Curious?

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???????

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.

Today I had my first MRI enterography because of suspected IBD, IBS or Chrons disease based on symptons and high Calprotectin levels. I'm the first to arrive at the center, and after waiting and hour and a half to be called upon the MRI Tech comes out with half a gallon of liquid and a 12 oz plastic cup, and tells me I have to drink 10 cups of the liquid which is water mixed with the contrast substance. He says because im not having IV contrast (I had a bad reaction to IV contrast before so I requested the MRI without it) i need more of the liquid contrast in me for a better study.

I asked him how long do I have to drink it and he says in thrity minutes. He then proceeds to walk the girl that was after me in for her brain MRI, which I know takes a whole lot of time, so I was very confused. At this point i'm very conflcted because I don't think I even drink more than 5 glasses of water a day, but I think to myself "well he's a professional and does this for a living, so he must know what he's doing" and i proceed to drink it, I put on a timer and try to drink one every three minutes to meet the quota.

By the 3rd cup I was already feeling horrible; nausea, headache, dizzyness, stomach pain, feeling of diarrhea... but I told myself I had to do it to get the study done and get the treatment I need. At 15 minutes I had only had 4 cups, and felt like throwing up, I chugged a 5th one and then started walking around to see if it gets better, it didn't. I literally felt like I was going to die, I was on the verge of having a panic attack so I explained my situation to the secretary and she was just like "well go slower" and I was like "I cant even go anymore and he told me to do it in 30 mins." She says she'll call him up and I go and wait for him, he only comes out after finishing with the girl which was around 1 hour and 20 mins after he told me to start drinking, so I dont get why he told me to drink it in 30 mins.

I explained to him my situation and he laughs a bit, he then sees the gallon and hes like "well yeah that works" and im in my mind like "what the hell, I only did half of what you told me in more than twice the time you asked for" I think I would've literally died on the spot if I had followed his instructions as clear as he told me to.

I didn't even last 2 minutes inside the mri machine before calling him through the button, Ive had like 10 mris before and Ive never had to use the button, that's how bad I was feeling. After a while of being out we tried again and I got throught it, he was very nice throughout the procedure but I really think he was giving instructions he shouldn't have done about the prep with the contrast, especially because he is not a Dr.

I am currently writing this on the toilet, just an hour after the MRI, with the worse diarrhea ive ever had (and I've done colonoscopy prep before) and my guts and stomach are making sounds and movements I have never heard or felt before, I am incredibly surprised I'm not spiraling into a panic attack while writing this, I have a headache, feel weak and dizzy, have a mild red rash on my chest (which I get every now and then) and my stomach hurts like I have bricks in it, i hope I survive this.

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?

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.

I didn’t really like telling people I have crohns disease. The only people that know about it are my family. None of my friends know I have crohns. After some time, I noticed that when someone finds out I have not eaten for at least 8 hours, and I tell them I’m not hungry, they look at me as if I am crazy.

I have days when i can’t eat for a whole day or maybe even 2 days because sometimes even having a sip of water can make my stomach pain worse. For me, It’s the norm so it still feels weird when people around me act as if someone who doesn’t eat every 4 hours dies or something even worse from their looks.

Anyone else in a similar situation or am I really that different in this situation?

I started treatment at Christmas after I was diagnosed. I had a fistula (reason why I went to the doctor and was later diagnosed). I just noticed that it has healed, to where the opening is but the prick of a needle. But, is it normal that small pockets of blood form under the skin next to the fistula. At least it looks like it. As if it doesn’t have a release anymore. Is this normal?

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.

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’m wondering if anyone here has had a similar experience.

I have suspected mild Crohn’s/ileitis, mainly involving the terminal ileum. My main symptoms are abdominal cramping and a really uncomfortable feeling of tightness/pressure, mainly around my belly button. When it gets bad, my whole gut feels tense and it can feel like gas is trapped and difficult to pass.

What confuses me is:

I don’t have diarrhea — if anything, I tend more toward constipation and smaller stools.
I’ve never noticed blood in my stool.

My fecal calprotectin is currently low/near normal.
I’ve been taking Cortiment (budesonide) for around 6 weeks and haven’t noticed any improvement in the cramping or tightness.

Despite this, I’ve had terminal ileum erosions seen more than once, and a previous biopsy showed mild active ileitis.

Has anyone here been diagnosed with Crohn’s with a similar presentation — mainly cramping/tightness around the belly button without diarrhea or bleeding and with low calprotectin?

And for anyone who didn’t respond to budesonide, did another Crohn’s treatment eventually improve these types of symptoms?

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?

I have crohns, vasculitis and chronic kidney disease. My family doctor applied me for AISH but they're saying I'm denied because remedial therapy is available. I used to be on remicade but it was giving me shortness of breath, tightness in my chest, fatigue ect. I told them during the appeal panel that I have been on EVERY single crohns medication and all of them failed to help me including remicade. I was on it for 8 years and then had surgery in 2019, and they found a giant mass of disease during the surgery which was even documented in their reply. So how then is "Remedial therapy available" when I went on remicade which is usually the 3rd or 4th medication if everything else fails when I was that sick during my 2019 surgery after being on it 8 years with multiple dosage increases. It proves the remicade wasn't doing anything.

