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How was I diagnosed ? .
It would have been around 1995 when I first realised something was wrong. I was "spotting" blood from my backside for some time, but I chose to ignore it, believing it would simply go away. Silly mistake ! - the bleeding got worse, until eventually I saw the doctor about it. The doctor sent me to the nurse who said it was probably caused by a poor diet, and told me not to worry about it.
The bleeding continued, but in a new development, I realised that my bowels were opening more and more frequently, and producing looser and looser stools. I was also starting to be in a fair bit of pain. This time, I insisted I saw the doctor - he put all this down to daily stress levels, and said it was normal behaviour.
A few weeks later I felt really rough - I was vomiting really badly every 10 minutes, and I was constantly on the toilet! Then the sweating started. One minute I would be sweating like it was an Olympic sport, the next shivering and shaking like there was no tomorrow. I could not eat anything - nothing had any taste anyway, and anything I did manage to eat came back out within minutes.
I could not even stand up in the shower - I just had no strength.
After a week of this, I had to ask the doctor for a house visit. This time, a different one called. She took one look and said I had to be admitted to hospital immediately.
With my love of hospitals, I managed to talk her out of that - so she agreed to prescribe me Fortisip and to see how I progressed with that. I accepted the fact that if I could not keep them down, I would have to be admitted to hospital.
The doctor also prescribed me Codeine for the pain (and as it also helps stop diarrhoea, it was a very welcome addition!). It may sound corny, but I really do believe that the Fortisip drinks saved me. The next day, I felt so much better, and a month later, I was able to return to work.
I was still bleeding though, so was eventually referred to the local hospital for tests. These tests took the form of a very painful Colonoscopy (but without any form of anaesthesia at all).
The entire process was very painful. I remember laying there saying I would never have that done again!. At one point, the consultant cut away a few Polyps away, but did not explain this beforehand - he just went ahead, announcing "I am removing some". Although it did not hurt, it would have been nice to have received an explanation first so I knew what to expect.
The diagnosis eventually came back as Crohn's - and to help, I was prescribed a course of Prednisolone (steroids), Calcium Tablets, Amoxicillin and Pentasa to help the inflammation. I was told to continue taking the codeine for the pain.
The combination of pills actually helped, and although I was still bleeding, my stools at least had bulk.
A little while later, I fell off a step ladder painting the ceiling at home and managed to crack a rib. The doctor prescribed rest and some anti-inflammatories. Unfortunately, because I was already on different ones, the new ones counteracted against the originals, and so my Crohn's returned with a vengeance.
I had to return to the hospital after 6 months for a check up. I found myself remembering what the consultant did last time, so I told them that I was feeling fine just so he found not complete another painful examination!.
This carried on for a few years, but all the time, I was getting worse. I still put up with it, convincing myself that this was normal.
I moved to a different county a couple of years later. This was a very stressful time for me so my Crohn's literally flared up. I did put up with it for a while longer, and continued with the drugs already prescribed, but after a while,I saw my new doctor, and asked her to refer me to the consultant at the hospital.
During this time, the number of "accidents" I was having increased - and was now getting to the stage where you dare not leave the house for fear of another.
I had an appointment some time later - the consultant could not have been more patient with me - she fully explained what was going to happen, and that although I did not want it, another Colonoscopy would have to take place. She tried a quick "finger" examination that day, but that was too painful to continue. She also took me off the Codeine saying I was not to take it any longer.
At the same time, I had developed some Anal Fissures that had to be sorted first, so I was given some cream to apply. After a day or two, it became apparent that I was either allergic to the cream, or I was overdosing on it, as every time I applied it, I literally fainted. As it had to be applied three times a day, I had to stop taking it, and put up with the pain instead.
To come off the Codeine, I had to go "cold turkey" which was not nice. Codeine is a highly addictive drug. As I had been on it every single day for 7 years or more, I had several very restless nights. I mentioned earlier that codeine helped stop diarrhoea, now that I was off it, the number of "accidents" was increasing. Thanks to these, the doctor prescribed me Loperamide which worked very well !
