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03-07-2014, 02:55 PM   #1
JessicaLeigh
 
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Question about being formally diagnosed

Hi everyone. I am new to joining this site, but I've been reading posts on here religiously for the past few weeks.

I really need some input on being diagnosed, and maybe some validation or similar stories.

I want to know if it is possible to have Crohn's Disease without detection from a doctor because you never saw them during a flare.

For a little personal background, I've had stomach issues my entire life, mainly IBS related, but lately the symptoms have gotten so bad that it cannot be just IBS. My mom, my therapist, and I all believe that I have Crohn's Disease based on symptoms, but when I finally got an appointment, a month had passed, the flare ended, my physical exam came back normal, and she said all I had was IBS.

I read that Crohn's disease cannot be detected unless it is active, or there is a lot of scar tissue from years of activity.

I don't seem to have the most typical Crohn's, so getting diagnosed is even harder. Most Crohn's affects the ileum or caecum, but I am have symptoms of inflammation in my colorectal area (possibly other places, but that's the worst)

During the assumed flare, I was feeling cramps, sharp pains, and point tenderness around my descending/sigmoid colon, thin soft stools, or pebbles covered in mucus. If the stool was larger in diameter, I would get major pain and a bit of blood on the toilet paper almost every day. Everything was hard to force out, even when soft. I felt like my anus was too small (this is what led me to Crohn's). There is no way there was no inflammation going on. I wish I had a rectal exam during the actual flare because this was NOT IBS.

I am also experiencing extra-intestinal manifestations, including major fatigue, joint stiffness/cracking/pain, severe back pain around the belt-line (I have a herniation, but this seemed to directly relate to the time the flare was going on), night sweats, low-grade fevers (around 99.2, my regular temp is 97), anemia/low iron, etc. I also have hashimotos thyroiditis, which is also an autoimmune, making it VERY likely that I will get another one, seeing as my body is already fighting itself.

I have done a lot of research trying to figure this out, and hypochondria was completely ruled out by my therapist, so please don't call me a hypochondriac. I'm just educated (biology is my passion) and really trying to figure out what is going on. I need some help or advice, because I'm supposed to go away to college in August, and this is going to make it difficult
03-07-2014, 05:02 PM   #2
Bonzo 4
 
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It sounds like Crohn's, get MRI , that will detect it. I've always had problems with my stomach. I was told it was ibs. Only to find out years later it was Crohn's.i read a lot of posts. I don't think I have it that bad. I eat everything drink everything, some days I go to bathroom 5 or 6 times some days not so much. I was put on mialda it made my heart race. Switched to Asacol same shit no pun intended . Everyone is different. Although I do share most of your symptoms. Go get MRI. Good luck
03-07-2014, 05:19 PM   #3
JessicaLeigh
 
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It sounds like Crohn's, get MRI , that will detect it. I've always had problems with my stomach. I was told it was ibs. Only to find out years later it was Crohn's.i read a lot of posts. I don't think I have it that bad. I eat everything drink everything, some days I go to bathroom 5 or 6 times some days not so much. I was put on mialda it made my heart race. Switched to Asacol same shit no pun intended . Everyone is different. Although I do share most of your symptoms. Go get MRI. Good luck
But if the inflammation went down after the flare, how would an MRI pick up anything now? My doctor wants to do blood work to rule things out, and based on that might do an MRI. She's checking my C-Reactive Protein, but I don't think it will show anything at this point, further validating her opinion that I just have IBS. I am so confused and frustrated.
03-07-2014, 05:27 PM   #4
Bonzo 4
 
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I just had another MRI with the dye, also had to drink this solution so it shows the inflammation in my intestines . I have a lot of those symptoms you describe. Go se another GI .
03-07-2014, 05:34 PM   #5
Dackelmann
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JessicaLeigh- cramps, joint pain, but more importantly mucous covered pebbles, and blood on the toilet paper. I get them all. Ulcerative colitis- I was laid out on the slab in hospital again 2 days ago for the 4th time in 8 months. Nothing that a flexi-sig or colonoscopy it wouldn't be hard to find areas of inflammation if you can get your doctor to get you to a specialist. My bloods are fine. The only way they could definitely know was by sticking a camera up there and finding the debacle within. Get it checked out.
03-07-2014, 05:34 PM   #6
JessicaLeigh
 
