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“It took a long, long time for me to learn to only take on one task at a time and start living in the slower lane” – Sue-Ellen’s story
I was first diagnosed with ulcerative colitis in 1990. I am now 63 years old with relatively stable health. I’m still active, work two part time jobs and enjoy going on camping holidays. Both my father’s and mother’s families have auto-immune conditions everywhere you look – rheumatoid arthritis, juvenile arthritis, Ankylosing spondylitis, Lupus and ulcerative colitis. There is also Lymphedema on my dad’s side of the family, and osteoporosis on both sides of the family.
I was definitely genetically predisposed to getting some sort of autoimmune condition. Having seen my older relatives deal with rheumatoid arthritis from their 40s, some of my cousins as kids suffer with juvenile arthritis and further conditions in their adulthood, and my aunt deal with Lupus – I consider myself fortunate to only get ulcerative colitis.
It took a long time for my UC to get to a manageable stage. I have an anaphylaxis reaction to aspirin, so cannot take the meds that are the first port of call for colitis. Prednisone enemas and cortisone tablets are the only treatments I can use. During my first severe flare up, I had to go through an elimination diet until I worked out what my gut would tolerate. I ended up living on boiled white rice with a bit of organic strawberry jam mixed in for about 3-4 months, then I could slowly introduce other foods.
During the first six months, I was rushing to the toilet 16-20 times a day – very life limiting. The worst flare up that I had was when my four kids were all under six. It resulted in me being on prednisone enemas and cortisone tablets for 12 months total (I was normally size 12-14 clothes. After this episode size 8 and 10 from the op shop were falling off me).
Aggravating/triggering foods for me for flare-ups are:
- Lactose & gluten (I have been lactose and gluten intolerant all my life, so no surprises there. Always had a pretty good diet avoiding them),
- Sugars
- High fibre foods (especially legumes)
- Products with added yeast (they are really disastrous – however naturally occurring yeasts, like the white that occurs on the skin of grapes, doesn’t seem to impact)
- Any burger or bun from MacDonalds (no surprises there either!).
My biggest trigger for a flare up was STRESS combined with exposure to any of the aggravating/triggering foods.
I had thrived on stress all my life and would go all-out on multiple projects all at once. With four children under four, I would paint the house and dig up the yard for a massive veggie garden, and volunteer to be committee member at playgroup and preschool – pretty normal for most mums.
I had never been one to sit on the couch and rest – there was always something that I wanted or needed to do.
It took a long, long time for me to learn to only take on one task at a time – or even one every few months – and start living in the slower lane to reduce my stress and adrenaline levels.
Mental health
I found the mental health challenges of weight/strength/fitness loss, lifestyle change (i.e. needing to find a toilet 16 times a day!) and not being constantly active/thriving on stress very difficult to deal with. It took about ten years to adapt mentally and accept my ‘new normal’. In those ten years, I also got married and had four children, which added hormonal ups and downs and sleep deprivation to the mental turmoil of colitis flare ups.
Once my colitis was in remission, I was so relieved about being able to enjoy foods and have a full tummy (and being able to put on weight and develop muscle again), that I would usually go too far and become overweight. OR I would go too hard on the fitness aspect and burn myself out.
It was very difficult to get to a good, stable, physical fitness level and routine AND keep a steady mental health balance. Following a flare up, I found that my brain and body were unsure of what endorphin levels were ‘normal’ once I was in remission, and starting to exercise again. My body/brain had forgotten the signs to signify that I had (or hadn’t) reached a threshold for physical activity.
My mental and physical health were undoubtedly impacted by the amount of cortisone that was getting shoved into my body during flare-ups, and the resulting ‘weaning off’ when I went into remission.
Stability
It eventually got to the stage where I was only having flare-ups every 3 to 5 years, and they would only last for about 3 to 4 months. So life was manageable, and I could start part time work again.
I missed having a cold beer after a hot day doing the gardening, and I really miss baked beans and eating lots of peas out of the pod. But it’s a small price for stable health.
I eventually found that I could have ‘trigger’ foods (except beer – it is disastrous) once every few weeks in small doses with no ill effects. But a small amount for more than two days in a row resulted in a small flare up (diarrhea and bleeding for a few weeks — then needing the prednisone enemas to settle it down).
For 20yrs now I have been able to eat a high-quality fruit & nut toasted muesli for breakfast without any issues from high fibre – and that has been so wonderful. I had really missed the texture of nuts and seeds when I was avoiding all triggers. I found that if money was tight and I bought a cheaper muesli, the higher added sugars in it would upset my gut – so it has to be the top quality or none at all.
But then …
About nine years ago my body developed another auto-immune condition – Graves Disease.
I would have thyroid storms throwing my heart into atrial fibrillation and end up in hospital for days while they got things under control. It took a long time (over two years) to stabilise my thyroid hormones and find the right level of meds, but we are there now. However – since getting Graves disease, I have had NO colitis flare-ups. At all.
I am still careful with my food but eating a small amount of trigger food for more than two consecutive days now only results in a bit of diarrhea – not a full flare up. So, for me it is now a food intolerance reaction rather than colitis. And (really exciting for me) I can now eat handfuls of nuts as snacks during the day, with no ill-effects.
I’ve been over 9 years now without even a minor colitis flare up, so I am happy about that (but would still rather not have the thyroid condition!!).
I still avoid the trigger foods, as I don’t want to go backwards.
I’m now 63 years old and have early-stage osteoporosis – due to lots of cortisone medications for the colitis flare ups (and asthma puffers – they also have steroids).
The thyroid storms also apparently draw calcium out of bones.
I’ve been on calcium & vitamin D supplements for all my adult life and remained active – as I knew avoiding milk products could affect my calcium levels. Hopefully my bones are better than they would have been had I not been on supplements and active.
I’m still working 2 part time jobs (hope to stop soon), have a reasonably healthy diet and regularly exercise (swim 1-2km most days, gym twice a week, walk, and go on the occasional bike ride). My health is pretty good and manageable. We are now empty-nesters and enjoy going on regular camping trips with our camper. We also enjoy bushwalks and ocean swims.
My weight could be 10kg lower (am now size 16, but would like to be 14), but menopause and thyroid meds have slowed my metabolism down drastically, which makes that extremely hard to achieve.