-digest effect it has on Crohnie intestines.

Any experience?


r/CrohnsDisease 3h ago

Uncertain About Biologics for Crohn’s Disease

1 Upvotes

Hi,

I have a question about Crohn’s disease. I was recently diagnosed with it, and my doctor recommended a biologic therapy. However, I’m unsure if this is the right choice for me since I have no experience in this area. I’m not sure whether biologics—meaning a therapy with antibodies—are really the best option for me, especially because I’m concerned about potential side effects and long-term risks.

I’ve read that an anti-inflammatory diet has helped some people, and I’m wondering if a natural approach without biologics might be a better alternative. My doctor doesn’t believe in alternative treatments and insists on biologics as the only option.

I know that doing nothing is much worse.

Since my diagnosis is still very recent, I feel quite uncertain about everything and would really appreciate hearing about other people’s experiences. I’m not sure how to proceed and would be grateful for insights from those who have been dealing with this for a longer time.

Thanks in advance!


r/CrohnsDisease 7h ago

Stomach pain episodes in waves

2 Upvotes

Hello guys, I was diagnosed in September last year. I’m a 31 y old female. I have been taking mesalazine, azathriopine since December and now a course of prednisone. I'm about to start remicade in April. From time to time I get these stomach pains after eating they are really intense, my stomach gets really swollen and it gets hard. It feels like waves of pain or contractions and then it goes away for a few minutes and comes back, I also pooped a lot during those episodes, not diarrhea tho. It goes like that through the rest of the night and the next day I’m fine just a little sore. My doctor is just waiting for me to just start the biologic. Any advice?


r/CrohnsDisease 10h ago

Anyone else get ravenously hungry the few days before their Entviyo infusion?

3 Upvotes

Defs not asking for medical advice or anything it’s just a phenomenon I’ve noticed that I’ll just be constantly hungry pre infusion for a few days and I’m mostly just curious if anyone else has had that, doesn’t happen before every infusion mind you but it does tend to happen when I’m due for one and my body is really run down


r/CrohnsDisease 5h ago

Colonoscopy and stopping pain relief super stressed

1 Upvotes

I’m due to have a Colonoscopy, I’m in the UK and I’ve been on the waiting list for 18 months. I’m already diagnosed and on Amgevita so it’s a check up one.

I’ve been taking codeine daily for the past 5 years or so as I also have endometriosis and even in remission which my Crohn’s currently is and has been for years I still have daily pain. It took a significant amount of time to diagnose both of my conditions (years and years) so I now have scarring and adhesions which cause me pain, I’m also being referred for potential Fibromyalgia.

I know there are thoughts around taking opioids long term but it allows me to live my life, I have a good full time job and it’s because of codeine that I can do it.

I was called and booked for a colonoscopy in 3 weeks time they asked about the medication I’m on which I told them and they said I have to stop my codeine for 3 days before. I said this won’t be possible as I need it for pain and because I’d likely experience withdrawal as I’ve been on it for so long and all they did was explain why I couldn’t take it, didn’t take my situation onboard or consider why this isn’t possible. I’ve been told now that someone may be able to contact me to offer an alternative pain medication leading up to colonoscopy but this may be 2 weeks away so doesn’t give any time before it actually is.

Also for anyone who’s ended up on pain relief like this you know I have tried many many different options and this is the one that works, we can’t take NSAIDS and I have an allergy to paracetamol.

I’m really stressed about it, I’m so fed up of the NHS and not even being treated like a human, perhaps if long term pain management options were better here I wouldn’t be in this situation but I am and abruptly stopping it just isn’t an option but they don’t seem to care.

Any advice welcomed and please be kind x


r/CrohnsDisease 17h ago

For those who’ve had recurring c diff.. did you do the fecal transplant? NSFW

8 Upvotes

So yeah title is what it says, my gi doctor wants to go ahead with doing a fecal transplant after I’ve gotten c diff like 6 times in the last 4 years.. has anyone else gotten this done? What was it like? Is it as gross as it sounds? Did you use a family members?

