In April of 2014 I was diagnosed with Ulcerative Colitis after having a colonoscopy done by my gastroenterologist.
The doctor barely spoke to my family which my husband thought was because he was saving the information for me. He gave me a prescription for a drug called Prednisone, which I knew nothing about but learned that it is a powerful steroid meant to help with my inflammation.
A few days after my colonoscopy I called my doctor’s office to set up an appointment as suggested by my doctor. I asked the nurse what the findings of my tests were and mentioned that the doctor may have mentioned something about Ulcerative Colitis which I knew very little about.
The nurse assured me that I did not have this disease according to the documents she was looking at from my doctor. She said I needed to come in to speak with my doctor to get a definite diagnosis and treatment plan, so I scheduled my office visit for the following week and waited.
Getting My Treatment Plan
At my appointment, my doctor walked into the exam room and told me I would need to take Balsalazide 3 times daily and that I did, in fact, have Ulcerative Colitis.
I asked if it was something that could have been prevented with diet or cured with diet and he informed me that there was no cause or cure, no matter what I ate in the past or continued to eat in the future. He said that I needed to take these pills daily for the rest of my life, to keep the flare-ups to a minimum.
I was puzzled by this information because I was informed by his nurse that there were no findings of this during the colonoscopy and I have always been the kind of person who doesn’t even take a Tylenol when I have a headache.
I hated pills and never wanted to even take vitamins, but now he was telling me I needed to take them every day for the rest of my life….3 times a day?
My mouth dropped, and I couldn’t hide my frustration as he was on his way out of the door, since this is apparently a normal office visit to him.
I said, you mean I have to take pills every day for the rest of my life? I have a disease called Ulcerative Colitis and have to take pills for the rest of my life, is that what you are telling me?
He stopped walking out of the door for a second and said yeah, sorry… the nurse will be in to explain the dosage to you. Then he left the office.
The nurse came in and I didn’t know at the time but she gave me the wrong dosage of what I was supposed to be taking daily.
She told me to take 1 pill 3 times a day, it turns out I was actually supposed to take 3 pills 3 times daily…for freaking ever!
To top this off she also gave me the wrong information on how to properly ween myself off of the powerful steroid Prednisone, what a way to start out a lifelong disease treatment plan.
When I left the office I contemplated not taking the pills at all. I thought these people are out of their minds! Do they really expect me to take this crap three times a day for the rest of my life?
They gave me a vague diagnosis, denied it, then a definite one, as well as the wrong dosage, and treatment plan and I am now supposed to listen to them?
I was so mad!
I was mad that they were completely incompetent and I was mad that their practice has the only 4 other G.I. doctors in the area.
I knew and they knew that there was no way that I could see another doctor in that office and feel like I was getting fair treatment.
I was even madder that I was diagnosed with a disease that is incurable and the only way to live as normally as possible was with pills every day.
There was nothing I could do….seriously?
I didn’t buy it, I have always been the type to find the hole in every story and look for the silver lining in every crap storm.
So this was no different.
I started researching everything I could about the disease and found lots of people were taking this medicine and that there are 4 different types of this disease, depending on if it affects the left side, right side, or all over your colon.
I must have really been bad in another life because I have Pan-Ulcerative Colitis, which affects my entire colon.
I also read some pretty scary stuff about my risks of certain types of cancers being increased due to the illness, so I started taking my pills because I knew something had to happen.
A couple of months went by and I continued life as normal, went to work, took care of my family and everything seemed normal.
This is when I returned to my doctor for a check-up only to find out that all of this time I was taking the wrong dose of medicine.
Instead of the 1 pill 3 times a day I needed to be taking 3 pills 3 times a day for a total of 9 pills daily. Along with vitamins to make up for the lack of absorption from my intestines.
I really had a hard time with this although I started taking the correct dosage, I also started looking into alternative treatments.
Although my doctor claims diet plays no role in the cause or treatment of the disease, I had my doubts.
Of Course, Diet Plays a Role in Digestive Diseases
So through my research, I came across a diet called the Specific Carbohydrate Diet.
It was actually a video a man put out claiming this diet was the miracle cure that helped his girlfriend get off of her pills for Ulcerative Colitis.
