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09-02-2011, 03:45 PM   #1
Cat-a-Tonic
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FAQs for the Undiagnosed

Bear with me, this will probably start out small and we'll edit and add to it as we think of more. Allie and Star, feel free to edit this post and add more. Once we feel this has enough info, we'll sticky it.

If you are new to the forum and have clicked on this thread, you're probably undiagnosed and having worrying symptoms, and you are wondering if you might have an IBD such as Crohn's or Colitis. Here are some FAQs which will hopefully help you navigate the road to diagnosis a little more smoothly.

Q: Do I have an IBD?
A: Only your doctor can tell you for sure. You'll need to undergo tests, most likely including blood work, colonoscopy, upper endoscopy, and scans. Unfortunately, IBD cannot be diagnosed based on symptoms alone, you must go through diagnostic testing first.

Q: I'm not sure if I have IBS (irritable bowel syndrome) or IBD (inflammatory bowel disease). What's the difference between IBS and IBD?
A: IBS is a brain-gut disorder. Essentially, the signals between your brain and gut get messed up somehow, which ends up with the brain erroneously signaling the gut to cramp, causing symptoms such as pain and diarrhea. IBD is inflammation of the bowels, also causing symptoms such as pain and diarrhea. Other symptoms of IBD that are NOT part of IBS can include: blood in the stool, nocturnal diarrhea, weight loss, fever. IBD can also frequently incur extra-intestinal symptoms such as joint pains, headaches, eye inflammation, and skin rashes.

Q: What kind of a doctor should I see if I think I have IBD?
A: Your primary care doctor/GP should be able to refer you to a gastroenterologist, or GI. A GI is a specialist dealing with illnesses of the digestive system. If you feel that you may have an IBD such as Crohn's, you might want to seek out a GI who specializes in IBD/Crohn's.

Q: I've had a lot of tests but still have no diagnosis. Will I ever get diagnosed?
A: Unfortunately, IBDs such as Crohn's are sometimes very difficult to diagnose. Crohn's has a "skip pattern" which means it can manifest in patches between healthy areas of intestine. Crohn's can also manifest anywhere from mouth to anus and is sometimes difficult to pinpoint especially if it is in the small intestine. Sometimes, unfortunately, it can take years to get a proper diagnosis.

Q: I've had a lot of tests and have only gotten normal test results. Is it still possible that I have an IBD?
A: Absolutely yes, see above. Crohn's is sometimes very tricky to diagnose. It's also possible that you have a different illness that is causing IBD-like symptoms. Certain auto-immune illness such as Lupus or Addison's disease can cause symptoms such as abdominal pain, diarrhea, and nausea.

Q: I do not have diarrhea as a symptom. My doctor says that I cannot have an IBD if I do not have diarrhea. Is this true?
A: Absolutely not. With IBDs such as Crohn's and Colitis, you may experience diarrhea, constipation, or maybe even normal stools. If you do not experience diarrhea as a symptom, it does not mean that you do not have IBD. (And you may want to get a second opinion from a more knowledgeable doctor.)

Q: My CRP and other bloodwork is normal. Does this mean I do not have an IBD?
A: No. You can have normal bloodwork and still have an IBD. Approximately 10% of people with IBDs will have bloodwork in the normal ranges even when they are badly inflamed and very ill. Generally speaking, bloodwork is not a super reliable indicator. It can be a good tool, but it can also sometimes be inaccurate of what's really going on inside your body.

Q: My doctor has basically given up on me and says he cannot help me any further. What can I do?
A: If this is your primary care doctor, you should find a new one. If this is your GI, ask your primary care doctor for a referral to a new GI. Not all doctors are created equally, and some just run out of ideas or cannot be bothered to deal with tricky cases. A second opinion is sometimes all that you can do.

Q: What are the best tests to have to get a diagnosis?
A: All of the diagnostic tests are different and no one is necessarily "better" than any other. Having said that, sometimes blood work can be unreliable. Colonoscopy and upper endoscopy are good because they can take biopsies, but they cannot see most of the small intestine. Pill cam is good because it can see the entirety of the small bowel, but it cannot take biopsies. MRIs tend to have better image quality than CT scans.

