Living with a chronic illness
How it started…
I was almost 30 and had been on an amazing 3-month overland trip through South-America. A trip through Easter Island, Chili, Bolivia, Peru, Ecuador and its final destination of the Galapagos Islands. We had been camping, trekking and visiting all the highlights along the gringo-trail; Salt flats, Lake Titicaca, Nazca lines, the Inca trail, Santiago, Lima, Cusco, Quito, La Paz. Two weeks before the end of the trip, we reached the town of Baños (southern Ecuador) where we stayed at a ‘Spa and Ranch’. All the girls opted for the Spa treatments and we spent most of the day in and around a Jacuzzi. The next day we were supposed to go on our week long jungle-tour. I woke up feeling awful and decided to stay another night, but I wasn’t feeling any better. The trip to Quito the following day was horrendous, as I needed to throw up the entire time. I remained ill for another week, lost almost 10 kilos but managed to join the trip to the Galapagos Islands where the beautiful scenery and exotic animals, sunshine, yoghurt and tiny portions of fresh fish helped me to feel a little better. I went back home to London and for the next 6 months this mysterious illness, with stomach cramps and bloody stools, would periodically reappear and I was absolutely terrified as to what it could be.
When I got so ill and weak that I couldn’t work any longer, I finally went to see the GP, who sent me to hospital immediately. Three days later, just before Christmas 2002, I was diagnosed with Pancolitis; a form of Ulcerative Colitis which affects the entire large intestine. I was in shock, but the IV steroids made me feel better quickly so I managed to spend Christmas with my family in the Netherlands. I had gone without my boyfriend of over 6 years, as we had broken up as I was in hospital; I only realised later that the stress of our deteriorating relationship the months prior, had probably worsened my condition.
Seven years of getting more desperate
The first year was a bit of a daze; I was very shocked about having a chronic illness, but I knew little about what it actually meant. I bought a number of books with ‘useful’ advice ranging from 'You should only eat raw fruit and vegetables' to 'You can eat anything, but if it makes you feel bad, don't eat it'. So I was a bit lost, but the large volume of Prednisone (steroids) I was on, quite rapidly made me feel better. Whenever I would have a flare-up, I would take my ‘happy pills’ (little did I know) and I would feel better quickly, and with the help of those pills I could keep up at work and in my social life as I was newly single and in my early thirties, with a good job living in Nothing Hill. Life was good.
The intensity of the flare-ups increased and the periods of remission shortened, the steroids weren't magic anymore; they would affect my mood and my face swelled up like a balloon (they call it 'moon-face'). I tried many different medications (immuno-suppressants, infliximab, mesalazine), but nothing worked and I was struggling. My social life became a struggle as I just didn't have enough energy, I could barely drag myself into work. I would usually have a big flare-up during November/December (cold weather definitely made things worse) so was used to cancelling most Christmas celebrations. And it was not just the chronic nature of the illness; it was the incredible embarrassing awkwardness of it all; having dinner with friends isn't fun when your stomach aches and you need to rush to the toilet as soon as you have had a bite to eat. From having accidents to full-blown panic attacks on the tube, as I needed a bathroom - NOW! I knew all toilet stops along all the tube lines, and there was a concert I vividly remember wearing a diaper - yes I watched Van Morrison with a moon-face and diaper… but at least I didn't miss that event!
I couldn't go on this way; I had been dealing with this socially debilitating illness and complete mental rollercoaster for over seven years and it was only getting worse. The specialist said there were no other drugs but that they could remove the large intestine and in theory, I would be ‘cured’. I was so desperate that I didn't even hesitate; I wanted them to just remove that ill part of me.
The big surgery
January 2009 would be surgery part 1; complete colectomy surgery (removing my entire large intestine / colon) and a temporary ileostomy (stoma bag). Well, that was the plan. I was admitted to hospital and had crosses drawn on my stomach, when the doctor asked about my current medication. It turned out that, as I was on steroids and was also taking birth-control, the surgery was to be postponed as it was risky…. Unbelievable, nobody had asked or told me about what things to take or not take; I had a mini-meltdown. I had to go back to work (where they had given me cards and get well soon presents and were not expecting me back for at least 3 months) and wait for 6 weeks.
