u/Nar1117

Hi all,

Like many reading this subreddit, it took many years for me to be diagnosed with my specific flavor of SpA. I am 36 years old, male, and I grew up with a diagnosis of Crohn's disease. I was diagnosed with Crohn's when I was 12, and I was in and out of the hospital with flares until I was 17.

Flash forward to 2022. I had been off of any treatments for crohn's for 10 years, and I was living my life successfully. I was an ultra-distance trail runner, I had been a cyclist for a long time, and through all of this I didn't have any relapses of Crohn's at all. I legitimately thought it was gone.

I got Covid in June of 2022, and all of a sudden I was experiencing injuries and issues with my joints. First it was intermetatarsal bursitis in the left foot, then left ankle swelling for no reason, then knee pain and back pain.

From 2022-2025 I was a spectator of my own physical ability's disappearance. I started having bad TMJ issues, upper back (cervical) pain, hand swelling, bilateral foot swelling, and eye problems. It really felt like I was falling apart, at times, and I never once considered my Crohn's could be implicated.

It wasn't until the same bursitis I had gotten used to in my left foot showed up in my right foot that I started looking for a bigger solution that would explain more than just foot pain. I had a good talk with my orthopedic doctor, and she referred me to a Rheumatologist. I was lucky to get into the Rheumatologist within about 2 months, and she listened to my entire story and diagnosed me with Enteropathic Spondyloarthritis. I'm currently waiting on an MRI to find out if the back pain I've lived with for a few years represents Axial SpA, or whether my disease is primarily peripheral.

So here we are - I'm HLA-B27 negative, which I understand is actually the common presentation for IBD patients. My ESR and CRP have always been normal, even when I was a kid. None of my biomarkers are out of range, and yet I can't even do 10% of what I used to be able to do.

Some days I can hardly walk around the block with the dog, and other days I feel like riding my bike. Some days I have severe pain in my legs and feet when I get out of bed, and other days I feel somewhat normal.

My athletic background came with the lived experience of injuries that heal, fatigue that improves with rest, and musculoskeletal pain that can always be attributed to what I did yesterday. And for the last 4 years I've been operating under those assumptions. I didn't connect all of my symptoms until the right foot started to deteriorate.

Are there others like me out there? IBD-first, but in remission, and with predominantly peripheral symptoms, and HLA-negative? If you have any of my same experience, I'd love to connect. I still don't truly feel like I deserve biologic treatments, even though Remicade is what got me into remission with Crohn's. I am in this weird place of my diagnosis where I kind of want to have axial involvement visible on the MRI so I can connect more easily with some of the stories I've read here. My case doesn't feel as significant as many of yours, but I have to remind myself that I can't do what I used to be able to do, and that deserves treatment. I can easily gaslight myself like this into oblivion, so I'm reaching out to see if there are others like me. I'm sure there are, and I'd love to share stories and experiences!

I'll be starting biologics in a few weeks (not sure which one yet), and I am hoping to be able to come back to this thread with a big "edit: I'm better!" addition, but for now I'm in the waiting room.

Thanks to all who share - I do feel connected to this community just from reading stories, and that's one of those things about the internet that still gives me hope.

Hi all, I'm looking for some advice/anecdotes, similar stories from other Crohn's patients.

I was diagnosed at age 12 after a colonoscopy, and I'm now 36. My original symptoms were anemia, blood, severe cramping, diarrhea, fatigue, etc.. all the usual stuff.

The colonoscopy showed deep ulceration in the descending colon, cobblestone pattern, and I had been bleeding internally for a few months. It was pretty bad, but luckily I avoided surgeries.

I spent my life from age 12-17 in and out of the hospital with flares. We tried lots of medications, and I settled on Azathioprine, asacol, and a few others here and there. I did try remicade when I was a little older. By the time I was 18 or 20, I had been in clinical remission for a few years, and my symptoms had all but disappeared except for the diarrhea. I asked my docs if I could taper off of the drugs and they said "we don't recommend it but you can if you want." So being a dumb 20-something guy, I tapered off the drugs and kept using immodium for the diarrhea. I had been using immodium as my sole drug for treating Crohn's up until just a few years ago.

I honestly thought my Crohn's had disappeared because I had a colonoscopy in 2016 that showed no signs of Crohn's, and all the biopsies were clear. The only thing abnormal was a 4cm cecal adenoma (polyp), which was removed. I was 27 at the time, and polyps at that age are pretty rare. But the GI told me there were no signs of Crohn's, so I kept on living my life without worrying and without any symptoms.

Fast forward to 2022. I caught COVID in June of 2022, and later that year I started having issues with my feet - intermetatarsal bursitis and joint pain. Then I started having more problems outside the gut:

• canker sores, almost constantly
• joint pain and swelling (similar to rheumatoid, but not as debilitating) - both hands and both feet will swell up, sausage digits, stiffness, pain in the morning for a few hours, etc..
• fatigue and loss of appetite
• occasional bloody stool
• TMJ, jaw pain, and gum sensitivity
• erythema nodosum (deep sensitive bruises on the shins)

I treated all of these problems as separate issues. I went to a sports specialist for the bursitis in my foot (which actually became an issue on both feet out of nowhere). I went to an orthodontist to get my jaw fixed (currently doing invisalign because my teeth got fucked up). I chalked up the fatigue and loss of appetite to my work situation and stress, I explained away the canker sores with the coffee I was drinking, and didn't care to treat the erythema nodosum because I thought it was just a bruise that wouldn't go away.

