Can you help...???? Advice and Opinons

[Mvan]

Hi there I am new to this site, and I honestly am just looking for advice and information on Crohns disease. I have been struggling with SOMETHING for the past 5 years... I have had a lot of testing done and also a endoscopy and have not been diagnosed, Have spent thousands of dollars on appointments and testing, but now after research I am wondering if Crohns may be the answer... I am looking to see what the symptoms people have are.. and also how they got diagnosed. A little history is i got really sick after having my son 5 years ago, could barely eat everything made me nausea and sick. I finally got my gallbladder removed and that help for a little while but i do not think was the main problem. After having it removed I felt a little better but still got sick ( diarrhea, nausea, vomiting dizziness). Since then I have been in the emergency room multiple times and all they can figure out is to mask the pain and cramping and diarrhea with meds, Pain meds or they relate it back to my gallbladder surgery and removal.. well that in my eyes is not the case, there's something more serious going on and I can feel it... Kind of like a mothers intuition.. I just am not right something else is going on...No one believes me there's something more serious but I am sick almost daily I am having BAD symptoms and get completely sick and bedridden at least once a week...I need help and My doctors are complete idiots I have been to multiple appointments and tests done any advice or knowledge I can get from someone/anyone that's been diagnosed would help so much and maybe i can steer my specialist in the right directions.. I am at a complete loss and I am so exhausted and just want to know what's wrong with me! :sign0085:

Thanks in advance!

 

[The Real MC]

Diarrhea, nausea, vomiting, dizziness do not always point to Crohns. Pain and cramping - they might. Can you give more specifics on those symptoms?

Have you tried changes to your diet? Certain foods can trigger the cramps and pain, but no two CD patients have the same trigger foods. Ask your doctor about a bland diet, these are designed to ease any irritation of the digestive tract. If that calms down the system, add other foods slowly and start the isolation process to identity trigger foods. Unfortunately there is no easy way to do this.

 

[Mvan]

I have tried every DIET and food restriction and nothing has helped or changed it. I get cramping pains that make me want to throw up (some times do) and have had blood in my stool a few times. The flare ups come and go...I have worked with my doctor on different diets and also testing but quit going due to racking up a huge medical bill trying to find out what's wrong.

 

[Clash]

I can list some of the tests associated with a CD diagnosis and maybe you could request ones you haven't had.

Non invasive
Usually a lead up to the more invasive tests when dealing with IBD are blood work, checking for raised inflammatory matkers (not all CD patients have their active disease show up in bloodwork), a fecal calprotectin stool test can determine if there is inflammation present in your bowels but is not specific for CD. Still if you have high fecal calprotectin result then further testing might be necessary. There is also the prometheus testing which is a specific set of blood work some GIs use to see if CD is a possible dx. It is not 100% but can give indication that more testing is needed.

Imaging such as MRI, MRE can give a good view of areas of small bowel that aren't reached by upper endoscopy or colonoscopy. Also a pill cam can be useful for the areas not reached by scopes.

So the more invasive tests are a colonoscopy and upper endoscopy with biopsies. These are generally the gold standard in dxing CD although it isn't true for all patients.

CD can vary greatly from person to person depending on location of disease as well as other factors. Some experience diarrhea other constipation, some have bleeding others do not, vomiting can be common for some and not others. Of course pain can be present as well as multiple bms and such. Some patients are even asymptomatic.

I think most importantly if you think you have something going on become your own advocate. Keep pushing for answers. Keep food journals as well as bathroom journals and symptom journals.

I hope you find some answers soon.

 

[Mvan]

Thank you ill keep those in mind when I go in next! They did a endo but I do not think they did the right test needed to diagnose me

I can list some of the tests associated with a CD diagnosis and maybe you could request ones you haven't had.

Non invasive
Usually a lead up to the more invasive tests when dealing with IBD are blood work, checking for raised inflammatory matkers (not all CD patients have their active disease show up in bloodwork), a fecal calprotectin stool test can determine if there is inflammation present in your bowels but is not specific for CD. Still if you have high fecal calprotectin result then further testing might be necessary. There is also the prometheus testing which is a specific set of blood work some GIs use to see if CD is a possible dx. It is not 100% but can give indication that more testing is needed.

Imaging such as MRI, MRE can give a good view of areas of small bowel that aren't reached by upper endoscopy or colonoscopy. Also a pill cam can be useful for the areas not reached by scopes.

So the more invasive tests are a colonoscopy and upper endoscopy with biopsies. These are generally the gold standard in dxing CD although it isn't true for all patients.

CD can vary greatly from person to person depending on location of disease as well as other factors. Some experience diarrhea other constipation, some have bleeding others do not, vomiting can be common for some and not others. Of course pain can be present as well as multiple bms and such. Some patients are even asymptomatic.

I think most importantly if you think you have something going on become your own advocate. Keep pushing for answers. Keep food journals as well as bathroom journals and symptom journals.

I hope you find some answers soon.