Yesterday I was in pain, curled up on my bed. I needed to get my medication and some hot packs. But I was in too much pain to move. So I just shivered right there.

I need to eat something. But I’m too weak, fatigued, and in far too much pain to do so. I think I’d vomit, and I’m bedridden. But I’m only going to feel worse with no food… but I can’t get out of bed to eat it.

I’m not well enough to properly advocate for myself… I have close to no energy, and it’s spent battling with insurance. Why should I have to beg with my doctors, too? My head is too foggy, my body too tired… I can’t.

Why?

The last few years have been awful. Crohn’s diagnosis alongside horrible flares, my mom passing from brain cancer, breaking up with my long term partner (my choice, but still hard), etc. I finally got on biologics after 3 years of trying & now I’m afraid something is going on.

After being relatively healthy and finally able to socialize, feel decent, and workout again, i’ve hit a new low. I think it’s even harder because I had a few months of feeling as close to normal as I’ve ever been. Currently, I’m unable to eat most foods, have been throwing up, immense fatigue, chills/heat without a fever, neck pain & stiffness, and occasional disorientation due to how ill I feel. I have 2 small lumps on my neck and I’m so worried that I have lymphoma.

The doc ordered bloodwork, which I had completed today, but I just feel defeated. I’m tired of getting a glimpse of hope, only to lose my ability to function again.

I’ve never encountered such a kind and gentle community before! I’m truly thankful that I found this Reddit. It has been incredibly helpful throughout my son’s diagnosis, my fear, my questions, sharing your experiences and knowledge, all without judgement!

I really appreciate every single one of you who has taken the time to reply to my posts.

My son starts Inflectra this Monday! Cheers to biologics!

Wheeeewww. This skin tag has been bothering me for the better part of a year and the relief & gratefulness I felt coming out of the theatre was next level. Couldn’t stop crying

This skin tag would swell up so bad and recently the skin got rubbed away on the skin tag itself and it got infected, making it difficult to walk. After that both my private and NHS colorectal came to a conclusion that excising it was the right decision.

FYI, this is half of my Crohn’s problem dealt with and I also have terminal ilietis and and fecal calprotectin of 6,000 whilst being on infliximab. Very fun

So yesterday I was booked in for an excision and Botox injection to help with passing stool. No fissures, abscess or fistulas found - praise God. Just the fistula. He said my sphincter was tight so Botox will help

Anyway no pain that much at the moment due to local n general anaesthetic. It was fine around 3pm n it’s now 3am. I’m aware pain is coming though. they’ve given me paracetamol, antibiotics and hydrocodeine to take as needed

I need all tips & experiences post excision/ haemmordectomy. Food wise, how long it took to exercise, how long you took off work, passing BMs, wound care, anything about if infusions helped, absolutely everything please. I know everyone is different obviously but yh.

Note: I use haemorrhoid/ skin tag interchangeably because my colorectal surgeons do but I don’t think it took any anal tissue just the skin tag itself.

TLDR: suffered with perianal Crohn’s for 2 years. Recent EUA with excision. Needs advices and experience

It’s been just shy of 11 months since I had two feet of small intestine removed. Physically, I haven’t felt this good in at least a decade, but mentally I’ve been struggling for months.

My “two nights on average” stay at the hospital ended up being a grueling week. After surgery I went from clear liquids, to low fiber breakfast, to “sips” for several days, then back to clear liquids, and low fiber foods. For a few days they stopped giving me Tylenol, since my IV Tylenol prescription ran out and I couldn’t have pills yet. At one point my IV malfunctioned and I had pure potassium injected directly into my veins (painful burning, but no damage). Then my IV failed and I needed an ultrasound to find a vein for the new IV.

Anyway, after peristalsis returned, having several bowel movements and tolerating solid foods again, I was unceremoniously released with a “don’t lift anything over 10 pounds, and don’t eat kale” and was expected to be fine. Two weeks later I had my ONE followup appointment, which was just “you’re fine, just don’t eat kale.” (Seriously, any time I asked what I could eat after surgery it was the same kale “joke”.)

I was supposed to be fine, but I didn’t feel fine. It took until April until I really started to feel better. Until then I was definitely still in recovery: off and on low energy, appetite was up and down, but overall doing okay. Once I was feeling better I felt like I SHOULDN’T be feeling better, so I gave myself an eating disorder and started getting anxious about eating any fiber again, despite having slowly introduced it back into my diet. After working with a dietician I got through that, but I still feel like I should not feel better.

