This is my story about my Crohns Disease - being diagnosed, living with it & my many operations. Because of the nature of the disease, some of the descriptions are quite frank - you have been warned !
It all started at the end of 1997, when I started having a very bad upset tummy with blood & pain - I didn't go to the doctors, as I thought it was just a bug or food poisoning. After a while, I started to be sick too & couldn't keep my food down, which led to a lot of weight loss.
Amazingly I carried on working through all this, but my work deteriorated & one day, whilst coming home from work, I felt really weak & faint & that was when I decided to go straight to the doctors. After being poked at, I was told I should have been examined much earlier & I was issued with a letter to take straight to Royal Free Hospital A & E (in London).
I had to wait ages to be seen by triage & it was found out that I had a very high temperature & they wanted to admit me straight away ! Their straight away turned out to be over eight hours (in a lot of pain) on a trolley in a grubby corridor, waiting for a bed to become free. I finally got a bed at about 2am. I guess its because it was a Friday night !
I was put into a side ward as it was thought that I might have a contagious disease ! It was nice to have a room of my own though, being in so much distress. I was given painkillers & sleeping pills to get me through the rest of the night & investigations started later that morning.
The first test was an examination of my back passage & then a colonoscopy, which is not nice at the best of times - luckily I was heavily sedated for that ! Lets just say one of the worst aspects of this was a procedure called 'Clean Prep' that clears all of your intestines out. You have to drink about two pints of the worst tasting liquid, which then makes you sit on the toilet for at least the next 3 hours (good job I had my own toilet, really !) During the colonoscopy, they took some samples to be examined & I was wheeled back to my room to recover.
The diagnosis came back as Crohns Disease, which I hadn't heard of before. My own description of it is thus: It is a breakdown in the immune system that causes ulcers anywhere from the mouth right down to the rectum & everything in between (large & small intestines). It turned out that the whole of my large intestine was affected, but I will talk about that more in 'My first operation'
I was pumped full of IV steroids & it seemed to settle down, so I was discharged after about a week of bed rest.
I began to steadily get worse again with more sickness, upset tummy & bleeding, so went back to the hospital where I was admitted straight away again, & had more horrid tests. I was put on more steroids, (which isn't the best thing for your body at those levels) & put on various other drugs. This time I did not respond to any of the drugs.
By this time I was nil by mouth & in a bad way - apparently, my intestines could have perforated at any time, which would lead to serious blood poisoning. I was told that I had to have an emergency major operation that would involve having an ileostomy fashioned. You may ask what on earth does that mean - well you are not alone ! Luckily my mum was with me, as I just couldn't take in what they were talking about since I was so ill.
The only way to describe an ileostomy in my own words is when they bring the small intestine out through a hole in your stomach. Your waste is then captured in a bag that is attached to your body via a flange. Sounds nasty & it is, believe me ! They do this procedure when your bowels need a rest or in my case, when my whole colon is removed. It can be temporary for most people, but in some cases (like mine) it is permanent.
Back to Top
I remember when it was, because the night before the op, all the nurses were crammed onto my bed watching the World Cup Final of 1998 ! I was the only person still awake that had rented a TV. At least it took my mind off the big op I faced in the morning ! The theatre staff were a bit peeved to say the least, as the night staff had not prepared me for theatre because of the World Cup !
As I hate waiting around to be wheeled away to the op theatre, I got myself in quite a state & was offered a pre med. (which are not given anymore due to waking up time after the op). I remember being pushed in my bed for what seemed miles & counting the strip lights on the way. I was put to sleep (not put down (yet) !!!) & the next thing I remember was being wrapped up in foil & having heated blankets heaped on top of me in recovery, because my poor body had gone into shock ! I was very sick too, to say the least !
The rest of the day was taken up by sleeping a lot, having observations done every hour & having loads of anti sickness & pethadine injections. I had at least 5 or 6 tubes inserted in various places too. It was explained to me that they had removed the whole of my large intestine (colon) as it was so badly ulcerated. I had also been given a temporary ileostomy (explained earlier) & a fistula too. (this is where the rectal stump is bought to the surface of the body in order not to be lost inside me, since the ileostomy was a temporary one).
It took a long time for me to recover from such a major operation, but there were very few complications, apart from pain control & the lack of it !
My mum was brilliant throughout, what with her pampering, love & food (which I wasn't allowed to have for over a week, until my stomach had started working again). In fact, all of my family were brilliant - it was great to see my Niece & Nephew so soon after the op.
I don't really remember that much, thanks to the pethadine - I found it rather scary at times, hearing voices that weren't there & seeing things that weren't there either (talk about paranoia). One time I was found wondering around the fire escape in my nightdress wheeling my drips about & smoking ! Very strange indeedy
It finally became time to start sitting up (which I didn't want to do, but had to) & I had one of those hanging bars above my bed to help me. It took me several attempts to muster up the courage, but I knew I had to, so with the help of my Mum & a few nurses, somehow I managed it & I wished I hadn't because of the pain & dizziness !
After a couple of days of sitting up & lying down, it then became time to get out of bed & I really really didn't want to. I had another shot of Pethadine & preceded very gingerly to swing my legs around & put them on the floor. I then stood up with the help of a few nurses & I clung onto my drip stand for dear life ! They wanted me to take a few steps, but I couldn't as my legs turned to jelly & I could feel myself falling. Luckily they caught me & put me back into bed sharpish. I then slept for hours.