Q: I've been ill for a long time with no diagnosis. Does it ever get better?
A: It can, most definitely. I (Cat-a-Tonic) can tell you first-hand that it can get better. Even if you do not get a diagnosis, if your doctor feels that IBD is likely then he or she may try you on a trial of IBD medication such as prednisone, Entocort, or Pentasa. Personally speaking, Entocort has put my undiagnosed illness into remission and I now have many more good days than bad ones. It is possible.

Q: I feel so alone. Nobody understands what it's like to be ill and undiagnosed. What can I do?
A: You've come to the right place! There are many of us in the Undiagnosed Club who are going through something very similar, and we are here to support you and each other. Many of us have experienced family members or friends who are not able to understand what it is like to live every day with an illness like this and no diagnosis. If this describes you, you may want to have your unsupportive loved ones read the Spoon Theory, or describe your illness to them in a similar way. Here is a link to the Spoon Theory:
http://www.butyoudontlooksick.com/ar...e-miserandino/

Q: As an undiagnosed person, do I always have to post in the undiagnosed club?
A: Not at all. We welcome all questions and try to help where we can, but if you feel we are not the best equipped to answer, go ahead and post elsewhere in the forum as you feel appropriate. For example if you need to post about specific issues such as diet, or would like the advice of diagnosed members, please feel free to post in other parts of the forum if you wish to do so.

Last edited by StarGirrrrl; 01-21-2013 at 03:52 AM.
09-02-2011, 03:48 PM   #2
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I've gone ahead and stickyed it, I think it's a great start!
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
09-02-2011, 03:49 PM   #3
Cat-a-Tonic
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I should clarify - anyone is welcome to submit more Q and A's. Allie and Star are the other monitors and have the ability (as I do) to edit any posts within the Undiagnosed Club sub-forum. So they can add directly onto my original post - all others can add theirs as a reply and we can add it on to the original post. Thanks!
09-02-2011, 04:03 PM   #4
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Fab thread Cat!

Maybe a Q and A about normal test results....

My tests always return normal results but I still have symptoms, could I have IBD? Something like that maybe???

Dusty. xxx
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09-02-2011, 04:16 PM   #5
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Thanks Dusty, I added it!
09-03-2011, 09:24 PM   #6
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This is absolutely wonderful! Great job Cat!
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DXed with Behcets disease December 7th, 2012. Behcets disease is a very rare autoimmune disease that mimics both Crohns and Lupus, attacking blood vessels all over the body, causing inflammation and damage.
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09-03-2011, 10:49 PM   #7
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Hey Cat,

Another Q and A for you to consider.

My doctor says since I don't have diarrhoea I can't have Crohns. Is this true?

Dusty.
09-05-2011, 07:22 PM   #8
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Great thread, as usual, Cat! I think intestinal endometriosis should maybe be mentioned in among other diseases that can cause IBD-type symptoms. And also, maybe something about asking about requesting staining for mast cells that David has mentioned a few times? Maybe that's too specific for this thread?
09-08-2011, 03:50 PM   #9
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May, I do think the mast cells thing is probably too specific for this FAQ, and honestly I don't know very much about endometriosis. Anybody else who knows more about that care to write a Q and A about intestinal endometriosis, and I'll add it to the original post?

Dusty, great idea about the not having diarrhea thing, I'll add that.
10-04-2011, 02:46 PM   #10
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This is wonderful!

