In December of 2013, I started noticing that I was having digestive issues.  I probably had been having them for longer but that’s when it finally clicked that my issues weren’t just due to stress and too much fast food.

One of the symptoms was that after dinner I would frequently notice how bloated I was.  I called it my 6 month pregnant belly.  I thought at the time that it was my endometriosis returning.  I’ll skip the rest of the gory details.  You can look them up for yourself if you interested.

At the same time a friend’s daughter named Ashley, was being seen by the doctors for most of the same issues.  When they scheduled Ashley for an MRI, I decided that maybe I should do something. Ashley is a glitter, rainbows, and unicorns, type of person.  I see this beautiful soul be sick and go through all these doctor’s appointments was hard on everyone around her.

I saw my primary care physician in March and after only speaking to me for 5 minutes he said he wanted to refer me to a gastroenterologist.  I simply laughed and said that’s what I thought would happen.  In the meantime, he did some blood work.  I called the gastroenterologist’s office and scheduled an appointment,  The earliest they could get me seen was in six weeks.

In the meantime, my blood work came back.  I was diagnosed with a severe H. Pylori bacterial infection.  H. Pylori causes 80% of the stomach ulcers and when left untreated can cause stomach cancer because it eats through the lining of the stomach.  If Ashley hadn’t have gotten sick, I probably wouldn’t have gone to the doctor and it would still be eating away at my stomach.  This is why I say that Ashley saved my life.

I was treated with a two week round on heavy duty antibiotics and the GI changed by office visit to an upper endoscopy to see if the bacterial infection had caused any damage.  On April 28th, I had the procedure and the results came back clear. While the bloating and pain had gotten better, I was still having some original symptoms.

So on Friday May 30th, I had my first colonoscopy. That Monday a friend had gone hunting for wild morel mushrooms.  They are very yummy if you have never had them and I made them for dinner.  Let’s just say that my body didn’t react very well to them.  I wasn’t able to go to work on Tuesday.  Wednesday I still wasn’t eating and by the time I was ready to try real food on Thursday, it was time to start my colonoscopy preparation.  Oh the joy!  I now joke that I probably had the cleanest colon he had ever seen because there was no way there was anything left in me at all between mushrooms, not eating all week, and the Suprep.

The results showed that I had a large angry ulcer on my Ileocecel  value.  That’s the part of the large intestine that connects to the small intestine for those of us not in the pre-med major. So I was put on a regimen on steroids called Entocort.  I started out at 3 milligrams three times a day . This is again when I was very thankful for my health insurance.  My medicine copay was $60.  The insurance company paid over $1200 a month for this medicine.

In July, I had a second colonoscopy to see if the steroids had resolved the ulcer. The ulcer was gone but it had been replaced by Colitis, aka inflammation of the colon.  My GI ran some biopsies and in about a week they came back as mild non-specific inflammation of the colon.  So my diagnosis was changed to Indeterminate Colitis.

Indeterminate Colitis falls under the Inflammatory Bowel Disease category.  Basically, I have mild inflammation of the colon and at this point it is too early in the disease to tell if it will eventually resolve to either Crohn’s Disease or Ulcerative Colitis. 15% of patients with IBD have been diagnosed with Indeterminate Colitis.  Lucky me, I get to be one of them and live in diagnostic limbo land.

I finished my regime of steroids in October and I had a follow up appointment on November 3rd.  I was very hopeful that I would get a firm diagnosis.  It had been killing me to wait even that long. But no! We stuck with the Indeterminate and I will follow up again in May of 2015. Great, more waiting for the impatient person!

So at this point, I am better than I was but not whole. I am facing down two diseases, neither of which have pretty outcomes.  I’m starting to look into different diagnostic options and lifestyle treatments because I have never been a patient person. I also find it ironic that the person who started a charity for families with chronic illnesses, now has a chronic illness herself.

I have now become somewhat of a Indeterminate Colitis champion.  Many places in the medical community lump this diagnosis in with either Crohn’s or UC, but since we can go either way and we aren’t there yet, we have our own unique struggles. When a website only gives you the option of saying your diagnosis is Crohn’s OR UC, I get frustrated.  I have a diagnosis!  It just isn’t one of your options.  This can also make it very hard to learn about my condition.

I have joined several online communities during my search for answers.  They help me battle through my day to day journey. I joined the Crohn’s and Colitis Foundation of America, http://www.ccfa.org, which is a fantastic resource.  I also joined My Crohns and Colitis team, http://www.mycrohnsandcolitisteam.org which provides amazing online support from other people struggling with the same diseases.  And finally I joined Patients Like Me. Patients like Me, http://www.patientslikeme.org, logs my treatments and symptoms to be used for scientific research so I feel like I’m able to help others.  One of the reasons that I love Patients Like Me is because it has Indeterminate Colitis as it’s own diagnosis not a sub-diagnosis under Crohn’s or Ulcerative Colitis.

So the moral of my story is if your body is telling you something isn’t right, START LISTENING.  I could have been a lot further in this journey if I hadn’t been in denial for so long.