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Ulcerative Colitis
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Posted 5/7/2010 5:52 PM (GMT 0)
I posted this on the ostomy forum as well

I spent this week in the hospital again
My doctor is now questioning Celiac Disease or Crohn's
I thought I was already tested for Celiac, but he did a scope and took a biopsy and started me on a gluten free diet
He took blood to test for Crohn's...again, I would have thought this had already been done but maybe not...maybe they just relied on the pathology reports
Posted 5/7/2010 5:55 PM (GMT 0)
I'm so sorry you're still not feeling well, Pam. I'm going to cross my fingers for Celiac's versus Crohn's.
Posted 5/7/2010 7:14 PM (GMT 0)
WTH?? something wrong with the celiac testing process then. WEre you also tested for h.pylori?

Sad to hear this is continuing for you.....no end to the suffering. Hope they will find the right answers to get you feeling better soon.

At least with Celiac you won't require meds....

Please let us know the outcome...thanks for keeping us in the loop.

quincy
Posted 5/7/2010 7:24 PM (GMT 0)
Pam, I'm wishing you nothing but the best. I hope you find an answer soon.
((hugs))
Posted 5/7/2010 7:33 PM (GMT 0)

quincy said...
WTH?? something wrong with the celiac testing process then. WEre you also tested for h.pylori?

Sad to hear this is continuing for you.....no end to the suffering. Hope they will find the right answers to get you feeling better soon.

At least with Celiac you won't require meds....

Please let us know the outcome...thanks for keeping us in the loop.

quincy

Yeah, I don't even know what's going on anymore. I asked about Celiac months ago and when I had the upper GI scope, my surgeon told the doctor to look for/test for/whatever they do for Celiac. I hope it is that because I can control it with diet.

I don't know what h. pylori is and have never had it mentioned to me
Posted 5/7/2010 7:40 PM (GMT 0)
http://www.helico.com/index.html


Good info...just throwing out stuff that probably should be tested for considering they can't find out what's going on.



q
Posted 5/7/2010 11:18 PM (GMT 0)
Eeeeek! Very sorry to read your latest news. Are you still in trouble with fluid balance? Or do you have inflammation in the pouch again? / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/8/2010 9:45 AM (GMT 0)
Gosh Pam, so sorry to hear that you had to be hospitalized again and they STILL cannot get to the bottom of your problem. I sure hope it isn't Crohn's now that you have gone through the surgery. After considering all that you have been through and this morning reading Christie's story on her blog about all the complications she had with surgery, I really am having second thoughts. Maybe I am NOT as bad off as I think I am. I still am going through with the consult, but like I mentioned before, I did see a colorectal surgeon in 08 and he really convinced me, at the time, to try all my options of treatment before resorting to surgery.
I spoke with a woman yesterday whose two daughters (ages 33 and 30) have UC. The 33 yr old is in and out of the hospital with the disease and STILL is not considering surgery.
Hope you feel better real soon. I will keep praying for you.
Posted 5/8/2010 1:17 PM (GMT 0)
I have some inflammation again and I am going to the bathroom anywhere from 1-4 times an hour around the clock and get very dehydrated.
Posted 5/8/2010 1:26 PM (GMT 0)
I'm guessing you are being given the biopsy celiac test which is better than the standard celiac test. I had the standard test and it was negative so didn't do gluten-free diet for years.

When I went gluten-free in Jan 2010 I stopped bleeding. Hoping you get some answers that are to your benefit and improvement. Best wishes.
Posted 5/8/2010 4:04 PM (GMT 0)
My surgeon did request the biopsy test when I had an upper scope a couple months ago, but he doesn't think it was done now.

I have not had any nausea/vomiting since I have started the gluten free diet. I feel pretty good actually...more energy, I've been able to clean, stuff like that...but I am still going to the bathroom WAY too much
Posted 5/9/2010 1:44 AM (GMT 0)
You probably should be taking it easy with the household chores until you get the output & inflammation resolved. Some cleaning solvents can be irritating, especially when you come in contact with vapor or powder. Did you read the blog that ChristieAnn67 linked to her new thread on coming back to HW after surgeries? She also had a fistula & complications that went on and on. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/9/2010 2:02 AM (GMT 0)
Hey pam Sorry to hear that you are having so much trouble still. Glad to hear that the Gluten free is helping. I have been on gluten free for over 14 years - when I eat bread and yeast I throw up - period - every time. But my blood ciliac test is negative. I avoid tonnes of food and feel so much better - no gluten, no yeast, no milk, no food colouring, no MSG, no food chemicals, etc. Eg, hydrogenated vegetable protein makes my heart RACE and keeps me awake as does certain food colourings. Bread makes me vomit, and I cant have yeast either (beer and gluten free yeast breads/cakes are a disaster).

Anyway, just a thought. I hope that diet will help you - doctors may not find a name for it - but it doesn't mean you will not learn to control it over time.

What about the narcotics or codeine? I hope you are taking metamucil. Without these I would be glued to the toilet. With these I am starting to live life again :)

Good luck!
Posted 5/9/2010 2:15 AM (GMT 0)
Oh don't worry. I don't use chemical cleaners. I use natural cleaners, like vinegar.

As for codeine/narcotics, I can't get them prescribed to me for this. My doctor gave me 5 days of Lortab when I suggested it and won't give me more
I don't take Metamucil, but the Questran is supposed to be for thickening/slowing
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