And also, maybe something about asking about requesting staining for mast cells that David has mentioned a few times? Maybe that's too specific for this thread?
If you want to add something on Mastocytic Enterocolitis (main symptom would be chronic diarrhea and often gut pain) and that most GIs do NOT stain for it on colonoscopy biopsies unless you request it because it is so new, here is a great research paper on it: http://www.rush.edu/Rush_Document/Ma...ocolitis,0.pdf
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10-06-2011, 03:51 PM   #11
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David, thanks for the link. I've been mulling it over, but the mast cells thing just seems a bit too advanced for this FAQ. I wanted to keep things in here pretty basic for the newbies and don't want to overwhelm anyone with too much information. But I think I might start a new thread with info like this. I'm thinking something like a "What could this be?" thread, listing symptoms and tests and info regarding all (or as many as I can) of the illnesses that can potentially cause bowel issues. The various IBDs, IBS, Lupus, tuberculosis of the colon, Addison's disease, mastocytic enterocolitis, endometriosis, somatization disorder, and so on. That's going to be quite an undertaking so the link is greatly appreciated, and I will put it to good use as soon as I have the time to start crafting that new thread!
10-06-2011, 04:11 PM   #12
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Sounds like a plan
10-07-2011, 07:30 PM   #13
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I wonder how/if fibromyalgia ties into this?
10-12-2011, 06:06 PM   #14
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David, thanks for the link. I've been mulling it over, but the mast cells thing just seems a bit too advanced for this FAQ. I wanted to keep things in here pretty basic for the newbies and don't want to overwhelm anyone with too much information. But I think I might start a new thread with info like this. I'm thinking something like a "What could this be?" thread, listing symptoms and tests and info regarding all (or as many as I can) of the illnesses that can potentially cause bowel issues. The various IBDs, IBS, Lupus, tuberculosis of the colon, Addison's disease, mastocytic enterocolitis, endometriosis, somatization disorder, and so on. That's going to be quite an undertaking so the link is greatly appreciated, and I will put it to good use as soon as I have the time to start crafting that new thread!
That's a better idea.
11-28-2011, 06:52 PM   #15
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I have been told I have IBS three years ago. Seems my symptoms are stress related - and god forbid I eat anything heavy. I can eat sphaghetti and almost can't get done before I have to go to the bathroom. Usually always diarrhea, patches in between where I am normal... What does this sound like to you guys? Fortunately - go for my first GI appointment tomorrow.
11-28-2011, 07:10 PM   #16
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Hi firefox joy,

I'm sorry you are going through all of this. Why don't you make a new thread explaining your story instead? We will be able to talk a bunch without changing the subject on this thread.
10-27-2012, 02:11 PM   #17
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Q: I'm not sure if I have IBS (irritable bowel syndrome) or IBD (inflammatory bowel disease). What's the difference between IBS and IBD?
A: IBS is a brain-gut disorder. Essentially, the signals between your brain and gut get messed up somehow, which ends up with the brain erroneously signaling the gut to cramp, causing symptoms such as pain and diarrhea. IBD is inflammation of the bowels, also causing symptoms such as pain and diarrhea. Other symptoms of IBD that are NOT part of IBS can include: blood in the stool, nocturnal diarrhea, weight loss, fever. IBD can also frequently incur extra-intestinal symptoms such as joint pains, headaches, eye inflammation, and skin rashes.
This is a controversial view, and of course my opinion and not a medical one, but I have come to believe that Irritable Bowel Syndrome is, a lot of the time, a diagnosis used when doctors believe there is nothing seriously wrong, but either don't know what's actually wrong or haven't done enough tests to reach a correct diagnosis. This is based on my own experience and reading about others' experiences. And from what I've read about IBS, there's no real objective test to prove its existence and no one really understands what it is or how (or even if) it is really linked to the mind. I find it easy to believe that a huge number of different digestive system disorders end up getting labelled as IBS.

If you're diagnosed with IBS and your symptoms are mild, it might be ok to just accept that diagnosis rather than pursuing testing for something that might never be accurately diagnosed. But the important thing is not to not let a doctor presume you have IBS if you know there is something very wrong, especially if IBD and other possible causes haven't yet been ruled out.
11-02-2012, 04:16 AM   #18
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Hello,

Like all of you I'm Undiagnosed but I strongly believe I have crohns.
A few years ago I was diagnosed with ankalosing spondilitus. About a year after that I had a period where I was unwell, kept vomiting was constipated having sweats, shivers, Skin rashes and felt generally unwell. Then as strangely as it started it stopped. A few months passed and I was given humira to treat the A.S and I felt great..........for 6months.
Then in may this year I started vomiting again and feeling unwell but this time I couldn't get out of bed I couldn't eat I was having major sweats, shivers the skin rash went out of control and I lost 3 stone-42 pounds in just over a month.
My G.P referred me to the dept of infectious diseases. They gave me a C.T scan which showed a thickening of my small bowel my lymph nodes were also showing a reaction and I was showing anaemia in my bloods with a crp of 90 plus. I've had endoscaphys, bone marrow taken, colonoscopy more C.t scans and stays in hospital. All of which have comeback as normal except the C.T scan.
I've just had an MRI scan where they inject muscle relaxant and dye in to you. Im waiting for the results........it seems is obvious to me that its crohns but for some reason the doctors are really dragging their feet?

