My IBD story so far - recorded in 2021
“Modern medicine, for all its advances, knows less than 10 percent of what your body knows instinctively.”
USEFUL LINKS FOR IBD
How it started..
I was 29 years old and had been on an amazing 3-month adventure through South-America. A journey through Easter Island, Chili, Bolivia, Peru, Ecuador and as final destination, the Galapagos Islands. We had been camping, trekking and had visited all the highlights along the gringo-trail; Salar de Uyuni (Bolivian salt flats), lake Titicaca, the Nazca lines, the Inca trail, Santiago de Chile, Lima, Cusco, Quito, La Paz. Two weeks before the end of the trip, we reached the town of Baños in southern Ecuador, where we stayed at a Spa and Ranch. Most of us girls in the group opted for the Spa treatments and we spent de majority of the day in and around the Jacuzzi. The next day we were scheduled to go on our week long jungle-tour.
I woke up feeling awful and so decided to pass on the jungle trip and to stay for another night, but I wasn’t feeling any better. The trip to Quito the following day was horrendous, as I was sick and 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 for breakfast and tiny portions of fresh fish and rice for dinner helped me to feel a little better. I went back home to London where for the next 6 months this mysterious illness, with stomach cramps and bloody stools, would periodically reappear. 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 while I was in hospital; I only realised later that the stress of our deteriorating relationship the months prior, had most likely worsened my condition.
“Inflammatory Bowel Disease, also called ‘IBD’ is a collective name for Ulcerative Colitis and Crohn’s disease. IBD is a chronic condition that is characterised by intermittent periods of active disease (flare-ups) and little or no disease activity (remission). The duration and severity of the active period vary widely from person to person.
Ulcerative colitis occurs when the lining of your large intestine (also called the colon), rectum, or both becomes inflamed. This inflammation produces tiny sores called ulcers on the lining of your colon. It usually begins in the rectum and spreads upward. It can involve your entire colon. The inflammation causes your bowel to move its contents rapidly and empty frequently. As cells on the surface of the lining of your bowel die, ulcers form. The ulcers may cause bleeding and discharge of mucus and pus.”
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'. I was a bit lost, but the large volume of Prednisone (steroids) I was on, 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 felt good.
But over time, 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 (some call it 'moon-face'). I tried many different medications (immunosuppressants, infliximab, mesalazine, many antibiotics), but nothing worked and I was struggling. My social life became non-existant 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 when the cold weather would make things worse, and I was used to cancelling most Christmas celebrations. It wasn’t just the chronic and physical nature of the illness; it was the incredible embarrassing awkwardness of it all; having dinner with friends isn't fun when you have stomach pains 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 where I 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 only now realise how much shame I felt, all the time.
I felt so much shame over my ‘moon-face’, left, in the summer of 2008. For comparisson, me in 2018 on the right.
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
“During the first surgery, the colon and rectum are removed, and a pouch, commonly in the form of a J, is created at the end of the small intestine and joined to the top of the anal canal. At the same time, a temporary opening known as a loop ileostomy is created. The ileostomy will allow waste to pass through the abdominal wall into an ostomy bag while the newly formed pouch heals. The second surgery occurs after 8 to 12 weeks, once the pouch is healthy. At this time the ileostomy is closed and the two ends of the bowel are reattached.”
The pictures above were taken just after the colectomy surgery in 2009
January 2009 would be surgery part 1; complete colectomy surgery with the removal of 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 and I had a mini-meltdown. I had to go back to work, where they had kindly 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 a multidtude of staples holding it together. Not pretty, but I remember thinking that I didn’t feel too bad. That was until I saw the stoma... I don't think there was much that could have prepared me for seeing a bright red painful unnatural looking bit of intestine protruding from my 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. 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. For a period of 3 months on and off, she looked after me, made sure I ate, put me in the shower and back into bed. I was so thin, some bodily functions started shutting down, and 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…
Fixed?
Well not quite. As I was so thin, some of the little staples and stitches were protruding through my skin, so I had another minor surgery. But hopefully 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 totally 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 walked into the little studio at the end of my street and tried yoga. Three months of private lessons twice a week and my backache had gone and my posture was much improved. 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 incredibly painful. The cause? Well the gastroenterologist would refer me to the gynaecologist and then the gynaecologist would refer me back again. For months I was in a loop going back and forth and was having moments where I couldn’t sit down from the pain. I would have days where I had to ring and beg the gynaecologist for an urgent appointment to drain a new swelling just to relieve the pain. This would be done without anaesthetic, just a knife. The procedure, however painful, would be such a relief that it was better than all the pain around it.