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I just had another MRI with the dye, also had to drink this solution so it shows the inflammation in my intestines . I have a lot of those symptoms you describe. Go se another GI .
I just started seeing her. I don't see the point in switching to another doctor if they perform a physical exam, see that everything is normal, and then diagnose me with IBS.
03-07-2014, 05:38 PM   #7
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I would just like to point out again that the flare ended. The inflammation went down based on the rectal exam and my stools. They have gotten wider, less painful, and no blood for weeks.
03-07-2014, 06:23 PM   #8
Bonzo 4
 
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I was also diagnosed with Ibs, until later I was told I had Crohn's. Get blood work and stay on top of it. Good luck it's not the end of the world lol
03-07-2014, 06:56 PM   #9
JessicaLeigh
 
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OKAY I HAVE AN UPDATE

I was put on colace with no stimulant for "constipation" (which I don't think is real constipation because my stools are soft, just VERY hard to push out) I took 2 capsules over the past two days and I went to the bathroom 5 times so far today and became a poop fountain. A lot of stool each of the 5 times. By the end it was just burning brown liquid that made a puddle at the bottom of the bowl. I ONLY TOOK 2 DOSES SO FAR. This leads me to believe that the constipation is in fact from inflammation, and once the stool softener did it's magic on already soft stool, it all came rushing out.

Is it common for inflammation to calm down in one area, but move to/get worse in another?
03-07-2014, 07:39 PM   #10
Bonzo 4
 
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I don't suffer from constipation, I have the runs most of the time. I
Was prescribed mialdA and asacol. Had a reaction to both meds. I stopped taking them . I'm not taking anything because side effects and also there's no guarantee it will do anything. That my opinion , I don't have half the symptoms these people say . I eat and drink everything , but stopped drinking alcohol 2 months ago. Occasionally I have stiffness in my joints but it goes away nothing too severe.
03-07-2014, 07:45 PM   #11
Bonzo 4
 
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Like I said I was told I had IBS everything I would eat would make me run to bathroom . It got better , but then I went to get checked and crohns was the diagnosis. I take supplements vitamins b multi vitamins, I juice I eat pretty much everything. I don't have abdominal pain constipation nothing. Just inflammation in my ilieum .
03-07-2014, 07:55 PM   #12
Nancye50
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I see what you're saying about having an exam when not in a flare. But I don't know what a physical exam could reveal when you're talking about long term inflammation in your bowels. My diagnosis was sudden. I was in my GP's office on a Tuesday and she admitted she had no idea what to pursue because no two symptoms pointed to the same thing. Two days later a CT in the ER revealed Crohn's a bowel perforation with an abscess starting.
My GP was floored when I followed up with her.
I also get what it's like to want to be well-informed about this stuff. It's been so hard for me to accept that this type of stuff varies so much person to person. It's far from an exact science.


03-07-2014, 09:14 PM   #13
Maya142
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A physical exam wouldn't necessarily show anything. Bloodwork could show raised inflammation markers (ESR and CRP) and there is a stool test called Fecal Calprotectin that can show gut inflammation.
A colonoscopy is the gold standard for diagnosing Crohn's. If you do have Crohn's, even if you're not flaring, the colonoscopy would show chronic inflammation. The first step is seeing a GI.
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03-07-2014, 10:56 PM   #14
mere282
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It can be a long process for some people to
Get formally dignosed. But they have to do
The run down . Blood,scans,scopes
The more info the better.
Even then it can still be tricky.
I've not been formally dignosed( my scopes
Are clean)but my scans show strictures and inflammation ect.
So I'm suggestive of crohns or undetermined .
I also have had scans/mri's when I was feeling
Ok that showed issues. Just don't be afraid
To be your own best advocate, good luck
03-07-2014, 11:41 PM   #15
Dackelmann
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In agreement with both mere, Maya and Nancye- went to 2 doctors at different times before being diagnosed- both had physical rectal exams which obviously revealed nothing. Yes, a colonoscopy is the gold standard- it will show what's been and is going on. My blood tests invariably have raised inflammation markers.
Yes- my inflammation calms down in one spot then flares up again somewhere else. Hope this helps- good luck. K.
03-08-2014, 08:42 AM   #16
JessicaLeigh
 
