Then in 2004-2005, I had weird stomach issues once in a while. My stomach would become acidic so I would take Nexium or Tums. Nothing debilitating. I would just pop a few Tums here and there.
In February of 2006 we [my husband and I] went skiing and that's when I first started feeling not normal, a lot of distension in my stomach. That's the best way to describe it: stomach distension.
The next month, March 2006, I had a fever of 103 and debilitating stomach pain that literally brought me to the ground.
I went to the ER. They pushed down on my lower right abdomen and it hurt. After giving me a CAT scan, they said, "A clear case of appendicitis." However, the CAT scan also showed fluid in the abdomen and they said: "It looks like the appendix might have leaked fluid into your abdomen. It's dangerous to do surgery right now so we're going to put you on some antibiotics and send you home."
That didn't happen. I was hospitalized for three days with IV antibiotics.
With the antibiotics, I started feeling better--not normal, but better. They scheduled an appendectomy but I didn't make it in time. In April 2006, I landed back in the ER with a high fever and stomach pain. They said: "We need to do an emergency appendectomy. You're in the hospital for one to two days. Not a big thing. It's laparoscopic surgery."
I was in for about 7 days. I was getting worse instead of better. My fever was spiking quite high.
They said: "This is strange because usually when you take out the appendix, you get better."
That should have been my first clue that I didn't have appendicitis [laughing].
I was on antibiotics for another three weeks, never fully recovering, and in May, the same thing happened: stomach pains, high fever, back to the ER.
They said: "OK, that fluid in your stomach that we took out during the appendectomy. It's back. Maybe we didn't get all of the infection."
The main question was "Why is this fluid back if we removed your appendix?" They thought: "Well, maybe we didn't get it all and it got bigger and bigger."
In May, they did another operation, a drain for the abscess. You're going to start to see a pattern here.
But when I had the drain in, I couldn't go to work. They had me in the hospital for about 10 days with the drain and then they sent me home.
In June, I had an abscess in my lower right stomach. They couldn't put the drain through the front because of my ovaries so they had to go through my back--through my butt cheek. It's like getting a big needle. They put a thick, hollow needle in and then feed a tube through. It's like torture. Once the drain's in though, it's not that bad.
I had the drain, then went back home on antibiotics. Three weeks later, the same thing: pain, fever, ER.
For my appendectomy, three small holes had been made in my abdomen in order to perform the laparoscopic surgery. In July, one of the holes split open. Fluid started coming out of it. I felt like an alien. It was a fistula.
With Crohn's disease, fistulas may develop which are basically openings from your body out or from your body into your bladder. It's basically an opening where infection goes. It was a fistula from my abdomen out to my stomach.
That's when things started to get tricky. During that time, from March to July, no one ever mentioned Crohn's disease.
I began drinking a lot of Ensure to gain weight. Looking back that was a big mistake since it's all sugar and corn syrup. Everything I ate made me sick. I was literally afraid to eat. I would walk into the grocery store and say, "I don't think I can eat anything here."
Finally, I talked to a friend of mine who is a surgeon. He said, "Do yourself a favor and go to a big teaching hospital." I was in a small regional hospital. That's when I went to a larger teaching hospital in Massachusetts. They read through my charts and said: "You're a very healthy 32 year old. This shouldn't be happening. Unfortunately we suspect something else is going on, possibly inflammatory bowel disease."
They scheduled me for a bunch of tests including a colonoscopy, small bowel follow-though. But I didn't make the tests. On August 3rd, I landed in the ER and was admitted to the hospital. They came into my room and said: "You have Crohn's disease."
I weighed 88 pounds.
They said: "You're going to need surgery. You have a hole in your small intestine. We don't know if you ever had appendicitis because your appendix is gone but the infection is coming from a hole in your ileum." They had to do a re-section of my ileum, to cut out the bad parts and put it back together.
They told me: "You may be on drugs for the rest of your life. You'll probably have multiple surgeries." It was a lot of doom and gloom. They fitted me for an ostomy bag. Luckily I didn't need it.
I had the internet in my room. The first thing I did was to look up Crohn's disease. I almost had a heart attack.
