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Support? Help? An I in the right place?

All my life I have experienced stomach issues. As a small child the doctors thought I was lactose intolerant and had celiac disease. Later it turned out I had neither but I was still suffering symptoms. My entire childhood and high school years things would "flare up" and I'd be down for the count.

At the age of 16 I had the worst experience than I had ever had. I was hospitalized in our tiny town, had a ton of tests run, and still no one could give me answers.

I tried to move on with my life. It was hard to hold down a job with being sick and also depressed. Fortunately at the age of 25 I met the love of my life and we married quickly before he left to Afghanistan for a years deployment. On the day he left we went to my doctor and found out I have polycystic ovarian syndrome (PCOS) which in my case has resulted in infertility.

The next big blow was after my husband was already overseas. I joined a gym to hopefully help lose weight that my body holds into in PCOS. That was a bad idea. I got sick and sicker and it wouldn't stop.

What has followed have been so many tests I can't even venture to quote a number. Several GI doctors said it was in my head, that I needed a hobby and to also drink papaya juice. WTF indeed.

So here I am, 28 and unable to hold down a job. I finally found a Dr who is amazing and has run the gamut of testing and stool samples and gallons of blood and hospital stays and so much radiation I should be the hulk by now. Still no answers.

Thankfully my GI was willing to say this was beyond her scope of understanding. So she sent me to Virginia Mason in Seattle. There they immediately did the pill cam. Immediately there was a problem. The pill cam did not move an inch after I swallowed it. That evening I could feel it trying to go into my intestines. Now that it is still inside of me I am suffering constipation, more than normal pain (I take too many opiates as it is) and the camera is still inside at the last check. I'm going in for an xray tomorrow again and if it is still there I am hoping we can surgically remove it and alleviate this added complication.

Am I overreacting? I'm almost never constipated, I eat almost an entire liquid diet, so no BM is causing me worry.

Crohns is the one thing that keeps popping up in a diagnosis. It runs in my family. I have one more test to confirm Gastroperesis but that's fairly easy, I hope. They then went to reinsert the cam through endocopy and straight into my intestine. I'm a skeptic about it...especially if this one is hung and causing a blockage. I've never had a blockage before but I watched my aunt go through this and it eventually took her life.

I'm so thoroughly malnourished my teeth are breaking, my hair is falling out and my joints are giving up randomly. What do I do?
 
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DJW

Forum Monitor
Oh my you've been through so much. Awful. And courageous!

I hope you get some answers and can start treatment soon.
Sending you my support.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hello vocalartillery and welcome to the forum! :)

I'm sorry you're going through this. How did the x-ray go? Is it still stuck? How are you feeling now? If you stop passing stool, have extreme pain or start vomiting please go to the hospital. As you know blockages can be very dangerous so be careful. Keep us posted.

Have your doctor test all of your vitamin and nutrient levels to see if you're low or deficient in anything. That could explain your teeth and hair issues. With Crohn's joint pain and arthritis is very common. Many people have also mentioned getting sick often or easily due to having a weakened immune system.
 
It was still there in the xray. I took laxative and did have a BM but I don't know how the camera is. We had to go out of town for my husband's national guard stuff and I have not been doing so well. I wish we were active duty again...insurance was so much better. When we get home I'm headed straight to the hospital for another xray.


Has anyone else been able to all when their food is hung?

Also now apparently I have to go back to Virginia Mason for a stomach emptying test and a second pill cam....I'm so physically and emotionally tired I just need a break....just go a up a little.
 
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