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Crohn's Disease Forum » Your Story » Waiting for biopsy results


07-25-2015, 05:15 PM   #1
NeedleworkKer
 
Join Date: Jul 2015
Waiting for biopsy results

Hi all!

Not sure yet if I belong here or not yet. Long story to introduce myself.

I've had vague digestive issues my whole life. Many doctors have said "sounds like IBS" without any investigation. I had some bleeding at age 27 and was diagnosed with diverticulosis after a barium enema. But nothing more was said about that or checked again, since the bleeding stopped by then. On my own, I made more of an effort to reduce NSAIDS. I took a lot regularly after severe TMJ started when I was 14, with many headaches and migraines and then a car accident in my 20's that left me with fibromyalgia/myofascial pain syndrome/chronic fatigue syndrome and nerve damage to my arms/hands. I had noticed that my stomach started to hurt with Advil and after some reading, thought there was a good chance it was damaging my gut.

I use deep tissue massage for as much pain control as I can now. I also changed my diet a lot, figuring out with an elimination diet to cut out milk, red meat and pork and reduced wheat, especially white flour. I have not eaten red meat or pork now for about 15 years. I since discovered/developed a soy allergy and palm allergy, so cut out those. After Increasing my wheat (cheap food) a few years ago, I got a lot sicker and my doctor told me to go gluten-free without testing me for celiac first.

Staying away from those things made improvements each time...and unfortunaltey, sudden weight gain, but then going gluten free made a big difference, so I thought I had things figured out - I was either celiac or non-celiac gluten intolerant. Then a couple years later, I was having a lot of problems with (early) perimenopause. I developed silent acid reflux and kept feeling like there was something wrong on my right abdomen. Then more trouble with BMs. It often feels like they are coated in glass, even when moving well. And have had a couple impactions, that I was able to resolve myself, but this led to finally going to a gastroenterologist because I can no longer have BMs without my feet up on a footstool for a more relaxed position...again even when moving OK.

My brother was diagnosed with Crohn's about 12 years ago. (I don't know if he is on here or not.). I've reminded doctors a lot, but we always decided to investigate GYN issues for my abdominal and digestion issues first. I think probably because I am overweight, so we didn't think I would have an IBD or even severe celiac. But the gastroenterologist wanted to check out the acid reflux situation, so said he could do a colonoscopy at the same time...like he was doing me a favour.

So, a few days ago I had my first colonoscopy and gastroscopy. Unfortunately, the sedation didn't work well for me. They didn't/don't know I woke up during the colonoscopy when I heard the doctor saying "it is a good thing she came in when she did!" The nurse was asking "what IS that?" He said he didn't know but reminded her of my brother's history of Crohn's and said it could be related.

Now, I remember a lot more, including the full upper GI, where I was way to awake and days later am still recovering from the stress of clenching the mouth guard and retching through the whole thing. (I have noticed people complaining of jaw issues after this, and wonder if they were awake enough to do this, but not awake enough to remember....I was told I wasn't going to remember anything)

From the diagram they gave me, the big mystery stuff, (Which I think was a lot of white lumps I saw him poking at for a biopsy - I looked at screen, but didn't have my glasses to see clearly), was in the terminal ileum and there were 4 polyps removed from the cecum. I don't know yet if there were other biopsies in the colon, but there were multiple ones in the upper GI...one being a celiac test. I ate gluten for 4 weeks before the test, to have a possibly accurate celiac test, after being gluten-free for 4 years.

Two more weeks to get the pathology results on everything. I had thought there was a chance of something....but was thinking likely celiac. Not something that surprised the doctor and nurse.

Now, my temperature has just been a little elevated the last few days and I have some extra pressure and discomfort on the side where everything happened. So far, I'm hoping that is normal, although this is day 5 after the procedures. I'm keeping an eye out for temperature spikes and feverish feelings or more severe pain to go to the ER if there is a bad turn. I am so used to a lot of pain and trigger points from the retching shooting everywhere, it can be hard to tell what is my normal.

So, anyways, I know they found *something*, but have no idea what yet. And, even if the mystery stuff turns out to be nothing, with 4 polyps in one area at age 43, I expect I could be getting really used to colonoscopies in the future, so I've been reading here about tips for that kind of thing too.

Ker

Last edited by NeedleworkKer; 07-25-2015 at 06:05 PM.
07-25-2015, 05:22 PM   #2
NeedleworkKer
 
Join Date: Jul 2015
PS. I had genetic testing for celiac risk, since I was gluten-free and have a 1:35 risk.
07-25-2015, 08:33 PM   #3
teeny5
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Join Date: Jul 2008
Location: California

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Sorry to hear you had such awful gastroscopy and colonoscopy experiences. I never have remembered the procedure, but did feel pain each time.

Let us know how the biopsies come back. When is your follow up appointment? I hope they start you on treatment soon. Sending you HUGS.
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08-11-2015, 06:51 PM   #4
NeedleworkKer
 
Join Date: Jul 2015
Good news. The biopsy area didn't show Crohn's. He said it was just "an irregularity" (whatever that means), in the terminal ileum.

He said one of the polyps was large and at high risk for turning into cancer, but we got it in time, so very good I went in when I did. So at least my brother's Crohn's history got me in for screening several years early to catch that!

Medium hiatal hernia, no surgery required. So, I just go back for colonoscopy in 2-3 years because of the polyps.

No celiac, but he also said you don't need to eat gluten for it to show up on a biopsy or in blood tests, so I'm suspicious of his expertise in that area since this contradicts everything else I've seen. But I ate gluten for four weeks before the biopsy on the advice of my family doctor, so it is probably accurate....and it is non-celiac gluten sensitivity or another food allergy that we have missed.

So, I don't expect I will be posting here again. Fingers crossed.

Thanks everyone and best wishes!
Ker
08-12-2015, 06:31 AM   #5
teeny5
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Great news Ker!
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