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My crohns story

J

jhutch88

My story starts about 2 years ago, when I had no insurance and started having unexplained stomach cramps. They started out being as painful as period cramps and began around a week before my period so I didn't worry. Well my period came & went and about a week later I still had cramps that we're getting worse. It got to the point where I could barely stand and do normal daily activities without being in excruciating pain. So I went to see my dr and he did a CT scan and suggested I had crohns but would need more tests done to be sure. I had no insurance at the time and couldn't afford it for about another year. My dr put me on antibiotics and 2 or 3 rounds of prednisone(it's been a minute..bad memory) to get rid of my "flare". So about a year later I FINALLY get insurance and went back to my dr to get a referral to a GI. my GI did a Colonscopy, biopsy, small bowel follow through x Rays, normal blood work and special blood work. After all my tests my dr told me that my inflammation is from 10 cm of scar tissue in my small intestine. He said that my biopsy and blood work did not show proof of crohns however the 10 cm section of my intestine tat is scar tissue suggests crohns. He had me meet with a surgeon to take out the 10 cm of scar tissue however said surgeon didn't think I needed immediate surgery. I am seeking a 2 nd opinion of a surgeon as I am following the advice of my specialist(my GI). I want to have my stricture(scar tissue) taken out so that I don't have to live with my stomach being constantly tender and half the time crampy or constipated and bloated or runny loose stools :(. I have had problems gaining weight for some time now and am hoping if I have surgery that I can one day gain a bit of weight. I know crohns can be a strange and inconsistent disease. Anyone else have a half ass diagnosis like this? My dr recently put me on HUMIRA for my psoriasis and I know it's taken by crohns patients as well. I'm on my 2nd injection. Any words of wisdom would be greatly appreciated!
 
fuzzy butterfly

fuzzy butterfly

Well-known member
:welcome: Hi half arsed diagnosis is how it tends to go for a while, untill something shows up as a positive,:yfrown: .ln the mean time we suffer :yfrown:. just try and be strong and be sure to demand all possible tests scans bloods etc to get a definate diagnosis, if your insurance covers it have it done.. other wise you only end up in a worse condiction that takes longer to sort out, sending best wishes,:ghug:
 
S

smt

Om3ga1 said:
Best advice is to educate yourself. Let google be your guide. Learn all you can. Knowledge is power.
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I agree with that, but at least in my country, insecure physicians and "well-meaning" near and dear ones (actually a bundle of idiots) loathe that. That is because it exposes their shallowness, and challenges them which they are unable to face. And people like me who are on sites such as this and learn from here, are known "trouble mongers".
 
fuzzy butterfly

fuzzy butterfly

Well-known member
smt said:
I agree with that, but at least in my country, insecure physicians and "well-meaning" near and dear ones (actually a bundle of idiots) loathe that. That is because it exposes their shallowness, and challenges them which they are unable to face. And people like me who are on sites such as this and learn from here, are known "trouble mongers".
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well smt, i say thats their problem, you need to know all you can about what affects you, because thats exactly what it affects YOU, not them...
I would rather be a trouble monger than lay down n die because they are to idle to learn the facts.. keep mongering :thumright:
 
S

smt

mandyk said:
well smt, i say thats their problem, you need to know all you can about what affects you, because thats exactly what it affects YOU, not them...
I would rather be a trouble monger than lay down n die because they are to idle to learn the facts.. keep mongering :thumright:
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I agree with you, and I would continue to create trouble :)
 
Diselfitter

Diselfitter

Second opinions are helpful especially if you are not fully trusting of the first one. This is your body, your suffering.
Surgery can help by removing the scarred area, but there is a risk of constrictures due to the surgical scar... So the risk vs benefit must be weighed.
I wish you the best of luck.
 
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