My Story

My name is Sandi, and I am 43 years old. I have Crohns Disease, specifically Crohn's Granulomatis Colitis, and I have only been diagnosed positively and for certain since July 2003. Looking back over the years, I now realize it all began somewhere around the year 2000. I am a CNA (Certified Nursing Assistant) and I work in a nursing home in Florida.

Back then there was a bug going around that was causing vomiting and diarrhea, but I wasn't worried, I always use good universal precautions and when working with a sick patient I always wear a mask and gown along with the gloves.

I am also constantly using hand sanitizers all the way up my arms and neck and even the front of my uniform. People think I am weird to do this, but I am not willing to substitute my health for someone's opinion. I have never caught anything more than a cold, and all my life I have been healthy as a horse with a cast iron stomach. I never really was the queasy type.

So when I began to get nauseus, ache all over and get severe diarrhea I thought that the virus at the nursing home had somehow penetrated my safety regimen and I got sick. I thought it would pass in a few days like it had with everyone else. I was wrong. It lasted about 4 or 5 weeks, and I of course self-medicated with ibuprofen and immodium so I could get through it. Once the initial icky feelings subsided, I began to get a red lump on my lower shin just above the foot/ankle joint. It became very inflamed and sore, then it turned into a blister with a black area in the middle. I got very sick again within days and ended up in the emergency room with stool full of bright red blood, and vomiting with fever.

They did all sorts of tests, and the doctor came in and told me he was not sure but he thought I might have been bitten by a brown recluse spider and that the infection went systemic and that I had sepsis (blood poisoning) and cellulitis. He said he couldn't be sure because I didn't bring in the spider, if indeed it was a spider, and that I didn't know if I'd been bitten or not. He said the blood was from my rectum being so raw so he wrote me a prescription for Bactrim and Bentyl and sent me on my way after a 23 hour stay. This cleared it up, except the area on my leg remained open and sore for like 3 months and needed constant bandaging and debridment (removal of dead tissue) which, of course, I did myself. I had the nurses at work keeping a close eye on it for me. It finally healed but left a circular scar surrounded by dark brown tissue from the cellulitis. The ulcer scar is the size of a cigarette burn and sort of like a crater. OK, no problem now that it's over, I thought. Damned spiders.

I vowed to never hang my clothes on the clothesline again.

About 10 days later I was again at the hospital with severe abdominal pain and a lot of acid and bile in my stool. Test revealed it was pancreatitis, which, if you look it up, is a familiar illness of alcoholics and is an inflammation of the pancreas. The doctor gave me IV fluids, potassium for the dehydration, prednisone for the inflammation and darvocet for the pain. After a 3 day stay I went home, but he warned me to quit drinking. I told him I didn't drink all that much, and all he did was look at me funny. Really, all I do is drink like a beer or two once in a while and I never go to bars and never never never drink if I have to drive somewhere. I didn't realize his assumptions until much later in this story.

All was normal for another 4 or 5 months, then I started getting another red lump on my leg. Then another one. I still lived in the same apartment in a nice older area with a lot of oak trees and my first thought was holy shit more spider bites, but 2 of them?! These also became necrotic and black in the middle and I went through the sickness and the same thing all over again only this time I went to my general practitioner and relayed the story of the last bite to the doctor and he put me on Cipro and Bentyl again which cleared it all up except for the damn ulcers again, this time one smaller and easier to heal but one larger and it took a long time to heal. Damned spiders. OK, I thought, I am moving away from this place, and I did. That should take care of the spider bites.

Then I got really, really sick, but it came on very gradually, so gradual I barely noticed at first. I felt tired all the time so I began taking vitamins, which seemed to help. Then I had a few aches and pains in my hips and knees, so being 40 I figured I was getting arthritis so I relieved that pain with ibuprofen. One day my right knee swelled, and I thought maybe I might have twisted wrong at work and maybe aggravated a little arthritis that may be settling in this knee and so I bought an elastic knee brace and wore that for a few weeks, which made it feel much better, and continued taking ibuprofen until I began to get bloody diarrhea. Then nausea. The lethargy came back and then the vomiting. I felt like crap and thought there was no bug going around the home but maybe my daughter, being 12 at the time, might have brought something home from school to me. I was crap for 3 days, and before the third day was done I had 4 more blisters on my lower left leg. I knew I had just moved, and something inside me just told me that these ulcers were NOT spider bites. It was another 4 days beforeI went to the emergency room and again they did all sorts of tests, but not for digestive problems, just blood, stool and urine tests.

