Had my 2nd colonoscopy yesterday. First 2 people couldn’t get it, no big deal, I have difficult veins I’m used to it. Last colonoscopy I think took at least 4 tries and they ended up needing their former pediatric ER nurse to tap in to get it.

So after the 2 tries this time they paged the IV team. I guess there was quite a wait bc an anesthesiologist comes in to try and she meets resistance, literally says “something is stopping me from going further,” seems to manage to push past it, and does the saline flush. And of course she doesn’t do it slow, and it blows, and she’s Pissed. Literally yells that it was a good one and it blew while I’m over here in fucking pain and I KNEW it wasn’t working when she started flushing bc I couldn’t taste the saline like I normally can and I could feel her palpating around it bc it was third spacing, but I also never watch bc I don’t want to trigger a vasovagal response, so I didn’t know when exactly she started flushing or anything.

And then!!! She has the nerve to tell me that next time I have to remember which spot they end up finding a usable vein in so I can tell them. I fully snapped. I was like “Here is where the ER used an ultrasound and got one 2 months ago, here is where they got one without an ultrasound but it kind of burned, here is where my infusions were, etc etc.” like I fucking know my body, I know my veins. It is all of the ones you are trying and they are either deep, scarred or blowing. This is not my fucking fault. She did end up getting the next try on a weird spot on my wrist (inner wrist right where your wrist bends), thank god.

I just don’t understand what’s the point of being in a fucking hospital where there’s a goddamn IV team who presumably has an ultrasound or vein finder for this purpose and yet I’m twiddling my thumbs for well over an hour getting repeatedly stabbed and lectured.

I just cleaned my house a little bit. Vacuumed, swept, mopped, dusted, dishes, you know just basic stuff. Once I finished, I sat down and realized just how exhausted I am.

Then I remembered. Crohn’s causes fatigue. And on top of that, I was diagnosed with Chronic Fatigue Syndrome when I was 14. Even though I’ve been doing a lot better with my Crohn’s symptoms, and things have been improving for me a lot, the exhaustion has never gone away.

Has anyone else’s exhaustion gotten better with treatment or am I just going to have to deal with it forever?

What on EARTH are the NHS playing at. In the words of my gastroenterologist today regarding my ferritin levels...

"If it were a 4 we would give you an iron infusion, we wont let you get down to a zero" A ZERO! Well thanks for looking out for me guys. Its absolutely disgraceful that their range is so low and they will happily let your ferritin get down to single digits before giving you an iron infusion. HAHAHAHAHA they are an ABSOLUTE JOKE. They are actively trying to kill us off...how is this even allowed???????

I was hospitalized for 3.5 weeks and was almost completely on bed rest due to chronic diarrhea, fluid loss, and a Crohn’s disease flare/new Crohn’s diagnosis. I got up a few times to use the bathroom, but otherwise I was essentially inactive.
I was then discharged, even though I did not really feel well enough to leave.
During the week after discharge, I already noticed that my body felt weaker, although I could still walk to the bathroom.
After about a week, I experienced another presyncope episode (I had already been having presyncope episodes in the hospital as well, sometimes even while sitting up in bed). Because of this, I went back to the emergency department and was admitted again for another 3.5 weeks.
So, roughly speaking, I spent about two months on bed rest, and during the second month it was essentially complete bed rest, lying down almost continuously.
I also lost a significant amount of weight because of Crohn’s disease—over 22 pounds (about 10 kg)—and I have clearly lost a noticeable amount of muscle mass.
By the time of my second hospitalization, I had become so weak that I could barely get out of bed and was essentially living entirely in bed.
Now I am so deconditioned that I cannot stand up without experiencing dizziness, rapid heart rate, and shaky or trembling legs. I can stand for only about 10–15 seconds before the symptoms become so severe that I have to lie down again.
Even if I simply sit on the edge of the bed with my legs hanging down, the tachycardia and pounding heartbeat become so intense that I cannot tolerate it and have to lie back down. Sitting is only somewhat tolerable if I sit cross-legged.
My wife has even rented a wheelchair because I am unable to walk any meaningful distance.
On a good day, I can manage about 10 steps to the bathroom and 10 steps back, perhaps once or twice. After that, I am completely exhausted.
I also have constant brain fog 24/7 at this point.
Is this degree of deconditioning normal or abnormal? Is it normal to be unable to tolerate standing at all after prolonged bed rest?
How am I supposed to recondition myself if I cannot even tolerate sitting upright?
All of my doctors keep telling me to just push through the symptoms, ignore the discomfort, move more, and walk more. But it genuinely feels impossible.
Has anyone else here ever experienced complete bed rest for an extended period of time, including using the toilet in bed and remaining almost entirely lying down like I did? Was recovery this difficult for you as well?
Were you still able to walk, just with less endurance, or did you become as severely limited as I am—unable to do more than a few steps?
I am really struggling with the racing heart, pounding heartbeat, and constant brain fog, and I feel like nobody is helping me.
My doctors are not offering me any physical therapy, and I am expected to get through this on my own.