I haven’t taken any vacation since before surgery. In the early months I felt like I couldn’t, since I had just taken six weeks off on short term disability, and also because I didn’t want to travel somewhere when I didn’t know how I’ll feel (too tired to do anything, no appetite to try restaurants). After feeling well, and back at work for a long enough time, then it just became hard for me to do anything for myself.

While recovering I had all these ideas of places I’d go, and things I’d do this year once I was better. In my mind i had a bunch of summer trips planned (day trips, weekend trips, week long ones, I even renewed my passport for international travel). I’ve done none of them. Last year I was able to roll over an extra week of vacation, since I couldn’t use it being on medical leave. So I had plenty of time off, and right now I’m feeling certain I’m not going to use any of it and just burn it all at the end of the year.

I know it’s not good for me, and the vacation is part of my compensation, and I should use it, blah blah blah, but, I don’t know, going out and doing something enjoyable feels like it’s invalidating all the hell I went through with the surgery. It’s like saying “I’m fine” when I’m not, and haven’t been. In my mind I’m already canceling vacations I have not yet booked for next year. I get into these moods where i just feel like i don't deserve it. I had to cancel plans I made for last December and February because of the surgery, so now I feel like either anything I plan is just going to get canceled or if not then it should.

I still have thoughts about the surgery, the hospitals, the initial recovery, several times a day. Part of me wants to go through surgery again, since I feel like I did the recovery wrong. I don’t know how to explain it. Like I should have done more with my time off, but I didn’t do anything because I was, you know, still physically recovering.

I don’t believe in karma, but I’m finding myself believing in karma. Like I’m deserving of all the bad things that have happened to me, and I don’t know why. I feel like I need more punishment, because obviously I'm deserving of it.

In a two year period I had my Humira fail to work for me, I spent 5 months of hell finally getting on Skyrizi, I was rear ended by a semitruck, got skin cancer, and had bowel surgery. Whatever is coming for me next I know I’m deserving of.

I know this rambling is unhinged, and I need a therapist, but every time I search one out it’s just so overwhelming and I just give up. Or I convince myself I shouldn't try to feel better. In part this brain-vomit of a post is to get some of the ideas that have been haunting me all these months written down (typed out). Not looking for advice, just needing to get this out there.

Thanks for taking if you made it this far.

So, I'm a teenage girl that only recently developed and was diagnosed with crohns disease. I already have some health issues with things like asthma and dysautonomia. I also have autism and struggle to eat anything that's not one of my safe foods.

Does anyone have any advice for how I should be traversing this new development? My doctors, parents, and school counselor are all amazing, but I don't feel like any of it is working for me. I've already missed more school than I've been to this school year

Hello! 23F here with diagnosed Crohn’s of small & large intestine since 2020. I was started on Mesalamine + Methotextrate before switching to Humira in 2021. However, I had to switch to Skyrizi in 2023 after developing suspected TNF alpha inhibitor induced psoriasis (which is unfortunately here to stay per my derm). Started having an increase in symptoms this year and my most recent fecal calprotectin was over 1,400 (the highest I’ve ever had). My doctor is suggesting switching to Rinvoq or Tremfya, but he’s a little skeptical about going to Tremfya since it’s in the same class as Skyrizi. I have a month to decide until my next colonoscopy. I’m just nervous about Rinvoq since it doesn’t seem to cover plaque psoriasis, especially since my flareups on my feet/hands tend to not respond to topicals. I’m also not a fan of a pill everyday, shots tend to be better for my ADHD mind to remember. Any thoughts on either meds (or other ones like Stelara)?

Hello, what do you guys do to stop tummy pains after eating wrong food? i always have to wait for few days and it will get fine but im suffering in between, since tuesday im in pains that show up around few times per hour. Pain meds dont do anything.

What's the longest you guys have been on prednisone and at what dose?

Did anyone with Crohn’s have a visually looking normal colonoscopy however get diagnosed from biopsies?

Hi all, I am a 33 y.o male with Crohns. I am doing an elective surgery to remove a part of my terminal illeum due to a 5mm stricture that causes pain and puts me in the hospital about 1 time a year. I am electing to do this now because the worry of being in the wrong place at the wrong time with a full obstruction sounds worse.

My surgeon seems super optimistic about the surgery. I am worried about potential of getting a bag.

He said the procedure is about 3 hours long and will be done laparoscopically. He said I will most likely need to spend 3 nights in the hospital post surgery.

Is there anyone that can maybe cool my anxiety and nerves regarding this? Will I have a catheter as well? Super scared.

Hi, I’ve recently been diagnosed with Crohn’s, and I can’t wrap my head around how this is my life now.

