The Colonoscopy >-<

 

It’s safe to say that I wasn’t looking forward to the colonoscopy!

Well the preparation instructions arrived, which included a package of laxatives, as if things weren’t bad enough! and instructions for a low residue diet.. zzzzzzzzz. How dull is that?!? two days of that and I was fed up. Being a very literal person, I just took the ideas from the leaflet, so to anyone out there that has to be on a low residue diet, top tip! do some research online and check with the hospital team what is allowed and what isn’t. I didn’t, and spent two days eating white bread, chicken, white rice and lots of water. By day two, I was so bored with it that I gave my dog what was left of the chicken and rice. Add to that the required laxative doses and my appointment wasn’t until 6pm, I felt pretty fed up. I tried to use Mindfulness to deal with my anxiety by trying to focus on what was directly in front of me and stay in the moment. Mindfulness is a great skill to cope with anxiety and stress and actually enjoy life in general, but it takes a lot of practice and I wasn’t able to fully engage in it. Instead I realise that I went into my default mode of denial and distraction! These are also good coping mechanisms for stress and anxiety and a skill I can use quite easily. 🙂

I arrived at the hospital at 4.50 as instructed. I was seen by a nurse who confirmed my appointment and personal details and I was shown to my room. Yep! My room! What a new world this private care is. It all seemed a bit much for a quick 30 minute proceedure…but I wasn’t complaining and went with it. A menu was set out on the cabinet next to the bed, I thought that was a bit cruel! But apparently that was for after the procedure but all I wanted was a cup of tea and to get back home. I was told that the colonoscopy would probably be about 7pm not 6pm and that the consultant would come to see me before going down. Left alone in the room I felt a bit lost, so I sat on the bed, watched pointless and began to relax, periodically drooling through the menu!

The consultant arrived and seemed surprised how relaxed (and perhaps cheerful?) I was. He went through the procedure. I had done a little research on the Internet about Crohn’s Disease by this time and read about colitis too. That sounded a much better option! Deciding colitis was the lesser of two evils I asked hopefully “Do you think it could be colitis?”
“No!” came the confused, but very firm reply. “I’m looking for Crohn’s Disease.” Damn it!! and then almost dismissively he said “and anaesthetic…”
“Yep!” I quickly confirmed.
He looked surprised “Are you having anaesthetic?”
“Yep, everything! Give me everything you’ve got!”
“Oh ok, well I wont give you too much, so that we can still have a conversation during the procedure.” What?!? A conversation during a colonoscopy?!? I dont know what sort of conversation he thought we were going to have, but I had a strong sense he was being rather optimistic!

Once in the gown I began to get very sleepy and started yawning. As I was wheeled into the procedure room, I quickly scanned my surroundings and felt a little overwhelmed by all that equipment. My nerves kicked in and I wasn’t sure whether I felt reassured or creeped out when the anaesthetist stared at my hands and said with glee “Oooh look at those veins!” 20mgs of pethidine later…oh dear..pethidine. That’s not good…I had that during labour once, and it sent me as high as a kite!! The conversation the consultant was hoping for was fast becoming a fantasy….

I can remember watching the screen and the nurse calling my name, asking me if I could hear them. I apologised, looked at them and with a glazed look turned back to the screen. And that’s all I remember until I reached the recovery room. The consultant came to speak to me and confirmed it was Crohn’s Disease and that he would be referring me for an MRI. What seemed like an age, it probably wasn’t!, I was taken back to my room. In my mind I’m good to go, but I was put into the bed and the side bars on the bed were raised. That confused me a bit! I was feeling ok and itching to get home, and no-one actually said I needed to stay and rest, so I sat and twiddled my thumbs becoming increasigly bored and agitated. I decided it was time to get dressed, and I climbed over the raised railings out of the bed and donned my clothes. I went and peeped outside the door. The staff saw me straight away, “What are you doing out of bed?”
“I’m ready to go home”
“You can’t go yet. I put the bars up to stop you getting out.” That’s why they were up!
I was sent back to my room with a cup of tea and some biscuits and went home when my lift arrived. I didn’t experience any side effects, other than feeling pretty good! 🙂 I’m not sure if it was the relief that it was all over or the pethidine!

Crohns Disease…My rocky road to diagnosis

 

It took over 20yrs, until my late forties, to finally get a diagnosis of Crohn’s Disease. I’ve probably had it for all of my life. I’m not blaming the medical system for all of that. I think there are many reasons people are diagnosed late or correctly and that signs are missed. Firstly, it appears difficult to diagnose until symptoms become chronic, and this can be when you have regular diarrhea, bleeding and/or, as in my case, unexplained vomiting, difficulties digesting fibre and chronic fatigue.