Anyway... I realize now that I'm a dummy, and these can all be explained by my "dormant" crohn's.

So I'm getting a colonoscopy in two weeks, and I'm seeing a rheumatologist in August to address the other issues.

I was living in denial for so long, I've even gone so far as to get all my medical records dating back to 2002. I have the original diagnostic material. The doctor's notes explain how damaged my colon was, how much the disease had progressed, and how my treatment was going.

I definitely HAD crohn's, but all my current symptoms and issues are outside of the intestinal tract. Possibly triggered by COVID and a lack of medication for the past 15 years.

So question for everyone reading is - has anyone had a case like this? Seemingly moderate-to-mild Crohn's that "kind of went away", but then came back later in life? Even after stopping all drug therapies? And does anyone else have a history of Crohn's with no current GI symptoms but almost all extra-intestinal symptoms?

Just looking for similar stories so I can re-calibrate my expectations. Fingers crossed that my colonoscopy in a few weeks is clear. Thanks in advance!

Hi everyone, I'll try to keep my story short... I'm looking for some sanity checking (and I probably deserve a slap on the wrist), after discovering that a lot of my health issues for the last 4-5 years are a result of me being an idiot and not staying on treatment for my Crohn's.

I was diagnosed in 2002 when I was 12. I had severe internal bleeding, 1/3rd of my colon was in rough shape, and my pediatric GI diagnosed me with Crohn's after a colonoscopy & biopsy. I was put on Azathioprine and Asacol, plus Pred, which was the cocktail of drugs until I achieved some type of remission by the time I was 17 or 18. Luckily I did not have to have any pieces of me removed.

I lived a normal-ish life through college, and since I thought I was healthy enough I asked my docs if I could try tapering off of the Azathioprine. They said sure.

I went off of Aza, but kept taking immodium all through college and beyond because the loose stools never really went away.

In the last 5 years, basically since Covid, my health and physical abilities have deteriorated. I used to be a long distance trail runner. I can't do that anymore. I used to go to the gym, can't do that either. I used to be able to focus more easily at work, and that's become a struggle.

Here are a few things I'm dealing with that, I realize now, are probably all related to my Crohn's rearing its ugly head:

• In 2022, a month or two after having Covid for the first time, my left ankle swelled up for no reason, I could barely walk for a few days. The swelling went down, but ever since then I've been struggling to treat intermetatarsal bursitis. I've worked with a physical therapist, a podiatrist, and finally an orthopedic sports specialist. No real progress, and just a couple months ago I started feeling the same bursitis on my right side. Coincidence?

• Near-constant experience of canker sores. Sometimes 3-5 big ones at a time.

• TMJ & tooth pain - currently undergoing invisalign to treat my out-of-alignment teeth, which started really becoming a problem like 3 years ago. Constant sensitivity & pain.

• Brachioradial Pruritis - a skin disorder characterized by intensely sensitive itching on the forearms and hands. If I don't use lidocaine cream immediately upon feeling an itch, I'll likely scratch the skin away during my sleep and have a wound to cover when I wake up.

• Nose bleeds - maybe every 4-6 weeks I'll have a period of 3-5 days where I get a nosebleed. It can start with a trickle or a fountain, and without warning, independent of the moisture in the air.

• Random blurry vision and/or eye twitching - there was a period of time in late 2024 when my right eye was twitching 24/7 for 3 months. I finally started using eye drops and that helped some. Sometimes I'll get blurry vision, as if I can't clear my eyes. Eye drops usually help, but it comes and goes regardless.

• Lower leg neuropathy & motor control - this one is tricky because I broke my Left ankle in 2017, so that leg has its own story anyway, but similar to the bursitis, I have a lot of trouble with my arch, my toes go numb, the outside of my leg goes numb, the fascia gets really tight and cranky, and I have just lots of trouble with mobility and strength. It's the same on my right, but maybe only 30% the magnitude as the left.

• Foot swelling / Hand swelling - I wake up with slightly puffy hands, and sometimes both my feet will be swollen as well. It hurts to move around in the morning. My feet swell up throughout the day if I don't move around or go on walks. Elevating them helps, but the stiffness remains constant.

Note: I don't have any obvious "classic" symptoms of my Crohn's disease right now. I have a few food sensitivities (onions, mussels, clams) that cause a reaction, but I don't have constant diarrhea, pain, or blood.... except I do have diarrhea sometimes, and I do see blood in my stool sometimes, and I do have painful cramps sometimes... but those are all seemingly transient issues.

...I'm listening to myself read this as I type it out, and I think I've been gaslighting myself.

Anyway. After working on this whole foot bursitis & ankle mobility issue, the orthopedic specialist and I had a long chat about my medical history. And that's when the Crohn's came up again, and the chips started to fall.

She referred me to a rheumatologist, but it's an 8-12 week wait (from April 24th). I also have a colonoscopy scheduled for June 19. So hopefully I'm going to get the care I need.

But in the meantime - I'm not crazy, right? Many, if not all of these symptoms, can be related to or cause by Crohn's, yes?

I feel like a huge dummy for ignoring this disease for 15+ years. In my defense, the pediatric team I had when I was a kid mentioned to me a few times that in some cases, patients "grow out of" Crohn's, and it never comes back. I think I completely internalized that concept when I went off of Aza, and decided that was me.

I'm hoping they are wrong, because if all these problems can be addressed by getting on the right drug, I'll be a happy camper.

Please share your thoughts! I know I'm a dummy, but you can share that thought again as well, I probably need to hear it.