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Years later, I am still without a proper diagnosis.

Hi everyone. I have not posted on here since I was 18, and I'm now 22. I have some new information to share and hopefully someone has some sort of advice for me. To make a long story short, around age 7, I started having GI issues. I saw a gastroenterologist and they did a few tests. I never got a diagnosis. Fast forward to 2014, my symptoms escalated. I saw a new pediatric gastroenterologist and within my second visit, he wanted to scope me. I had an upper endoscopy and colonoscopy. My colonoscopy showed an area of slight inflammation and he took a couple biopsies, which came back normal. Around 18, my symptoms included abdominal pain, abdominal cramping, crazy bloating, nausea, sometimes I was repulsed by food, mostly in the morning, constipation and diarrhea, bloody mucus or just mucus or blood by itself in my stools, gas, frequent and sudden urge to go, feeling like I still needed to go when I can't push anything else out, frequent burping, bouts of hemorrhoids and fissures, feeling weak and fatigued all the time, mouth ulcers, and just a general unwell feeling. My 19 year old brother was diagnosed with Crohn's when he was 12 or 13, and I have two aunts with Ulcerative Colitis. Since my last post here, I have been diagnosed with Ehlers-Danlos Syndrome - Hypermobility Type and POTS (Postural Orthostatic Tachycardia Syndrome).

Here's what's been going on with me for the past 2 years or so.

First of all, between 18-21, I lost over 90 lbs, by choice. I was quite overweight. I am now at a healthy weight and BMI range. I am severely constipated. I am usually only able to have a large bowel movement with the use of laxatives, but even those sometimes don't work. I try to limit usage to 1-2 times per week. I typically have bright red blood when I wipe and/or in the toilet, and still have mucus occasionally. I am pretty much always bloated, I get random bouts of nausea sometimes, gas, urgency to go to the bathroom and if I don't go right away, the urge disappears. Sometimes I feel like I have to go and I end up just passing gas and that's the end of that. I get random redness and burning on the inner corners of both eyes. Once or twice a month, I get severe headaches that are possibly migraines. I also get weird spots on my left leg that my dermatologist said almost look like small vessel vasculitis, but we won't know until a biopsy is done. They appear very randomly so it's hard to predict when I'll get a diagnosis on that. I also get pretty severe mouth ulcers at times. Also through blood work done by my dermatologist, I found out I have a zinc deficiency which is odd to me because I eat pretty much everything that contains zinc. I am still feeling fatigued and generally unwell, but that also happens as a result of EDS and POTS.

I just went to a new gastroenterologist for the first time in many, many years this past Thursday. I gave her a sheet summing up all of my concerns. She said she thinks I just have chronic idopathic constipation. I never mentioned my history with diarrhea and constipation, because I honestly forgot I had diarrhea until I signed into here. For the time being, until my follow up, she wants me taking Miralax daily and increasing my dosage every 3 days. Since Thursday, I have had a few very, very small bowel movements. It's just little skinny pieces, nothing very noteworthy. I feel extremely heavy and bloated, and she told me to refrain from any other laxative usage which has been tough because of the discomfort I'm in. She said if the Miralax doesn't really help, we'll go from there, but I'm not quite sure what she meant by that. I also showed her some photos of those spots I get on my leg, and she agreed with what the dermatologist said and thinks it could be small vessel vasculitis.

It's also worth mentioning that my fiance passed away in May of 2019, and I haven't noticed much of a change, if any, in my symptoms. That leads me to believe that none of this is stress related.

Before I finish here, I wanted to mention some old lab results I dug up in my online health portal.

I had a fecal calprotection test on September 19, 2014. My result was 68, and the interpretation states that that's slightly elevated and to retest in 4-6 weeks. I was never retested.

My C-reactive Protein was tested on October 8, 2013 and it was 0.94 mg/dL, with the reference range being from 0.05-0.30 mg/dL. It was also tested on June 5, 2015 and it was 0.37 mg/dL. It has not been tested since.

Has anyone had similar symptoms to me? Previously having constipation and diarrhea, and then only constipation? I feel like I'm hitting a dead end here.
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my little penguin

Staff member
Miralax takes aT least 3 days to start working
Which is why you are increasing on day 3
Large blocks of stool build up and then loose stuff (diarrhea) slides around it hence the constipation diarrhea cycle
Laxatives repeat that cycle since it gets built up
is different since it softens stool by adding water to it
Bright blood is typically from the rectum
Constipation can cause that

Fecal cal below 120 for most labs is the cutoff
Crohns flares are in the thousands

Miralax will need to be used daily for a long time to re train the bowel

Ds has crohns -dx at age 7
And has been on daily miralax since (age 16)
His crohns was confirmed by Biopsy

vasculitis is treated by rheumatologist
That might be your best bet since some other disease can cause mild Gi issues but not necessarily crohns per day
Hi my little penguin,

Thank you for your response! I guess all I can do for now is follow my current gastroenterologist's instructions and go from there. I'm so frustrated, which is nobody's fault. I know these things can be difficult to diagnose. I just find some of the symptoms I have odd - such as the eye issues, skin issues, and zinc deficiency. I went to a rheumatologist a few years ago and Sjogren's syndrome was ruled out.

my little penguin

Staff member
Eye skin and vasculitis rashes would be the rheumatologist area
Worth revisiting
Since it’s been a few years
Sjogrens isn’t vasculitis related
The calprotectin results of 68 are nothing to get stressed about, i have recntly had results in the THOUSANDS.

I do hope you get a resolution soon, the uncertainty can be terribly frustrating