Specific Carbohydrate Diet Interview: Jilluck

Name: Jill
Location: Massachusetts


Time on SCD: since September 2006 for Crohn's disease

blog: Dietary Adventures of Jilluck

On December 29, I met with Jill and she shared her experiences with Crohn's disease and the specific carbohydrate diet. Last year, she started a blog, the Dietary Adventures of Jilluck, to show how someone could follow the diet and still have a regular life--in her case that includes a happy marriage and thriving in a demanding professional environment.
How did you find yourself sick? What happened?
I was always healthy--I'd say very healthy. I had allergies to cats, pollen, and some medicine but I didn't take medication for any illness. That was my medical history.

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.

Were you eating at all?
My normal weight is 118 pounds. Starting in February 2006, I started slowly dropping weight. Whenever I ate I felt worse. So I didn't eat as much. (And I love food!)

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."

What was the fluid?
It was an abscess. If you have an infection in your abdomen you can become septic. Luckily, my body abscessed off the infection and contained it.

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.

Were you going to work during this time?
I was a trooper. Believe it or not I would get out of the hospital, wait a few days, and go right back to work. But people at work were definitely noticing that I was weighing much less, I was pale. I looked deathly.

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.

What is the drain?
It's a tube to drain fluid which has built up. The procedure may be done while you're awake or while you're under anesthesia. I had two while awake and one while under anesthesia.

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.

Did you they see inflammation during this time?
They did. They said: "Your abdomen is completely inflamed. It's a mess." But no one ever mentioned IBD, Crohn's, colitis, nothing. It was always: "This is a complication from your appendix."

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.

How were you doing mentally?
Freaking out. Until that point I was good but I had gone through so much that year. I didn't have any strength left physically or mentally and now the doctors were telling me my worst nightmare.

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.

What made you think it could work? Honestly, with everything out there, I don't know if I would be able to find it now.
The SCD websites. I read every single last word, especially www.scdiet.org, www.scdrecipe.com, and Mike Simons' site. I would say: It's working for these guys, why wouldn't it work for me. I felt very hopeful about it. But I have to say there was doubt.

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.

Were you able to eat when you left the hospital?
I could eat. My father-in-law is retired and came to help me during the day. He made me beef soup, chicken soup. My mother started making me yogurt. My family was super-supportive of the diet. I had the foods right away. Then I found SCD bakery on this website. We drove there and I met Jill. I love her cooking. I credit her with fattening me up. I gained 25 pounds in a year. Baked goods, avocadoes, and nuts. I was making full fat yogurt to bulk up. Now, I'm like "back to the gym!"
Did you make any adjustments when beginning the diet?
When I came back home I ate a ton of nut goods. I hadn't eaten in so long. At first I was eating two or three muffins and five cookies. But it was too much. I didn't do that again and I was fine.
What medication were you taking?
I've never been on medication for Crohn's.

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.

What do you think could have caused your IBD?
A few things for me. Several years ago I used Accutane. Shamefully, I did smoke socially and had stopped a few years before which have been a contributor. Stress, Type A personality, who knows. But a lot of people have all those things and they're fine. No one in my family has it. I'm at a loss. Then there's the issue with the MAPS bacteria. I researched that. It's probably a combination of things that happened.

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.

When did you return to work?
I was out from August 3rd to October 23rd. It was slow going at first but by December I was back to my normal energy level. As soon as I started gaining weight back, I recovered quicker and quicker.
Are there any recommendations you have for people in a similar situation?
I'd recommend reading as much as possible about the specific carbohydrate diet. I read all of the Q&A, every bit of www.scdiet.org, all of Mike Simons' flog, all of scdrecipe.com. Mike Simons gave me an idea of the types of food I could eat each day. If you read his blog, it's simple. He has a protein and vegetables. That's the way I do it now.

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.

What do you eat for the intro diet?
It's the soup. I do eat the yogurt. Broiled fish. Broiled chicken. Over-ripe bananas. I do that until I feel it kicking back out. I also use acupuncture. That helps in different ways. It helps the whole body and is meditative for me. you can't move because you have all these needles stuck in you. It's a time to be quiet and think
You also have a demanding job . . .
I travel all the time. The week before Christmas, I was in California for work. I flew into Los Angeles on Tuesday and slept in Beverly Hills that night. Wednesday night, I slept in Laguna beach. San Diego on Thursday. I flew home on Friday and went to relatives for the holidays. I didn't sleep in the same place for 7 nights and I was still able to follow the diet.
What about restaurants?
My only pet peeve on the diet is restaurants. I hate explaining the diet to the waiter. They'll say, "You have an allergy!" "Not quite." "Oh! You're gluten free. I'll just tell them you're gluten-free." "No, it's more than gluten-free." The waiter doesn't have time to hear, "Let me tell you about monosaccharides, disaccharides, and polysaccharides."

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

This is great.
You can print them off the website and cut them out. It's so much easier for me to say, "I want to get the broiled chicken with vegetables and 'here you go' and I hand over the card."

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.

So it's in your check-in luggage, not in your carry-on.
Right. I check it in. I also make sure my hotel room has a refrigerator and bring SCD muffins, cookies. On the plane, I'll bring apples and nuts and cheese.

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.

So for people working, you don't think the diet should be a problem?
No, I don't think it's a problem at all. When I'm not traveling, I leave at about 7:00 in the morning and I usually don't get home until 6:45 at night--five days a week. I think the key is to keep it simple. And whatever you make for dinner, cook enough for lunch the next day. That's another thing I learned from Mike Simons' food log.

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.

You had a lot of support in the beginning.
Yes, the first month. A lot of people helped me when I came out of the hospital. If you can afford it, it might be worth hiring someone to help in the beginning. But there are a lot of simple recipes, like Lucy's cinnamon cookies.
Those are amazing. My brother's girlfriend is addicted to those cookies.
My sister-in-law is addicted to those cookies. People devour them when I take them out! Also Lucy's garlic crackers go fast. Recipes like those don't take a lot of effort to make. If starting out I would recommend making a lot and storing it away for busy times.

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.

Have you had a lot feedback through your blog?
I have and it's so much fun knowing that people are reading it and finding it helpful.

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!

Do you have any experiences which stick out in your mind? Any difficulties getting food?
I have a recent good experience. We went to my sister-in-law's house for Christmas Eve. I said, "Don't worry about me I'll make my own food." I made a vegetable platter with SCD dill dip, SCD lasagna, and stuffed mushrooms from Grain Free Gourmet. And my food was the first to go! Everybody ate it all! I had to run to get some. And they didn't know which food was which.
Thank you for taking the time to talk.
One more thing to add - I would like to thank my husband who always makes me the extra delicious but difficult to make SCD Easter Candy and Tortilla Chips. He is my SCD angel.