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how many tests and how long did it take for diagnosis?

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Posted 7/12/2008 1:40 AM (GMT 0)
Thanks to all who have posted in my other thread, but I thought this one needed it's own. I've been reading a lot since I've been here and I'm a little nervous to be honest.

How many tests, what kinds, what symptoms do you have, and how long did it take for you all to get a diagnosis?

I've been reading a lot lately on here that people who have all the symptoms and who even had a previous diagnosis of crohns are having scopes done and being told they don't have anything. I'm scared this is going to happen to me. I have that kind of luck and like I told the GI, the severity of my symptoms come and go so I'm worried that with all the waiting I've done to just get in to the GI and then the wait for the colonoscopy that my symptoms are going to go away and they won't be able to find something. He said it's possible, but the fact that I've had diarrhea for years and the rest shows there's obviously something wrong. I hope he's right.

My GI says I have many of the symptoms of crohns plus some family history so that's why I'm here...he also said though it could be ulcerative colitis, or just really bad polyps which would explain the bleeding, but not everything else.

Symptoms I have are

diarrhea anywhere from 5-10 or even more times a day and this has been going on for years, maybe four or five years to be exact...just recently got worse. I very, very rarely have a regular bowel movement or just one or two a day.

rectal bleeding with and sometimes without a bowel movement. this has also been going on for years. in the past it's only been like a few drops of blood in the toilet or some when I wiped, but this past month it has gotten pretty extreme to the point where I couldn't even see through the toilet water multiple times.

severe lower back pain...this one just started with the severe bleeding

mouth sores that my family doc can't explain or diagnose...I've seen her multiple times over the past 2 years for this

a mysterious rash that comes and goes, but doesn't spread if I itch it and again the family doc can't figure out where it's coming from or why. when I asked her to investigate though she said and I quote..."don't go looking for trouble"!

multiple blood tests have come back with high white blood cell counts which I've been told means there's inflammation somewhere in my body. where in my body that is my family doctor AGAIN has no idea...do we sense a pattern here?

I think that's about it. I have joint pain, but blame that on being overweight, maybe it has something to do with this also...I don't know.

Also I am currently trying to change family docs lol. I'm sick of her...oh what can I call it...maybe laziness? She's known about all my symptoms and has never put it all together. The first thing the ER doc said to me was "have you ever been told you have crohn's disease or a colitis?".

I'm very interested to hear your stories. Thanks in advance! You guys have been a great help to me so far.

 

Posted 7/12/2008 2:26 AM (GMT 0)
well I went through numerous tests...endoscopy, xrays (those were a PAIN), blood work, colonoscopy....my first tests showed NOTHING, it took til the colonoscopy, which they did last, to find anything and get my diagnosis. Luckily with my dad having a SEVERE case I knew what to look and ask for and my family doc agreed with me and we went straight to Crohns testing so I was a bit lucky there with not needing the guesswork. Which meant with the tests and having to wait for them, maybe 2 or 3 monthes for diagnosis.
My initial symptoms were also family history and diarrhea EVERYTIME I ate which was making me pale (though I still am), when I noticed blood I started knowing what was wrong but didn't really want to get tested (when your a younger teen its a bit embarassing to admit that stuff to a doc so I stalled) but after a bit I just realized I needed to do something, so much the same symptoms as you too. when put on meds and treatment that got very controlled and mostly went away, except if I get too stressed then it shows up once in awhile. There IS alot of areas they could go with diagnosis depending on what they find; colitis, crohns, irritable bowel..
I have joint pain but I also know why and its a completely unrelated source..though my imuran might be setting some of it off (as well as prednisone sticking me on the border of overwieght right now)
I also get some skin issues, I have very sensitive skin and rash very easily, whether the crohns is doing it or not I've never really figured it out, but its kinda fun watching the doctors worry when they see it sometimes. I don't worry about it much. My hubby gets mysterious skin rashes and only in summer, so far we are figuring its something to do with the sun.
I must say on the side, when my crohns flares I dont' flare on the typical side (which seems to be right, I flare up and get pain on the left which seems to confuse the docs) and my bloodwork (and urine) never seems to show inflamation in my markers even though its there...so sometimes those aren't ALWAYS right when they say your fine. Even my scopes if they don't look in far enough will show me as fine..its a tricky disease sometimes.
Posted 7/12/2008 3:06 AM (GMT 0)
thanks for your post. I started the bleeding in my early 20s...like you I didn't want to go for help. after all this time though I knew I had to do something because it wasn't going away...I mean it would from time to time, but it always came back and this these past couple of weeks it's been horrible. I knew it was time to go in.
Posted 7/12/2008 3:08 AM (GMT 0)
8 years ago when I started getting really sick, I had anywhere from 5-20 D's a day. I was dropping weight and had lots of blood in my stool.
As the weeks were going on, my joints flared up and I had horrible pains to the point I could barely walk and almost landed in a wheelchair.
I went to a Rheumy who treated me for arthritis but I just had a feeling that something else was going on that was causing it. He didn't want
to listen to me. So I went to a family doctor who then referred me to a GI. GI thought I may have colitis but then when he did my scope
he said I had CD and I went in the hospital for a week. But it took me 3 months to get to this point and by then I was so sick and my joints hurt
so bad I thought I was going to literally die. Between then and now, I have had flares where I would just be in the bathroom a million times
a day and sometimes bloody stools. My current GI puts me on Cipro for 2 weeks and its usually enough to help. But two months ago
I went into a big flare where my joints flared up so I knew it wasn't going to be good. He did a scope and sure enough it wasn't good.

