How I’ve Kept My Sanity: Crafting Through Misdiagnosis… (Part 1)

I haven’t uploaded, or updated much lately, but things have been a bit hectic, and I have been a bit tired. I just wanted to let you all know… I’m still plugging along; I’m just doing it at a slower pace these days. Which is quite the bummer… I’m used to doing things quite efficiently, and with full force! At one point I did make over 100 quilts in 3 years.

So let me tell you why I’ve been down and out for a bit. I have Crohn’s, and it was misdiagnosed with a Crohn’s flare up, when it was a bacterial infection that got overlooked… and it was overlooked several times… by multiple doctors…

About 4 months ago I went in for a colonoscopy for suspected Crohn’s disease, as well as a procedure for draining an abscess. I went in for the procedure, and was diagnosed with Crohn’s and had 2 drainage stitches put in my bum. Well, I got Strep in the hospital… That was the first problem. I took some antibiotics, and it went away.

I informed the surgeon, and she didn’t look for any other complications. I figured it happens, and now I need to focus on healing. The problem was: I wasn’t healing. My drainage stitched were enflamed, and even bleeding at one point. My surgeon said, that happens from time to time, and it’s normal. A couple days later, I saw the gastroenterologist she recommended for Crohn’s, and he prescribed a powerful immunosuppressant, however, he didn’t do any baseline diagnostic blood work. The downside of the immunosuppressant he prescribed is it lowers your body’s ability to fight infection. He did test for TB and Hepatitis, and both of those came back negative, but he didn’t order any other blood work. Unfortunately, that means there is nothing to compare with my current blood work.

Had the gastroenterologist done diagnostic blood work, it probably would have shown that I had an infection. An infection I most likely got during the colonoscopy. Once again I see the surgeon. I’ve had these drainage stitches for about 8 weeks, and they are not healing, and are pretty uncomfortable. I’ve had diarrhea since the colonoscopy. I even ask, if something could have gone wrong during the colonoscopy. She said it was most likely a Crohn’s flare. Even though, I had never had anything happen like this in my life, she said it was a Crohn’s flare, and I should inform the Gastroenterologist. I asked if I should see a different surgeon, if this is too far out of her capabilities, having 2 different autoimmune issues, I know a lot of doctors don’t have experience with them. She says she is fully capable of treating me.

I did inform the GI doctor, and he prescribed another immunosuppressant, with blood work to be done a week after I started the second drug. My hair starts falling out at this point. I’m not sleeping well. I feel like crap. My blood work comes back and nothing looks too out of the ordinary. The secondary set of drugs make me very nauseous. It’s surprisingly difficult to do anything when you constantly are dry heaving. I figure, this can’t be normal, something is wrong, and I go see my primary care provider.

Thank god(dess)(s)(es), she agrees something is was off! She orders a battery of testing. I was stuck in the hospital for hours! She got me in with a new Gastroenterologist. My new GI = amazing! Guess what… I didn’t have a 12 week long Crohn’s flare… I had a bacterial infection. A simple antibiotic was all I needed.

Not only was I misdiagnosed, but my misdiagnosis was also mistreated. Two doctor’s who didn’t know what they were doing, and somehow managed to severely alter my whole life. If only one of them had said, “Hey, I’m not familiar treating patients with autoimmune issues, and I’ll find you a doctor that does.” I could have skipped a lot of grief.

My surgeon apologized. She said she learned quite a bit from this, and was very sorry I was the person she had to learn it on. Well, an apology doesn’t make my friends and family not worry about my health. It doesn’t make my best friend un-cry. It doesn’t make me un-miss by best childhood friend’s socially distanced outdoor wedding. (Which looked amazing by the way.) It doesn’t undo 3 months of stress, and missing work, and feeling like crap. It just doesn’t quite do it for me.

So now, 13 weeks, 5 grand of medical bills, and with less hair than when I started, I’m starting to feel normal again. I still have Crohn’s, but it’s manageable. My prostate is enlarging, and my bladder wall is thickening most likely due to the drainage stitches being inflamed for so long. Hopefully that will go away now that my drainage stitches are healing, and hopefully they can come out in the next couple weeks/months.

So that’s why I haven’t made much lately. I’m finally starting to feel like I can get back to making things. Thank goodness for crafts… otherwise my sanity wouldn’t be in tact. I’ll admit… it was touch-and-go for a while.

Thanks for listening to my rant. I’ll write the second part of this along with some of the pieces I did mange to do while being sick.

Wish me luck!

4 Comments

  1. Wow sounds like you have really been through the ringer. I was misdiagnosed saying I had Ibs for years when it was crohns. But guess u had the flip side where they blame it on crohns and dismiss it as anything else. Sorry you had to endure all that, hope things are looking up somewhat for you

  2. Mbl says:

    Hope to see you soon. Make sure you feel better before you start in heavily with activity.😘

    Come see your work at our fall opening.
    10-10-2020

  3. Tina Xanos says:

    I found out the hard way that you need several opinions before accepting a serious diagnosis that requires serious treatment! I went to the doctor for a routine exam and he diagnosed me with Raynaud’s Phenomenon and prescribed mega doses of vitamins to improve circulation. I took them and it felt like a mule kicked me in the chest every time. At one point, my employer called an ambulance. My pulse was 165 and I had tachycardia! I lost 20 lbs. In 1 month and was breathless all the time. I couldn’t sleep more than 2 hours a night. I went on disability for 8 months! My doctor’s solution was valium. I threw the prescription on his desk and never saw him again.

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