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"Preliminarily" Diagnosed with CD

Hi! My name is Jessica, but I go by Murphy. I am a 25 year old female who has been chronically ill for as long as I can remember. I was diagnosed with major depression, generalized anxiety disorder, and obsessive compulsive disorder shortly after my father committed suicide in 2006. My life has always been high stress; I have lost three of my grandparents, both of my parents, and quite a few friends and loved ones over the years.
When I landed myself in the ER several times between 2010-2011, I was told that I had colitis that should resolve itself with flagyl and cipro. This was diagnosed based on symptoms and CT/ MRI scans. I was referred to a gastroenterologist in December of 2011 after my second "colitis" ER visit, and quite a bit of testing was performed. My symptoms appeared to drastically dissipate until 2012. I was feeling very ill after each meal, varied constantly between constipation and diarrhea, and was in considerable abdominal pain most times that I ate. Despite a year of HIDA scans, CTs, bloodwork, EGDs, and other testing, there was no clear cause of my symptoms. My mother had had a cholecystectomy in 2011 that lead to the discovery of tumors and a diagnosis of cholangiocarcinoma, so we were acutely aware of my heightened risk of liver/ bile duct issues and gallbladder dysfunction. My GI and a surgeon eventually made the decision to perform a cholecystectomy on me in August of 2013. My gallbladder was lesioned and clearly diseased upon removal, but my symptoms did not change much after the surgery. My GI wanted to do a colonoscopy, but we had just restarted our fiscal year for insurance and, as a college student, I simply could not afford the procedure. We tried Welchol, amitriptyline, bentyl, Pepcid, omeprazole, and quite a few other meds with no improvement. I got angsty and decided that I would be suffering regardless of whether or not I spent all my time and money at the doctor, so I stopped going and just tried to roll with the punches as best I could. I get sick really frequently (especially UTIs due to a malrotated kidney) and when I woke up in considerable pain in February of this year, I decided to see my PCP about it. Labs, a CT, and urinalysis were performed for suspected kidney stones (I've had them twice), and while no stones were found, a mass on the quadrate lobe of my liver was discovered. More CTs, bloodwork, and ultrasounds gave us no answers, so I was referred back to my GI, who noted that a CT performed in 2013 showed no evidence of the mass on my liver. I was screened for tumor markers, liver function, diabetes, hepatitis, and went in for an abdominal tumor screening. It was found that I have two fatty masses on my liver (and no cause has been determined), and that my ceruloplasmin is high. It was also noted that I have severe inflammation of both the large and small intestine. An EGD was performed, biopsies were taken, and the decision to perform a colonoscopy was made. The colonoscopy showed diseased tissue in my ileocecal junction and distal rectum. Biopsies came back "suggestive of Crohn's disease", and last week, a "preliminary" diagnosis of CD was given.
I went in Wednesday to have labs drawn and was put on Pentasa. After three doses, I developed itching, raised bumps/ rash, and redness on the tops of both feet and the inside of both forearms. It has since been determined that I had a systemic reaction to the Pentasa. I stopped that Thursday night and have yet to be placed on something new. I am currently on fluvoxamine cr 150mg every evening for OCD and MDD, clonazepam 0.5mg as needed for anxiety/ panic attacks, levocetirizine 5mg daily for allergies, microgestin 1/20mcg daily to stabilize hormones and mood, bupropion xl 150mg daily for GAD and MDD, hydroxyzine hcl as needed for sleep, dicyclomine 20mg as needed for abdominal pain, ondansetron 8mg odt as needed for nausea, and famotidine 20mg as needed for heartburn. Has anyone else not had a "slam dunk" case of CD/ been given a preliminary diagnosis? Thanks guys!
 

cmack

Moderator
Staff member
Hi Murphy,

Welcome, I'm so sorry to hear about your father and all the bad situations that have happened in your life. I honestly don't have the answers but you can pm me any time and have a talk if you like.

Your new teammate,

cmack
 
Hi Murphy. You've really been through the works, haven't you? Many people on the forum have long and sometimes complex diagnostic stories. Sometimes people are diagnosed quickly, but for many (like you), it takes years to be diagnosed. I first showed symptoms of crohn's in my duodenum in 2004, but responded well to high-dose PPI treatment so I didn't think much more about it until I was hospitalized with a bowel obstruction in my jejunum in 2013. Since then I have been on Entocort on and off, but was hospitalized again last spring for another obstruction. I began taking 6MP last May but it caused severe pancreatitis which took forever to resolve so I am back on Entocort. The next step for me is Humira.

I am so sorry you have been sick for so long. Do your doctors think any of your liver issues are a result of crohn's? Or are they completely separate? Many crohn's patients take antidepressants (I myself take Celexa for migraines and Wellbutrin for depression. Having a chronic illness can take a toll on one's mental resilience.

If you check out Undiagnosed Club Support Group you will probably find many stories to which you can relate. I hope you begin to feel better soon.
 
Thank you guys! My doctors seem to be more concerned with nailing down a diagnosis/ treatment plan for the intestinal issues than going back to look at the liver issues right now, and that is my main focus as well. It is possible that the liver issues are associated with Crohn's (I was told the gallbladder is very frequently affected with CD and that is probably why mine had to go), but the possibility exists that it is a hereditary issue linked to my mom's liver disease, or even that it is completely unrelated. I will definitely check out the Undiagnosed Club! My doctor ran genetic testing that he says should help us to know whether or not I'd experience side effects if put on a biologic. I believe the next step for me is Remicade, but we have gone back and forth with options, so we'll see!
 
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