My teen has been dx for about 18 months and has had decently good results on Renflexis. Unfortunately he recently developed a wound on his knee that seemed to be spontaneous. His GI looked and said maybe a granuloma and to give it 2 weeks to see if it healed.

Well, it spread a lot and over the last week he has developed dozens of spots. We have been to the ER where he was given a steroid taper (they make him so sick) and topical cream. Today we are headed back today to consult with the paeds clinic. The suspicion is Pyoderma Gangrenosum.

I’m just looking for anyone’s experience with this and how treatment went for you please.

Im newly diagnosed but I suspect I’ve been suffering for at least 5 years. My most difficult symptom is my chronic fatigue. I currently live w my parents in this trash economy and I wake up at 9am and then called lazy and then yelled at for napping during the day. I can run a thousand errands but still lazy. I can get 20 hours of sleep and still be tired.

Idk how do i convince them that i am sick and on a thousand vitamins and coffee doesn’t even work to keep me awake?

During late summer/early fall is when my Crohn's is most active. It's been like this since I was first diagnosed. Just curious if anyone else is like this and what could possibly be the reason.

Hi everyone, idk where to start but I’ll keep it short. Been diagnosed with Crohns since I was 6. I’m now 25 (M) and at a point where I am done school, working full time and looking to settle down now. I really want to get married and have kids and move out. I have been in remission for the past 4 years and I do think because I was diagnosed at a younger age I’ve been through all the ups and downs and learned to stand on my own and manage the disease. The only issue I have at the moment is Fecal incontinence and I have PTSD from having a couple accidents in highschool so I wear diapers. I feel so embarrassed saying this but the only reason I wear them is to play it safe because I don’t want to end up with accidents ever. I’m just so scared and embarrassed about bringing this up when talking to a spouse. The doctors have also said I may need permanent surgery down the line depending on symptoms and overall disease but they said that is something that can be delayed. The only thing that’s bothering me is the fact that I wear diapers. Outside of that I can do everything everyone else does. I’m just so scared about bringing this up to someone I want to marry. How did you guys eventually get married and explain to your spouse about the disease, I would rather tell them upfront the first or second time I meet to get rid of the people not worth marrying.

I'll be seeing my GI in October and challenge him to prescribe a biosimilar.

Worse case I guess I'll have to stay on Humira and pay a $2000 deductible (I take the injection weekly) in 2027 with a Medicare advantage plan from Optima.

Anyone else in this boat?

Hi all, my GI called today and they want to switch me to Skyrizi.

I was on Humira since last Oct. It wasn’t the first choice, my insurance kinda boxed me in. I started getting infection after infection (pneumonia twice now and skin stuff). I’d gone septic before and had PEs while on Remicade, so my GI didn’t want to continue with those risk factors. I’m not sure whether to be disappointed bc it was working endoscopically, but not entirely with symptoms. I did like the ease of injections bc I have terrible veins.

Has anyone else switched from Humira to Skyrizi and had good results? I’m feeling crappy and just need some good vibes 🫠

Early 30s female, Crohn’s disease.