However, now that they were aware I have been there 3 or 4 times for the same symptoms, they knew the odds of me being continuously bitten by a brown recluse spider are not a set of odds to place a bet on since they are not native to Florida and they knew this. This time they called in an infectious disease specialist and a wound care nurse since now I had 4 more ulcers on my lower left leg, and one beginning to develop in my left eye. They admitted me to the hospital and put me in isolation for a staph infection and cellulitis.

Whoopee! Now none of these doctors and specialists can tell me why I am sick, or even give me a theory on how I got sick. The infectious disease doctor wanted to rule out endocarditis, so they did an endocardiagram to check if the staph infection had colonized in my heart and was shooting out little staph germs into my bloodstream, and maybe they were lodging in my leg tissues. Results: negative, but I did find out I had a heart murmur I didn't know about. For safety sake, they hooked me up with a potent antibiotic called Naficillin, which feels like battery acid going into your veins. It was so caustic I had to jog in place for the entire 30 minutes of the infusion so I wouldn't pass out from the pain of it going into such a small vein near my wrist. I later found out, too late, that this particular antibiotic is not painful if delivered through a pickline, or a long catheter going from the inner elbow into a much larger vein up near the shoulder. The pain is directly related to the amount of bloodflow the medicine has to mingle with. The more it can dilute, the less pain, so the larger the vein the better.

DUH....Buncha idiots.

Anyway, after 3 days of antibiotic and no doctor I wasn't getting any other treatment and the blood tests came back that there was no more staph infection, and even though I felt like crap I couldn't miss anymore work so I checked myself out of the hospital on the morning of the fourth day. Yes, I check out AMA. Big deal, so I went AWOL. I have a small child to raise and I am the only source of income, no sick time, no insurance and I HAD to get back to work, no choices there at all. Just give me some pills and let me go home.

After about 2 more weeks I felt so much better I almost forgot about being sick, except now I had 4 more ulcers to deal with, and a big sore red lump in my eye. I also felt one inside my esophagus, and had one on the back of my scalp behind my ear where the little indent is, and two or three on each forearm at the wrist joints. Now I know these just simply cannot be spider bites since they appeared while I was in the hospital, and I began to research everything and anything on the net for skin bumps or inflammation. My daughter called them mommy's lumpy-bumpies. THEY HURT REALLY REALLY BAD.

After another week I had these so bad I counted 345 of them in both lower legs and my 12 year old had to literally walk me to the bathroom they were so very God-awful painful. I actually prayed to die a few times, but I know God knew I didn't really mean it, I was just so miserable I could barely stand it. Eventually I learned these reddened sore lumps were actually called erythema nodosum and the ones that went into necrosis are called pyoderma gangrenosum.

Once again all went well for a few months until again I got very sick and ended up in the hospital. The abdominal pain was nearly unbearable, I actually thought I was dying, and directly preceeded a bout of get-the-heck-out-of-my-way-I-gotta-get-to-the- toilet diarrhea. Sometimes I didn't make it. Again a lot of acid and bile, but this time a lot of blood. Burned like fire, and felt like I was having another child except that the birthing was a lot less painful.

I was in so much pain I couldn't breathe. The tests came back that my pancreas was inflamed again, another bout with pancreatitis. Doctor said I should quit drinking and this wouldn't happen. I told him the same thing I always told him before, that I don't drink much, and lately not at all, and all he said was yeah, sure. That pissed me off, since I really don't drink, and when looking it up in a medical dictionary, the main cause of pancreatitis is alcohol abuse, but also some OTC (over the counter) sleep meds (which I was taking like an evening ritual) along with some sulfa family medications (bactrim) and some inflammatory disorders like Lupus and IBD.

HELLO!! IS THERE A REAL DOCTOR IN THE HOUSE??!!

Eventually I got better but 3 or 4 months later again it happened again with the pancreas, and another time 3 weeks after that, and yet again a month later. Remember, at this time I didn't know anything about Crohns Disease, and even less about pancreatitis and the effect of the tylenol pm I was taking every night to help me sleep through the pain so I could work. This OTC (over the counter) drug was the culprit in causing the pancreatitis, but I didn't find this out until much later.

Anyway, the doctor assigned to me by the hospital (since my general practioner did not have hospital privalages there and I was a State Medicaid patient)refused to believe that I didn't drink, and would not run any test I asked for. I begged him for an upper and lower GI or a colonoscopy, and he said it would not be necessary, all I had to do was quit drinking. I told him, again, I don't drink, but all he did was inform the nurse, and I quote, "I am discharging her today, right now, unhook her I.V. and send her home. She's been through this before and she can recouperate at home". The male R.N. did as he was told, and I asked him why on earth would a doctor act like that, and discontinue my I.V. fluids when it is obvious I am dehydrated and discharge me with a temperture of 100 degrees? He said he couldn't figure, but once the discharge order is written it was out of his hands and I had to be released. So home I went, still sick as hell.