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I am seeing a GI, not a GP. I was having rectal symptoms, but then the assumed inflammation went down by the time I got to the doctor. She had Crohn's on her mind, but when she did the rectal exam and there were no signs of the inflammation or bleeding I was describing, she ruled it out. She's doing some blood work which may be inconclusive. In that case, there will be no MRI and definitely no colonoscopy. She actually works with a lot of IBD patients by choice, but I don't think she is assuming the worst on an 18 year old girl without the typical symptoms. I also don't know if the suspected Crohn's disease has been the issue all along, or if it is sudden, as in last month being my first flare. I'm young, so the scar tissue or signs of inflammation might not be so prominent.
03-08-2014, 08:53 AM   #17
JessicaLeigh
 
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Have any of you had to bring up Crohn's yourself to your doctor? How did you do it and how did it go?

Part of me wants to, and my therapist tells me I need to, but I feel really intimidated. I've been called a hypochondriac and sent out of the office when I thought I had Hashimotos. Turns out I did.
03-08-2014, 12:12 PM   #18
Jennifer
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Hi JessicaLeigh and welcome to the forum! I saw your message in the live chat.

So far your GI is really dragging this out. A rectal exam is common for sure at first along with blood work and stool tests. But when you said that they felt that Crohn's was unlikely because of the rectal exam, I wanted to bunch my monitor. Your GI is an idiot if they think that Crohn's only affects the anus and rectum. You need a colonoscopy with biopsies taken in order to get a diagnosis. If the scope doesn't show anything then you can do imaging tests like an MRI, MRE, CT scan, Small Bowel Follow Through, Pill cam and even an ultrasound (this is more of a last ditch effort).

You don't need to have typical symptoms of Crohn's. So far the only one you don't have is diarrhea yet we have many who mainly deal with constipation on the forum. You have had mucus, blood in your stool, fever, fatigue, joint pain, abdominal pain etc. That doesn't mean it is Crohn's but it means you need further testing to find out what's wrong so it can be properly treated.

Age has absolutely nothing to do with it. In fact more and more patients are experiencing symptoms and being diagnosed at younger ages. When I was diagnosed at age 9 I was told that only middle aged and the elderly get Crohn's. That information was wrong then and it's wrong now.

You have a new GI and you need tests done. Flares don't just zip in and out. Just because you're feeling better than you were doesn't mean there isn't still inflammation and scaring. Ask your GI to do a stool test to check for any parasites etc (that's the norm at the beginning) and ask them to do the Faecal calprotectin stool test for inflammation if your CRP and ESR are in the normal range (even slightly above normal shows that there is inflammation somewhere in the body). If your GI didn't find a fissure or hemorrhoids during the rectal exam then you were losing blood further up, possibly from the colon based off of your constipation (if you had diarrhea then the blood could be coming from the TI or higher even though it's not common to be so red from higher up, it is possible). Next up is a colonoscopy and go from there. If they refuse, find a new GI who isn't a complete dip.

You shouldn't have to plead with your doctor to do basic tests based off of your symptoms. So don't worry about asking them to test properly for Crohn's or Ulcerative Colitis etc. You want proper treatment, the name doesn't matter.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-08-2014, 12:13 PM   #19
DJW
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Hi JessicaLeigh. Unfortunately getting a diagnosis can be difficult. IBS is a very "common" diagnosis at the begining. I'd suggest keeping a symptom and food log. Keep pushing for answers. Sending you my support and best wishes.
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03-08-2014, 06:37 PM   #20
Justin1982
 
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Hi everyone. I am new to joining this site, but I've been reading posts on here religiously for the past few weeks.

I really need some input on being diagnosed, and maybe some validation or similar stories.

I want to know if it is possible to have Crohn's Disease without detection from a doctor because you never saw them during a flare.

For a little personal background, I've had stomach issues my entire life, mainly IBS related, but lately the symptoms have gotten so bad that it cannot be just IBS. My mom, my therapist, and I all believe that I have Crohn's Disease based on symptoms, but when I finally got an appointment, a month had passed, the flare ended, my physical exam came back normal, and she said all I had was IBS.