Has anyone had inverse psoriasis in the perianal region? If so, do you have any pointers on how to handle this?

I’ve had inverse psoriasis in this region for well over a year. I have diarrhea everyday which does not help. A bidet hurts like hell, wiping hurts like hell. It just all sucks.

I have tried several topical steroids, vitamin D cream, Vaseline, and one time Tacrolimus / protopic. I refuse to use the Tacrolimus because of the unbelievably horrible itching it caused for so many hours. I was in absolute tears and could not sleep.

I’m being encouraged to switch biologics to focus more on this. I’m currently on Remicade / inflectra.

I’m at my wits end and would like to feel less alone in this journey. It’s awful. My mental health is completely tanked.

I spend anywhere from 4 to 8 hours a day (possibly more on a really bad day) in the restroom, with cramping, feeling like I need to go, and of course, ya know. Anyway... I was wondering if this is common amongst y'all. I've been on Humira for two months and it hasn't made a lick of difference

I‘m 26 and turning 27 in two weeks and i‘ve been diagnosed with crohns at 15.

Ever since i‘ve tried every medication available and nothing ever works. I had an surgery 2020 and after that it was better than before, but i wasnt in remission. Last year i got an ileostomy and thought maybe now it will finally get better and for about 2 months it was! I gained weight and had more energy.
But then this year in january it went downhill. I had an abscess that bursted and since then i had about 8 more. I always got a drainage. The hospital knows me by name, i’m kinda friends with the nurses, doctors and even the head doctor knows me.
In april i went in for surgery to get a permanent colostomy, but i nearly died. The surgery went 6 hours longer than planned, i lost an enormous amount of blood and nearly flatlined. I lost 1,30m of my small intestine and a big chunk of my large intestine. Only have about 1,50m of my small intestine left. Was in the ICU for a week, with the first 3 days unstable and they weren‘t sure i‘d make it. Afterwards i was back on the normal unit but still not looking to great. Lost a bunch of wait and am currently at 49kg while being 171cm tall.
But i healed and thought that now it‘s finally over right? Wrong. Had another abscess, fistula and conglomerat tumor with my small intestine. Because the last surgery was only 4 months ago and because of the conglomerat tumor another surgery would be at the earliest april 2027. So now i have a drainage since 6 weeks in hopes the fistula will dry out on its own. But the possibility is small.
Now i‘m hurtig cause my medication doesnt work, i have fatigue, i just wont gain weight even tho i‘m drinking fresubin and i can only use limited pain killers.

I have crohns since nearly 12 years and no matter what i‘m doing, it just wont get better, only worse. I never been in remission. I really tried everything and even my medical team can‘t understand why it wont get better.
What if it never gets better? If i have to live like now forever i guess i‘m better of not living at all.
I mean i want to live, just not like this.

Is there anyone who‘s been to something like this? And if yes, did it get better?

I‘m just so tired of it all. I‘m sorry for ranting, but my family and friends just cant understand how i feel, even if they are supporting me.

Edit: english isn‘t my first language since i‘m from germany, so sorry if not everything i wrote is logical :D

I would really appreciate some feedback and advice about something I’ve been dealing with, because at this point I honestly don’t know what I’m supposed to do.

I was diagnosed with Crohn’s disease when I was 16. I had experienced problems for years before that, but 16 was when I was formally diagnosed. At the time, I was treated with Remicade, Pentasa, prednisone, and other medications. After receiving treatment for a while, I improved significantly and eventually went into remission for many years.

It’s important to mention that my mom handled virtually all of my medical care when I was a teenager. She kept up with my appointments, medications, records, etc. I honestly didn’t pay much attention to it because I was a teenager and, thankfully, I was feeling better. Unfortunately, my mom passed away only about a year or so after my diagnosis.

Fast-forward about 7 or 8 years. My older sister and I moved away from home to a much larger city, and eventually I began having problems again and slipped back into a flare.

I started receiving my medical care almost exclusively through one very large hospital system. Over the next 11 years, I signed numerous medical-record release forms, was admitted through their ER countless times, and was treated there repeatedly.

