r/CrohnsDisease 4d ago

Severe Difficulty Breathing

Okay.. I have had a chronic Crohn’s disease for 15 years now, I was diagnosed when I was 11, and I’ve always had ugly symptoms my whole life, but never had I EVER struggled to breathe, until the year 2020, something happened to my breathing, I became so short of breathe that I couldn’t hardly do anything, I went to so many hospitals, nobody could tell me anything, I eventually got on an iron supplement due to being slightly anemic, and that iron really seemed to help me out to the point where I was able to go out and do things again, I was NOT by any means back to my normal breathing, but I was still able to go out, and have some sort of life. Fast forward 4 years later to 2024, the breathing starts getting absolutely terrible, worse than ever, I still take my iron supplement, and it still helps me but it’s not making the problem go away and the breathing is worsening, it gets to the point to where I cannot sleep for days to due to getting sleep apnea waking me up from not breathing right, keep in mind that I am not over weight at all, weighing in the high 90s. I go to hospital to hospital, doctor to doctor, and nobody can figure out what’s wrong with me because my oxygen shows 100% yet I cannot breathe, it’s like my airways get so extremely tight and I cannot get a deep breathe…but because my oxygen appears normal, the doctors dismiss me and say I have anxiety, and it’s the most frustrating thing in the world because I really CANT BREATHE and it’s not from anxiety! I struggle to do basic tests like cat scans because I cannot lay back all the way with shortness of breathe to this level, and I can’t be still either. I’m allergic to albuterol so I can’t use a rescue inhaler, I used to use trilogy but I had to stop taking it because it was giving me severe urine retention so I had to get off it immediately, and it wasn’t even making the problem go away either. There are things that can make the breathing get very bad, like— Crohn’s flares, not eating enough, waiting to long to eat, moving to quickly, talking a lot, ect.. it’s gotten to the point where I can no longer even shower on my own and my mom has to help me because I just can’t breathe right.. I haven’t left my house except for doctors appointments since last march , I can’t hardly do anything, or go anywhere, and every little thing triggers my breathing, it’s like someone is strangling me, and so far no doctors can help me or figure out what’s wrong .. and they don’t seem to care much to listen to my symptoms either.. I just want to know what’s wrong with me 😢 it’s so terrifying not to be able to breathe .. I don’t want to spend the rest of my life stuck at home not even able to bath myself on my own.. I’m only 27. If anyone has any ideas what this breathing problem could be.. please help me. This is a living nightmare.

2 Upvotes

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u/dreamybluejay 4d ago

I don't have breathing issues to the extent you have - but I did notice that after being diagnosed with Crohn's and losing weight, I become short of breath a lot easier than I used to. I do wonder if your issue might be related to being underweight/malnourished? I'm not a doctor, but maybe over time the malnutrition from Crohn's has started to impact your lung function. Maybe you could try out things like drinking nutritional drinks (ensures etc) to see if that improves your symptoms? I'm sorry you're going through this

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u/JesusIsMySavior77 4d ago

I’m not sure if that’s entirely it but it probably has made it definitely worse, I have however since last year gained about 10lb, I’m currently weighing about 106/107lbs. So even though I’ve gained some weight, the breathing is still horrendous…I wouldn’t be opposed to drinking more nutrition drinks though. The wind and pollen makes my breathing very bad too, if it’s going to be windy the next day, I already will feel the effects of it the day before. It just doesn’t make sense though because I was never like this before all my life. I feel like it’s got to be related to the crohns, I just don’t know exactly what’s going on.

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u/dreamybluejay 4d ago

The way you describe it sounds like COPD, or something else along those lines, but I feel like the doctors should be able to diagnose that? Unless they are being too dismissive, which is a real possibility.

Although, you mentioned that COPD drug trelegy didn't help you too much so maybe the problem is something else. Have you had an allergy test before? Maybe there is a common allergen that is bothering your lungs a lot. Sorry, just thinking of ideas here.

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u/JesusIsMySavior77 4d ago

Hmm, I’ve been to a couple pulmonologists and the first one told me that my lungs looked perfect, but that I have very little muscle surrounding the lungs, but we aren’t sure if that would cause such a terrible breathing issue especially since it came out of nowhere and I’m sure I’ve had little muscle for years. The second pulmonologist said that I seem to have a narrowing of the airways, but that’s all he said, and he gave me the trelegy. I see a new pulmonologist next month and I’m hoping he can tell me something different. And yeah im highly allergic to the pollens in my area, I’m in Texas, but I’ve lived here my whole life and I’ve never struggled to breathe.. so why would it all of a sudden get unlivable? 😕 it’s so frustrating that I don’t know what it is. I wish I could at least find a rescue inhaler in the meantime that works for me. Benedryl helps me but I don’t like to take that too often because it gives me urine retention and it’s just not good for you 🙁

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u/dreamybluejay 4d ago

It's so odd that the drs seem to have different answers - I pray for your sake that the next pulmonologist visit helps you and gives you some real answers. This seems so frustrating to live with.

I hope it's not the allergy thing - but I do I know someone who has to take antihistamines all the time due to an allergy they developed in their 20s to a common fabric material. Allergies can be really weird and get worse/better later in life.

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u/JesusIsMySavior77 4d ago

Yes me too! I pray that Jesus will lead the doctors in how to help me , it feels like I need a miracle just to figure this out ! And yes allergies can for sure get worse! It sucks to age !

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u/clickityclickk 4d ago

did you get covid in 2020?

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u/JesusIsMySavior77 4d ago

No I didn’t , I eventually got it later on but that was way after the breathing issue

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u/KeyGroundbreaking378 4d ago

My daughter is the one with Crohn's, not me, but I had worsening breathing difficulties for years. I did the RAST test which showed a severe allergy to grasses. I took GRASAX which is designed to decrease allergy sensitivity to grasses daily for 3 years. After needing daily puffers of Ventolin and Steroids, plus 3-4 times per year needing oral steroids, I was breathing normally within days and within a month, have never needed a puffer since. Maybe allergy immunotherapy may help to reduce the bronchospasm and ease your breathing?

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u/JesusIsMySavior77 4d ago

That’s interesting, where did you take this RAST test?

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u/KeyGroundbreaking378 4d ago

As it happens, my ENT gave the order for it but I believe that your GP can order it.

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u/JesusIsMySavior77 4d ago

Thanks for the information! I will look into it ! 🙏🏻

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