I read that Crohn's disease cannot be detected unless it is active, or there is a lot of scar tissue from years of activity.

I don't seem to have the most typical Crohn's, so getting diagnosed is even harder. Most Crohn's affects the ileum or caecum, but I am have symptoms of inflammation in my colorectal area (possibly other places, but that's the worst)

During the assumed flare, I was feeling cramps, sharp pains, and point tenderness around my descending/sigmoid colon, thin soft stools, or pebbles covered in mucus. If the stool was larger in diameter, I would get major pain and a bit of blood on the toilet paper almost every day. Everything was hard to force out, even when soft. I felt like my anus was too small (this is what led me to Crohn's). There is no way there was no inflammation going on. I wish I had a rectal exam during the actual flare because this was NOT IBS.

I am also experiencing extra-intestinal manifestations, including major fatigue, joint stiffness/cracking/pain, severe back pain around the belt-line (I have a herniation, but this seemed to directly relate to the time the flare was going on), night sweats, low-grade fevers (around 99.2, my regular temp is 97), anemia/low iron, etc. I also have hashimotos thyroiditis, which is also an autoimmune, making it VERY likely that I will get another one, seeing as my body is already fighting itself.

I have done a lot of research trying to figure this out, and hypochondria was completely ruled out by my therapist, so please don't call me a hypochondriac. I'm just educated (biology is my passion) and really trying to figure out what is going on. I need some help or advice, because I'm supposed to go away to college in August, and this is going to make it difficult
Hello Jessica,

Your question is a two fold one. You can have a disease and be misdiagnosed, but require a doctor to find evidence of the disease, to ascertain a medically recognized prognosis. In my case, it took 20 years and dozens of doctors to find one that wasn't a self absorbed asshole with a preconceived notion that I was a hypochondriac.

Thanks to all the quackery, I had dozens of kidney stones ranging from 1/4th to 1/2 inch (6mm to 1.2cm). My pain levels were through the roof. I had significant weight loss (over 120 pounds at peak), diarrhea, extreme fatigue, problems sleeping, eating, low potassium, low vitamin d, and anemia. Found some of that out once I got diagnosed.

Rest of the time, I had IBS and needed to quit bitching in no fewer words.

So not to hijack the thread, but I hope you get my point. You can't self diagnose or receive treatment without being under a doctor's care.

Suggested Tests:

1) Celiac Panel - Rule out gluten allergy

2) Fecal Occult - Check for Lactoferin Leukocytes in Stoo. Positive results are true positive and indicate Crohn's. Negative doesn't mean you don't have Crohn's, just further investigation required.

3) Colonoscopy with random biopsy.

4) CT enterography with contrast

5) CBC / Blood Work to Check Levels

Good luck. All else Fails. Might truly be severe IBS.
03-08-2014, 06:40 PM   #21
Justin1982
 
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But if the inflammation went down after the flare, how would an MRI pick up anything now? My doctor wants to do blood work to rule things out, and based on that might do an MRI. She's checking my C-Reactive Protein, but I don't think it will show anything at this point, further validating her opinion that I just have IBS. I am so confused and frustrated.
Crohn's is different from IBS. IBS causes no long term damage and is a constitutional disorder. Crohn's is an autoimmune problem. As a result, Crohn's leaves lasting signs. Flares leave "traces" because they are damaging to the colon.

See my earlier post on the tests required that might help
03-08-2014, 06:55 PM   #22
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I am completely aware of the differences between IBS and IBD. I have had IBS my entire life. I know what it feels like, I know my symptoms, and I know that this isn't IBS. I also know that it is not Celiac disease. I have been tested for that 4 different times throughout the past few years. I have a gluten sensitivity, but I get a very specific response. I get cramping in my upper stomach and back for about an hour after consumption. That's it. Nothing else has come of it, it is a mild sensitivity.

I have borderline personality disorder with OCD tendencies, specifically an obsession with symmetry within my body. I am very aware of my body. I know if something is wrong, even though my entire body doesn't work right. This is different.