I SHOULD HAVE SUED, AND I JUST MIGHT, I HAVE UNTIL THIS JULY TO DECIDE.

That doctor sucked, but it's ok, each time I went to the hospital, my insurance requires that I personally submit the bills and so I did not submit any bill on behalf of that doctor. What a chump, and because of the type of Medicaid I had, called "share of the cost" which means I have to pay a certain amount of the bill, I had to take the doctor assigned to me unless he refused to treat me. So naturally after getting no payment, and after all the hangups I gave him on the phone, he refused to be the attending physician on my case ever again, thank God for small miracles.

Last summer in July 2003 I ended up at the hospital again, severely dehydrated, after 6 days of fighting again what I thought was a bug but this time I waited way too long. At first I knew something was wrong, but I was hoping it would pass. I was sick, yes, but still, I went to work and dragged myself through 2 days before I got so sick I just couldn't move. Oftentimes laying on an empty bed and crying to my hall partner about how I felt. She helped me do my work on top of hers, God Bless Her, she knew how sick I was. Thank you, Traci, for helping me get my work done at that terrible time in my life. On Monday I went home early sicker than ever, and by 3 a.m. I woke up to go to the bathroom, but I couldn't make it, I was too weak to even stand up and so I had my daughter call 911. I was admitted with with tachycardia and paralytic illeum.

My intestines had already shut down and any fluids that I did manage to keep down just flowed right out the other end. Blue Gatorade, orange juice, even the chicken soup broth came out undigested , which scared the absolute hell out of me. I was so sick I couldn't even get off the couch to go to bed, and it took all I was worth to get to the bathroom. I couldn't sleep, my heart was beating so fast, and it hurt. My whole body hurt.

My pulse was stuck at 146, my blood pressure was 66/38 and later I found out that I was very near death. I had waited too long before calling the ambulance. My blood count was 28, ( normally they transfuse at 26) it needed to be 36 or better, my electrolytes were so imbalanced that my body could barely function. My temp was 104.5. It hurt to pee, it hurt to crap, which I was doing about 40-50 times a day, NO JOKE ,hell it hurt to even breatheI thought it was the flu like everyone else had at work but after 4 days I knew something was terribly wrong. The diarrhea was so severe I could no longer keep control of it, and the pain made me cry like a baby, whimper was more like it. Anyway, at the hospital I was assigned a very nice doctor of internal medicine, Dr. Ramos, who is still my doctor to this day. My body was on shutdown, and he knew exactly what to do, God Bless him.

Immediately he hooked me up with I.V. fluids, parenteral nutrition and painkillers enough to knock me out. SWEET RELIEF. Made me NPO (nothing per oral, or nothing by mouth) and wait for the test results. My potassium was 2.3, very very low, and needed to be around 3.8 or higher. It was so low I was nearing the heart failure range. He gave me IV potassium as well as potassium pills around the clock. 10 milligrams of Nubain IV push every 2 hours so you know I was stoned, 2 Darvocet every 4 hours, 1 milligram Klonipin every 8 hours, inbetween 1 milligram Ativan every 8 hours so I was getting something every 4 hours, and so many other pills I can't remember. Rowasa, Pentasa, something else I can't remember, I do remember 125 milligrams IV prednisone. The first 5 days were a blur, I was knocked out most of the time. That was necessary, I was told, because my small intestine had already shut down (paralytic illeum) and I needed to be kept completly still and bedbound with no stress or pain in the hopes that they (my intestines) would wake up once my electrolytes were returned to normal, or surgical removal of dead intestine would result.

They put a foley catheter in me and diapers on me for the stool. I had no control, but I didn't care, I was so stoned I could barely stay awake for 15 minutes at a time. This went on for about 4 or 5 days.

Once they let me wake up a bit and I was actually feeling better, they told me their wish had come true and that my intestines had begun to function again, so they let me have some diluted to nearly clear chicken broth (YUM) to introduce food into my system again, and once they were sure I would survive I found out I was taken for an emergency MRI, upper and lower GI series X RAYS (I had an NG (nasal-gastric...a tube going up your nose into your stomach) tube I was not aware of) and colonoscopy and it was determined I was sufferring from an incredibly severe flare up of Crohns Disease, and they removed 5 polyps while they were in there. On the 7th day the ulcers inside my colon were so deep I formed a rectal / vaginal fistula that opened into my vagina, and one that eventually closed, into the labia and I freaked out. It hurt so bad, everything down there was swollen and full of stool, and I couldn't begin to tell you what a horrible feeling that was. No worry, the doctor said, we will take care if it. On the 12th day he let me go home but still no work for 2 more weeks. They held a bake sale for me at work and got people to donate vacation and sick days so I could pay my bills. Still no insurance. Sent home with Prednisone 60 milligrams a day for the first month, 50 the second month, 40 the third month, 30 the fourth month, 20 the fifth month, 10 the sixth month and 5 the 7th month. Finally, I was feeling great, even though I had gained 50 pounds from the prednisone, which meant I had to buy new uniforms. I went from 157 pounds to 202 pounds. That stuff makes you want to eat everything that isn't nailed down!