I have CD very mild compared to many people with it!!
Posted 7/12/2008 3:15 AM (GMT 0)
wow...thanks for sharing your experience LBJ. *hugs*
Posted 7/12/2008 4:07 AM (GMT 0)

I have been sick off and on for the past 7 years. The very first doctor I went to did a scope and told me I had CD and sent me home. He didn't tell me anything about it and I had no idea what it was. I did a lot of research on my own and learned about the disease. Needless to say, I found another doc because I didn't like his bedside manner. To make a long story a little shorter I have been to about 6-7 GI docs over the years and they all do the same tests and tell me it is IBS, even though they all found ulcers in my colon. They tried to tell me it was stress and I should just live a stress free life and things would get better. I gave up on doctors for about a year until I had had enough again. I was searching for a doctor who would help me. I must say, I found him at the Mayo Clinic. He really listened to me and what I had to say about all my problems. Then he did many tests and found the problem.

My symptoms are D most days (anytime I eat), weight loss, Vitamin B12 deficiency, and I have a stabbing pain in my lower right side that comes and goes (mostly stays). I have had so many tests done that it isn't even funny. One doctor told me I've had a multi-million$ workup. Let's see if I can remember them all: 5 colonoscopies, blood work multiple times, 2 capsule endoscopies, 2 small bowel follow throughs, many CT scans, 2 MRIs, multiple fecal tests, and lots of xrays. I know I am leaving some things out but I remember all the colonoscopies, or at least the preps.

I finally have a doc at the Mayo who says he has no doubt that I have atypical CD. I know he did many tests and consulted with several other docs, including CD specialists, at the Mayo Clinic. He found  edema, inflammation, ulcers, and erosion in my small intestines. I also have inflammation throughout my colon. I have many vitamin deficiencies as well, but that is because I can't eat w/out being sick.

I have only been back from the Mayo for a couple weeks, so I'm still waiting for them to decide which meds they want to try for me. I have taken so many and they didn't work for me. So my doc is waiting for another CD specialist to get back from vacation so he can get his input before he starts me on something. He said he didn't want to start me on something for a week or so and this other doc say he wants to try something else. I am on pins and needles waiting to hear from him, but I trust him and will do what he says.

Posted 7/12/2008 4:28 AM (GMT 0)

I suppose you learn from others experiences but I might suggest you concentrate on determining the hashimoto from the colitis. Are you on an antibiotic to rid your body of the causative bacteria of hasimoto? Couldn’t the rash be from hashimoto as much from colitis.

The colonoscopy will determine the extent of colitis inflammation and a biopsy can be taken so the sample of the bowel wall tissue can be examined under a microscope. The GI doc can distinguish between stool and bowel wall during the colonoscopy so don’t worry about the prep so much…crohns is more patchy inflammed spots,, colitis the inflamed area in entire colon and the more frequent blood leans towards colitis. You mention the waiting and the lengthy diagnosis in posts here, but its not unusual for a GI to distinguish colitis from colonoscopy or crohns after a examining a biopsy from a sample taken during colonoscopy.

Once again during all this waitng you certainly have time to go gluten free diet for example.

Posted 7/12/2008 5:10 AM (GMT 0)
Wow, I had it easy. I walked into the ER with symptoms of a blown appendix. Waking up after surgery I find out I have Crohn's. A few very mild symptoms preceded that, but I just thought it was stress and poor diet.

Of course after the diagnosis they made me go through all the tests again. Since I was in the service at the time, and was first diagnosed in a civilian hospital, they had to confirm everything. Military doctors are not always the most sympathetic or gentle ones out there.
Posted 7/12/2008 10:22 AM (GMT 0)

medchrt1 said...