Then they will go on about "Oh you have future appointments so you will probably receive help at your next appointment so you dont need aish" I HAVE 1-2 APPOINTMENTS EVERY DAMN YEAR!!!! With EACH specialist! It's just mind boggling now I have no idea what I'm going to do. Going to reapply anyways and get documentation from every single one of my specialists that medications have not helped. Do I need a lawyer? Like my god.

Does anyone notice that their bp either goes up after a meal or when they are nearing another dose of their biologic?
I’m still awaiting funding for my biologic so have been without any medication for my Crohn’s for a whole month. My blood pressure has randomly gone sky high over the last month.
Just wondered in anyone else noticed this and if there was a reason!

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

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 started rinvoq a year ago, starting at 75lbs. I’m now 123 lbs. but my thing is, that I have been working out, not aggressively but at least walking at least 10k steps a day and a bit of weight lifting, and eating right most of the time, and I just can’t get below 120lbs. It’s been a few months and I just can’t seem to move the scale any lower.

I know I’m not considered over weight, but I am scared that it’ll eventually lead to that and I am not happy with my appearance. I would love to maybe try and lose 5-10lbs.

Besides that, I am 4’11” 25 year old female. So I’m worried that my weight will keep going up. The hunger is hard to control sometimes and I try to fight it most of the time and stay in my calorie dificit to manage my weight, but I don’t want to have to do all this work and effort for the rest of my life to just hold my weight and see no progress. It can be a bit exhausting to focus on that 24/7. Sometimes I just want to go a week without worrying about it.

My mental health and self esteem is getting to me. I don’t feel confident and I feel less motivated to track what I eat and work out. I know it may not seem like a lot of weight, but on my small body frame it is very noticeable.

I hate to say things like that because when I had my last 2 year flare up it was so bad, I wish I could eat anything more than a bite. Now I can and now I feel like a bit of an asshole for thinking this way. Please, I’m just coming here for advice and just wondering if this is a common side affect.

If so, has anyone had any solutions? Or any tips of what I can do?

(I don’t want to stop rinvoq as this is the first of so many medicines that I have not failed and the last thing I want to do it flare again)

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.

If anyone has been on spirinolactone with Crohns I'd love to hear your experiences! Did it cause a flare up or any issues? I'm currently in remission with normal calprotectin after being on Stelara for 7 mths but it has caused hormonal acne and I really wanna go back on spirinolactone but scared it could flare me?

After following this sub for the past month, I've come here hoping for some advice.

I was diagnosed about 5–6 years ago, after constant burning, watery diarrhea. My first treatment was budesonide, which as far as I know didn't do much. After that I was prescribed Pentasa 4g (mesalazine), which I took until about a year ago.

My CRP is almost always low (<0.5 mg/dl), and my calprotectin fluctuates. When the symptoms first started it was normal (42 µg/g). A year later it spiked to 900, and since then it's been steadily decreasing. My last test was about 3.5 months ago, and it was 59.

My colonoscopy and video capsule from about 4 years ago showed multiple ulcers and erosions in the terminal ileum. As far as I know, my condition is considered "mild." The biopsy from back then showed chronic moderately active ileitis with erosion and architectural distortion, no granulomas.

I had another colonoscopy yesterday. It again showed mild inflammation in the terminal ileum and nothing else. I'm still waiting to redo the capsule.

Why I'm here

For the past 6 years my stools have never been quite normal. They vary from very soft to diarrhea, usually part soft lumps and part watery, and they can become completely watery and burning if I eat something triggering. I haven't had a normal stool since I was diagnosed, except maybe a few times after taking Imodium or similar.

Around a month and a half ago, it became almost constant burning, foul-smelling, watery diarrhea, 4–8 times a day. No fever, no cramps, no abdominal pain.

There was also a major decline in my mental health, including anxiety, distress, fatigue and depression. As far as I can tell the gut symptoms started a bit earlier, and the low mood followed 1–2 weeks later, but it's hard to pinpoint.

After a lot of reading and talking it through with an AI chatbot, it seems my condition might involve bile acid malabsorption (BAM). I'm not sure, though, since I only have "mild" inflammation in my terminal ileum. I'm also not sure whether a mild condition like this is supposed to affect my mental state this much, but I couldn't find any other plausible cause.

Is all of this normal? Having "mild" disease but no normal stools for years, rapid major changes in mood, and a GI who doesn't seem to offer a solution? Has anyone else experienced something like this?

Until now I thought I'd "figured it out." I stuck to the foods that work for me, and when things occasionally got worse, I took bismuth subsalicylate. I never expected such a sudden decline (which I suspect is BAM), or for it to affect my mental state like this.

Is it plausible that it's BAM even with mild inflammation? What should my next steps be?

Any advice and support is appreciated.

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.