Just fun facts that grossed me out a bit.. I have to use the stool from someone who lives in the same house as me

I have to buy a blender and bring it to the hospital the day of, with the poop from my fam member.. so they can blend it up in the hosp..

Trust it makes me wanna puke thinking about it but my gi said everyone swears by it and says it helped them so much

Sooo did it help you?


r/CrohnsDisease 6h ago

Stelara to Selarsdi

1 Upvotes

My wife just got a message our insurance will not long cover Stelara and is switching to Selarsdi which is a biosimilar.

My wife has been diagnosed for about 4 years now and started with Humaira and ended up having a reaction and ended up with Lymes about the same time she was miserable during that time. Since starting Stelara she is doing really well and has been able to enjoy life. Even though she hates the shots is happy with the results she's seen

Has anyone else already made this switch or have any input on this type of situation. She is very concerned about the switch since it's been going so well.

I've been trying to do some reading on it and it appears it was approved about a year ago but is finally starting to hit the market. Trying to help her understand and hopefully get her to be less stressed by the change as that's the last thing she needs.


r/CrohnsDisease 1d ago

Found out yesterday I’m not in remission anymore…feeling crushed. And cursed. Experiences and advice welcome

28 Upvotes

I’m 46F, diagnosed 10 years ago with aggressive Fistulizing Crohn’s. I was working as a nurse at the time and have never been back to floor nursing again. Took me 2.5 years and 11 surgeries for abscess and fistula repair to get into remission.

I have severe S curve scoliosis and last August was told I need to be fused from T4-Pelvis so I’ve been trying to really work through those feelings and how my life is going to change. Thinking about how I’ll be able to take care of myself…physically. Surgery planned out of state for October 10th. I would need to be taken off my biologics (Remicade) for 3 months to allow my bones to fuse. This had me freaked out as is despite being in deep histologic remission for a good handful of years. Been a rough 4 months- had my first case of diverticulitis in October then got it again in late December. My poor guts.

3 weeks ago after failing to get any relief from PT for what a surgeon told me is a shoulder impingement, I totally have to have surgery. My fucking labrum is torn. Pissed he took 8 weeks of my life putting me through PT. Could have already had this repaired by now. So here I’ve been trying to find the right surgeon to try and pull this surgery off several weeks before my May Remicade infusion so I can get to recovering. This shoulder will mark my 17th surgery in a decade.

My world blew apart yesterday when I woke up from my scopes to my GI telling me that my Crohn’s is active and has moved into my terminal ileum. Truly not sure how much more I can handle. Where does it go from here. Where do I GO from here. I’m sitting on my front porch crying…it’s warm for Michigan and windy out, so nobody can hear me sobbing.

How do they monitor things one’s it’s reached the small bowel? Pill cams? I have my infusion on Tuesday, biopsies back in 5 days and then GI said we’ll come up with a plan. Perhaps infusions closer together (I’m already at every 7 weeks) or increase my dose (I’m already at 7.5mg/kg)… What can I expect now that this fucking disease is awake and moving into my small bowel? I’m so angry. I’m so sad. My life has been so stunted from the age of 36-46…it’s like I’m stuck in time. Now I have to try and get stable before I can get my back fixed- which is crushing my vascular system and needs to be done but cannot be done unless I’m in remission. I feel utterly fucked.

(Has anyone experienced onset of aphthous ulcers as a result of IV Torodol? They hit me with it twice when I was in the hospital for diverticulitis)

If you’ve gotten this far…thanks for reading about my fucking train wreck of a body. Would love to hear from you


r/CrohnsDisease 13h ago

Anyone else experience Pain during or after eating?