I suppose you learn from others experiences but I might suggest you concentrate on determining the hashimoto from the colitis. Are you on an antibiotic to rid your body of the causative bacteria of hasimoto? Couldn’t the rash be from hashimoto as much from colitis.

The colonoscopy will determine the extent of colitis inflammation and a biopsy can be taken so the sample of the bowel wall tissue can be examined under a microscope. The GI doc can distinguish between stool and bowel wall during the colonoscopy so don’t worry about the prep so much…crohns is more patchy inflammed spots,, colitis the inflamed area in entire colon and the more frequent blood leans towards colitis. You mention the waiting and the lengthy diagnosis in posts here, but its not unusual for a GI to distinguish colitis from colonoscopy or crohns after a examining a biopsy from a sample taken during colonoscopy.

Once again during all this waitng you certainly have time to go gluten free diet for example.

Hmm...I've never been treated for the hashimoto's other than just synthroid. No one ever told me there's things you can do for it. As for the rash again no one has mentioned it being from the hashimoto's and I had hashimoto's for years before I started getting the rash. I see an endocrinologist for this plus my not so great family doc. I'm surprised I haven't heard anything like this sooner. It's definitely something to think about...thank you.

ShaddyBaby...you've been through a lot! I'm glad you found someone that finally helped you.

mmckenna...thanks for your post!

Posted 7/12/2008 12:07 PM (GMT 0)
Tests I had in '07: small bowel follow-through, doppler ultrasound, x-ray, CT x 2, MRI, liver biopsy, HIDA scan, inferior venocavogram, CT enterograph, colonoscopy, too many blood tests to mention.

I went to the ER twice in June-July '07 due to abdominal pain and high fevers, and the second time was admitted for 4 days while they tried to figure out why I had massive liver enlargement. No D/C/or other typical signs. First I was diagnosed with a drug-induced liver injury from oral contraceptives. Then in December '07 when I was still having pain/fever episodes I was diagnosed with Crohn's; basically the doctors ran out of tests/guesses so they sent me for a colonoscopy. The SBFT I had was not interpreted correctly, or I would have been diagnosed in July.
Posted 7/12/2008 12:45 PM (GMT 0)
I went through about 10 tests (2 colonoscopies, 2 CT scans, 3 SBFTs, 1 wbc scan, 1 schilling test to test B12 absorption, 1 prometheus IBD panel which was positive but for UC, and a few others I'm sure I've forgotten) and it took 2 years to get a confirmed diagnosis.

Just an FYI, the research says that it takes on average 3-5 years to diagnose Crohn's.
Posted 7/12/2008 1:41 PM (GMT 0)

I am sorry they are putting you through this; the first few months are the hardest as you try to get it all figured out.

as for me, I was diagnosed in one day after one CTscan; however, the next week after SBFT, scope, and bloodword all showed CD, a few months later and lots of drugs, no tests showed CD, nor have they ever since! so I may have it, may not. synptoms continued for two years; however, I stopped eating gluten (I don't have celiac) and have my health back, so at this point it doesn't matter to me what my diagnosis is.

Posted 7/12/2008 8:27 PM (GMT 0)
thanks for the replies guys! I can tell this is going to be a long process. you guys have been through so much...I don't feel like I'm a strong person inside and am worried about how I'll handle it if I have to do all these tests, but hearing from you guys shows me it can be done and there is a light at the end of the tunnel. I know I may not have crohns, but like I said before that and colitis are the main things the doc thinks I have so that's why I'm here. I appreciate your patience with me in my learning process and I appreciate all the support.
Posted 7/13/2008 12:03 AM (GMT 0)
Just remember that they won't do all the tests at once, things will be pretty spaced out, so you will have time to deal with each one individually. Some of the tests are not a lot of fun, but they are not as bad as what you have no doubt been suffering with. Endoscopic tests are probably the ones that concern me most, but if you ask nicely, the doctor will usually give you enough of a sedative that you won't care. Some of the upper GI tests where you need to drink the barium solution are annoying, but not painful. They usually want you to drink a couple of cups of a thick white liquid. Again, not fun, but not painful, just an annoyance. Things like CT scans and X-rays are pretty easy, unless you are claustrophobic, but again, let the doctor know and mild sedatives can usually make things easier. With the disease, we all go through enough, if you find a good doctor that understands that, they can help do things in a way that make it easier for you. As always, talk a lot with the medical professionals, most of them are pretty caring and even sympathetic and will do everything they can for you. If you end up with someone who isn't, ask for someone else. Remember, you and only you are in charge of your body and health. Don't forget that. With the help from this site you will make it.
Posted 7/13/2008 12:25 AM (GMT 0)
It took me 10 years for a diagnosis. I couldn't tell you how many doctors and tests I had over the years. None ever wanted to do a scope, I was "too young for it to be anything serious". I went for years thinking it was IBS and problems resulting from no gallbladder. Over those years I had diarrhea, pain, a rectal abcsess and fistula. Finally a GI bleed is what tipped them off that it could be more!
Posted 7/13/2008 12:39 AM (GMT 0)
thanks mmckenna. *hugs*