In March, I returned to hospital and this time it all went ahead. I woke up, high on morphine or fentanyl and steroids. There was a long scar going across the length of my stomach, from my breastbone to my pubic bone, with over 20 staples holding it together. I remember thinking I didn’t feel too bad. That was until I saw the stoma... I don't think there is much that can prepare you for seeing a bright red painful unnatural looking bit of intestine protruding from your stomach. It had some sort of transparent bag stuck over it, so that the waste could land in the bag. Initially I had the nurses to help me, so I didn't have to get too close to it yet, but I had to learn to clean it and change the colostomy bag. It was painful as everything was red and infected and the bags would not fit properly and leak. So I struggled. A lot! The next 8 weeks were a haze where I lost a lot of weight and got very depressed, and if it wasn't for my sister (and my baby nephew) I don't know what would have happened. She looked after me; made sure I ate, put me in the shower. I was so thin, some bodily functions started shutting down (lost my period), I just wanted it all to stop. As I was in such a bad shape and my ileostomy wasn't functioning properly, the surgeon moved the reversal surgery forward. May 2009, my ileostomy was removed and everything was connected back up again, so in theory I should be fixed.
The pictures above were taken just after the surgery (see my inflated steroids face); my sister Nieke, her husband Jan-Willem and my nephews Jasper and Tim. They most definitely pulled me through a very dark period, as I found it impossible to wallow in self pitty with a little baby in the house…
Well not quite. As I was so thin, some of the little staples and stitches were protruding through my skin, so I had another -small- surgery. But then things should go back to normal.
That following year as I was learning to adjust back to living life, I realised that I had completely underestimated this whole thing. The big scar across my stomach caused me to hunch and I started having terrible backaches. I saw doctors, osteopaths, physios, and then… I tried yoga (hallelujah!). Three months of yoga and my backache had gone and my posture was restored. It was amazing; I started to feel good again.
For about a year or so I stayed in this happy “could I be fixed?” state of mind, before my pouch started to generate the same feeling of inflammation which my large intestine used to have; I was diagnosed with pouchitis (Inflammatory bowel disease of the jPouch). But it wasn't horrible, just uncomfortable. What was horrible were the abscesses which then started forming and they were very VERY painful. The cause? Well the gastroenterologist would refer me to the gynaecologist and back again. For months I was in a loop going back and forth and having these days where I couldn’t sit or move from the pain. My gastroenterologist was at a loss and just didn't have any suggestions. I decided that I needed to see someone else as he just couldn't offer any solutions and it all felt so helpless. I went back to the surgeon and he said fistulas had started forming and he could do minor surgery to attempt to fix it. I must have had about 10 of these fistula-repair surgeries, but it didn't really fix things. A little over 3 years after the colectomy surgery, another auto-immune reaction would appear.
I started to realise that having “the ill part of me removed” was an illusion, as auto-immunity involves the entire body.
More immune madness
September 2012; a bump on my shin, a small red bump as if I had bumped my leg against something. I was just about to move house, had boxes everywhere and this red bump was getting very sore. Within the space of a day it worsened, I would scream it out when I would step out of bed; not the putting pressure on the leg, but the gravity making the blood flow. This wasn't normal. So I went to the GP on the morning the moving-van was due to come. I'd like to take a moment to thank to my sister and brother- in-law -and little nephews- and my friends for basically moving all my stuff while I was at the GP. My family and friends have been a big support! Anyway the GP sent me back to hospital where I stayed for 2 weeks while they took biopsies and tried to determine what it was. On day 8 I asked them to remove the bandage as my leg felt like it was going to explode; they did and it did. Well a horrible eruption of blood and "stuff" came out of the little incision mark on my leg. They had discovered I had a Pyoderma Gangrenosum (basically a sort of gangrene on my leg) - don't google it, it will show you horrible images! Basically a part of the tissue in my leg was dying and it caused little craters of blood and stuff to erupt.
The specialists connected the dots and said it was an auto-immune illness and that it probably meant that I had Crohn's disease too. Two positive things came out of it this; a) they put me on Infliximab infusions (biological agent suppressing TNFα) in combination with Azathioprine (immuno- suppressants) which started working rapidly, started to heal my leg and also helping the pouchitis and b) I was referred to a new gastroenterologist Dr Irving, who is still my doctor. So I was released, moved into my newly unpacked house and my leg healed really well. To this day, I am still on the 8-weekly infusions of Infliximab in combination with azathioprine every day.
