Going to College W/O Answers

[lells033]

So I've had lots of tests. All the tests I think possible, actually. I've been dealing with gastrointestinal issues for about 2 years now and I'm now at my second GI, whom I really like. He decided (after my first GI couldn't make up her mind and had me on everything from Prednisone to Methotrexate with no real answers, her nurse practitioners each telling me I'm not sick) that on top of acid reflux (which I treat with Lansoprazole and Tums and have generally under control now), I show symptoms of IBS and prescribed a low dose of Fluoxetine (Prozac), which has helped. I can, generally, eat a meal without having to use the bathroom immediately and successfully visited Europe with a school group for 10 days without incident.

However, despite urgency being under control, I still seem to have flare ups. I've spent the past three days in bed with horrible, crippling stomach pain in the lower right side of my abdomen and joint aches, low-grade fever, chills, headache, and nausea that just won't quit (I take Zofran religiously). Even since I have been on the Fluoxetine, my nausea is horrible and sends me running to the bathroom to heave even during the school day (when I manage to go).

My concern is that I do not, from the pathology, have a disease, so there is nothing to be done. However, it is my understanding that even IBS sufferers should not have constant nausea and pain this severe that does not seem to have relief or cause. I have lost 10 pounds in the past few months (which isn't a whole bunch, but is noticeable on a 4"11, 110 pound 18 year old).

These flare ups worry me as I am going to college in the fall. I am afraid I will not be able to attend class as I should and will not be able to keep up and will lose my scholarship. Does anyone have any advice or a similar situation they could share to help me deal with this? I'm not trying to self diagnose, but as I have been treated with Crohns medications I felt this was my best place to seek advice. Thank you!

 

[Orchid]

There are a lot of things you could have at this point but your symptoms do match up really well with CD, so don't worry about it. The wicked thing is Crohn's can easily be a quiet, subtle disease. Unless you do a colonoscopy with biopsies and the endoscopist gets lucky and randomly picks an area to biopsy that has microscopic signs of colitis (assuming there are no visible signs) it won't even show up there in some cases. People can go years with a diagnosis because while they have all the symptoms there is simply no bloodwork to back it up, so you're not crazy. I'm assuming in addition to blood tests you've done fecal calprotein? That tends to be the most accurate test of GI tract inflammation.

We have a whole forum for those who suspect they have some form of IBD but no diagnosis and a support group also! You're not alone in having these symptoms seemingly without cause. I'm going to ask TheOcean to talk about going to college with IBD and your other concerns.

 

[Brenden]

I am pretty much in the same boat as you. One thing I realized though after all that testing is that even with IBD symptoms the IBD itself shouldn't be "too severe" because its not coming up on any tests. However this may be only temporary... Best of luck.

 

[lells033]

Thanks to both of you!

And Orchid, yes, I have done fecal inflammation tests. Those were sketchy - at the time my results were at a 130, I was on 4 mg of Apriso daily, Entocort, and had just stopped Methotrexate because of the side effects.

Another question, if anyone has any answers - from experience, does anyone have any suggestions of other avenues I should check out should this not present as CD?

 

[Orchid]

There is one bacterial infection that strongly mimics Crohn's Disease called Clostridium difficile (C. Diff for short) but this is a rare infection in the healthy. It requires exposure to antibiotics that kill your natural gut flora AND spore indigestion. It happens fairly often in people with Crohn's on antibiotics, so it's questionable if you actually have it. If you well and truly don't have CD the next step would likely be to see a rheumatologist and see about autoimmune diseases like lupus.