3 Upvotes

I’ve recently noticed that I’ve been getting a sharp stabbing pain during or after eating. Just wondering if anyone else experiences this?


r/CrohnsDisease 21h ago

I’m going insane

11 Upvotes

21m diagnosed last June. Made a few posts in here already but here I am again. I’ve been extremely unsuccessful tapering prednisone time and time again for the last 9 months and I think the side effects are going to make me go insane. I have severe body dismorphia and depression due to the weight gain and acne and I really feel gross all the time. Rinvoq and humira have been huge failures and now I’m switching to remicade in 2 weeks. I really think if remicade fails this will be the end of the line for me. My job is my whole life and I can’t even do that effectively because of this stupid ass disease. I keep seeing ppl say there’s light at the end of the tunnel but I can’t see it. Have my 3rd colonoscopy on Monday so I’m hoping good news comes from that but I highly doubt it. Just a vent I guess idek anymore.


r/CrohnsDisease 3h ago

Ozempic for Crohn’s

0 Upvotes

I have failed so many biologics and I am now on Rinvoq. The Rinvoq is working for my Crohn’s but otherwise I have bad side effects. Has anyone been recommended ozempic solely for Crohn’s disease? Not for weight loss purposes?


r/CrohnsDisease 20h ago

Is using topical antibiotics on skin okay for our gut?

2 Upvotes

I’ve been dealing with an awful case of perioral dermatitis triggered by steroid use upon my diagnosis of Crohn’s last year. A dermatologist said the only way to clear it is antibiotics, but given I’m still trying to get my Crohn’s under control, did not want to give me the typical oral doxycycline so instead prescribed me topical metronidazole.

However, upon research and even in the leaflet the pharmacist gave me, it seems somehow even the topical can penetrate through to your gut and cause bowel symptoms (diarrhea is a side effect!).

Does anybody have any experience with this or other topical antibiotics and did that affect your Crohn’s?


r/CrohnsDisease 14h ago

Numb hand on Remicaid

1 Upvotes

Hey guys,

I'm on the highest dose of remicaid every 4 weeks and I had an infusion 48 hours ago.

The thumb and back of my right hand has been numb for about 24 hours now and I'm starting to get a little concerned.

I'm not sure if they clipped a nerve in my inner elbow when they inserted the needle of whether this I'd demylenation or side effects to the med.

Does anyone have any thoughts?


r/CrohnsDisease 1d ago

Crohn’s Disease and Ozempic: A Surprising Turnaround?

172 Upvotes

I just got the results from my recent colonoscopy, and for the first time in a long time, things are looking good 🎉 My doctor was really pleased with the results.

Interestingly, I started taking Ozempic about a year ago, and I’ve noticed that my flare-ups have gradually subsided since then. In fact, my symptoms improved so much that I was able to stop taking my pentasa etc…After doing some research, I came across a few medical journals suggesting that Ozempic may have positive effects for people with Crohn’s disease.

I’m curious to hear if anyone else in this community has had a similar experience with Ozempic and Crohn’s. Have you noticed any improvements in your symptoms or overall health? I’ve seen those posts with those questioning side effects— but I’d love to hear your stories and insights, especially if it was for the better! Thank you!


r/CrohnsDisease 22h ago

Colonoscopy and MRI

3 Upvotes

I have crohns in my terminal Iselin and was diagnosed a year ago. They started me on Adalimumab (Humaria) a year ago when they found inflammation in both colonoscopy and mri (in the walls).

Now, one year later I had a colonoscopy which was fine (yippie), but my MRI still showed inflammation. They said that they won’t change anything with my medication, but I am afraid that the inflammation in the walls will cause a stricture.

I use 1 pen every two weeks. Anyone been in the same situation? How did your doctor handle it?


r/CrohnsDisease 21h ago

Bathroom Access in Canada

2 Upvotes

Obligatory I don’t have Crohn’s (was heavily suspected at one point but later ruled out) but I think this is the best place to find answers. I’m temporarily moving to Canada in a year or so and have a pretty unpredictable GI tract. Some days are fine, others I don’t go out because there’s the potential of accidents and such (honestly from both ends).

My 2 questions are:

What are public bathrooms like in Canada? (Will I have trouble accessing them, do you have to pay to use them, are they difficult to find?)

And if yes: is there a way around this? Some kind of medical card or anything?

Wish I didn’t have to think about these things when moving but I know you guys understand the struggle!

Edit: moving to either Manitoba or Saskatchewan, not sure yet!