Any imput would be welcome thanks.
11-02-2012, 05:22 AM   #19
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Hello,

Like all of you I'm Undiagnosed but I strongly believe I have crohns.
A few years ago I was diagnosed with ankalosing spondilitus. About a year after that I had a period where I was unwell, kept vomiting was constipated having sweats, shivers, Skin rashes and felt generally unwell. Then as strangely as it started it stopped. A few months passed and I was given humira to treat the A.S and I felt great..........for 6months.
Then in may this year I started vomiting again and feeling unwell but this time I couldn't get out of bed I couldn't eat I was having major sweats, shivers the skin rash went out of control and I lost 3 stone-42 pounds in just over a month.
My G.P referred me to the dept of infectious diseases. They gave me a C.T scan which showed a thickening of my small bowel my lymph nodes were also showing a reaction and I was showing anaemia in my bloods with a crp of 90 plus. I've had endoscaphys, bone marrow taken, colonoscopy more C.t scans and stays in hospital. All of which have comeback as normal except the C.T scan.
I've just had an MRI scan where they inject muscle relaxant and dye in to you. Im waiting for the results........it seems is obvious to me that its crohns but for some reason the doctors are really dragging their feet?

Any imput would be welcome thanks.
That doesn't exactly sound like "typical" Crohn's - though of course lots of people with Crohn's aren't typical. Typical would be: diarrhoea, stomach pain, blood in stool, maybe weight loss or feeling sick, over an extended period. It does sound like you might have had more than one thing going on. A colonoscopy should have revealed active Crohn's if you have it in the colon (but not if it's in another part of the digestive tract).

I have learned there are so many illnesses that cause many of the same symptoms. Just when you think you've read about every possible cause of a symptom, you discover there's a whole other area of medicine with a thousand other diseases that could cause your symptoms that you've never heard of before.

Can I ask why you think you have Crohn's? Was it suggested to you by a doctor? Because of one of the test results? Or because you think your symptoms match?

Doctors will not make a diagnosis until they're certain because for them it's worse to be wrong. Especially since the treatment plan for Crohn's has its own risks, they have to be able to accurately assess the risks for you so it would be difficult for them to go ahead and treat you if they're not certain of the diagnosis. With Crohn's they'll probably only make the diagnosis based on objective test results, not on symptoms. I know it can get really tough being on waiting lists when you just want answers. If you're in an emergency situation they'll move quickly, but with chronic illness there is a lot of waiting for tests and consultations and moving through the diagnostic process. I know it's awful, but there's not much we can do. If you're suffering, you just have to keep chasing up the doctors and ask them to hurry up the next test. Make sure you tell them if you're getting worse or get a new symptom or if you're just not coping and don't feel they're moving fast enough.

As I said, a colonoscopy probably would have shown Inflammatory Bowel Disease in the colon. To rule Crohn's in or out you'll probably need an endoscopy (the equivalent of a colonoscopy but for the upper digestive system) which will detect Crohn's in the throat/stomach/small intestine. I'm no expert but I believe that's the definitive test - especially if they take biopsies (did they take biopsies from the colonoscopy?). Unless you have a rarer form of Crohn's where it's affecting parts of you beyond the digestive tract, but it sounds like that's not the case for you.

I'm not sure what ankalosing spondilitus is? How does that link with thinking you have Crohn's? Could that be what's causing your current problems?

As I said, your post didn't immediately sound like definite Crohn's, and I've had a tendency myself to convince myself of one diagnosis (especially if I've been reading about it) but turns out I'm not correct. It would make life easier if doctors could get their act together quicker, but it really is a matter of waiting sometimes and not getting too hung up on getting answers right away. Ask your doctors what possibilities they're thinking of so you know if they're having the same ideas about your illness as you are. And make sure you have confidence in them: ultimately test results will tell you whether you have Crohn's or not, but you need good doctors to make sure all the right tests get done, and if it turns out to be something else the doctors' interpretation of your symptoms may become more relevant than your tests so it's a must to know you've told them everything and that they've listened and understood.

Hope you get some answers soon. xx
11-02-2012, 08:02 AM   #20
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Hi Unxmas,

The reason I think I have crohns is, I've studied symptoms and I match in 80% of them, I have had 3/4 doctors that they suspect crohns but also 1/2 that say they don't think it's crohns. I have had an endoscopy but they couldn't get down as far as the inflammed area, they did take biopsys from colonoscopy which came back normal. They also took biopsys from endoscopy and tested them for whipples which is a rare tropical condition, which I don't have.
A.S is a rheumatoid arthritis mostly affecting the spine but does also affect the larger joints and there is a connection between that and inflammatory bowel conditions.
The waiting is the worst part and does make the mind wonder.