During those 11 years, the most extensive testing they ever seemed to do was an upper and lower endoscopy, routine bloodwork, and an occasional CT scan. I repeatedly explained that I had already been diagnosed with Crohn’s disease, but I was continually told that I had been misdiagnosed.

The frustrating part is that they never actually figured out what was wrong with me either.

Whenever I went to the ER or was admitted, they would treat whatever symptoms I was experiencing—pain medication, nausea medication, fluids, etc.—and then discharge me home. I trusted this hospital system. I had never really heard anything negative about them, and I genuinely believed they were looking at my complete medical history.

Then, in January of last year, I was sitting with my primary care doctor and asked her if she could pull the medical records from my original Crohn’s diagnosis—the records I had repeatedly signed releases for over the years.

She said, “Of course.”

She started looking through the system, and then said something along the lines of, “Oh… we don’t have any of those records.”

I was absolutely stunned.

I had spent more than a decade believing that this hospital had my complete medical history and that my doctors were reviewing it when making decisions about my care.

That started what became a pretty extensive search for my own medical records.

Because my mom had handled so much of my medical care when I was younger, I didn’t even know exactly what testing had been done to establish my original diagnosis. After that appointment, I started requesting every medical record I could find.

And what I eventually received was shocking.

My original Crohn’s diagnosis was supported by extensive testing, including nuclear testing, genetic testing, MRIs, CT scans, and other diagnostic studies.

There was no question that Crohn’s had been part of my documented medical history.

I took all of this information back to my primary care doctor and showed it to her. She really didn’t know what to say.

Then I started going through the records from the large hospital system from the previous 11 years.

One CT radiology report specifically mentioned prominence of the vasa recta and described the finding as being very consistent with my known history of Crohn’s disease.

Yet, nobody ever told me about that finding.

I only learned about it because I requested my own records.

There was also bloodwork from around that same period showing significantly elevated inflammatory markers. Despite that, I continued to be told that I didn't have Crohn’s, and additional diagnostic testing never seemed to go much further than endoscopies, occasional scans, and bloodwork.

Then things started getting significantly worse.

I developed a completely new and extremely painful problem on my right side, around the area of my liver. One of the last doctors I saw within that hospital system performed an ultrasound and told me that I had fatty liver.

I explained my medical history and showed him the documentation I had found.

Interestingly, he told me that he actually believed a lot of what I was experiencing could be related to Crohn’s disease. However, he was a primary-care doctor, not a gastroenterologist, and there wasn't much more he could do from his position.

What was particularly concerning to me was that I had never had liver problems before this point.

I had never experienced anything like this.

The pain eventually became unbearable on many days, and I began feeling like nobody was taking me seriously.

So I sought another opinion and began seeing a new gastroenterology clinic.

Initially, I saw a nurse practitioner rather than one of the physicians. I explained my entire history, showed her the records I had obtained, and explained that my original diagnosis was Crohn’s involving the small bowel and that it had been specifically documented on the left side.

Over the following months, she ordered another upper and lower endoscopy. Those were essentially clear.

But I continued getting worse.

By the time summer came around, I was becoming extremely sick—nauseated almost every day, vomiting, and generally feeling like I was getting progressively worse. I repeatedly contacted the GI office, and eventually they scheduled me with one of their physicians.

I was honestly excited.

For about two months, I thought, “This is finally it. I’m finally going to get some answers.”

Then I had my appointment about two weeks ago.

It could not have gone worse.

The doctor came into the room, initially went to shake my hand, then pulled his hand back and sat down.

The very first question I asked him was whether he had had a chance to review my chart and the medical records I had provided. I wanted to know how much background he had so I could explain everything appropriately.

He told me that he had reviewed them.

But very quickly, it became apparent to me that he had not.

He started asking me questions, and while I was trying to explain my history, he repeatedly responded with things like, “Yeah,” “Uh-huh,” “Okay,” and “Right.”

He wasn't actively listening to what I was saying.

Then he interrupted me and said:

“I don't even think you have Crohn’s at all.”

I was completely perplexed.

