A little intro about my story

Hey there!

I'm commonly known as Jin, and I'm from Miami :smile:

So about my "story"... it's still in the process, and it's quite the frustrating one. I'm sure I'm not the only one frustrated or confused, however I'm at that point where I just don't know what to do anymore.

It pretty much all started about a year and 10 months ago. I began to have sharp intermittent pain in my lower right quadrant while at work. Thereafter I had nausea and loose stool. Obviously, I had no appetite, but strangely I took different over the counter "solve your problem" meds and nothing really worked. At times it seemed as if I was feeling worse, so I decided to stop medication since I hate taking them in the first place and resulted to natural teas. Those worked just as good, by not working at all. I was barely eating and it got worse as I ended up not eating anything but 3 soda crackers a day for 4 days in a row. I'm also borderline hypoglycemic to which I found out the hard way from not taking in enough sugar. I nearly fainted while driving the following day. At the ER they did the usual; Blood work, EKG, X-Rays & (since nothing showed on there) an ultrasound. They thought my symptoms were kidney/gall bladder related. Instead, my u/s showed I also have multiple cysts in my ovaries. They then ruled out that my pain and nausea was ruptured cysts and advised me to see a specialist accordingly.

2 months later, I had continued nausea, sharp pains, & now lots of bright blood in my stool. Naturally I thought I was bleeding internally from an ulcer by not eating properly. I felt super dehydrated and I drank water as well as electrolyte enhanced water, but I was still very dehydrated. My mom, whom is a nurse in the OR, recommended a GI specialist which has been practicing GI related issues for over 30 yrs. He asked me 101 questions and finally decided to run blood tests, CT scans, and a barium one also. I'm sure I'm not the only one that thinks chalk would be a lot more tolerable than that drink lol

Back and forth with over 15 different exams/procedures including upper & lower endoscopies, they found severe ulcerations, inflammations, and very little polyps. A prometheus test showed that only 1 or 2 of the proteins came up as positive for Crohn's, so my doctor at the time gave me a mild sedative/anti-inflammatory and an anti-acid to prevent the ulcers from worsening. These obv didn't work....


ANYWHO... fast forwarding to now, I've seen over 7 differen't doctors and NO ONE can tell me if what I have is Crohn's for sure. As a matter of fact, I was diagnosed w/ colorectal cancer a couple of times and IBS/IBD/ect. I'm starting to get beyond frustrated. I've developed skin rashes on my feet and legs as well as acne on my face which I've never had prior. A doctor had me on Asacol for 2 months, and from 1 month to the next my vitamin D & B's dropped severely so I'm getting shots for those.

Today, I saw my doctor at the University of Miami hosp. and he suggested I start on immunosuppressants ASAP to treat my "Crohn's" but I haven't been 100% diagnosed yet. I've been having constant sharp crippling pains in my abdominal upper left quadrant and nothing shows in the endoscopy so I'm not sure if this is related but it literally leaves me unable to move at times. My family has very strong ties to cancer ranging from my grandparents and as close as my mother and sister. Lymphoma is a VERY high risk for me and I'm honestly not sure what to do. I was advised to get my Flu/h1n1 shot and a TB test....

Sorry for the novel but I needed to vent a bit and get some suggestions or feedback if at all possible. Thank you for reading my babble

Welcome Jim!! There's an undiagnosed club started by Cat-a-tonic. I think it's in the Support Forum. You are not alone in your frustrations, I can assure you. Good luck!!

Hi welcome to the forum. You are in the right place maybe we can help you in some way. If you are having issues getting a DX you might want to look into Dr. Shiniski in Gainsville FL or The Mayo clinic they have both been recommended to me numerous times as the "Places for Crohn's" in Florida.

Welcome! As you have probably read, you are not alone in having a hard time with a diagnosis. It can be very frustrating and you'll find many here who understand. I'm pretty new, but I came across a thread the other day "were you diagnosed correctly the first time" (don't remember which forum), but the vast majority said no.
You know your body better than anyone- so keep listening to it.
I switched doctors in the middle of my 3rd hospialization with no firm diagnosis. My doctor's new associate suggested that all of the testing wasn't making me any better, and thought it best to treat what "walked like a duck and quacked like a duck". He's been my doctor ever since.
Hope you find your answers soon!

Thank you! I really appreciate your feedback so far. My next trip is actually the Mayo clinic, so hopefully I can find a more definitive answer there. Again, thanks, I really appreciate you taking the time to read my situation.

Well, it's been a year almost since I last posted on here. It has been such a wild journey trying to figure out and pin point a proper diagnosis. Finally the end result IS in fact Crohn's.

One doctor insisted 6MP, thought I think that's a bit harsh to start off. So my new doctor says pentasa to start off is the better option. Possibly incorporating some steroids (which I'm not fond of using either).

Any suggestions or exp. using any of these methods?

Hi Jin

Welcome back though I'm sad you had to come back

Pentasa is considering a maintenance drug rather than one to put you into remission. Though if they're considering putting you on steroids, that duo might do the trick. If you're not fond of the idea of steroids (understandable) you may want to check out our elemental nutrition forum as EN has been shown to put people who stick with it into remission about as often as steroids.

I wish you well, do keep us updated!

Thank you for the feedback! I'll look into the EN alternative and speak to my doctor about it.

It's not fun having to return but I appreciate the support I've gotten through it all the few times I've been here.

I am sorry to hear about your diagnosis, Jin. I hope that with whatever treatment plan you go with, it does the trick.

Good luck!

Thank you, Jill!

I'm hopeful that something is bound to work lol It took me 3.5 years just to get diagnosed. So, waiting a little longer to find the right treatment shouldn't be too bad.