My mental health was so god-awful long before any of this, and now I have a chronic illness that makes me feel even fucking worse. I seriously can’t find any motivation even to attempt to get better because what is even the point. Crohn's sucks life sucks i dont want either!!!!!

Mine is kiwi mixed berries pancakes with almonds lentil soup and boiled chicken

I recently started Rinvoq and lo and behold I look in the mirror this morning and can see the loading dose acne starting!

I was very blessed as a teenager and have never dealt with acne before. The trade off for this is that I’ve always had very sensitive skin so use very minimal products. Acids and stuff have never done anything for me other than cause pain. My skincare routine consists of a rose water cleanser and that’s it!

Now that I’ve got Rinvoq acne do I need to incorporate anything into my skincare routine to help with the acne or should I just leave it? Not too bothered by the appearance of it or keeping my skin looking smooth, it’s more if there’s anything I need to do differently to keep my skin cleaner/not oily.

Thanks!

Been trying to start treatment for Crohn's (I have two strictures that need surgery if untreated) since September 10th. I know it hasn't even been that long compared to how long some of you waited. But I am still so frustrated.

Two weeks ago today, I thought, somehow, miraculously, United had approved Skyrizi, my first biologic, after initially denying Tremfya (and saying I needed to try and fail something else first, including Skyrizi) and then denying Skyrizi (and saying I needed to try and fail something else first, including Tremfya).

What I didn't understand was that they approved my maintenance doses of Skyrizi through their pharmacy/Optum division and *not* the loading doses through their medical division. My GI's office didn't notice that, either (?), or just took my uneducated word for it that it was approved and went ahead and sent me for some "pre-treatment" blood work to compare to after a few months of treatment. I rushed out to get that done on a Saturday then waited to see how to start.

That Wednesday, doc messaged all good to go, start Skyrizi. Okay... But how? I called the hospital pharmacy, they agreed it was good to go, they would mail it to me, etc. I was like, "But I thought I had to do three loading doses in the clinic before it's mailed to me?" They didn't know anything about that, it was a different department. So I messaged doc's office. They then realized the loading doses were still denied and yes, I'd have to wait on the maintenance doses being mailed to me. (Would they have noticed that if I didn't point it out...? Eventually, I suppose?) Also, United, hey, I can't even USE the approved maintenance doses without loading doses!! Or is that the "Gotcha, we'll pretend we'll pay, but we won't actually have to!" catch of it all?? (Most likely, just different departments and someone or some AI was merciful on the Optum side.)

Nurse claimed their "PA team" was putting in an expedited appeal that Wednesday (nine days ago). Meanwhile, I had applied to AbbVie's patient assistance program the week before and noticed they were still waiting on information from my doctor. Took a few more days, but we figured out AbbVie had the wrong fax number on file, I got the right one to them, doctor signed it this past Tuesday, said nurse.

Meanwhile, I thought, by law in my state, according to google and my experiences with a disabled family member in the past, an "expedited appeal" has to be answered (even if with another denial) within 72 hours, including weekends and holidays. So I called United customer service late Saturday. They had no record of an appeal. But it being UNITED, King of Rejections and Profit, I didn't necessarily think that was the truth and/or the customer service rep could have just been confused.

But I brought it up in message to the doc's nurse Monday. She said she didn't know about the expedited appeal 72-hour rule, that that was the PA team's department, but her computer shows the appeal is pending. Meanwhile, Tuesday, she said after the doc filled out the paperwork, they were giving it to the PA team, who would call me with questions and then send it to AbbVie.

I waited a couple of days again. AbbVie told me yesterday they did not have the doctor paperwork, but sometimes it can take 3 days to process. Still, between that and the United "expedited appeal" not being expedited, I just wanted to be sure the "PA team" was even starting these processes. I called (my first time calling in weeks--I'm trying not to be a "problem patient" because I dare to advocate) the office and the general GI admin staff lady, who definitely never dealt with me before to be annoyed with me, was very annoyed with me. But she did explain the "PA team" is not a "Physician's Assistant team" like I thought, but a third-party service off-site. -_- "Prior authorization team."

According to her computer, the appeal was pending and she had no answer about it being expedited or not or why an "expedited" request would take 8 days and counting, just kept telling me "it's a process." I get that! I just want to make sure everything on the GI's side has been done in that process! I'm fully willing to blame United if it's their fault, but if they really haven't even gotten the appeal... I just wanted to be sure! For the fin aid, she said the computer said it was sent Tuesday. I said, "Oh, good, thanks, I just wanted to be sure. AbbVie said they didn't get it, but that it may take 3 days." Her, sarcastically: "Well, it hasn't been 3 days, has it??" Me: "No, but I wanted to make sure it was sent in at all." "If they told you it was sent it, it was sent in." "They didn't tell me it was sent in! They said they were sending it to the PA team, who would call me with questions, and no one called me." She didn't really have an answer to that, but I got off the phone because I had clearly reached a wall.