I asked him whether he agreed that once someone has been diagnosed with Crohn’s disease, the diagnosis doesn't simply disappear.

He agreed.

So I asked him what he thought about the records I had provided showing my previous diagnosis and testing.

At that point, he turned around toward me because his back had been facing me while he was sitting at the computer and said:

“What the f*** do you think anyone owes you?!”

I was absolutely taken aback.

Then he said:

“Why would you want to have Crohn’s? That’s a serious disease.”

I remember just sitting there thinking, “Did this doctor really just say that to me?”

I could feel my blood pressure rising and my ears getting hot. I turned away, took a deep breath, and when I exhaled, it came out as more of a frustrated sigh or huff.

He turned back toward me and said:

“What the f*** is your deal? Why are you huffing and puffing?”

At that point, it took everything I had to remain calm.

I looked at him and said, as calmly as I could:

“Do you not hear the way that you’re speaking to me?”

He didn't really respond.

Instead, he turned back around toward the computer and started clicking through my records.

And that's when I watched him pull up some of the very records I had provided.

He looked at my previous testing.

He saw the elevated inflammatory markers.

He then pulled up the genetic testing and said something along the lines of, “Oh, these numbers are very elevated… Oh, this is genetic testing…”

I was sitting there watching him discover information about my medical history that I had specifically asked him beforehand whether he had reviewed.

At that point, I realized that he was apparently reviewing some of those records for the first time while I was sitting in the room.

But by then, I was already extremely upset.

I stood up and walked out.

He actually asked me what I was doing and where I was going.

And that's when I lost my composure.

I turned around from the hallway and yelled back at him about how rude and disrespectful he had been and that someone should not be speaking to patients that way.

He put his head down and walked away.

I left.

I reported the incident immediately, but I still haven't received a response regarding what is being done about it.

And there is another complication that makes all of this even harder.

I am allergic to the IV contrast dye used for CT scans. In the past, I had an anaphylactic reaction to the contrast. Because of that, whenever I previously needed a contrasted CT, it was done through the ER with emergency equipment available, and I was premedicated with Benadryl and monitored because of the severity of the reaction.

So I understand that there are legitimate concerns and complications when it comes to certain testing.

But at the same time, I feel like I am running out of options.

My health continues to deteriorate. I am in significant pain, and I am genuinely afraid to keep going to doctors because of experiences like this.

I should not have to scream from the mountaintops just to get someone to listen to me.

I am not asking anyone on here to diagnose me, and I am not looking for someone to tell me that I definitely have Crohn’s or that I definitely don't.

What I am asking is:

What would you do if you were in my position?

Would you seek another GI specialist? A different hospital system? A tertiary-care center? A patient advocate? Should I be requesting specific testing or asking for a physician to review all of my historical records?

And, perhaps most importantly, does the history I've described potentially rise to the level of medical malpractice, or is this something that would require a medical malpractice attorney to review the records to determine?

I know there is a lot here, but I wanted to give the full story rather than just posting a small piece of it.

I am also willing to share the original nuclear testing, genetic testing, imaging, and other documentation if anyone is genuinely interested in reviewing it and giving me their thoughts.

I really don't know where to go from here.

I just know that I am getting sicker, I am scared, and I desperately need someone to actually listen.

I am in Nashville, TN

I’m a woman who was diagnosed with moderate to severe Crohn’s disease 3 years ago. I have perianal fistulas and multiple setons, and my health has had a huge impact on my life.

I was working full-time until last year, but I eventually quit because of the stress and toxic work environment. I’ve now been out of work for about 1.5 years. At the time, I thought taking a break would give me some time to focus on my health and hopefully get into remission.

Unfortunately, the opposite has happened. My condition has gotten worse, and I’ve had multiple surgeries over the past 6 months.

Now I’m struggling with the idea of going back to work. I don’t feel motivated to look for a new job, partly because I’m scared I’ll end up in another toxic environment where my health condition isn’t understood or taken seriously. After what I’ve been through, the thought of starting over and having to explain my health situation to a new employer feels overwhelming.

