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I think that i am about to go nuts. I have gone through 5 months of test and misdiagnosis. Nothin has showed up on the CT scans, and bloodtest, and even when i was treated with the antibiotics....nothing happened. The same deep pain, and diarreah, and blood in the stool showed up. My doctor doesnt know whats going on or what to say...he is keeping it under IBS, and has me on an antispasmadic, but it doesnn't help..i still have the same pain, gas, diarreah, fatigue, and each time i have a flair up it gets worse, and i get weaker, im constantly loosing and gaining weight, the pain gets more intense and deeper and deeper feeling. Im starting to loose it. They want to do a colonoscopy to get a better look but my mother doestn think it will show anything, and honestly neither do i.....but nothing seems to work, so now she wants me to do every fad diet thinking they "Heal" crohns disease...and i am a christian, and she says that because im not healed i don't have enough faith, and im just like that isn't how it works, but ..i can't deal..i wish it would just go away. Im sick of dealing with this mystery..if nothing shows up on the other tests....why would it be any different now...why does my doctor still feel there is a chance it could be there...i don't know.

Im so confused and frustrated. I don't know what to say or where to turn.

The fatigue is killing me, i cant be up for more then three hours, without being completely exhausted. Everything i eat goes right through me, there is blood in my stool, but only a little, i feel so tired, and my eyes are always burning...its killing me...

what do i do.

 Reply posted for pembroke.

The one and only way to diagnose crohn's is not through colonoscopy alone.

My colonoscopies and endoscopies were inconclusive, as the doctor claimed he couldn't get to an area between the two scopes for some reason. I'm assuming this area was my ilium. The diagnosis was made from a small bowel series by a radiologist when things wouldn't move through.

There are all kinds of things that nobody knows about. Don't ever let a doctor tell you something is impossible. 

The closest they can get to saying impossible is the word, "unlikely."

Good luck; don't give up. It took a year of losing weight while binge-eating ravenously daily (and in sleep even) as well as 9 different doctors for my diagnosis to come.

 Reply posted for pembroke.

To re-iterate what Pembroke said:

I had the whole slew of test, upper GI series, barium, CAT, MRI, everything. Each test done twice or more... and for over a year I had no relief. They even did a colonoscopy and did not find anything.They eventually decided that is was self-inflicted or psychological and committed me to a mental hospital for 24 hour observation. While locked up, I switched to another GI one of the shrinks recommended who was interested in working with me. She did the colonoscopy again and found the Crohn's. Turns out, the Dr who did the first colonoscopy was not trained well in Crohn's/UC and did not look far enough up to find the affected area in the illeum. The GI doc that finally found it was a IBD specialist who knew what to look for. As Pembroke said, the only way to catch this disease is with the tube cam and the biopsies, so definetely do the coloscopy and make sure it's with a GI who specializes in IBD

Best of luck to you.

 Reply posted for pointguard32.

hey point, time to get another opinion boss, sounds too me like dr been missing something and from what i no which aint always a great deal, you should consider the colonoscopy. for me i have had a couple now dr's will be able to determine from the visual.  i no that sounds like great, (not!) but after the investigation you may get a better prognosis.  in terms of church, pray but research as well, too much genetecially modified everything to leave it to god.  email if you want to discuss. i have been with my freindly crohn for 5 years or more and the *** needs controlling!! attitude is altitude. steven.supplydemand@googlemail.com

 Reply posted for pointguard32.

Also, don't be afraid to get a second opinion, see another doctor. Not all are experts in this disease and some aren't as agressive either. It's you and your body, you life, your well-being, you're in control not them. So do what you have to do.

 Reply posted for Ducky6612.

I was diagnosed with ulcerative proctitis (rectum only) 1 1/2 years ago after seeing blood in my stool. I had gone to a colon surgeon initially who did a colonoscopy. It was a great procedure for diagnosis since the doctor takes biopsies of tissue to test the genetics, bacteria and viruses all three which cause colitis or Crohn's. I had three already. It's the only way for the doctor to see inside what's happening and where an inflammation in the lining is and to what degree. I had a sigmoidoscopy too which doesn't go all the way up in the colon. I see a gastroenterologist now and has a CT scan two weeks ago which showed a large area of inflammation in which the disease spread, so I am having another colonoscopy in two weeks. The tissue samples are tested and I believe will tell you exactly what you have. It's a genetics things, and microbiologists and lab specialists will test for specified things related to these diseaseses. Get one done immediately.

 Reply posted for Ducky6612.