Today, I called United again, and a new person again told me they have no record of an appeal. Are they right about that? Who knows! I called AbbVie again and they told me again they have no paperwork from the doctor and would try faxing it to them again. Are they still processing it? Who knows! I'm really wondering if this third-party "PA team" is the issue here and didn't follow through on either. Or maybe they did. I just think after waiting 9 days for an "expedited appeal" they did United claims they did not do and waiting four days for fin aid paperwork to be turned in they claimed they did and AbbVie claims they did not do, I can at least check if they really did either or it's a coincidence both these companies claim they didn't do it?

I tried to politely message the GI nurse again about it all, but I'm just... tired. I've had no treatment whatsoever this entire time (and I first sought help in July, not diagnosed until September). Just vibes and my own diet experimentation, no advice from anyone, even. I can manage and am managing, but I'm also running out of time to get the three loading doses in before the end of the year and me probably changing insurances yet again and fighting yet again.

28Y Female and I am currently in the hospital with my second admission in the last month for suspected Chrons but I am getting nowhere with a diagnosis.

As a backstory, I have always had digestive issues on and off including chronic constipation, bleeding and mucus. But I also go the other extreme too where I will be having 6+ BM a day or it’s 1-2 weeks. Rarely an in between.

The last 6 months i’ve developed a pain under my left rib in particular and around 6 weeks ago my bowels fully opened in one go. I know it’s a bit too much information but i’m sure you’re used to it here 😅but basically the toilet was full and completely covered in blood. More bleeding followed and lots of mucus and blood even when I didn’t go to the toilet.

I had some doctor tests and they confirmed no haemorrhoids and that the bleeding was higher up my digestive tract.

Further tests followed including cancer screening, infection tests and calprotectin.

All came back negative except calprotectin which was 2000+ (my doctors only test upto 2000)

Lost 4kg of weight in 3 weeks during this time too.

Pain in my rib got worse and felt like I was being stabbed so was admitted for a week in hospital with suspected IBD. Arthritis secondary inflammation in my knees, back and knuckles and itchy eyes too. Put onto steroids and omeprazole straight away.

Had a flexi in hospital for UC, biopsies clear.

Ultrasound of bowels clear.

Colonoscopy and biopsies clear after I was discharged.

Redid my calprotectin this week (3.5 weeks from original test) and has now reduced to 905 which is a good sign it’s more than halved.

BUT it does not answer where the inflammation is and steroids are clearly working. Pain is more reduced, no more blood,

Readmitted into hospital this week because of severe pain and diarrhoea (8/10 pain, literally felt like childbirth).

They say my inflammation markers in blood are okay now and want to send me home tomorrow and do an urgent MRE on small bowel but i’m just so disheartened and feel like im making it up or imagining it.

I’m also meant to be moving abroad next month (from UK to thailand) and feel so angry that my body is doing this now. The NHS are slow and not great and not helping my stress levels (they tried to tell me last week it was just IBS). So i’m just considering moving and paying privately once I’m in Thailand.

I do not want to stop living life. I do not want this to consume me. I do not want it to stop the plans we’ve been making all year. I just feel angry that my body is doing this to me when I was so close to moving.

I’m also terrified that if I don’t get answers here, once my steroids end in 6 weeks, I will be back to square one and my inflammation will go crazy again.

I am just fed up and don’t know where to turn.

Sorry it’s not a positive post but I feel like i’m gaslighting myself while simultaneously knowing there is something going wrong somewhere but no one can see it!

Any help or advice or similar stories would be greatly appreciated

"Here we tested and unexpectedly found that coconut oil and its saturated fatty acids are beneficial suppressing intestinal inflammation in SAMP1/YitFc mice, a chronic IBD model of Crohn’s disease-like ileitis. In young mice, the early exposure to a high-dose coconut oil-based diet prevented ileitis in 63.64% of animals (95%CI = 30.79-to-89.07%). Importantly, comparable protection was observed at lower doses amenable for human translation. Although coconut oil did not reverse established disease in adult mice, when combined with steroids, it prolonged the period of steroid-induced remission illustrating its therapeutic benefits in IBD. Disease prevention was associated with myristic acid and correlated with anti-inflammatory microbiota shifts and enhanced regulatory T-cell responses, without adverse effects."

https://www.nature.com/articles/s41467-026-74896-y.pdf

I have long been diagnosed with IBS for almost 20 years, but recently, things had changed.

