Hindsight is a wonderful thing!
When I received my diagnosis of Crohns Disease June this year, I began to reflect on my history with what I have called ‘tummy trouble’ and latterly ‘IBS’. Now I can call it Crohns Disease, with a dash of IBS!
It was only over the past 4-5 years when I really noticed my general health gradually deteriorating. Now I’ve gone right back as far as I can remember and created a timeline to track significant times and possible clues that were missed.
There are certain times that stand out for me. As a chIld I had been healthy with what I see as normal energy levels. I would be up early, anywhere from 6 in the morning and keep going all day. Then I hit my teen years and everything changed. I remember feeling tired a lot, pain, an ‘upset tum’ and a loss of appetite. Fatigue was a big thing from this point of my life and I often had a nap or slept in late. At 18 I began to suffer from tonsillitis, something I’d never had before. I was treated with penicillin each time which always cured me. All of that could be normal for any teenager with hormones shooting around and the pressures that come with this age, but it sticks in my mind.
What I remember at this stage is my family commenting that whenever we went out, I had to locate the toilet. However this wasn’t just because of my Crohns. I’ve always found time spent with my family stressful, so having a bolt hole was always a priority! I’m also a smoker, a big no no when you have Crohns, so I would find somewhere to smoke too. Around this time my sister was dating her future husband, and had invited all the family to her boyfriends house for tea for the first time. My best behaviour was required! Unfortunately, I felt ill and got very sick, and, not remembering where the toilet was, I rushed to the front window, quickly opened it and vomited violently…..in full view of their neighbours that were taking a Sunday afternoon stroll!! >.<
In my twenties tonsillitis became almost a monthly event, and it was more severe as they quickly turned septic and I could be out of action for up to a week. Not good for my work or social life! By the age of 27 the doctors finally agreed that it would be ok to have them removed. Though this stopped tonsillitis my tummy problems increased. I remember driving to Spain for a camping holiday with my husband. He had made the journey many times solo and was hoping to beat his time record by having a second driver, i.e. Me! Wrong! I had to stop at every alternate service station to go to the toilet. This became increasingly difficult as we travelled through France and the toilets evolved into a shower base with a hole in the middle. Not feeling confident of my aim, a choice had to be made whether to hold on or squat, dependant upon urgency. Needless to say we didnt beat his time record for the journey and when we reached our campsite I spent the first week sleeping..a lot! I slept 10 or 12 hours at night and again under the parasol for another 3 or 4 hours in the afternoon, not what he’d expected!
When we began to live together, I recall him saying that he’d hear my tummy grumbling and rumbling in the night and that it sounded like ‘French plumbing’. A noisy, gurgling stomach has been a regular feature of my Crohns. He then found an article in a magazine about IBS which seemed to fit with my symptoms and my GP agreed, that that’s what I had. From then on I focused on improving my physical and mental wellbeing and tried to eat a better diet, manage my stress better and to exercise more.
By my thirties I noticed that my stomach was getting worse. I was aware that my stomach was affected by my stress levels so I went to counselling to work on my psychological wellbeing and learn to manage my stress better. This was a turning point for me and is the reason I became a Psychotherapist. At the same time I requested a referral through my GP who referred me to Gastro for investigation. The consultant was great. He had a sensitive manner and good sense of humour, always a plus when talking about bowl behaviour! I had an endoscopy and a biopsy taken from my colon and all came back clear. He suggested that I could have some dye and an X ray for further investigation at which point I declined. My anxiety levels had become high going through the tests and I felt it wasn’t in my best interest to go any further. Lately I’ve wondered if I made the wrong decision. Maybe I could a have got an earlier diagnosis and treatment faster. But if I’d done that, perhaps my life would have been restricted earlier, perhaps I wouldn’t have done some of the great things I’ve done, as they say ignorance is bliss!! And the research and treatment has progressed since that time, so perhaps the treatment I get will be better now. Whether it was right or wrong, its not something I can change and I made the best decision I could with the information I had at the time.
In my forties my health has noticeably deteriorated. Looking back it was quite subtle. When I got a dog I noticed I always felt like I had a cold. I thought I may have been allergic to her, or to tree/grass pollen as I was exposed to that much more. I tried Antihistamines which didn’t make any difference. I had a biopsy on my mouth because I developed a lesion which again came back clear. Fatigue was more frequent and I regularly needed a nap, I’d changed employment and began to work shifts and put it down to that. Then as I headed towards my late forties I began with night sweats and IBS symptoms became worse, I put it down to the menopause. With each sign I found a reasonable explanation. Then, by the time I reached 48, I realised how I was adapting to how I was ill I was feeling. I wasn’t going out much as I always felt tired and I just didn’t have the energy, I had become very limited with what I could eat, I always had a cold and I was vomiting more. So I went to my new GP practice to get some solution or diagnosis. And that’s another post on this blog! It was a difficult journey finally getting a diagnosis.
Writing this I notice how Crohn’s Disease has impacted on every area of my life for so long. Not only physically but emotionally and psychologically too.
Physically affected with the fatigue, unpredictability of needing the toilet, the stomach pain and vomiting.
Psychologically and emotionally affected when I’m feeling confused, angry, frustrated, sad, embarrassed, and at times, ashamed and depressed. I was labelled lazy by family, as the fatigue has been overwhelming at times, and that left me feeling confused, not good enough and bad. Sad because friends have got fed up with me not going out, or thought I was making up excuses not to meet them. And I couldn’t explain why I was so tired, because I didn’t know. And there’s a real sense that the vague symptoms I’ve often presented with to the GP’s and consultants over the years, may have caused a misdiagnosis of depression and a belief by most that I’m a hypochondriac. And that’s annoying!
But I’m a therapist, so I reach for what I’ve learnt about myself, and I’ll cope. Not only will I cope but I’ll meet this new challenge and learn as much as I can about it and find out how to help myself, and I hope it helps you too. By researching and learning, I feel a sense of control and power when I’ve felt out of control and powerless. I hope you can feel like that too.