An appointment was made for me to have a Colonoscopy under sedation. In due course I received some "Fleet Phospo-Soda" through the post. This produces very strong bowel movements, very quickly, and tastes horrible! The bowels need to be completely empty for the examination, and this stuff makes sure it is! This was taken the day before the test - so I was on a "nil by mouth" from the time I took it to after the examination.
The next day saw me at the hospital where the obligatory blood test and questions were taken - a Cannula was also inserted ready for the sedation.
Again, the consultant explained what would happen, and that they should let me know the outcome of the test that morning.
To say I was nervous was an understatement, but I honestly had no need to be, The wheeled me into theatre, and the last thing I remember is them injecting the drugs into my arm.
I vaguely remember being conscience at one point and looking at a monitor where my colon was on display, but this was for such a short period, so I cannot guarantee that this took part for real, or was all in my mind.
The next thing I remember was sitting up in bed with a cup of tea and a sandwich - I still have no recollection of actually asking for one, or even sitting up!
The consultant told me that she had taken several samples out, and that I may be sore for a while because of it. She then increased my steroid dosage and said that a further appointment would be necessary as a follow up.
To be honest, most of that day has been forgotten because of the drugs I was given - the day seems a haze even now, and I still cannot recall the complete day.
The next day, (September 2007), I flew to Cyprus for a much needed holiday. Two days into it, I could not walk nor sit without great discomfort - honestly, a Colonoscopy without sedation would not have hurt so much! A quick look at my bum showed that I had a lump appear the size of a golf ball - lovely!.
In the end, I went to a private hospital in Larnaka to ask for help. I was seen immediately (NHS please take note!), and a quick and very painful finger up the bum later, I was told that I had developed a haemorrhoid (which could have been the result of the Colonoscopy). So, one prescription, and 70 Cypriot pounds later, I came away with some antibiotics, and some haemorrhoid cream.
Needless to say that the holiday was ruined for me after that - I tried to put up with it for the sake that of the others that I went with, but even walking down the road was too much.
I remember driving to a bar showing a football match involving my local team (Portsmouth) and really suffering badly just trying to sit still.
When we came back to the UK, I went to see the doctor to confirm that the medication I was given in Cyprus was really going to help - out comes the fingered glove again, and a few tears later she confirmed I would not need the antibiotics but the cream should be ok. However, she did say I looked a little anaemic and that I had to have a blood test immediately. This I did, and the next day she called me at home and said I must go to the local hospital for a Blood Transfusion.
It turns out that a normal man has a blood haemoglobin level of between 13.5 and 17.5 - mine was 4!, so after a 4 day spell in hospital and several pints of blood later, I was allowed back home.
Whilst at the hospital, they thought up some wonderful additional tests for me to have to see if they could find a cause of my bleeding, so they decided upon the "both ends at once" method. I already had a colonoscopy, so they wanted a Gastroscopy and also a Barium Meal X-Ray.
The Barium Meal was done first, and meant that I could have nothing to eat or drink for a day before the test. A tube was placed up my nose, and down into my stomach. They then poured the barium down this tube into me. Once done, they plugged the table I was laying on into the mains - this resembled a roller coaster - whilst I was being thrown everywhere, the constantly x-rayed me.
To be truthful, the only unpleasant thing about this procedure was the tube being inserted, and withdrawn - on both occasions, I felt like I was going to be sick whilst choking. Having said that, having to expel the barium was not nice either.
The results were fine.
The Gastroscopy was again carried out under sedation, and I can honestly say it did not hurt, or give me any cause for concern whatsoever. I cannot remember anything at all about it though - the consultant explained to me later that the tests again were clear.
Back home again, the number of accidents increased to a very high number - the consultant now said that the only real option left was to have an operation, especially as the medication I was taking was clearly not working. Thanks to the damage to my insides, I would have to have a total Ileostomy. This was later updated to include a Panprocolectomy. As this is a major operation, it took some consideration