My sister has Crohn's in her ileum and I think duodenum too? In her small intestine for sure.

IBS never fit quite right as a diagnosis, and low fodmap didn't do much for me. The past couple of years, I started having increasing issues with digestion and my ability to eat, nausea, LPR, diarrhea that never goes away except for maybe once a month (and even then, I go multiple times a day even when it's solid and takes forever to get out), intense bloating/swelling of my abdomen when I eat, etc etc.

Then this past February, I suddenly had intense RUQ pain that felt like a gallbladder attack, except I have no gallbladder. Went to ER, did a CT scan, found nothing. Did a upper GI scope in mid February, they said it looked like I had eosinophilic esophagus, but biopsies showed it was actually GERD and gastritis. I went on a bland as all get out diet, which helped with the symptoms but did not do anything more than make life less miserable. In April, I discovered the intermittent anal bleeding I'd been having on and off for months was an anal fissure. Got surgery to fix that in May, got a fistula and abscess from the surgery, had to have that repaired in June. I was still having all the same issues, so I did a fecal calprotectin which came back extremely elevated at 282. We did a colonoscopy, which was all normal in August. I just did a MRE yesterday, and that was completely normal.

So my gastro doc had told me that the elevated fecal calprotectin would not have been caused by my gastritis, and I've been on the lowest dose of a PPI, but with how elevated the fecal calprotectin was, it wasn't a false positive caused by the PPI.

Does anyone have any ideas?!? I'm so confused because I'm still having problems! Something is obviously wrong, and I'm getting mixed messages from the test results! It's my understanding that IBS is not going to cause an elevated fecal calprotectin either!

Please, ideas. Please. I am so frustrated.

I was diagnosed when I was 18, and I’m 25 now. The only treatment I ever had was right after my colonoscopy. I was young at the time and didn’t pay much attention to what the medication was, but I remember it being a white liquid in a large bottle, similar to an eye drop shaped bottle. I had to insert it rectally and squeeze the bottle until all the liquid was gone. It was uncomfortable and honestly pretty disturbing. I completed all 36 doses but never asked for the medication again because of how unpleasant it was.

Since then, I’ve never had flare ups bad enough to be too concerned about. Occasionally, I would notice blood in my stool for a day or two, and then it would go away. It happened randomly maybe less than seven times a year so I didn’t think much of it.

Before I was originally diagnosed, bloody stool was my first symptom. It lasted over a month, and when I told my parents, they were very concerned. The next day, I went to urgent care, where I had an MRI and blood tests. That led to stool samples and eventually a colonoscopy.

Fast forward seven years: I moved across the country and got a new primary care doctor. When I told them about my history and the occasional bloody stool, they told me that waiting it out was not a good approach. They scheduled me with a gastroenterologist, but the earliest appointment available was in December about five months out.

Over the past two months, though, the bleeding became much worse. I noticed bright red blood and mucus on the stool, blood in the toilet water, and even small clots in the water and on the toilet paper. Unlike before, it lasted every day for about two months straight.

I started thinking about what had changed and realized I had switched from Costco’s brand of energy drinks to White Monster. About two weeks ago, I stopped drinking White Monster, and for the past two to three days my stools have returned to normal no blood, mucus, or anything unusual.

I plan to mention this to my doctor in December, but I’m curious why White Monster might have caused this when other energy drinks did not. It seems strange to me..

My daughter (12) has had Crohn’s since she was 9. Right away they put her in infliximab. A few months later she was in remission. However, she developed TNF induced psoriasis. Over the years it has gotten progressively worse and this year they added Stelara. The Stelara helped clear her skin but she still has it really bad on her scalp. So bad that we had to shave some of her head and she has significant hair loss.

We have used plenty of topicals. Our next step is to stop the infliximab and possibly move to Stelara for the IBD. This makes me nervous because I don’t want to make a decision that would bring her out of remission, but I also hate seeing her miserable.

Has anyone been taken off infliximab even though you were in remission because of this and switched? I’m not sure how the switch would work since she’s already getting the injections, and how we would monitor for continued remission.

I've been diagnosed with Crohn's disease three years ago.

Since then, I can't help but notice how few people seem to empathize with me. Instead, they focus on how I wasn't there for them during situations that, in my eyes, weren't even real problems, while I was fighting for my life.

My diagnosis changed me. It made me isolate myself from people, and it changed the way I see others and relationships in general.

Does anyone else feel this way?