I have had visible blood and vitamin deficiencies; IBS does NOT cause bleeding. I have issues passing stools to the point of sore abdominal muscles afterwards, without having hard stools. I took a mild stool softener and had poop pouring out of me. Because I was not really constipated. This points to inflammation.

I wrote this post for advice on dealing with a doctor who seems to have immediately ruled out something that I have many symptoms pointing to, without doing any tests. I am scheduled for blood work, but they are often inconclusive, and have a doctor who doesn't want to do such invasive tests on a young girl who looks healthy. I am 18 years old with no support system within my family, and I need HELP. I don't need to be reprimanded or talked down to. I have done my research and all of it points to Crohn's or colon cancer. I have found no other reasonable diagnosis.
03-08-2014, 07:05 PM   #23
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I am completely aware of the differences between IBS and IBD. I have had IBS my entire life. I know what it feels like, I know my symptoms, and I know that this isn't IBS. I also know that it is not Celiac disease. I have been tested for that 4 different times throughout the past few years. I have a gluten sensitivity, but I get a very specific response. I get cramping in my upper stomach and back for about an hour after consumption. That's it. Nothing else has come of it, it is a mild sensitivity.

I have borderline personality disorder with OCD tendencies, specifically an obsession with symmetry within my body. I am very aware of my body. I know if something is wrong, even though my entire body doesn't work right. This is different.

I have had visible blood and vitamin deficiencies; IBS does NOT cause bleeding. I have issues passing stools to the point of sore abdominal muscles afterwards, without having hard stools. I took a mild stool softener and had poop pouring out of me. Because I was not really constipated. This points to inflammation.

I wrote this post for advice on dealing with a doctor who seems to have immediately ruled out something that I have many symptoms pointing to, without doing any tests. I am scheduled for blood work, but they are often inconclusive, and have a doctor who doesn't want to do such invasive tests on a young girl who looks healthy. I am 18 years old with no support system within my family, and I need HELP. I don't need to be reprimanded or talked down to. I have done my research and all of it points to Crohn's or colon
cancer. I have found no other reasonable diagnosis.
I wasn't talking down to you so please relax. I gave you a list of tests that doctors will perform to RULE OUT other underlying causes.

Now if you don't want our advice, that's fine. Many of us are twice your age, have lived with Crohn's a long time, and run the gauntlet. I'm merely letting you know WHAT the typical route a doctor must undertake to reach a conclusive diagnosis.

Celiac can cause many symptoms you've described, so it was worth asking. If you are gluten sensitive, then you are already avoiding trigger foods.

Time to move down the list.

Everyone here has suggested the same course of action. You need to be up front with your doctor and assertive. I made the huge mistake of "accepting" a diagnosis and having the last 20 years be a living hell. Doctor and Doctor kept getting me wrong.

Moral here.... Look at what we've said. Write down questions for the doctor. If you aren't happy or feel dismissed, find ANOTHER DOCTOR. It took me a good dozen before I found some of the #1 Hospital in the Country telling me I've had Crohn's all along.
03-08-2014, 07:14 PM   #24
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You are the only rude one. Everyone else gave advice in a nice, supportive manner. I appreciate that. You sound more like a judgmental jerk.

I know what tests are available, I need help getting those tests. I need advice on how to approach my doctor, what questions to ask, how to bring up a disease without coming off as a hypochondriac, etc. You said it; you all are twice my age with experience. Many different doctors and tests and appointments, so help me with interacting with them. I am barely a legal adult, and I am scared. I'm supposed to know how to advocate for myself at 18?
03-08-2014, 07:22 PM   #25
Maya142
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Could your mom accompany you Jessica? My older daughter is around your age and I still go with her to appointments sometimes, particularly if she is seeing a new doctor since she has a long complicated medical history.
Since you have had IBS all your life, I would just say this pain and your other symptoms feel different from your usual IBS symptoms, and you are concerned there is something else going on. Like I said earlier, a fecal calprotectin is a reliable, non-invasive stool test that will tell you if you have gut inflammation. My daughter was scoped only after her calprotectin came back high, since she didn't have typical symptoms.
It's really important to have a doctor you can talk to comfortably, so if your current GI does not listen to you, it might be a good idea to get a second opinion.
03-08-2014, 07:32 PM   #26
Justin1982
 
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You are the only rude one. Everyone else gave advice in a nice, supportive manner. I appreciate that. You sound more like a judgmental jerk.

