Thoughts on My Health...

So now to update everyone else about my health all at once. 

As you know, I have Crohn’s Disease; I have been diagnosed for 11 years, probably living with it for at least 15 or 16 years.  Over the diagnosed years I have had many ups and downs with the struggle to find “the right” medication to control my symptoms.  Crohn’s is not a glorious disease by any means-lots of frantic, incontrollable runs to the bathroom at my worst, 20 times a day.  I used to not use the bathroom in public if at all possible (I would get in the car from Burlington to drive Essex and use a familiar/comfortable bathroom rather than risk having a friend or stranger hear me in the bathroom).  With too many close calls and desperate situations, I have become fond of any bathroom that I can get to.

After Dan and I got married and we started talking about having kids, immediately Crohn’s and my medication came up as a topic.  Was it safe for me to take during pregnancy?  Was it safe for me to go off the medication during pregnancy?  Was I able to get pregnant at all….?  I went to see my Gastroenterologist who said that without a doubt, in my case if I stopped my medication I would end up in the hospital.  He would not recommend that I stop treatment for my overall health.  I pushed the envelope a little and skipped the first 3 doses to hopefully avoid any birth defects.

I started up the medication again and felt great.  Dr. Vecchio had always said that 1/3 women get better, 1/3 women stay the same, and 1/3 women get worse during pregnancy.  There was no way to tell what category you would be in until you knew first hand. I thought I was in the first third of women because I felt great (minus the morning sickness).  Little did I know that I would start to lose my appetite, get sick from everything I ate, and start to lose weight at each prenatal appointment during the pregnancy.  It became a little joke about losing a pound each week-I could have entered the Milton Melt-Off after all!

Around the holidays I started to get a painful cramp in my right abdomen with what seemed like protrusion bulging through my side.  The OB said it wasn’t the baby, and the GI said it wasn’t Crohn’s.  They ordered and abdominal ultrasound to make sure everything was ok, but the message I got was that sometimes you have pain and it can’t be found.  Kind of a bullshit answer, but no one really seemed concerned so I lived with the pain. 

I had several fevers throughout my pregnancy that no one could really pinpoint anything to, including three nights before Emma was born. Here my fever caused her heart rate to skyrocket and for me to dilate, seeming to have a baby 4 weeks early.  Luckily after we were admitted, they sent us home after 9 hours with no fever and no baby.  Two days later, at 5 am on March 28, 2011, my water broke.  It was no joke that my water broke-it was like a scene from a movie.  My water didn’t break because Emma was ready, what we’re realizing is that my water broke because I had an infection in my intestines and abdomen. 

For two weeks I was able to start eating some food, although Emma’s pediatrician put me on a strict high calorie diet, him being the second doctor to prescribe my daily Ben & Jerry’s milkshakes…..ah, if only the lactose didn’t make me sick.  I then started noticing that the painful cramping and bulging got a lot worse and a lot more intense.  Dan insisted that I go to the ER.  Here I drank the awful contrast and had a CT-Scan where they found a new area of inflammation to my intestines that hadn’t been there.  This was causing my cramping and fevers, as well as lack of appetite and weight gain.  I went on 2 antibiotics and a steroid that seemed to help tremendously for a week.  No cramps, and no pain.

A week later, as I was feeding Emma and writing Laura an email at 4:30 AM, I started to get really bad cramps in my actual stomach as well as a pain that didn’t go away.  I asked Dan to help me feed her as he watched me get progressively worse over the next hour before he went to work. I wasn’t about to let him miss a day of work after having only been back for 4 days past paternity leave.  He insisted and called my doctor after I was writhing in pain for 3 hours on the bed.  Could I possibly be in labor again?  This is what I thought since the pain was identical to labor.  Dan again insisted on going to the ER after talking with my doctor.  He’s so good at forcing me to do things when he knows I’m stubborn.

At the ER they did another CT-Scan and found that in a week in half, that there was even more inflammation and partial blockage that had developed (think of it like asthma where the intestines closed up from irritation or infection).  This was causing the new pain and caused me to be admitted to the hospital.  They were also thinking that I had C-Diff, which is a healthy bacteria found in everyone.  Once you take an antibiotic, you body breaks down the good and bad bacteria causing a spike in white blood cells and excessive diarrhea.  It is extremely contagious and was what caused them to put me in isolation and not allow Emma until I was ruled out.  This didn’t happen until Mother’s Day, but it was a fantastic gift.

After hitting a high on Mother’s Day, I felt like the meds were going to work and I was going to be out of there in a few days, or a the latest Friday.  Little did I know that my body had other plans for me.  Monday morning the surgeons were all saying how great it was that I was having bowel movements because that meant the medication was working.  The GI doctors were saying otherwise; you can have diarrhea and a complete blockage where nothing gets through your small intestines, yet your Colon produces watery stool.  The GI doctors were leaning more towards wait and see by Friday.  There was no wait and se since Monday night was awful for me.

I went to sleep at 10:45 and woke up in even more pain than I had ever been in, all while on a two-hour pump of dilaudid.  I had to use the pump every two hours throughout the night where I was only asking for it between 6-10 hours during the day.  My surgical visits always started at 6 AM, so Tuesday morning the surgeons were convinced that I was going to have surgery, but they were short-staffed so it was probably going to be on Wednesday.  Over the course of the day when I didn’t show any signs of improvement, Dr. Cataldo decided that he was going to stay late until my surgery was done and I was safe.  My 3:00 surgery got bumped all the way back to 7:00, which means I hadn’t eaten or drank anything for over 12 hours.  It was finally time, and Dr. Cataldo came and personally got me from my room and walked me to the OR since he felt bad about the delay.

Once they opened me up they found a huge mess: all the aforementioned things as well as an abscess and a perforated bowel, which caused a spread of septic waste in my abdomen.  This is the kind of stuff that people die from, and they had no idea it was inside me to begin with.  They think the perforation had been there for a long time since my body had nicely formed scar tissue around the leakage.  They said my insides were a mess and they had to cut out two feet of small intestines and 15 inches of large intestines.  Because of the mess I do have an ileostomy bag for a couple of months. I am in no shape to talk about this yet and am completely mortified, but at least I’m alive and I can start healing to get home to my baby girl.

So now the healing begins.  I was in the ICU for 3 days, now I’m in a regular room.  The incision hurts so much and it’s very hard for me to move.  I had a tube in my nose until a few hours ago, so now I can drink clear liquids.  I feel a lot better after having had a blood infusion today; apparently I lost a lot of blood in surgery.  I will probably be in the hospital until at least Monday, so keep your fingers crossed that Monday afternoon I get to go home.  I’m pushing myself to be out of bed and walk to the bathroom and sit in a chair, but it’s really painful.  I’m up for visitors as well, Baird room 684, but for short periods of time.  I’m going to try and catch up on my sleep while I’m here!  Thank you again to everyone who is helping with Emma and keeping me sane!