Well, March, April, and part of May went on the list as the first pill free months but I am saddened to say later in May began again another flare. I have just recently gotten another ER visit under my belt, on June 27th. Prednisone again, and more Darvocet. I am hoping to have the money to see the doctor this month, and will update this page as needed.

Looking back, all I needed in the beginning was a colonoscopy and a correct diagnosis, which no one would give me. I had to nearly die before a doctor would be smart enough to call in a gastroenterologist and diagnose me correctly. Finally, my 4 years of walking through the valley of the shadow of death is over, for now, and I hope to continue controlling this disease as much as possible, but because of the severe flare I suffered and the damage it caused to my intestines I have a constantly elevated white count and the fistula will not heal, air escapes on a regular basis, and 3 times stool and now the doctor wants to do surgery to remove that area of bowel that is fistualized, but like I said before NO INSURANCE and I am the sole breadwinner for the family, I cannot take 6 weeks off. I am told it is likely that it will always remain a fistula and the Crohns will likely remain active and that I cannot be sure even 3 months without symptoms is a remission. I fall into the 2% category of the Crohns Disease patients.

Spider bites, pancreatitis due to alcohol abuse, cellulitis.....all of them were very wrong diagnoses, and the elusive Crohns Disease diagnosis is a hard one to get when you live in a retirement state that is geared up toward healthcare for the elderly and you have no insurance.

I still have no insurance, I can't get any now, and even the companies that would insure me I cannot afford their premiums. I have been denied insurance 12 times from 12 different comapnies, and even my employer will not insure me. I will never be the same, I am always sick, tired, my body always hurts and I get frequent headaches. I am depressed and anxious. I am irritable and suffer from memory loss. I walk around in a daze sometimes, but only for a minute or two before it clears. God help me, I can't be the only one, and I know I am not. But I do know I need help.

Don't do what I did, don't think it's a bug, it may not be. Don't work until you nearly drop over dead, because you might, and above all request testing, and don't take no for an answer.

UPDATE JANUARY 20, 2005

No update for a while, been too sick again. Life is a constant battle on a daily basis for me. I just started to work part time now, I can no longer work full time, I just can't manage it anymore. I dropped to 2 days a week, 16 hours total. Whoopee!! Now I will qualify for the State Medicaid program because I will be dirt poor and then maybe I can get help and the medical treatment I need to get well and stay well.

I have been in the hospital 3 more times since I wrote this story, and have become steroid dependant.

I spent Christmas in the hospital. They didn't even give us turkey or ham, but some kind of freaky meat. I thought maybe it was reindeer. LOL. That was my first solid food in 2 weeks and it sucked. At least the drugs are good. Sad to say. I am again out of money and out of prednisone, I have some Pentasa but it alone doesn't stop a flare, actually it barely does anything, but it is definately better than nothing and I feel one coming on, a flare that is.

I still have no insurance yet, I won't qualify until end of Feb 2005, 6 more weeks, and I know I am gonna end up in the hospital again before that.

THIS DISEASE SUCKS

UPDATE DECEMBER 15, 2005

Well I guess all I can say is that I suck when it comes to keeping a journal. It's been nearly a year now, but for the most part I have been ok. I have been to the ER only about 4 times since January, but my Crohn's is pretty much under control for the chronically active fistulizing type. The really bad part is that my lower back, hips, knees, and feet hurt like they have been run over by a truck. This is on a daily basis. I live on pain meds, anxiety meds, am up to 2000 milligrams a day Pentasa and wear Lidocaine patches when it becomes unbearable. They do ok until the pain meds kick in. I have lost more weight for fear of eating, and now have a 2 cm mass on my liver. My uterus needs to come out, it is affecting my bowels because of my immune system it has out-of-control fibroid growth. The fistula remains. I am beginning to form erythema nodosum in my legs again, but the pain meds I have left should at least drag me through the holidays. My daughter has been diagnosed with bi-polar, borderline personality disorder, adhd and intermittent explosive disorder. This on top of it all. I guess my genes are no good. Will update soon, after the liver ultrasound.

Best wishes to all!!

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