# Undiagnosed: U.C.? Crohns? Lupus? Whatever?



## dumorte (Jun 30, 2014)

This might be rather lengthy, but to get the basics out of the way: 23, white Female, Florida, 5'4" and 200 lbs (I totally dont look it... its hidden) (yes I had to defend being fat) Lets start by saying I have always been sick. Ever since I was a kid ive had inflammation somewhere. I had strep 10 x a year until I got them removed at 14. I cant recall a time in my life when my stomach didnt bother me, up to this day. Ivr been on birth control since I was 15 to help with my pmdd and my hormones. Id get terrible migraines and act insane. Id go from super happy to sobbing my life away when id drop a pen on the ground. This also happened to be the first time I openly told my parents I suffer from severe depression I told them I often thought about killing myself, but they responded the worst way parents could respond. Asked me if I was on drugs, normal kids dont act like this, etc so I never brought it up to them again. When I was 19, I started having hemorrhagic cysts on my ovaries (Ive also had severe pmdd since I started my period at 11). Ive had 3 cysts the size of grapefruits or larger, full of blood, removed via Laproscopy from 2010-2012. I stopped taking my birth control because it was making me have what I assume are heart flutters (feels like someone tapping on my throat) but I havent had any terrible cysts since I stopped taking them (cross fingers). Then come october 2012, I get the worst pain of my life in my stomach. Go to hospital and after 6 days of testing and not finding anything, they do Laproscopy and see that my appendix has wrapped around my intestine, so they remove it and a small portion of my intestine. My life has not been the same since then. I started having mild ibs symptoms, my boyfriend at the time had it bad so I knew what I was looking for, assumed it was because my gi tract was adjusting to not having appendix to balance bacteria. Id say I had mild ibs symptoms from october 2012 until january 2014, when I lost my job. I lost my job because... I couldnt stop shitting and puking. I went in for a shift and 4 hours in id done 20 minutes of work. Back and forth to a bathroom, sitting there with severe pain shooting from my rectum through my whole body and up into my throat. I can only describe it as someone shoving one of those spiked maces into my colon. Not an exaggeration. I went to the hospital and they did a ct scan, said everything looked fine. No inflammation, white blood cell count was a little high, found blood in stool and a few fissures but thats it. Reccommended I follow up with primary care physician for colonoscopy. Its hard to get a colonoscopy when you have no job and no health insurance. Alas, ive been in and out of the hospital at least 4 times since the beginning of this year for the same symptoms: abdominal pain, puking mucousy looking crap, shitting bright green mucousy stool, the only time its not green is when its black and bloody, feeling like I have to go to the bathroom 100% of my day, actually spending 30% of my day IN the bathroom (half of my bathroom trips are watery stool with a that bum mace feeling I described, since I hardly ever have anything in my system to expel), my BONES hurt and I dont know how else to describe it except for when you have a bad flu and all of your joints hurt, just times 5. I get migraines that last hours, always on my right side. My back constantly feels like someone hit me with a sledgehammer right where my kidneys are. Im severely depressed already and with all of this going on, I sometimes just dont want to go on anymore. I want to start over. New body. New life. I hate this one. Im bitter and hateful and angry because I spend all my time alone at home "trying to get better" when really its just me playing hide and seek with self pity. Ive been going to free clinics for help, stomach medication. Im on bentyl and Phenergan which... doesnt seem to help my stomach but it makes me super tired so I sleep through a lot of the pain. Which brings me to another problem. For the past month or so... I have been crashing like ive never slept in my life. Ill be fine and all of a sudden, gone. Asleep. Wherever im sitting or standing. Ive never felt so tired to often in my whole life. Its INSANE. my doctors found glucose in my urine, thinking maybe its diabetes but they did a blood sugar test and ruled it out, since when they did the blood sugar I hadnt eaten in over 24 hours and my sugar was fine? Im trying to get state healthcare so that I can get a colonoscopy done, but I swear if they say they dont see anything they might as well check me in to a psychiatric ward right there because I will flip shit. All the shits. My friends mom, who is a retired nurse, thinks it could be lupus...but all my tests say otherwise, even though ive never been specifically tested for lupus. Then again all of my tests thus far have not indicated any inflammation or ulcers in my abdomen, but I know something is wrong. You dont shit bloody mucous for months because youre healthy. Ive tried changing my diet, ive tried excluding one type of food at a time to try to eliminate the culprit, but when the culprit Is your body and its trying to silently assassinate you, its hard to eliminate that... Sorry for the wall of text. Just looking for some insight... maybe some specific things to ask the next time I see a doctor. Questions welcome, I get so flustered talking about my problems and theres so MUCH to tell that I lose track of some important things.
OH. ALSO. JUST FOUND OUT LIKE 10 OTHER PEOPLE (cousins,aunts) IN MY FAMILY HAVE EITHER HAD COLON CANCER, U.C. OR CROHNS, ETC. :|

Its 5 am and I cant sleep bevause im SO nauseous. Im in the middle of a flare up now, camt even eat or drink anything, probably will end up in hospital by tomorrow...

What can I say if they dont see anything on a ct scan? No inflammation or my white blood cell count is fine with no fever? I CANT MAKE THIS SHIT UP SO WHY SEND ME HOME INSTEAD OF INVESTIGATING FURTHER?

Sincerely, 
Defeated.


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## Kathleen M. (Nov 16, 1999)

Sorry you are having such a hard time.

Usually the routine blood tests that show the white blood cell count up include a standard inflammation marker, and they don't always test for the autoimmune diseases as a follow up if your inflammation marker is always totally normal.

Keep working with the free clinics and community health center type places to get the follow up needed to work with chronic illnesses. The ER really is just there to patch you up enough to send you home (so is the hospital) they don't do the investigations that uncover the chronic problems and manage them.


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## IBS & Surviving (Jun 24, 2014)

You might go back to the doctor who removed the appendix and see if he will work with you on a follow up appointment since some of these symptoms started after that procedure. If he is at a hospital, ask to speak with a hospital administrator and request a free follow up. Worst case scenario, ask if they will let you pay off the bill $5/month.

You have a lot of issues right now, but hang in there. You're not alone!


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## dumorte (Jun 30, 2014)

I wish I could do that... but without insurance there's no way I could see him. Ive had a few doctors suggest that it might be an obstruction of sorts, but theres so many other symptoms without mentioning I ever had my appendix removed.
Like the achalasia. Ive had that since I was 14, felt like a heart atack, turns out its a symptom of an autoimmune disease. But was I ever tested? Course not.


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