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Crohn's Disease Forum » Support Forum » Undiagnosed Club » I'm so frustrated and confused.


05-09-2012, 03:03 PM   #1
anyone
 
Join Date: Apr 2012
Location: Oregon
I'm so frustrated and confused.

I had my colonoscopy today. They said everything looked normal. I had a CT scan a few weeks ago and it said I had narrowing in my sigmoid colon and cobblestoning, with possible colitis. This colonoscopy said nothing about the sigmoid or anything about cobblestoning for that mater. I'm so frustrated and scared. How can the CT scan show all of these things and the colonoscopy shows nothing? I don't know what to do now, I feel so helpless. I have no way to get better If they can not figure out what is wrong. This whole process has been lame. First they said I had antibodies for H Pylori. When they did the biopsy they said I did not have it. I was thinking I would just need antibiotics to get better. Then they said I could have possible colitis and now they say there is nothing wrong at all. How can this be?
05-09-2012, 03:12 PM   #2
ontariomom
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Join Date: May 2012
Location: Grey/Bruce, Ontario
i dont know much about much but i do know that when i had my colonoscopy a year ago it showed nothing. And now i am laying on the couch each day in pain and diahreea and they are now saying i have Crohns.Although i am waiting still for the official dianogsis.

I guess from what i understand that my body wasnt showing symptoms of the disease even though i had the diahreea, blood and abscesses. I am not on any treament due to all this, so i just do what i can til i get into the see the GI and then have him confirm it all and put me on a treatment plan.

I do understand your frustration. I feel helpless alot. And dont understand much about anything right now.....

alli can say is i hope you get it all figured out and can get treated for what you need.
05-09-2012, 03:53 PM   #3
polar1920
 
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Join Date: Apr 2012
Location: Blackburn, United Kingdom
Hi,

I have Crohns and have sometimes been doubled up in pain but a colonoscopy has been negative.
I dont understand it either, it doesnt make sense does it?
I hope that your symptoms settle soon and you start feeling better xx
05-09-2012, 08:59 PM   #4
dannysmom
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Join Date: Oct 2010
Location: NY

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Sharing your frustration too ... thanks for posting. Good luck!
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
05-09-2012, 09:31 PM   #5
Txarmywife
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Join Date: Apr 2012
Location: Central Texas, Texas

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i'm sorry you're going through this. did they take biopsies during the scope? my last scope didn't show anything out of the ordinary either in the colon but every biopsy they took showed inflammation. that's why it's so important for them to biopsy! everything about this disease can be lonely and discouraging. my advice would be to ask for a second opinion...go to a different doctor if you're unhappy with this one. sometimes it takes getting the right set of eyes with experience to look at your case
05-10-2012, 11:27 AM   #6
fromthegut
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Join Date: May 2009
May I ask what cobblestoning is ???
05-14-2012, 05:24 AM   #7
Leebie3
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Join Date: Apr 2012
Location: Queensland, Australia
far out.. this is exactly what I struck today :-( I had a ct enteroclysis show enlarged reactive lymph nodes and inflammation in the ileum but the scope was clear.. INCREDIBLY frustrating huh.. I'm praying to the gods that the biopsies show something because I am in so much pain it simply cannot be nothing..
05-17-2012, 12:55 PM   #8
anyone
 
Join Date: Apr 2012
Location: Oregon
It has been a struggle during my illness for anyone to take me seriously. My first GI doctor refused to do any more tests after testing me for Celiac, H pylori, and Endiscopy. She said because I did not have D, there was no point in doing a colonoscopy. I told her that I have had severe D for years off and on. I also told her that I could not eat and she said she could give me something for my appetite. I told her if there was nothing wrong with me, I did not want her medication. I took that moment and walked out on her. I went back to my primary and asked him to refer me to someone who would help me. I was so luckey because I got another appointment with a GI within a week. He wanted to do all the tests until they figured out what was wrong.

After that, I had my Colonoscopy, which I was told later was normal. I felt pretty good after waking up from my colonoscopy. I went to Sherri's and had two pancakes and an egg. It was more then I had eaten in weeks. I ended up in the ER later that day with horrible pain in my abdomen. I was seen by the same ER doctor that saw me a few weeks before. She did not treat me very well the last time and sent me home. Once again, they had me hooked up to blood pressure cuff and the heart monitor on my finger, which was not even on. I felt like I was being treated unfairly. Another doctor came in to talk to me, I don't know if the previous doctor was off shift or not. He told me that they were going to send me home. I asked the doctor if he would mind taking my temp before he sent me home. Luckely, I had a low grade fever. Considering I had a colonoscopy so recently, he did not want to send me home.

I was eventually admitted to the hospital. The doctor started suggesting that they needed to test for a bunch of rare disorders and things. I felt so helpless. I actually told him I did not think they would ever figure out what was wrong. They gave me an MRI the next day along with a number of other tests. The doctor came in and told me that my MRI was abnormal but he would have to talk to my GI before he could tell me exactly what was going on. He came back later and told me that I had Chron's. Apparently, it is in my small bowel near the terminal illium area. I need to get a copy of my reports.

My blood tests also showed "massive" amounts of inflammation, which was interesting because I asked my primary to test for that the week before and he said they were normal. Just to let you all know before my diagnosis I had the following tests, Xrays of the abdomen x3, CT scan, Endoscopy, Celiacs, H pylori, Colonoscopy, Blood tests. The small bowel can be trickey to get to with scopes.

Right now, I'm taking Prednisone, which is a steroid. I'm also taking something for acid reflux. I have my first appointment with my GI since I left the hospital today. I was in the hospital for 5 days. I'm not really able to eat right now and that worries me. I think I have a stricture. The steroids only seemed to help in the hospital when I took them through the IV. I don't think I'm absorbing them properly in pill form. I will keep you guys updated. Please don't give up!. I almost did. Infact, I was starting to question my own sanity because all the tests showed nothing wrong.
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