I know what tests are available, I need help getting those tests. I need advice on how to approach my doctor, what questions to ask, how to bring up a disease without coming off as a hypochondriac, etc. You said it; you all are twice my age with experience. Many different doctors and tests and appointments, so help me with interacting with them. I am barely a legal adult, and I am scared. I'm supposed to know how to advocate for myself at 18?
Jessica, what you're interpreting as being a "judgmental jerk" is actually pragmatic advice. I know you're scared but I am telling you that the BEST ADVOCATE is YOU!

There's NO JUDGEMENT in offering an opinion to walk into the doctors office prepared. Write down questions in advanced. Then, you can ask without being nervous and forgetting.

Doctors aren't miracle workers, vary in experience, and if you aren't happy I ENCOURAGE you to seek out another physician.

A doctor that walks in ASKING you questions and looking for an answer = stands better chance at finding the problem

A Doctor who shows up, offering a diagnosis, and refusing to hear you out = Impedance.

I've been in your shoes. I know it's frustrating. I'm just telling you in a very direct way to speak up and be forthright. Maybe have your mother or friend accompany you for support?

There's no golden rule to getting a test ordered, even the one's we've all described. Here's where building a trusting doctor / patient relationship is key. If you don't trust the physician, it'll be hard to get those tests.

Good luck.

Last edited by Justin1982; 03-08-2014 at 09:18 PM.
03-08-2014, 07:32 PM   #27
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Could your mom accompany you Jessica? My older daughter is around your age and I still go with her to appointments sometimes, particularly if she is seeing a new doctor since she has a long complicated medical history.
Since you have had IBS all your life, I would just say this pain and your other symptoms feel different from your usual IBS symptoms, and you are concerned there is something else going on. Like I said earlier, a fecal calprotectin is a reliable, non-invasive stool test that will tell you if you have gut inflammation. My daughter was scoped only after her calprotectin came back high, since she didn't have typical symptoms.
It's really important to have a doctor you can talk to comfortably, so if your current GI does not listen to you, it might be a good idea to get a second opinion.
Thank you for your response. The issue with my mom is that she has the mindset of a child, and is very uneducated. She really tries, but she ends up blabbering during my appointments, making me more anxious. She has her heart in the right place, but she makes things more difficult. During the consultation with this new doctor, I was trying to explain my symptoms thoroughly, but my mother would cut me off and begin a spiel about how she has had similar issues her entire life, etc. I ended up giving a terrible explanation of my symptoms and couldn't express myself properly. I feel really lost now, because it's partially my own fault that she minimized my symptoms. I don't want to switch to a new doctor because she's intelligent, and sweet, and a female, which is very important to me for personal reasons. She has great reviews, but now I don't know where to go with this. Especially because of my past with being called a hypochondriac.

My therapist recommended that I write her a letter about how I don't think I fully expressed my symptoms or concerns, and then follow up with a list of everything. But isn't that kind of strange to do?
03-08-2014, 08:13 PM   #28
mere282
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First off take a deep breath:-)
No one here is unkind or judgmental.
I know how stressful this can be. I had a dr
See me at one visit ,hand me a diet and
Told me it was all he could do. His PA's jaw
Hit the ground. He was rated one of the top 25
In my state. Sometimes it seems like the perfect
Doctor and it's just not. If you can't express yourself
Without fear then this dr can't help you. Making
A list is a good idea. Right all your questions
Down,concerns anything you want answered. I agree about
Some of the tests mentioned. They are standard if I don't see crp on
My script I'm surprised. It's hard but you can
Do it. Know one else will be a better advocate than you:-)
03-09-2014, 05:41 AM   #29
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It may be possible, but I can't see any reason to suspect you have Crohn's as oppose to any other condition that can also escape detection much of the time. Crohn's is common, so you'll come across it a lot when you research, when there are an infinite number of other rare conditions that you won't.

You can't diagnose Crohn's based on symptoms, and since you say your symptoms are not even typical of Crohn's, I think you should not focus too much on Crohn's without more evidence.

