Things I Wish I’d Known During My Flare

Background Info about Daniel:

From Adelaide, Australia

Previously lived in New York

Love to surf, run, hike, yoga and cooking and eating well

Colitis Symptoms:

Fatigue, bloating

Daniel’s Story:

For six months from June 2014 I suffered through my worst ever flare-up of Inflammatory Bowel Disease.

I have had many mild/moderate flare-ups of ulcerative colitis, but in the past 5 years I had been mostly under control.

Actually this time, the symptoms started in my lower back. I thought I had just irritated a disc from sitting too long, but it never got better.

In fact, over a few weeks it got intensely painful – to the point where I couldn’t walk from the bedroom to the bathroom without a walking aid. Night-time was a major problem – trying to fall asleep at with my back in agony, and spreading up my spine – a feeling of extreme stiffness was unbearable.

Later I would find out this was a condition called Enteropathic arthritis. I consulted with a Rheumatologist who ordered x-rays and blood tests which confirmed I had Spondyloarthopathy/ankylosing spondylitis.

I tried to keep moving and stay positive. That helped to a degree, but it seemed like I would take 1 step forward and then 1 one step backward.

The pain eventually was so unbearable that I needed to take some ibuprofen – only a very small dose over 2 days, but that was enough to trigger off bleeding in my bowel.

I am not sure exactly what triggered this whole episode. I suspect maybe some sort of infection, perhaps after a camping trip in late May. I remember one weekend I had a severe migraine as well as intermittent fevers over the course of a couple of weeks. I was under quite a lot of stress which may have contributed and my diet was a little off the rails with eating too much gluten.

The inflammation in the bowel and spine just seemed to get worse. I was going to the bathroom 10-15 times per day with mainly bloody, watery stools. I tried my usual home treatments such as Pentasa suppository, cleaning up my diet and relaxing, but nothing was helping.

I became anemic and also developed GERD where I had trouble eating and drinking due to pain in my chest. This made it difficult to stay hydrated.

The gastroenterologist performed CT scan and colonoscopy and initially put me on Pentasa tablets and Entocort for 10 days. This had no effect and then he swapped to 40mg daily Prednisone. I took this for 4 weeks but things didn’t get any better.

Also, my blood sugars rose dramatically, being on the steroid medication – up in the 300’s in the mid-afternoon. I saw an endocrinologist who gave advice about diet and avoiding certain foods and drinks. It became extremely difficult to know what to eat – on one hand, certain foods would spike my blood sugar, but I was losing a lot of weight and needed the calories.

Overall, I lost 20kg in the space of 2 months (from 78kg to 58kg).

By the time I was 58kg, I was extremely gaunt – every bit of fluid, muscle and fat had disappeared from my body. Having been bleeding for nearly 3 months, I was suffering from severe anemia – my resting heart rate was 130 and jumped to 150 if I walked more than a few steps.
I also vomited and dry wretched every couple of days.

My bowels were getting quite urgent too, so I needed to wear diapers everywhere I went and even just for around home because sometimes it was so unpredictable.

After seeing the Gastroenterologist one day for a another review in September, I was on my way home with my wife and got on the subway. It was peak hour, around 6pm and it was hot and stuffy. There were no spare seats. After standing for just a couple of minutes, it was all too much for me and I ended up fainting. A good Samaritan helped us off the train with my wife and took us to emergency care.

My blood pressure was very unstable – dropping to 70/50. I was transferred to St Luke’s hospital where I stayed for 5 days receiving IV fluids and increased steroid dose to 60mg. The doctors also added Mesalamine 4.8 grams per day, and also Mesalamine enema.

The Gastroenterologist at the hospital told me that I would need the immune blocking drugs such as Simponi or Remicade. As I am from Australia, but temporarily living in New York, we thought it best to wait until getting back to Australia to get on those drugs.