That settled things down for a good while. It seemed to lessen the inflammation and life became somewhat normal again. The whole leg episode had left me mentally shaken though; this chronic rollercoaster of feeling fine, and then being in hospital, knowing it could come back and there was a whole raft of other auto-immune issues I could get, was really messing with my mind. So I was looking for things that could help me; read more books, saw a psychologist and returned to yoga. The yoga really started to have an effect physically but it also helped mentally when I increased my practice to at least 3 days a week at the studio. Little did I know I was going to really need yoga to help me through the next phase.
During 2015 I was having trouble with my stomach; three times I had an episode where after eating it felt like something blocked, some obstruction in my intestines. It would last for about 8 hours; I would get very nauseous and then would throw up, getting a high temperature and then for about 10 minutes it would ease. But I couldn’t lie down, or sit even as everything would hurt. I would be on my hands and knees, waiting for whatever was stuck to come out. It was absolutely terrifying and I thought I might die. So I visited the surgeon telling him something wasn’t quite right and after some scans and MRIs he said he would open up the old scar to see if he could straighten out whatever was not right. So I was expecting to be off work for a week or so, in order for the big scar to heal. Little did I know that I was to have another ileostomy - I literally woke up when the nurses were checking the scars and saw again a bag on my stomach. I absolutely lost it as I had been so traumatised the first time. The good thing was that the surgeon came up to visit quickly and he said it would be a temporary stoma again; apparently they had removed a large piece of small intestine which had all fistulas running through it (normally your small intestine is the width of your thumb, mine was flat and almost as wide as a hand). So they had to remove a large piece and again needed my scars to heal, therefore I had to have the stoma. The nurses were all amazing especially the stoma nurse as she had been told I had been struggling badly the first time, so she was determined to find the right fit for me. And she was true to her word, medical technology had advanced in the past 5 years and I got a bag which worked for me. This time round it wasn’t too bad, I got used to the routine and felt well and didn’t lose much weight. Just before Christmas 2015 the reversal happened and I was well enough to travel home and celebrate Christmas with my family.
Exactly 6 weeks to the day of my last surgery I was allowed to practice yoga again - I hadn’t been doing any for the 3 months I was ill. I remember clearly, the 9:15am Flow and Restore class at the Power Yoga Company. I took it slow, listened to my body, didn’t push or force anything. And when I came to forward fold I felt the space in my lower back increase and my body let out a big sigh, I burst out in tears, tears of joy. I felt that I was going to be just fine. More importantly I was amazed that my body was already able to do these yoga postures and that it made me feel better, physically and mentally. I wanted to learn more and asked if I could do the teacher training, just to learn more physically and about all the philosophy and anatomy. They enrolled me and less than 5 months after the surgery I had my 200 hour certificate from the Power Yoga Company. I was as strong and healthy as I had ever been. My yoga journey had truly kicked off.
Since 2016, I have studied more yoga; Yin and I’ve completed my 300 hour Yoga Therapy course. I’m furthering my understanding of Zen mind-training and Buddhism and I’ve qualified as a Thai yoga massage practitioner.
I feel the physical and mental qualities of mind-body practices are the key to make me healthier. I need to be disciplined and practice every day (meditate, move, stretch), but I am still very much engrained in the stressful office job in the city of London. And there lies the problem; I’m a type-A, conscientious, work too hard, get stressed type of person and working in a bank stresses me out to the extreme. I still have fistulating Crohn’s disease. I still have fistulas.
But I am still 100% hopeful and determined to create a better work-life situation, to move out of the city, live somewhere green, get a dog, practice massage and teach and practice yoga, or anything mind-body-wellness related. I am convinced it will be the only way; instead of depending on medicine or waiting for a miracle cure (which is not going to happen looking at the current medical approach), I need a more integrated and whole-body approach which will allow the innate healing power of my body and mind to work its magic. I need to take ownership of my recovery rather than giving that power away. Looking for a holistic approach and ensure that all the factors are there for me to heal; less stress, more meditation and yoga and a healthy environment.