After having Physiotherapy to help build up my strength & legs, I managed to get out of bed & take a few steps with the help of my drip & my Mum. I don't think I can ever walk as slow as I did then - it all seemed to be in slow motion. I turned & went back to my bed & again slept for hours.
Eventually, it became easier for me to get up & walk, and I had to start going to the toilet normally again. It was murder sometimes waiting for a nurse to come & help me to the toilet, but after a while I could manage that on my own too, which was a milestone in itself !
After a long while, I had to have my 40 stitches (metal staples) removed, which was not nice at all. I had to wait for the high dose of Pethadine to kick in, as the nurse had tried to take them out without any pain relief & my Mum let it be known that I needed the pain relief !
After the stitches were removed it was just a matter of getting used to caring for my newly formed stoma & then I could be discharged. I found it very difficult to even look at my stomach, let alone to care for my stoma, but with the help of the specially trained Stoma Nurse, I slowly began to regain confidence & learn how to clean my stoma & change the flange & bag.
Back to Top
After I was discharged from hospital (about 3 weeks after the op), my Mum & Step dad took me back to their house to recuperate. I was very tired most of the time & was in bed sleeping a lot. I had to have a District Nurse come & dress my scar, as I had caught the 'super bug' MRSA & it wasn't healing very well.
I wasn't very hungry (which was very unlike me when I was well !), but I had to force myself to eat my Mums special recipe chicken soup & then graduated onto eating very small portions of solid foods - I had to chew the food very well in order to not have any blockages.
Not long after I had started eating solids, I moved back to my flat & began to care for myself. The stoma nurse had told me all the things I needed to know, like what to expect, how to order my appliances, useful contact phone numbers & how to get in touch with her in an emergency.
I pottered about my flat trying to get back to normal & the District Nurse came everyday to change the dressing on my still not healed scar. Sometime after coming home, I returned back to work part time. I got tired very easily & didn't feel easy, as I was worried about what my stoma might do & what if the bag & flange came off, etc, etc.
About 5 months down the line, I thought I was coping fine until it transpired that the Crohns Disease had returned & affected my rectum. The Gastro team at the Royal Free Hospital thought it best for me to have another emergency operation !
Back to Top
I had to rush to the hospital the next day by a certain time in order to keep the bed reserved for me. Luckily I made it just in time & I went about settling in & unpacking all my stuff. I was introduced to my named nurse & then went to find the smoking room.
When I got back to my bed, I was put on nil by mouth & was told that I would have to take Clean Prep again to which I said, “I don't think so, as I have a stoma.” Luckily, I was spared the unpleasantness of that this time round !
The surgeon came to explain the operation & I wished he hadn't, as it didn't sound too good. This time I would have 2 surgeons operating on me at the same time - one on my stomach & the other on my rectum. (The surgeons said that they might shake hands in the middle while they were at it, which made me laugh).
Again, I remember being pushed a long way to the operating theatre & counting the strip lights on the way - I was trying to fight back my tears of worry & fear due to the complexity & duration of the operation !
About 4 hours later I woke up in recovery with loads of drains attached, again being smothered by heated blankets & foil & feeling very sick due to the shock.
I spent the rest of the day & night asleep, I think - I'm afraid I can't remember at all, probably due to the Morphine being pumped into me via an epidural attached into my back. At least I could not feel any pain, yet !
I had to have the epidural removed after about 3 days as it turned out that I had an allergic reaction to the morphine which made me really itchy, and the level of numbness kept rising dangerously high up to my neck. They had to resort back to giving me Pethadine injections & sleeping pills as the pain was so excruciating - I was soooo out of it for days, luckily.
I had to go through all the rigmarole of sitting up again & then walking, but I seriously think that because of my strong urge to have a cigarette, I somehow managed to get out of bed faster this time. It was quite strange having to sit on only one bottom cheek, but it felt a bit better that way.
The worst was yet to come & that was the removal of the staples again. This time there were 2 sets of them & a few normal ones that were used to close my fistula up that was no longer needed - thank goodness ! I don't know which felt worse to remove, but I vaguely remember my Mum taking over the removal of the tummy ones after more Pethadine.
I was wheeled out on my bed to a treatment room in order to have the bottom stitches removed & my Mum told me afterwards that the whole ward could hear me screaming out in pain & she was furious.
Once that ordeal was over with, I made quite a quick recovery & went back to my Mums' house again to recuperate. I remember my Step dad came to pick me up in their Saab & it had heated seats that he had already switched on for me - that felt like heaven !
Before I knew it (probably due to my Mums' chicken soup & pampering), I was safely back in my flat trying to get back to normal yet again.
This time the pain never seemed to go away, even though my scars had healed very well. I went back to see my specialists again & they carried out some tests, but couldn't find anything wrong.
I knew something wasn't right, so my Dad arranged for me to see another specialist privately (in order to be seen quickly). He sent me for even more tests & it turned out that I had to have yet another operation because the stoma needed to be refashioned for some reason that I never did understand !
We found out that because this specialist worked for the NHS at St Marks Hospital (part of Northwick Park Hospital in Harrow, London), I could go on their waiting list.
Back to Top
I had to wait for quite a while for a bed to become available, as this op was not urgent & was postponed 3 times !
By now I was an old pro when it came to tummy ops & this one went ahead with no complications apart from the lack of pain relief, yet again.
Back to Top