Donna (my wife) was diagnosed with Ulcerative Colitis 13 years ago and suffered badly for many years.
It was the start of how I came to specialise in helping people with Crohn’s and Ulcerative Colitis. In her own words, here is her story (which I must admit I find quite emotional reading). I truly hope you find it inspiring…
“It all started in August 2003 at V Festival, Chelmsford. I was 20 years old and was camping at the festival for the weekend with my then boyfriend and a group of friends. It was a typical festival weekend – too much beer and lots of greasy burgers.
After watching Red Hot Chilli Peppers perform on the Saturday night, it was back to the tent. I remember waking up in the middle of the night and waking my boyfriend as I was desperate for a poo! So off we both went to the disgusting overflowing portaloos in the campsite. Unfortunately I had to go another 3 times that night. The Sunday was horrendous. Anyone who has been to a music festival will know what the toilets queues are like, so it was a particularly bad experience with an upset tummy.
2 days after the festival it was clear that I had some sort of bug. I went to the GP who told me it was gastroenteritis and gave me tablets for it. This lasted for about 2 weeks, after which time the bleeding started. I was terrified. My GP, suspecting that I may have Ulcerative Colitis (UC), referred me to a consultant.
After being referred to the consultant in September, I got an appointment in March at the hospital for a colonoscopy – 7 months away! My poor parents were at their wit’s end, watching their daughter just fade away in front of them. By the time February came around things had got so bad that I was taken to A&E. I was dangerously underweight and losing so much blood that I had become anaemic. The consultant that I saw said that I was a matter of weeks away from collapse and said I was lucky I had gone to hospital when I did as I was very close to death.
After a flexi-sig, I was finally diagnosed with UC. They could not see the extent of the disease as the inflammation was so bad that they could not push the camera any further. It was such a relief to know what was wrong. I stayed in hospital for a week, on a steroid drip and on Mesalazine.
Into March and I went for the pre-arranged colonoscopy. I was kept in hospital for another week after this to try to reduce the inflammation. Cue more steroids, Mesalazine and about 10 pints of blood taken. Swollen hands from the drips that were so bad I couldn’t use my hands for a week after being home and had to get Mum to bathe me.
The list of medications was insane. I remember my Dad sitting with me at the dining table and we were trying to work out which tablets I needed to take at what time of the day – steroids, Mesalazine, iron tablets, antibiotics. I was taking about 30 tablets a day when I came out of hospital!
I was training to be an Accountant at the time (boring I know, forgive me) and I was off work sick for about 4 months. Hindsight is a wonderful thing, and I now realise that the pressure of the Accountancy training is probably what ‘pulled the trigger’ on my UC. The situation was basically that if we did not pass the exams we would lose our jobs. I am now convinced that this stress is what made the UC appear in the first place.
Very slowly I started to get better. My 21st Birthday was coming up in the June and I was just about well enough to go out drinking. Yay. I was still extremely skinny and weak, and again in hindsight I really should not have been drinking.
Knowing what I know now, when I think back to the advice from the dietician at the hospital it was absolutely shocking, telling me to eat many of the foods that I now know to be big triggers for me.
I know this now but when you’re told this stuff by someone at the hospital you just believe it don’t you? Just like you believe it when the consultant tells you you’ll be ill for the rest of your life…
The trip to Barcelona
One stand out memory around this time was my then boyfriend taking me to Barcelona for my 21st. A lovely gesture as we were both pretty skint at the time but unfortunately a bit of a waste of money on his part. I could barely eat anything, and if it wasn’t for the open top buses, I don’t think we’d have seen much of the city.
I recall getting off of the bus and walking up to see Park Guell. Absolutely gorgeous, but what a mission when you’re still in a UC flare. He almost had to carry me, I was so weak. I remember getting into the park and sitting for a very long time just wishing I was at home in bed. Sounds ungrateful but I was in a very bad place with my health.
By September 2004 I was still on steroids, which even though they managed to stop the bleeding left me with badly aching joints and an awful moon face. The consultant decided to put me on an immunosuppressant drug called Azathioprine (Aza), to take in conjunction with Mesalazine. I had been made aware of some of the side effects of Aza, but was not told anything too concerning.
I stayed on the Mesalazine and Aza for years, and for much of that the UC was largely under control. When I say “under control”, I mean that there was no blood or diarrhoea any more.
But the exhaustion – wow – it was horrendous. And I would wake every morning in so much pain in my bowel that I wanted to cry. But you don’t. You get up and you go to work and get on with it. Even if that does mean falling asleep at your desk or in the toilets (many times).
Greg and I knew each other already from work, but we started dating in July 2007. I remember being terrified at how he might react when I told him about the UC, but he was surprisingly cool with it.
And so it carried on for a few more years. I was drinking far too much and too regularly. And I was eating pretty much whatever I wanted. A typical weekend would be drinking Friday and Saturday night, followed by a Chinese on Sunday night. This would then be followed up by a week of absolute agony and exhaustion, and the cycle would continue.
I had a bad flare up on our honeymoon in Thailand.
I think this was the first time I had an accident and I was mortified. Here I was on a dream island with my new husband at a gorgeous 5* hotel and I’m walking around sh*tting myself. It was a horrible and embarrassing situation. All of the other flares I had to date had been at home or in hospital so this was a new experience for me. Again Greg was amazing about it, actually making me laugh about the situation. But it was not an experience I would like to repeat.
