MEDICAL HISTORY PRIOR TO CROHN’S DISEASE…

– diagnosed with asthma at 3 years of age. Antibiotics, steroids, antibiotics, steroids… for a decade.

– became strict lacto-ovo-vegetarian at 14 years of age.

– diagnosed with anorexia nervosa at 14 years of age.

– no menses from 14-18 years of age due to eating disorder.

– established normal body condition by the age of 17.

– diagnosed with eczema and localised morphea scleroderma in early twenties.

JOURNEY TO CROHN’S DIAGNOSIS…

I believe it all started in my early twenties. I was going into my third year of undergraduate studies in University. I recall feeling extremely weak, suffering from bloating and abdominal pain, fevers, constipation and severe bouts of nausea. Sometimes I would just stand over the bathroom sink salivating profusely trying not to vomit. I was diagnosed with iron deficiency anemia, and started undergoing many tests. Blood tests, endoscopies, upper and lower GI studies, visits to gastroenterologists, surgeons, hematologists. All to no avail. I dropped out of my courses, as I knew I wouldn’t be capable of keeping good grades. I moved home with my parents, who slowly nursed me back to health over 6 months. No doctor could provide a diagnosis. Slowly but surely I made a spontaneous recovery.

Over the ensuing years I would still have the odd stabbing pain in my abdomen. Nausea would strike intermittently. Constipation was a pretty routine problem but not out of control as it were. The iron deficiency anemia couldn’t be corrected with supplements, so I lived with it. I graduated in the medical field five years later and was feeling well overall.

I worked in my field for two years before disaster struck. After moving from Canada to the United States to take a new job, I hit my first major roadblock since my childhood days of asthma attacks and scary visits to the ER. I started having searing abdominal pains, as though a blow torch was burning inside me. I was severely fatigued; I could barely get out of my car after work without taking a one hour nap. I couldn’t eat. Food meant hours of pain. Sleep was non-existent. My nights involved rolling around with my abdomen on fire, then getting up twenty times to sit on the toilet to see if something would happen. I went to work every day and suffered through. I had no medical insurance and was terrified to see a doctor. Coming from Canada where we do not pay out of pocket for health care, it was a massive shock being in the United States. I avoided it until I could no longer stand it. Until I had dropped 20 lbs., gone from 130 to 110 and resembled somewhat of a skeleton. I went to a walk in clinic where I was swiftly blown off and given meds for IBS. Of course, these did nothing. I demanded imaging and a CT scan was ordered. It revealed some wall thickening in the terminal ileum, which the doctor failed to report to me, stating my results where normal. I requested a referral to a gastroenterologist. Endoscopy was unfruitful, so a CT enterography was ordered. Distinct diffuse wall thickening was again noted in the terminal ileum. My gastroenterologist then told me he believed I had Crohn’s Disease. I didn’t believe him. I didn’t have diarrhea after all?! I didn’t read the book! When he offered me a trial of Entocort and Pentasa I readily accepted. Within days I was feeling much better. Within weeks I was eating normally and practically asymptomatic.

DEALING WITH CROHN’S DISEASE…

I stayed on Entocort and Pentasa for 2 years with very few flares. My weight hovered between 120-125 lbs. Then I had my first major crisis. In February 2013 I suffered my first partial bowel obstruction. It occurred over a few weeks. Gas and bloating after meals, pain and severe cramping that came in waves like contractions during the nights. I had a friend take an x-ray of my abdomen at my place of work one night after a particularly hard day, and I took one look at it and knew I was obstructed. My bowels were severely distended with gas. It sent me straight to the ER, where a CT scan confirmed what I already knew and I was admitted. I was not vomiting, so I did not require decompression. I was put on IV fluids, solu-medrol IV infusion, ciprofloxacin and metronidazole IV, and was NPO for 24 hours before starting a clear liquid diet. I stayed for 6 nights and had an endoscopy at the end of my stay which, again, like every other I have ever had, showed nothing. I was discharged on steroids and put on a low residue diet. I recovered slowly and continued on Entocort and Pentasa.

Months went by and I was feeling well. I actually started gaining my weight back. I got up as high as 135 lbs. My mother, bless her soul, read all about the Maker’s Diet and how the author cured himself after nearly dying from this disgusting disease. She came to visit me and cooked for me. I found myself able to eat things I had not eaten in a long time: salads, asparagus, raw vegetables! I had lived on pasta and tomato sauce for the better part of two years because that’s all that seemed to sit well with me. Little did I realise at the time that it was probably the most detrimental food I could have been putting in my intestines. On the Maker’s Diet I began to feel better and better. I started reducing my medications. Of course, life gets busy right?! Especially when you’re feeling better! I got engaged in Greece and went off my diet somewhat (although the Mediterranean diet did agree with me too). When I got home life and work was busy and I felt less inclined to stick to the Maker’s Diet. I cheated 2-3 days a week. I seemed unscathed. I was pleased to be feeling so well, have reduced my medications, and be able to eat much more liberally.

This past fall after a wild month of Halloween parties, followed by the mother of all colds, I suffered another flare. I started eating soups and stayed away from roughage… Then as I got over the cold, I decided to try broccoli. I ate it one night and felt great. Miraculous! The next night I ate it again… I ate a lot of it. That night I awoke to intense cramping and nausea and proceeded to vomit all night. Shaking with cold sweat running down my back, I had never ever felt this ill before. I knew I was obstructed again. This time worse than the last. It took me 36 hours before I went to the ER. I was admitted and my first nasogastric tube was placed. They were speaking seriously of surgery. They started me on Imuran and Remicade. The drugs I had been avoiding like the plague since day 1. After 3 days my nasogastric tube output decreased substantially and the tube was removed. I was NPO for 5 days in total. Then I started on clear liquids. Then full liquids. And then they advanced my diet further… and to my horror and dismay served me broccoli with chicken for my last meal in hospital. Needless to say I didn’t have a bite. Not only am I now pescatarian but, really, broccoli?

I am still not over this last obstruction. I have not returned to normal one month out and it is scaring me to death. I don’t want surgery. I don’t want Remicade or Imuran. I want to be normal. Henceforth I embark on an exploration of alternative treatments, the Specific Carbohydrate Diet, juicing organic vegetables, and several supplements. This is what prompted me to start this blog. I will share my experiences with you – the good, the bad and the ugly. It is my belief after copious hours reading forums, blogs, books, research articles, and anecdotal reports, that there is hope for a cure for this hideous disease. There is hope for health in your gut without the trade-off of serious, even potentially life-threatening side effects of the medications we are taking.

Cheers to all of you battling Crohn’s Disease or the like. I wish you the strength to avidly pursue a healthy lifestyle, the wisdom to be your own advocate for your health (because I’m sorry but your physicians will not be enough), and the courage to get up each time you fall.

Yours Truly,

Crohn’s Gypsy