Secondly, there is a lack of consistency when seeing GP’s at the surgery. I believe that if I saw the same GP, it would give them an opportunity to get to know me, to become familiar with my symptoms over a period of time and be able to recognise the signs and symptoms of Crohn’s Disease much earlier. A bit like a jigsaw puzzle, putting the pieces together and building a picture until the final piece is put in place and then voil la! Diagnosis! Often we can see various GP’s and not all of them have time to read their patients medical history before appointments, a reality of the tremendous pressure that the medical profession are under. Within all of this, GP’s have different ideas, theories and, to be honest, different levels of interest in finding a diagnosis and this can result in long term treatment of symptoms without getting to the cause. So within these circumstances its going to be a struggle to pinpont Crohns Disease.

I played my own part in the delay and I take responsibility for my intermittent visits to the GP’s. At one point in my thirties, after symptoms became increasingly disruptive, I had an endoscopy and told it was probably IBS. I was offered a further test, which would involve swallowing a dye and having an X-ray. I was reluctant as I was finding the whole process very stressful and agreed an IBS diagnosis. From that point I looked at managing my physical and mental health to improve my well being. With hindsight this was a positive change and, although I was treating the symptoms rather than cause, these changes were not wasted and gave me a new work life balance and healthier outlook and lifestyle.

My symptoms became enduring and more debilitating as I ambled through my forties. I felt as though I always had a cold, I felt tired, sometimes this was severe, and I began vomiting after meals. I decided to try and get a diagnosis and some support with my diet. The first GP at a new surgery was very thorough and referred me for an allergy and breathing test. Both were clear, which now makes me understand why antihistamines didn’t help at those times. Even so, I was so conviced it was an allergy I thought the allergy test had been done wrong!

I returned to the GP surgery and saw a different GP, not through choice. She strangely seemed to want to diagnose me there and then and told me I needed a carb, a protein and fats each day and drew a diagram of how the digestive tract erodes as we age. I still don’t know to this day whether this GP thought that telling me that would be enough for me to go away and make the necessary changes to my diet to make a difference. There was no detail, no more more information offered. I said I’d need more help than that, and thought I needed a dietician to help me look at what’s happening and how I can manage my health with the issues I was facing. “You won’t get that on the NHS.” she told me and I explained “that’s why I’d like a referral for my health insurance.” This was received by a big sigh. After a difficult discussion, why it was difficult I have no idea! Other than I felt she was being unhelpful, obstructive and unnecessarily difficult , I still have no idea why she was reluctant to do it, but I persevered and finally a letter to a gastroenterologist was agreed.

An appointment was soon booked and I went for an initial consultation. How different the private system is. The consultant came and collected me and he asked what was happening. After relaying my history and current situation, that I was running out of food that I was able to eat without some issues, he asked what foods I couldn’t eat.
“It’s quicker to tell you what I can eat…cheese, fish, crackers, cheese, yogurt, only one yogurt though, chocolate, crisps. Have I mentioned I can eat cheese?”
“Can you eat jacket potatoes?”
“Yes, but not with baked beans. But I can have cheese.”
Then an examination followed. Well I don’t like to make a fuss and I think I have a high pain threshold, so as he examined me I didn’t react. Realising he needed to know where it hurt or was sensitive, I prodded myself and said ‘here’ and here’ moving my palm around my stomach and abdomen. Yes, it was a bit odd. Then it got weirder when he asked if he could push my side. Now I know I’m not as slim as I used to be, but I’m not that big! I wondered if he was expecting my stomach to go into a ripple or wave motion, so I agreed and he pushed my side and we both looked intently at my stomach. I have no idea what I was looking for and I didn’t ask what he was looking for either!
Then I moved back to the chair and he asked about my family history, I just mentioned in passing that Crohns was in the family. I recognised the look he gave me. It’s like he knew as soon as I said that.
He said that he wanted to do a colonoscopy. Well, call me old fashioned, but that part of my body is, and always has been, ‘Exit Only’. I looked at the consultant.
Trying to sell it to me he said ” It’s just a thin pipe, just like this” and lifted up his stethoscope and waved it around to show me. Nope, that wasn’t convincing me.
So he upped the offer…”we could offer some anesthetic….”
Yep! That will do it! “Sold!”
Ok, my theory being, I need to have it done, but I don’t want any pain. So with the deal struck, an appointment was arranged. And that’s when the fun really began! 🙂

CROHNS …. In the beginning

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.

On reflection….

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.