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 utterly hopeless. I seemed to have expensive bloodtests every other week, and some seemingly random scans and tests. I came across the letters he would write to my GP and also a list of private insurance bills. It was a shocking amount of money he made, and I would often have to pay additionally as the insurance wouldn’t cover it all. Not only did I feel he failed me, but he just kept me in a system, profiting all the way.
I went back to the surgeon where I had more tests and scans and he said fistulas had started forming. He said he could do a surgery to attempt to fix it. It was as a day patient, but under full anaesthetic, so still quite involved. 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 autoimmunity involves the entire body.
More auto-immune issues
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 dramatically. I would scream it out when I would try to step out of bed. Not so much in the putting pressure on the leg, but the gravity making the blood flow into the bump. 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 and in hospital. My family and friends have been such a big support!
Anyway the GP sent me back to hospital where I stayed for another 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 (which by the way is not related to gangrene). The tissue in my leg was ulcerating and it caused little craters of blood and stuff to erupt.
“Pyoderma gangrenosum is a rare condition that causes large, painful sores (ulcers) to develop on your skin, most often on your legs. The exact causes of pyoderma gangrenosum are unknown, but it appears to be a disorder of the immune system. People who have certain underlying conditions, such as inflammatory bowel disease or arthritis, are at higher risk of pyoderma gangrenosum. Pyoderma gangrenosum ulcers can develop quickly. It usually starts with a small, red bump on your skin, which may resemble a spider bite. Within days, this bump can develop into a large, painful open sore. The ulcer usually appears on your legs, but may develop anywhere on your body. Sometimes it appears around surgical sites. If you have several ulcers, they may grow and merge into one larger ulcer.”
The specialists said it was an autoimmune illness, connected the dots and said that it most likely meant that I had Crohn's disease. Two positive things came out of it this;
they put me on Infliximab infusions (biological agent suppressing TNFα) in combination with Azathioprine (immunosuppressants) which started working rapidly, started to heal my leg and also helping the pouchitis and
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 very fast. Some 3 months later, I didn’t need to bandage my leg anymore. The new medications were also effective for my Crohn’s disease and to this day, I am still on the 8-weekly infusions of Infliximab in combination with azathioprine.
“Symptoms of Crohn’s disease include loss of appetite, chronic diarrhoea, (which is sometimes bloody) cramping, pain in the abdomen, and weight loss. Stress can worsen symptoms but doesn’t necessarily cause the disease. The disorder can lead to a number of complications, including intestinal blockage. This occurs as a result of the swelling and scar tissue that can thicken the intestinal wall, narrowing the passage. In addition, sores or ulcers can tunnel through the affected area to surrounding tissues including the bladder, vagina, or skin, including the areas around the anus and rectum. These tunnels, called fistulas, can become infected and may require surgery.”
More surgery
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 autoimmune issues I could get, was really messing with my mind. So I was looking for things that could help me; I read more books, saw a psychologist and returned to yoga. The yoga really started to have an effect physically; I was feeling stronger and more flexible, but it also helped mentally. Especially when I increased my practice to going to the studio at least 3 times a week. Little did I know I was going to really need yoga to help me through the next phase.
During 2015 I started having trouble with my stomach. On three occasions I had an episode where after eating it felt like something blocked, like some obstruction in my intestines. This would last for around 8 hours; I would get very nauseous and then I would have to throw up, I would get a high temperature and then for about 10 minutes it would all ease. But I couldn’t lie down, or sit as everything would hurt. I would be on my hands and knees, for 8 hours, waiting for whatever was stuck to come out. It was absolutely terrifying and I truly thought I might die.
I visited the surgeon telling him something wasn’t 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. I was expecting to be off work for a week or maybe two, in order for the big scar to heal again. Little did I know that I was to have another ileostomy - I literally woke up when the nurses were checking the scars and again saw a bag on my stomach…. I absolutely lost it! 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 (the nurses hadn’t been able to tell me that). Apparently he had removed a sizeable piece of small intestine which was all twisted and had fistulas running through it. Whereas normally the small intestine is the width of your thumb, mine was twisted and flat and almost as wide as a hand. So they had to remove that piece and again needed the connection to heal, therefore I had to have the temporary stoma.
The nurses were all amazing, especially the stoma nurse. She had been told that I had struggled badly the first time, so she was determined to find the right fit for me. She was true to her word, as medical technology had advanced a lot in the past 5 years and I got a bag which worked for me. So all in all, this time round it wasn’t too bad, I got used to the routine and felt well and didn’t lose too much weight. Just before Christmas 2015 the reversal happened and I was well enough to travel home and celebrate Christmas with my family.
Yoga
Exactly 6 weeks to the day of my last surgery I was able to practice yoga again - I hadn’t been allowed to do any yoga for the 3 months I was recovering.