Thanks for your input, Wu
11-02-2012, 12:06 PM   #21
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Wutang, have you had a fecal calprotectin test? CD can't be diagnosed from this test but it can show elevated levels of inflammation in your GI tract. Of course, CD isn't the only cause of inflammation in the GI tract but it might give you one more piece to the puzzle. Another test that would look at the inside of the small bowel would be the pill cam test as an endoscopy doesn't not cover the small bowel in it's entirety. The problem with the pill cam is that it can show if there is inflammation in the small bowel but of course does not allow for a biopsy. You can check out these tests by clicking on the highlighted links or looking them up in our wiki forum. I hope you are able to find some answers to your issues soon.
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11-02-2012, 12:48 PM   #22
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Hey Clash,

I have an appointment on Tuesday to see the doctor. So I shall see what the MRI results say and ask about the pill cam depending on that. It has been suggested that a laparoscopy might be the best way forward but I think that's quite evasive.
11-02-2012, 12:54 PM   #23
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Hi Unxmas,

The reason I think I have crohns is, I've studied symptoms and I match in 80% of them, I have had 3/4 doctors that they suspect crohns but also 1/2 that say they don't think it's crohns. I have had an endoscopy but they couldn't get down as far as the inflammed area, they did take biopsys from colonoscopy which came back normal. They also took biopsys from endoscopy and tested them for whipples which is a rare tropical condition, which I don't have.
A.S is a rheumatoid arthritis mostly affecting the spine but does also affect the larger joints and there is a connection between that and inflammatory bowel conditions.
The waiting is the worst part and does make the mind wonder.

Thanks for your input, Wu
Ok, I understand your thinking now, and that does sound like Crohn's is a stonger possibility. So annoying if the doctors don't agree! Clash has some good ideas about further tests.

I have an appointment on Tuesday to see the doctor. So I shall see what the MRI results say and ask about the pill cam depending on that. It has been suggested that a laparoscopy might be the best way forward but I think that's quite evasive.
I've had an "exploratory" laparoscopy - i.e. to look around for possble problems - and it isn't too bad. It is more invasive that the scope tests though. I was under general anaesthetic for about half an hour, recovered fully in about 24 hours (you get a flu-like feeling from the aneasthetic, and small amount of pain from the incision). It leaves a tiny scar. If there's no particular risks for you associated with aneasthetic, it may be worth it.

It does sound like they are moving things forward? Hope your next appointment delivers you some further news.
11-02-2012, 01:25 PM   #24
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I am in the same boat. I have been suffering for over a year and half. My gastro doc keeps saying IBS. I just had an MRE of the small intestines done and it did not show anything in the small bowel. It did however show some pelivc issues that I will have to look into. I also was told I likely have A.S even though my spinal xrays did not show it. The rheumy said the xrays do not always show it.

Another thing to consider is other autoimmune diseases such as lupus, and even possible lyme. Have they done a lupus blood panel on you? I will say that I have a lot of other health issues ( interstitial cystitis, fibro, MCS( multiple chemical sensitivity), Neuropathic dysmotility of small gut, chronic UTI's, heart murmur( grade 1).) One thing I do know for sure is that I have inflammatory issues going on all throughout my body. I also wondered if you can have inflammation in your gut and it not be actual crohns. I just do not know. I think doctors will only dx you if they have absolute proof( biopsies) that say you have crohns. Otherwise you are stuck in limbo, or they will tell you their favorite line " you must have IBS" lol! IBS is the fail safe for all doctors when they cannot come up with anything. It basically means "your guts all messed up but we have no clue as to why!" My old gastro doc who moved out of state told me that IBS means " Who the hell knows whats wrong with you"! IBS just sound better I guess

I guess be your own advocate and keep searching until you find someone who will help you to get you feeling better..