So back on steroids it was for me. And this time, being that much older, they completely knocked me for six. My hips were so bad that I could barely move from the sofa. I developed terrible anxiety. And once again the moon face was horrendous. It was during this time that my passport needed renewing, so I have a lovely reminder of that moon face for 10 years. Great.
It was at this point that I decided I would never put another steroid in my body again, and I have stuck to that, despite yet another terrible flare, which I will get to shortly.
The next chapter in my health was contracting shingles which was possibly the most horrendous thing that has ever happened to me. I still to this day think that it was worse than all the years of suffering with UC and that’s saying something. And the reason it was so bad? Azathioprine.
Now most people get shingles and can either carry on as normal, or they have a fairly mild case that is over quite quickly. Not so when you’re taking immune-suppressants. I was unwell with shingles for over 9 months. The GP said it was the worst case they had seen in years. I was on yet another cocktail of drugs for 10 months and spent most of that time, including my 30th birthday, in a bit of a dazed and confused state.
This was a turning point for both myself and Greg.
For me, it was the consultant saying “you got shingles because you take Azathioprine”. My words straight back were “get me off of it then”.
Greg was a qualified nutritionist and made a decision after the shingles episode that I will be forever grateful to him for as it quite simply changed my life. He did not believe that my lifestyle was helping my health, and so he started to do all the training and research that he could to discover how I could beat things once and for all. He was sure that it could be done naturally, but I wasn’t convinced. I was curious but I was also swayed by the Doctor’s when they tell you that medication is the only way.
While Greg was looking more into this and going on lots of training course learning all he could, I continued to feel like absolute crap. The pain was unbearable at times and the fatigue was constant. Everyday was a battle. And everyday I’d draw on my ‘Happy Donna’ face and present a brave confident me to the outside world, although the reality was very different.
Eventually Greg got me to come round to the idea that nutrition and lifestyle might play a part. Although I was not convinced, I allowed Greg to come up with a meal plan for me and try some things out. And it went amazingly well! I was still drinking at this point (although not as heavily as in the past) but I honestly felt like a different person within a couple of months of changing what I ate.
Now, me being me, once I get an idea in my head I am like a dog with a bone. I am very determined when I want to be. So fuelled by this success with the diet I decided that my mission was to come off of all medication. Now I am not saying that this is the right course of action for everyone, and I am certainly not telling people to go against their Doctor’s advice, but I knew deep down that this was the right thing for me personally.
A turn for the worse
As with any journey, you expect it to go smoothly, but then obstacles get in the way. And my god did I have a big obstacle. I was happily going along, getting better every day, and even training at the gym 4 times a week (I have never had energy to exercise once a week let alone 4 times!). I had never felt so happy or healthy.
Then we went to Thailand again, this time for my best friend’s wedding where I was bridesmaid (and Greg actually gave the bride away – long story!). We had been in Thailand for just 2 days when the bleeding started. I can’t begin to explain how that felt when I was in the best health I had been in years.
I was still taking the Aza and Mesalazine, as it hadn’t felt right to reduce them yet, but as I said earlier, I was not going to put another steroid in my body. And boy did I flare. It was honestly the worst flare of my life. I was so skinny that I was disgusted when I looked in the mirror. There were days when I was in such despair that I was very close to going to get some steroids and in fact I did get a prescription at one point, but I never actually got the tablets.
I was in a bad place both mentally and physically. It was Greg who kept me going during this time, he was so supportive, and so understanding when I was sh*tting myself every time we walked out of the house. All this time he was desperately racking his brains, and doing more and more research for the next plan of action.
Eventually we found the culprit. Greg had long suspected I had picked up a parasite or bacteria in Thailand, but initially we couldn’t find any evidence. However, Greg got me to do a stool test (not one of the ones from the doctor) and an urinary Organic Acids Test (OAT) and it showed some very nasty bacteria in my gut. We did a very strong natural protocol to kill it off and it changed everything! I quickly started to regain energy and weight.
Feeling well I made the decision (without telling Greg or my consultant) to stop the Mesalazine as I didn’t feel it was doing anything for me. I stopped it and everything stayed the same. So after a month, I decided to reduce my Aza. And kept doing this until I had tapered myself off.
Again I will say I am not recommending this to anyone, seek advice from your consultant. However my appointments were getting rescheduled all of the time and I was desperate to stop the tablets and couldn’t wait for a consultants appointment (which is still being rescheduled, many years later!).
Stronger than the Disease
So that brings us up to date. And I am healthier now that I have ever been. I am symptom and medication free. In fact, I am healthier than most people I know without health conditions. And I can honestly say I LOVE my lifestyle.
Do I live a boring life? No! I live an active and healthy life on my own terms. I enjoy what I eat and how I live. Never again will I allow the UC to get the better of me. I am stronger than the disease and I have not come this far to allow it back into my life again.
I have actually found it very emotional writing up this story, it has stirred up memories that I had deliberately pushed to the back of my mind. I hope that you will find some sort of hope from my story that you can somehow use in your journey. Your goals may not be the same as mine in terms of getting to a place where you are medication free but hopefully I have helped to inspire you that there is a better way than a lifetime of suffering.
Quite a journey, huh?
I now specialise in helping people to turn their health around when suffering with Crohn’s and Ulcerative Colitis, and have achieved similar results with a large number of people. You can see some of their stories here.
If you would like to learn more about turning things around in the way Donna has been able to then click here and you’ll be able to get access to a presentation on the 5 step process to transforming health when living with Crohn’s or Ulcerative Colits. Really hope you find it useful.