He claimed his girlfriend had tried other diets and nothing worked like this, which sounded like me. Before my diagnosis, while suffering from the horrible symptoms of this disease like stomach cramps, frequent & urgent bloody diarrhea, and rectal pain, I tried tons of diets.
I went dairy-free, and gluten-free, I started by trying the elimination diet hoping to pinpoint the problem foods.
This man seemed like he was pretty confident this diet would work for anyone and I knew he would stand to make no gain off of my trying a diet so I did.
This diet isn’t a plan you have to order or a meals that come to your door. You are in charge of creating the Specific Carbohydrate Diet Recipes and reading the food labels so you know what foods are actually going into your body.
My Specific Carbohydrate Diet Journey
On August 6, 2014, I started the Specific Carbohydrate Diet, and on October 13, 2014, I started this blog.
I have been posting recipes for gluten-free diets, low-carb diets such as keto, and for those that are on the Specific Carbohydrate Diet ever since.
I have spoken with many people who suffer from auto-immune diseases that have had similar experiences with their doctors.
I even had a handful of people reach out who saw this exact doctor I did with a similar experience.
I found it interesting that I didn’t have to name the doctor or even the practice that I visited.
Lucky for us who are local to Cedar Rapids there are more options now but it is still difficult to find a doctor who encourages healing through food. That’s why I do my best to share this information whenever possible.
I suggest you listen to your doctor when it comes to your care plan but even with the proper care plan, diet plays a large role in your healing.
This post shares more information on the Specific Carbohydrate Diet and how it can help you heal in conjunction with the proper care plan from your doctor.
Please share your story with me in the comments, all Inflammatory bowel diseases are a nightmare to live with and I would love to hear about your experiences with Diverticulitis, Crohn’s Disease, or Ulcerative Colitis.
How are you dealing with the disease and have you found anything that works for you?
Tuesday 28th of March 2017
Hey! My name is Jennifer and I just found your blog. I'm super excited about your SCD recipes. I had a similar experience with my doctors claiming that diet has anything to with the disease. How can it not?!?! The food we eat passes through the colon. I am experiencing my 5th or 6th UC flare since I gave birth to my daughter in September 2014. I was diagnosed with left-sided UC in 2005 and was on Remicade from 2007-2012. I went off Remicade because I had just gotten married and we wanted to have children (and I wanted to med free during my pregnancy). I was not on any meds for over 2 years. It wasn't until after I gave birth to my daughter, when I experienced my first flare since 2007. Every time I have experienced a flare I allowed dairy to creep back into my diet; therefore, I have concluded that dairy is a trigger with my UC. But after my 2nd flare I had my husband pick up Breaking the Vicious Cycle and I kept saying I was going to start the SCD diet but I kept pushing it off. I have been struggling with following the SCD diet faithfully and probably why I am experiencing yet another flare. I have no intentions of going back on medication for the rest of my life. I hope that I can control my UC by following the SCD diet and avoiding dairy. I am so happy to have found your blog as a resource and I look forward to making some of the recipes that you post!
Tuesday 28th of March 2017
Hi Jennifer! I am so happy to hear from you and hope you do find success with the diet. It has helped many and staying off the meds and out of the surgeons office is always best. I am sorry to hear about your diagnosis but it is always nice to hear from someone who can relate to the struggle. I hope you enjoy the recipes and my birthday is August 5th, that is really cool how close our birthday's are, we have a lot in common!
Tuesday 28th of March 2017
P.S. Is your birthday August 5th or 6th? Mine is August 6th! :)
Saturday 11th of July 2015
This is exactly like my experience! Except I haven't been to see a GI yet...the general surgeon who diagnosed me said all those same things to me. You have UC, your entire colon inflamed and bleeding...Ilium too scarred up to scope small intestine. Here are some drugs to take, no special diet, sucks to be you, try using Google. I've been angry about the lack of care, it's kind of a relief to know it is not just me. Just wondering, what supplements do you take? I want to start taking some but not sure what I should take...
Saturday 11th of July 2015
Unfortunately this is the same for so many people.The doctors swear only pills and surgery will help and dismiss the idea of diet playing any roll. It's very frustrating! At this point the only thing I take is Vitamin D3. I have low Vitamin D probably because my body like others with this disease, doesn't absorb it. So that is all I take for now. Are you on the SCD diet! Thanks for stopping by and reading, its nice to hear from others who share my experience.