Then they said: "Don't worry about it. There's this great new drug called Remicade." Then I looked up Remicade and saw cancer as a possible side effect. I was freaking out!
After my first visit to the new hospital, they had mentioned the possibility of IBD. I was so thin and couldn't seem to eat anything without feeling sick so I began searching "IBD diet." During my research I had ordered Breaking the Vicious Cycle. I never read it but when I found myself in the hospital I asked my husband to bring the book to me.
I began reading Elaine's book and one of my mom's friends gave me a book called Kitchen Table Wisdom. It's about overcoming and is very inspirational. I had a lot of time to read. I spent almost three weeks on TPN to build up strength before the intestinal re-section. I read Breaking the Vicious Cycle a million times. I couldn't wait to get out and start cooking SCD stuff.
I would say to the doctors, "Oh, I'm going to try this." They'd say: "You can eat anything you want. Diet has nothing to do with Crohn's disease."
They kept saying: "Remicade, Remicade." But I pushed it aside and said, "Look at these people. If they can do it, why can't I?"
I had the re-section surgery on Aug. 22nd. They fitted me for the bag and I was weak and scared. That was by far the hardest surgery to recover from. But when it was over I had this sense of ,"I am alive. I made it!"
I was in the hospital for nearly two weeks after the operation. I was out of the hospital on Sep 7 [or 8] of 2006. Thank God for my mother, my husband, and the SCD bakery! After the surgery I had no energy. I couldn't walk to the shower by myself for a long time because I had the big incision. I had visiting nurses coming because I couldn't move or stand up by myself.
My GI is very open-minded and supportive. Initially, when I told her about the diet. She said, "Some people have done very well on it. We don't recommend it because people find it hard to maintain. But if you'd like to, go ahead and do it."
I also use probiotics and the Omega-3 fish oils. She was also supportive of that.
Now that it's been over a year and I feel fine. She's flabbergasted: "I don't know what you're doing. But whatever you're doing, just keep doing it!"
With the quick onset of my disease, they were afraid that it would be pretty severe.
I did eat a lot of breads, lot of whole wheat food, lots of potatoes. In retrospect, if I did have a predisposition, that must have killed me.
Once and while Mike would have a setback for a few days but was able to move out of it. That's happened to me a few times. I had some questionable days but by going back to the intro diet I've been able to move out any setback very quickly.
As soon as I start to feel a little sick, I'm back on the intro. The longest I did it for was about 4 to 5 days.
My new thing is that I've vowed to bring the "Can Eat/Can't Eat" card. I'm bringing this from now on. It's on scdiet.org
I've also figured out a way to travel with the yogurt which is amazing with the TSA regulations being so strict. I found these lunch bags with the blue ice in them that's very thin. You place the lunch bag in the freezer which freezes the blue ice. I put the yogurt into a sealed container, and then put the container in the lunch bag. I also add an extra ice pack to the lunch bag. If I'm flying out to California, it may need to last for 10 or 12 hours. I pack it in my check-in luggage and put a note on top saying, "Due to a digestive disorder, I need this yogurt."
TSA always goes through my bags because they leave a note. However, they leave the yogurt alone and never give me a hard-time.
The people next to me are sometimes jealous. They're getting the awful airline snacks and I'm happily eating.
Sometimes it's not easy. In California, when I was jumping around, I ate a lot of salads with chicken or shrimp on them.
I travel every other month. But I enjoy my job and the travel is a lot of fun.
Part of the reason I started keeping a website was to give other people ideas and to show you can be a person with a real life, a job, and a family and still do this diet.
I was lucky to have my family help me when I was super-super sick. But even if you're sick, you can go with the intro diet: the soup, the broiled food. That should be able to help.
I started reading Beth's blog and I met Amy McKenna when I was in Michigan for work.
She started the diet in February or March for Crohn's disease. She's another person I saw and thought, "If it's going to work for her, why wouldn't it work for me."
I went to her house and it was surreal. I had seen pictures on her blog and I was standing in it. I met her family. They prepared homemade SCD dinner and dessert. It was great!