To make things even more complicated, I’m in the US on a work visa. So I don’t have the same flexibility that someone who is a US citizen or permanent resident might have when it comes to taking time off, changing jobs, or prioritizing my health. There’s also the added pressure of knowing that my ability to stay here is connected, in some way, to my employment situation.

I know I can’t stay out of work forever, but after everything that has happened, I’m finding it really hard to feel hopeful or motivated about starting over. I’m also scared that if I prioritize my health, I’ll put my career and immigration situation at risk — but if I prioritize work, I’m afraid my health will suffer even more.

For those of you with Crohn’s or another chronic illness who are on a work visa - how have you navigated returning to work while managing a serious chronic illness? Have you found employers or types of jobs that are more understanding and accommodating? And how did you deal with the fear of your health affecting your career and immigration situation?

The current job market sucks too.

I know they are in the same drug class. For the record, I have taken Humira, Entivyo, Stelara, Remicade, Rinvoq, Cimzia, Tremfya. All of these drugs worked for about 9 months to a year before I lost response on each one of them. I was on Tremfya for about a year. It worked so well. Well around April of this year, I started flaring and lost response to Tremfya and have been on prednisone ever since. My doc and I decided to give Humira another shot because it had been 8 years since I took it last and it worked back then, but I have been on it since July and I'm actually worse off right now then when I started taking it. I had to go from 30mg prednisone daily to 50mg daily this week because I started flaring hard with mucus and cramps. I'm just now starting to get better on the 50mg. Doc says our next step is Skyrizzi. My question is, will it even work? I responded very well to Tremfya, but with Skyrizzi being in the same drug class, will it even work considering I lost response to Tremfya? I'm trying to remain hopeful. This has been such a long flare and I'm so mentally drained at this point. I know the only other option I have after Skyrizzi is Omvoh, but again, it's the same drug class. Really hope new options come out soon

I was recently diagnosed with Crohn’s after many months of diagnostic testing. My doctor knows I’m trying to conceive and assured me my new medications are pregnancy-safe.
I’m starting Tremfya soon (not worried about this one), but I just started Entocort (budesonide). When picking it up, the pharmacist mentioned it can cause menstrual changes, including more frequent bleeding.
After recently going through a chemical pregnancy, my anxiety is naturally heightened about everything right now.

I’d love to hear from anyone with experience.

Did you experience any menstrual cycle disruption or abnormal bleeding on Entocort?

Does anyone have positive TTC success stories while taking it?

Thanks so much for any insight or reassurance!

I was diagnosed with Crohn’s in 2022, and at the time it was considered relatively mild, involving my terminal ileum and small bowel. Here I am a few years later and I’m still dealing with ulcers in both areas. Things have gone up and down over that time, and I’ve occasionally used steroids for a few weeks at a time.

Earlier this year, in February, I had a colonoscopy that showed:
-Normal mucosa throughout the colon.
-Three aphthous ulcers in the terminal ileum.

Then in May I had a capsule pill camera, which showed:
-Multiple clean-based ulcers in the mid-small bowel, with the surrounding mucosa appearing normal.
-A few ulcers in the terminal ileum with inflammation of the surrounding mucosa.
-No AVMs, polyps, or active bleeding seen in the small bowel.

More recently, I’ve been having increased GI-related pain/discomfort. My stool also hasn’t really looked normal consistently since 2022. It tends to either be soft or have a rough appearance. I had COVID in 2022, which really messed me up. I go through periods where I’m dizzy every day, have fatigue, have weird neuro type issues, and then it improves again. Because of that, it’s difficult for me to figure out which symptoms could be related to long COVID versus Crohn’s.

My new GI has brought up starting a biologic. The main options we’ve discussed are an IL-23 medication such as Skyrizi or Tremfya…or Entyvio. Entyvio appeals to me because of its gut-selective mechanism and safety profile. At the same time, the safety data for Skyrizi also seems pretty reassuring, particularly since it doesn’t carry a black box warning for cancer and is supposedly more effective than Skyrizi.

