Crohn's Disease Forum » Your Story » Undiagnosed

07-23-2014, 08:31 AM   #1
Join Date: Jul 2014
Location: Boulder, Colorado

I have had stomach problems for many years. It began with a milk allergy and moved on to shellfish. I am unable to digest most fruit, many vegetables, beans, and now it seems to have grown to wheat and rice. When I eat these things I get bad gas, diarrhea, and sometimes nausea. Over the past several years I have had bouts of extreme pain, vomiting, diarrhea, sweats, shaking weakness, down on the bathroom floor for hours unable to move and when I finally can I am able to crawl to my bed and can't switch form one side to the next. This has happened more frequently in the past year but it is infrequent enough that I have not gone to the hospital. When it first started happening I figured it was food poisoning. When it began happening while others ate the same food as me and didn't get sick I began to wonder what was going on with me. Now, aside from the bouts of serious discomfort which takes me to the floor and an inability to digest a lot of food I have almost constant abdominal discomfort. I have no insurance so I cannot get a colonoscopy, which was recommended by my doctor. My blood came back with no inflammation, iron was high then low and no blood in my stool. However, when I eat I am almost always in discomfort while digesting. I am a slight woman, 5'2" and anywhere between 98 and 93lbs so I cannot afford to stop eating although I am often tempted to do so. I frequent the bathroom, sometimes nothing come out and sometimes I sit there for hours trying to get just a little more out. Recently I had terrible constipation with a lot of green stool, horrible scent, and now it is more normal but when it is normal there is a lot of slimy mucus in it.

There was a time in my life when my bowel movements were regular. I would use the rest room shortly after eating a meal and everything was expelled. Now, I go back and forth between constipation and diarrhea and constipated diarrhea and failing to expel everything that is in my bowel. The worst part is that I am in discomfort most of the time. I just want to lay around because when I move I often feel pain or discomfort. I am tired a lot and just feel uncomfortable a lot of the time. I sometimes wake in the night due to abdominal discomfort/pain.

So, my sister was recently diagnosed with Crohn's after having been misdiagnoses with IBS, years ago. Her GI doctor urged me to get checked for Crohn's as my symptoms would suggest I may have the disease but, of course,, without insurance and little money it is virtually impossible to get diagnosed and treated. She, my sister, suggested that I check out one of these forums and so I am here.
07-23-2014, 08:49 AM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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· Stoma
Hi and welcome. I'm so sorry you're going through this.

I'm not sure what to recommend. I'm sure someone will be along who understans the US health system and can give you suggestions.

Sending you my support.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

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Living in Ontario with no drug benefits?

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07-23-2014, 02:47 PM   #3
KyleB's Avatar
Join Date: May 2014

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Welcome to the forum. Sorry I don't have better advice for you, someone here definitely will.
My small story
07-23-2014, 11:42 PM   #4
Senior Member
InkyStinky's Avatar
Join Date: Feb 2010
Location: USA

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Hi there - so sorry to hear about your struggles!

I'm in the US - back in '09 I had a flare while uninsured. I had to stop working and my husband was in school. I didn't qualify for any state aid. But I did qualify for financial aid from the hospital/clinic, and that made it possible for me to have a colonoscopy without going into debt.

Shortly after that, I was traveling and developed blood clots. I was in such a state worrying over the tests/hospitalization costs. But the hospital's financial aid program was incredible (it was a Catholic hospital) and I did not go into debt.

Now this was 5 years ago, and I know a lot has changed in US healthcare since then - but I'd contact your sister's GI clinic and ask about financial aid. The clinic I used had a whole financial aid dept, and at the hospital I had a financial aid consultant. It was a lot of paperwork, but it was such a relief when I was approved.

I hope that you are able to find a hospital/clinic that will help you out!
IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ I Love Lucy

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