I remember it 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. When I came to forward fold I felt the space in my lower back release and my body let out a big sigh; I burst out in tears, tears of joy, of relief, of profound insight. In that moment I knew that I was going to be just fine. More importantly I was amazed that my body was already able to do these postures and that the practice made me feel better; physically, mentally and emotionally.
I wanted to know more and enquired about the teacher training at PYC, just to learn more about the physical postures and about all the anatomy and philosophy. They approved, I enrolled and less than 5 months after the surgery I had my 200-hour teacher certificate from the Power Yoga Company. I was as strong and healthy as I had ever been. My yoga journey had truly kicked off.
The universe confirmed my decision, in a moment of beautiful synchronicity; that very same class, the one where I had my ‘I want to realy know yoga’ moment, is the one I started teaching in 2017 and have taught most weeks (until Covid struck). Absolute Magic.
Qigong
Since 2016, I have kept learning; I’ve studied another 80 hours of Yin Yoga and I’ve completed my 300 hour Yoga Therapy teacher training course. I went to two silent retreats in Italy and I’m furthering my understanding of Zen mind-training and Buddhism. I’ve also qualified as a Thai yoga massage practitioner and as a myofascial release practitioner. I cherish this opportunity to learn and grow and currently I am close to finishing my 200 hour Qigong teacher training.
Qigong is mindful movement with breath connection – similar to yoga. Whereas yoga originated in India, Qigong stems from China (around 550 BC). These eastern philosophies are all connected and share great insight about being at one with nature. Qigong has been profound in my understanding of energy and healing, it has been the missing link in getting in touch with my own energy. I feel the physical and mental qualities of these mind-body practices are the key to make me happier and healthier.
“Yoga was crucial in helping me connect my body and mind, but Qigong helped me connect to my energy and soul.”
Just before Covid struck, I finally made the decision to resign from my stressful city job. I had already realised that perfectionism was really covering up the feeling of not being good enough through the Hoffman process. Working in a highly competitive environment as a type-A, perfectionistic, conscientious, work-too-hard, get-stressed-type-of-person was just super unhealthy for me. I was going to teach and practice fulltime. I had also finally paused my medication just before Covid struck, but as the pandemic started, I had a flare-up. I panicked and returned to medication and infusions. They helped initially but over the past months my flare-up has got worse. I have inflammation and we’re unsure if the current medication is still working for me. I’m also continue to be very anaemic and need frequent iron infusions.
Covid has taught me that I really needed to slow down more. Yet I also need to be disciplined and practice every day (meditate, breathe, move). While stuck at home I studied Somatic movement to help my hip which had seized up meaning I couldn’t practice yoga much. Somatics very effectively helped to release the tension and was great to help me slow down even more.
MY CURRent state of health
In Januari 2022 I had another blip in my Crohn’s journey, I had developed sepsis due to three active fistulas abscessing. I was unfortunate that it happened around the Christmas holidays and another Covid spike, so I had to wait at home in agony before I could be helped. I was in bed all day (as I couldn’t sit) and the pain would be so bad, that I would sit in a bath every half hour or so, as it would bring me relief. I stopped eating as the pain of going to the toilet was just to much to bear. When I finally I did go to hospital after 8 days, I was lucky that I could be admitted and had surgery on that same day. The best thing was that I shared a room in St Thomas’ Hospital with one of the best views in London. The fistulas were drained and setons were placed to keep them open. Even though initially it was sheer joy to be relieved from the excreting pain I had been suffering, two of the setons were extremely uncomfortable (think a plastic string through a whole near your private parts - ouch) and I was delighted when after a month they were removed. The third one is still here as it helps to prevent the persistent fistula from causing havoc again. Dues to this fistula activity it was advised to start taking biologicals again and at the end of Januari I started weekly injections of Humira (Adalidumab), another anti-TNF alpha biological drug. I continued this medication until April 2023 when after many tests (endoscopy, MRI, blood tests, stool sample) it appeared this type of immunomodulator was no longer effective. I have recently started Stelara (Ustekinumab) which targets a slightly different part of the immune system, a targeted monoclonal antibody called interleukin 23 (IL-23). I’m hopeful that this therapy will be more effective. I will keep you posted.
High from the anaesthetic and happy to be relieved from the excruciating pain in my *rs*
Grateful for the view from my hospital bed
LOOKING AHEAD
Physically I might not be better (whatever that means in relation to chronic illness), but mentally, emotionally and spiritually I feel healthier than ever. I am growing and feel connected with all these beautiful practices. I feel that I am so lucky to have the opportunity to keep learning and to keep growing. I hope that my physical health does improve, but my heart feels open and connected. I will keep practicing what I learn and keep teaching what I practice. Life is precious.