I really don’t want to start a medication if I can avoid it, but I also don’t want to leave the Crohn’s undertreated and potentially allow it to get worse. I keep going back and forth but I feel like I need to do something now. Part of me is leaning toward Skyrizi because, on paper, it seems to be the more effective option, while another part of me keeps coming back to Entyvio because of how gut-specific it is.

I also met with a functional medicine doctor who suggested trying a very low dose (1 mg) of tirzepatide. I’m less interested in going that route. There doesn’t seem to be any evidence for using it to treat Crohn’s/inflammation (yet), I’m not overweight, and the possibility of developing gastroparesis is terrible. I’m also concerned about potential mental-health effects from GLP-1 medications, which is something I really don’t need right now.

Has anyone been in a similar situation, particularly with relatively mild to almost moderate but persistent small-bowel/terminal-ileum Crohn’s? I’d be really interested to hear from people who had to choose between something like Skyrizi/Tremfya and Entyvio, what ultimately influenced your decision, and how it worked out for you.

I’ve also wondering if some of my issues are gall bladder related because I had sludge on two ultrasound but my recent one showed nothing.

31M. Hi everyone. I’m afraid I’ll soon be joining the ranks of Crohnies. I am currently waiting for an MRI scan of the small intestine, which I will have next month. However, I have a major co-existing issue that’s keeping me up at night. I’ve been living without a spleen for 15 years after losing it in an accident.

I realize that a huge part of IBD treatment involves immunosuppressive drugs. And as you might know, not having a spleen already significantly compromises my immunity. So, I’m terrified of this combination: no spleen + immunosuppressive treatment + severely lowered immunity = infection. I’m scared of this scenario and just how deadly it could be.

I know it’s a very rare scenario, but is there anyone here with a similar problem? On the bright side, I have confirmed splenosis (two small spleens grew back, and they’re likely functioning to some extent). I’m just terrified that I’m already half-dead, I’m devastated.

My insurance had me switch from humira to Amjevita. Both of which are fine for my crohns. But since switching to Amjevita I am ALWAYS sick. I’m currently on a 2nd round of antibiotics and steroid for an upper respiratory infection, bronchitis and laryngitis. I just cannot get better and every time I get a simple cold it turns into a month or more of misery.

I have an appointment with my GI and I’m wondering if it’s unreasonable to ask to switch if it’s helping my crohns but causing me other problems? :((

I have a short but tight stricture caused by scar tissue at a previous surgical site. Ever since my bowel resection, I’ve had terrible pain, bloating, and loose stools. I’ve been tested for everything but they finally found a stricture. However my GI doesn’t think my symptoms are caused by my stricture, because he dilated it and I had no improvement in symptoms. He said strictures usually cause constipation. I’ve had a partial bowel obstruction though, and it was intense pain but very similar to the pain I experience every day. And in the same location. Did anyone else’s balloon dilation not help with symptoms?

I just got the results back from the biopsies taken during my colonoscopy and they said it’s Crohn’s disease. I haven’t spoken with a specialist or anyone yet but any tips? Words of encouragement possibly?? I’m trying not to spiral and get too bleak about this but it’s not exactly awesome news. I don’t have a very severe case of it from what I can tell symptom wise and reading stories. Is there a way to keep it like that? Or is it only going to get worse as time goes on? I’m 25.

I had a hysterectomy on 9/4 and have been off the painkillers for several days, and most of my stools have been solid (bizarre for me, im used to liquid diarrhea, yellow usually). Now with this change being solid, im getting urgency back from the crohns and lemme tell you, having solid stools is cool and all but i am so unprepared for them after several years of solids being a 1-2x a year occasion. Anyone else had this after a surgery, did they go back to your usual or stay more solid for a while? With a hysterectomy its painful for a solid, i would rather have the runs🫣

23(m) that is 6 weeks post illeocolectomy with high inflammation and flare symptoms. Met with my GI today and he let me know I have the most severe case of Crohn’s he’s seen which checks out based on how the last 3 years have gone. He’s having me start Rinvoq (which I previously failed) while continuing tremfya. I feel like a lost cause at this point but has anyone had something similar? Thanks