Getting rehydrated helped me a lot – I had around 12L of IV fluids. And eating the food the hospital provided also helped me. Low-fibre diet essentially meant – meat, rice, and no fruit and very little vegetables.

Overall, with the high dose of prednisone, Mesalamine medication and enemas I’ve managed to put back on all the weight on. My bowels are stable now – one good motion every morning. The back pain has also gone away.

I have gradually tapered off the Prednisone – 10mg each week, and then 5mg each week from 20mg.

Today (December 1st 2014) is my first day Prednisone free. I am feeling fatigued, but otherwise in good health and well on the road to recovery. I haven’t started working again but hoping to early next year.

Medications / Supplements:

• DIET
  – Meat and protein is extremely important for healing. Red meat is your friend!
  – Hydration is extremely important and water doesn’t cut it. You need Pedialyte that has the perfect combination of minerals and is easy to drink. Avoid Gatorade which is just full of sugar.
  – There is no one diet “cure”. SCD definitely didn’t agree with me – I lost 10kg in about a week following it. I tried Vegan/Vegetarianism and it’s definitely not for me, actually it made me worse. For a great, scientific book on sensible eating, please read Perfect Health Diet with Paul Jaminet
  – Keep up iron levels – through seafood such as clams, oysters as well as steak, chicken, iron tablets.
  – Salmon cooked in coconut oil was one of my favourite meals.
  – Avoid excessive salt intake – Avoid 2 min noodles/ramen
  – Avoid coffee and alcohol, fried foods
  – Try gluten-free. I noticed a dramatic improvement after going gluten free during my flare. Now that I’m healthy again, I find I can still eat gluten
  – Take lactase tablets if you’re lactose intolerant
  – Take care with excess fructose – especially in soft drinks, fruit juices and certain fruits such as grapes, watermelon, mango
  – Drink homemade bone broth – chicken or beef. Contains essential minerals such as calcium and has a powerful anti-inflammatory effect on the gut
  – Consult with a dietician. If you are in the middle of a flare – you should be on a low-fibre diet. This was my typical day:
  Breakfast – cornflakes with soy or almond milk, 2 hard boiled eggs, morning tea – rice crackers with clams, lunch – chicken soup with gluten free pasta and peeled white potatoes and carrots (boiled with a bay leaf, fennel seeds and salt) and a piece of lean steak cooked on the pan with coconut oil, dinner – rice with mild chicken curry
• MEDICATIONS
  – Mesalamine enema’s are extremely beneficial, holding it in overnight if possible
  – don’t take anti-inflammatories – especially Ibuprofen
• PHYSICAL
  – Yoga for back pain. Even doing 3 rounds of Sun Salutations in the morning is really useful.
  – Get sunlight – there is a definite Vitamin D deficient link with colitis
  – Check your Heart Rate Variability using a heart rate monitor (Polar H7 bluetooth and iphone app SweatBeat). It helps you to connect the dots in terms of breathing, deep relaxation and nervous system functioning. Balancing your life with activity and rest is so important
  – Get a relaxing massage every month. Keep your stress levels in check
• SPIRITUAL
  – be kind to yourself – you didn’t cause this disease to yourself. We all have periods of beating ourselves up for not being perfect in a sense of diet, stress management and taking our medications. Inflammatory Bowel Disease is complicated. Unfortunately there are no easy answers or solutions. It takes a lot of patience. It doesn’t help when our friends and family, who are trying to be supportive, have very little quality information about our disease. They often think we have caused this diet by eating poorly or even getting it confused with “irritable bowel syndrome”.
  – Mantras – be open to new ways of healing. I am fortunate to have a supportive family – my Mum and Sister bought me an iTunes album of healing Mantras. After listening to them for a couple of days, I noticed a profound change. I would highly recommend Deva Premal and Miten 21 day Meditation Journey
  – Meditation – quiet time to reflect and access your intuition
  – Joseph Campbell – see the process and journey. Very inspirational!

written by Daniel O’Grady

submitted in the colitis venting area