Hi Unxmas,

The reason I think I have crohns is, I've studied symptoms and I match in 80% of them, I have had 3/4 doctors that they suspect crohns but also 1/2 that say they don't think it's crohns. I have had an endoscopy but they couldn't get down as far as the inflammed area, they did take biopsys from colonoscopy which came back normal. They also took biopsys from endoscopy and tested them for whipples which is a rare tropical condition, which I don't have.
A.S is a rheumatoid arthritis mostly affecting the spine but does also affect the larger joints and there is a connection between that and inflammatory bowel conditions.
The waiting is the worst part and does make the mind wonder.

Thanks for your input, Wu
09-09-2013, 10:00 AM   #25
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Just wondering if vomiting can be a symptom? I see a lot of people mention feeling sick but not actually vomiting. I am currently undiagnosed but undergoing tests, most recently the calprotectin test came back positive and im due to have an endoscopy at the end of the month. My symptoms seem to vary each time I have an episode...today's was violent diarrhoea, last week it was projectile vomit. Both are always accompanied by terrible cramps, gas and usually only last 24hrs. Have had 11 episodes like this since Dec 2012 and I can go for a couple of months without anything to then having two episodes within the space of a week. Is making life very hard with work and my two gorgeous boys. :-(
09-13-2013, 08:23 PM   #26
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Hi Dannid, vomiting and feeling sick was the main symptom I had along with huge weight loss . Since my posts last year I've been told I do have crohns. I wish you all the best.....they get there in the end
09-14-2013, 02:34 AM   #27
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Hi wutang,
How did you finally get your diagnosis?
09-14-2013, 06:14 AM   #28
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Hi Ali, I had an MRI scan which revealed inflammation and a narrowing of the small bowel. They wanted to do another endoscopy but I refused and said what else can it be I don't have cancer(I had a bone marrow test). I demanded that someone get off the fence and make a diagnosis. They did I started taking Humira and fortunately I've been ok for nearly a year now.
Luckily I had found a top doctor who was on my side and really wanted to help.
03-16-2014, 11:45 PM   #29
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Late to the dance here, but I read the posts about ankylosing spondylitis. Though Crohn's manifests in the bowels first, usually... not always. Being in the medical field, I have seen cases of iritis, spondylitis, a lot of "itis" (inflammation) in other parts of the body manifesting first... without any bowel symptoms AT ALL. All auto-immune reactions which can be a strong predictor of Crohn's to follow.

Glad for those finally diagnosed. The "feeling sick, but crazy part" is worse than a validation that you are indeed sick with something with a name. Then you can make choices and decisions from that starting point. Much better than living in the "Twilight Zone." Especially when it comes to the others around you saying, "but you don't look sick." And other underwhelming observations and unsolicited advice.

Knowledge is power... Michele Lea
01-07-2015, 08:50 PM   #30
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Join Date: Jan 2015
I am looking for some help on whether or not I sure further pursue a diagnosis.

I have suffered from what I call "tummy issues" for years. I am 19 years old and for as long as I can remember I have had them. I've had urgency, diarrhea, pain after eating, cramping for most of my life on and off which I was told to just deal with because a parent has had self diagnosed IBS for most of his adult life.

In highschool my "issues" worsened and I begin having more and more pain along with vomiting and blood in my stool and when I wiped and continued diarrhea. I ran cross country and distance and it begin to interfere with my competitions. I would vomit or come close to it while running and had diarrhea after. I went to my pediatrician at 17 for it and was only asked if I was pregnant and was brushed off as anxiety.

Finally I pursued a GI doc at 18 after talking with a friend who had been diagnosed with Crohn's two years previous. I went to her doctor to find some answers. The doctor asked if I had mouth sores and I never considered that a symptom but I had mouth sores all of my life and she said that it is related to IBDs. On the first visit I was given a chart to track my symptoms along with a anti-diuretic. Off to college I went with my chart.

I returned over the holiday break with news that I still have blood, diarrhea, pain, nausea and vomiting, cramping and continued mouth sores. So my GI scheduled an upper endoscopy and colonoscopy and biopsy of a mouth sore. The results came back as not Crohn's but inflammation of my small bowel. I am still waiting the results of the mouth biopsy. I was told it was IBS because it wasn't crohn's and I was told to try therapy, probiotics, and a FODmap diet.

I have read many places that it is not IBS if you have blood in your stool or have been awoken by pain and diarrhea in the night, which I experience both too much to be ignored.

I know this is long but I am looking for help to see if I should pursue more tests (they're costly) or accept my IBS diagnoses and try the diets.
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