My last thing i want to mention to you is faith. it brings a smile to my face that you are so open with it. I was at a university studying to be a pastor when i had my first flare up. i lost all faith, i thought it was strong at the time, it took me 2 years to come back. my advice is to keep strong and faithful, of course it is always easier to see the situation when you are not the one standing in the fog, but trust me doing it alone is near impossible. Exodus 14:17-18 shows that God's people were boxed in between the mountains and the Read Sea, He did this as a demonstration of His preeminence.He does things like boxing His people (putting them in hard situations) to show the world of His sovereignty. God doesn't exist for us, we exist for Him. The bible has stories about sick people, what i am getting at is this. Everyone has a story that plays out into God's big picture. by everyone i mean those who are healthy, sick, poor, rich whatever they are all apart of it. For us who are sick our story will take us places where we meet others, help others, and show the grace of God in all that we do. In the book of John there is a man blind from birth, and everyone thought that it was either him or his parents who sinned and that is what led to the man being blind, but Jesus states that "neither sinned, but this happened so that the work of God might be displayed in his life" john 9:3. It doesnt clearly state the man's age, but they speculate about 40ish. 40 years this man was blind so that one day God could work wonders in his life. life can get very hard. believers and non believers all know the story of David and Goliath, and how a kid stood up to a warrior, a no one stood up to a giant. everyone wants to be like David, most of us will choose the path of Saul however, filled with fear and no faith, this is your chance to be a David, stand strong in all that you do and it will all work out. rejoice in the Lord for He loves you and will see you through this.
God bless

 Reply posted for pointguard32.

Pointguard im not sure what your status is now but in terms of having the scope i think it is a great idea to do it. I had a MRI, CT scan, then the nasty little Barium Sulfate test which all showed up as nothing. i was in the same boat as you when it came time for the scope and i thought how will this show any thing, but it does. UC occurs in the colon and having the scope will show areas that are/were infected and doctors can take samples while they are in there for further testing. this all leads to a diagnosis and treatment possibilities. as stated before, even if nothing comes up you have ruled out another possibility and you can move in the direction to the answer.
    The scope showed i had UC in the transverse and descending colon. i was glad to have an answer to my problem..... kind of. knowing whats wrong is only the first step, learning and growing through the experience is the hard and depressing part. once you learn what you have make sure you learn as much as you can even if it is hard to read.
    As for Chrons, the scope can totally help you with that one as well. Mentioned before in this thread, chrons is a nasty little brat that pops up any where from the mouth to the anus, that being said it can be very active in the colon, in fact my first dianosis of UC was wrong, it turns out that i have Chrons, and at the time of the scope it looked like UC. my second scope was great (kind of) because now i knew the whole story. thank God both illnesses are close and treatments are pretty close.
  

 Reply posted for pembroke.

really? That one statment actually helps a lot. I have never really had anything like this, that i couldn't change happen before, and it overwhelmed me. Thank you pembroke. :) that really helped me.

 Reply posted for pointguard32.

Pointguard, all my other tests showed no problems until the colonoscopy/gastroscopy.

 Reply posted for pointguard32.

Thank you. I guess the frustration and fatigue is getting to me. Its like horrid. I guess that i never realized that it would be this hard to deal and find a solution of diagnosis. I never knew it could be this bad. I guess and i feel like i make a big deal about the pain because of the lack of results in the blood test and ct scans, but then the pain hits and i know its for real, but im just confused and frustrated, and i have no one to really talk to.

 Reply posted for pointguard32.

Hi, pointguard.  The one and only way to diagnose Crohn's is through a colonoscopy and a gastroscopy.  Crohn's can effect any part of your digestive system, including your esophagus and your stomach, so this is why the tube up the butt and the tube down your throat.  I'm a big wimp who's scared of hospitals and I was totally fine with both tests.  I was awake for both.

They have to do the colonscopy/gastroscopy to get a look, but also the only way to diagnose Crohn's is through biopsies, which they will take during these scopes.

 Reply posted for pointguard32.

I just want you to know that I went undiagnosed for almost two years and I had two flexible sigmoidoscopies all clear and then it took one great doctor and he put me in for a Colonoscopy and I have ulcerative colitis so badly throughout my colon they were worried I had toxic colon and I remained in the hospital right after my colonoscopy to get drugs that help me. I could not believe how amazing it felt to not have to be scared whether I knew where the next bathroom was. I was diagnosed at the age of 35 and I am in the midst of having my first flare up since leaving the hospital and I know that it is due to stress. The colonoscopy saved my life. I would recommend it.

 Reply posted for pointguard32.

I am in school to be a pastor, and all this, and i know its not a lack of faith, but i just can't stand hearing it. My other question, is that i have had other test and they have come back perfect, but no matter how i am treated for anything else i still have there severe symptoms, and nothing helps, could it still be Crohns even if it didn't show up on the other test? And the colonoscopy could show that?

 Reply posted for pointguard32.

Point Guard...God doesn't want you to be a martyr. 

Regarding "They want to do a colonoscopy to get a better look but my mother doestn think it will show anything, and honestly neither do i".  Even if the colonoscopy doesn't show anything, isn't it better to rule out a serious disease and put your mind at rest?

I had the exact same symptoms as you and the only way to diagnose Crohn's is through a colonoscopy and a gastroscopy.  I nearly died before I sought medical attention because I was trying to be strong.  It turns out that I have had Crohn's for probably years and I ignored what my body was telling me.

 Reply posted for pointguard32.

hang in there pointgaurd, go ahead and get the colonoscopy.  having these problems doesn't mean you lack in faith.  i'm sending this from a hospital bed and think that we all go through these probs for one reason or another, we just can't fathom why.  yeah, i know it's tough, but it sure beats the alternative of being sick all the time.  ibd can be maanaged, even if it sometimes means somethng as severe as surgery.  we go through the tough times and come out stronger on the other side