I'm speaking as someone who went years and years with a progressive neurological disease; I read so much and saw so many doctors, and no diagnosis seemed to fit my condition. Turned out I had a unique condition, caused by a genetic defect (at least, that's what the expert doctors suspect), that simply isn't recognised as an existing condition. I could have researched forever and never have come across a diagnosis that fit.

There are just too many things that can potentially go wrong with a person for it to be accurate to assume based on symptoms (although there are conditions where the diagnosis is symptom-based, but these tend to be disorders of exclusion, and very vaguely defined, such as IBS). Confusing symptom-based diagnosing even further, you could have more than one condition (I do), so finding a diagnosis that covers every symptom may be a red herring. Or you could have an extremely rare - or even unique - presentation (i.e. symptoms) of a condition, which might mean that, if basing a diagnosis on symptoms, the diagnosis that fits best could be wrong, while the correct diagnosis seems unlikely.

I completely understand why you're unsatisfied with an IBS diagnosis - as I said above, I don't think IBS is a helpful diagnosis at all since its criteria are so vague. And I think it's the fact that its criteria are so vague that means some doctors find it useful - they can use it to capture any patient with digestive symptoms in whom another diagnosis escapes their detection. But I'd be wary of assuming its Crohn's based on symptoms, when there isn't a clear reason why Crohn's is more likely than one of the endless other causes of digestive dysfunction other than the fact that Crohn's is a common disease.

I'm not sure if my answer helps you - I don't know if Crohn's can fail to show up on tests if the tests are performed when you're not flaring. But (and my opinion may be influenced by my own experience of having an unprecedented medical condition), even if it's not been officially proven that Crohn's can fail detection in this way, I would certainly be open to the belief that it can be. It seems to me it would be very difficult to prove or disprove in medical research.

But I'd suggest you be open to the possibility that you may have something that's neither Crohn's nor IBS, especially if you have symptoms that relate to areas other than the digestive system. Digestive dysfunction can be caused by conditions not primarily categorised as gastroenterological - neurological conditions, gynaecological conditions, rheumatological conditions; these can all cause digestive problems. So seeing a doctor from a different field, and undergoing tests which explore other body parts, may bring you information that you would not obtain if you are mainly concerned with detecting Crohn's.

Last edited by UnXmas; 03-09-2014 at 06:01 AM.
03-09-2014, 06:18 AM   #30
UnXmas
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Also, what tests have you had? Just blood tests and a rectal exam? (I'm sorry if you posted this already and I missed it). I'd assumed at first that you'd had more than that, but reading some more of your posts it sounds like you've not had much investigation done at all? Which tests did you have to rule out coeliac?

There are conditions other than inflammation that I believe can cause issues such as you describe regarding the inability to pass stool even though it is soft. Before I got an ileostomy, I had a rectal prolapse a few times. There are also other causes of "obstructive defectation", such as neurological problems affecting the sphincter muscles. Possibly haemmorhoids could cause similar problems. These conditions can make it very hard to pass stool, even soft stool (though very liquid stool may come out more easily). I obviously don't know if you may have any of these, but you might want to google them and see if any sound like they could apply to you. A colorectal specialist may be a good person to see. Some types of prolapse are better detected by a gynaecological exam. How thorough have the rectal examinations you've had been? My colorectal surgeon used to do a digital rectal exam, but also use a camera - nothing like a full colonoscopy, just a camera on a very short scope which only examines the very last part of the bowel, which is obviously not a very invasive test at all.

So again, I'd avoid assuming that inflammation (or anything else) is/was the problem until there is more evidence and more has been done to rule out other possibilities.

If your main problem is getting a doctor to run proper tests, seeking opinions from doctors from another field may be a way of finding a more understanding doctor - the more you see, the more likely you'll find a doctor who is helpful. You shouldn't have to work so hard to convince a doctor you need more tests. Personally, I don't like to be in the position where I feel I'm having to convince a doctor that I'm ill (which I've experienced a lot in the past). Now if I find myself in that situation again, I'd just move on to another doctor. I understand this can be difficult, and there's the worry you'll just end up seeing doctor after doctor, but it's so important to have a good relationship with your doctors.

Last edited by UnXmas; 03-09-2014 at 06:39 AM.
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