Crohn's Disease Forum » Your Story » remission over? Odd symptomology for Crohn's

02-26-2019, 04:56 AM   #1
Join Date: Feb 2019
Location: Ansonia, Connecticut
remission over? Odd symptomology for Crohn's

Hi there. I was a member on here for a very long time. I was DX with Crohn's about 6 years ago now and have been on Humira for 5. In the beginning there was some confusion as to whether I actually had Crohn's, GI second guessed herself and wondered if my issue was more acute than chronic, but after colonoscopy she determined the old scarring she could view etc, showed chronic. But it always stuck with me that she was unsure and I was going through a stressful time in an unhappy relationship, had financial stress, and about every other. Full time work, graduate school, internship, 3 young kids, and my diagnosis resulted in calling off a marriage (thankful for that now, but then it was tough).

So for the last 5 years I've been able to live about normal. I would have flares here and there, wake up in pain in the middle of the night and bent over. Cold sometimes, mouth pain, fatigue, joint aches etc, but for the most part I've been very healthy, and in a happy healthy relationship.

Never had any surgeries.

About 4 weeks ago now I got bronchitis, I had been noticing that mainly in the morning I had phlegm that isn't explained by any smoking or anything else, but it cleared out during the day so I didn't think much of it. Until one night I got in severe pain all in my muscles and joints, dizzy, and VERY weak. I ended up going to the ER, they were useless. But my dr. the next day dx with bronchitis, I was on prednisone and an anti-biotic and several inhalers.

The problem: For the first time in 5 years I skipped an injection dose upon advisory from my GI and GP.

Can one skipped dose really make this big of a difference?

So since then, even though I resumed my injection, I have been having many old symptoms. I am cold, exhausted, severe indigestion in a variety of ways, last week I had an episode of pain in teh middle of the night where I thought I was being sawed in half and going to die. I almost had my SO dial 911, once it finally passed I was wiped out. Saturday night I had weird sharp stabbing pains to the right of my belly button all night, tons of bloating and acid reflux /heartburn on Sunday, to the point I almost again tried the hospital, it was about to drive me crazy, nothing was relieving it.

And today it's now Tuesday, absolutely blown up like a balloon, feels frustrating to breathe because my stomach is so full and I'm just miserable. My chest still isn't clear and I am dead exhausted ALL the time.

Emotionally I am growing so frustrated and scared. What does this mean? Will it pass? Do I need diagnostic tests? And how will I find the time for those and keep up with my life and responsibilities. I am irritable and uncomfortable, and trying to be graceful.

Anybody else?

Also I feel like I describe so many symptoms that I become discredited by any doctor who looks at me. I assure you I'm having all of them, I try and keep it focused to the main ones or the worse ones, but then I'm afraid they will miss something. And emotionally I never wnated to be here again, but what did I expect.

This whole thing is making me realize I'm still in serious denial of this disease, and it doesn't help that it does not present as typical. It never shows up on bloodwork and many diagnostics. I struggle with invalidating myself, so it's even more difficult when others do it, and I try to just white knuckle it because I am never quite sure if the medical health systems leave you better or worse off.

Lots of anxiety.

Thanks for listening,

03-07-2019, 05:03 AM   #2
Lady Organic
Forum Monitor
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Join Date: Apr 2013
Location: Montréal, Quebec

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Hi there,
how about running a calprotectine test as a fast first step?
Antibiotics can sometimes cause trouble to the GI track... Could it be this?
I'd try to speak with the GI about your symptoms asap, because they seem pretty intense and unusual.
hopefully this episode will soon pass.
''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: Humira
Diet: ''IBD-AID'' : organic food only, Vitamin D + B12 shots
Past meds: prednisone 50mg, 5-ASA (pill, rectal), cortifoam, cortenema, Imuran, Purinethol, methotrexate.
03-07-2019, 11:16 AM   #3
Senior Member
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Join Date: Feb 2013
Location: Ontario

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I'm sorry you're going through this again. Sadly, Crohn's symptoms usually come back at some point. Your symptoms are fairly typical of Crohn's.
I'm no doctor, but you could have your vitamin levels checked. Anemia and deficiencies can make you feel cold and tired.
The bloating and bad pain could be a blockage. If it's bad, ER would be the place to go. For milder pain you could try a liquid diet and heating pads to see if there's relief. A colonoscopy can show if you have a stricture. If your doctors are not helping, can you get a second opinion? Hang in there.

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