Jen77...10 years, wow. I'm glad they finally were able to help you. thanks for the support.

Posted 7/13/2008 4:18 PM (GMT 0)
I was diagnosed almost 33 years ago. I don't remember all the tests, but remember a barium swallow and enema were a couple. I was diagnosed in 3 weeks. I like Mmckenna think I got lucky to be diagnosed so quickly.
Posted 7/13/2008 9:15 PM (GMT 0)
thanks for the post Nanners...I really appreciate it.
Posted 7/14/2008 9:13 PM (GMT 0)

Hi Closure,

My symptoms, although I did not know Crohn's even existed at the time, started a little over a year ago, with eye inflammation.  I went to the eye doctor for about 6 months until finally we came to the decision that I needed to see an Internist.  My Internist immediately thought it was Crohn's, and during that 6 month time frame, I did have a lot of "D" but I thought it was either my nerves or something I ate.  Anyhow, I had the upper and lower scopes done, and although I had ulcers in the TI, inflammation in my cecum, inflammation somewhere else I cannot recall, cryptitis on my pathology, she refused to diagnose me. 

Meanwhile, my Internist put me on Metronidizole and that helped.  Then my eye got worse so my eye doctor and Internist sent me to a Rheumatologist.  He found nothing so my Internist referred me to a second GI. 

Before I could do the pill cam, I had to have the SBFT which showed nothing.  I should also mention that all of my blood work has come back as normal, even the Prometheus Blood Test, which my new GI said can be negative and you can still have Crohn's.

I am waiting to hear the results on my pill cam, as of yet.

Anyhow, the second GI (I met with him before I did the pill cam) said that he believes I do have Crohn's, even though the biopsy and blood work did not "confirm" it.  He showed me the areas in my large colon where the inflammation showed up and he said the pill cam will let him know how to treat it, if there is any disease in my small colon as well.  Honestly, with all I have gone through with doctors, I am afraid that if nothing showed up on my pill cam, that he may change his mind.  I hope not--I hope I am just paranoid. 

Best of luck with getting answers.  It is frustrating when you know something is wrong but they cannot find out what. 

Posted 7/14/2008 9:32 PM (GMT 0)
What's the SBFT? I've seen others talk about it, but keep forgetting to ask what it is lol. As for me not only do I have my colonoscopy on July 31 now I have to have a stool sample tomorrow. Obviously not a big deal, I've done it before, but I'm just saying that it looks like I'm on the road to many tests ahead.

thanks for your reply indigosunrise...I hope you find something out soon!
Posted 7/14/2008 9:45 PM (GMT 0)
I think I've had CD for years, undiagnosed, but it really reared it's ugly head in 2005. I had been passing a lot of blood and had diahrea all the time. My family doctor first made me do these little cards for occult blood - why I don't know...I should have dragged her into the bathroom and pointed to the bowl!!! Look at the blood!! It's definately not occult. Eventually though I was referred to a GI and he had a cancellation, so I had a scope the following week. Diagnosed immediately. Skip lesions all the way through my colon and quite inflammed. Biopsies taken stated probable crohn's.
Interesting about the eye problem. I too had uevitis twice around the time of diagnosis (and often since then) and my opthamologist requested that my family doctor order up a whole bunch of tests that also helped point her towards a GI referral.
Lots od drugs later, I'm feeling OK - although I don't think I'll ever be 100% again. So far I'm surgery free though (touch wood)

Bev
Posted 7/14/2008 10:19 PM (GMT 0)

Hi Closure,

The SBFT (small bowel follow through) is where you drink the barium and they x-ray you every 20 minutes or so, depending on how quickly it moves through your tract.  The idea is to see, I believe, if any abnormalites or strictures show up.  I had this test done because my insurance would not allow me to have the pill cam until I had this one.  I believe it only took about 1-2 hours until the barium had completely passed my small bowel. 

Let us know how things go for sure! 

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