Amanda Kemp

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Well I been have asked to document my ordeal over the past 2 years – apparently it’s supposed to be good for healing and to help cope with the grieving process. I dunno just think it’s a way for people to stop thinking I am going crack up any moment!!

My journey, all be it an absolute disastrous one with Ulcerative Colitis, (UC) has been short compared to others that I have spoken to and read about. But none the less it has been really shitty (pardon the pun).

Well…. Once Upon a time…..  It all started when I was pregnant with my last child (he’s now 20 months old). My pregnancy began like my others chronic morning sickness that seemed to last all day and all night for the first fourteen weeks and then at the fourteen week mark whoosh it all disappears! The only difference this time my morning sickness was replaced with chronic diahorea, excessive blood loss and mucous. My blood loss wasn’t deemed too bad until the results of the routine blood tests in the 3rd trimester showed that my haemoglobin was dangerously low – this then rendered me in hospital for a blood transfusion. It was thought that I simply had a bacterial infection in my gut and was put on probiotics. This of course didn’t work. SO I continued on pooing blood and diahorea.

After the birth of my baby my UC settled down but only for about two weeks!!! Then it was back with a vengeance! Bear in mind that at this stage I still hadn’t been diagnosed with UC so I was literally living a life of a 95 elderly woman who really should not have stepped more than a meter away from any toilet. I had lost all control of my bowels and was still experiencing every classic symptom of UC. If I needed to go I had less than 10 seconds to get to a toilet before I soiled myself. It was not a pleasant existence especially with two children under 2 years.  I lost count of the number of times I crapped myself in the car, at the shops etc. I became a walking GPS for every single public toilet within a 10km radius of my house. Going anywhere I wasn’t familiar with was a frightening experience. Not only did I carry a nappy bag for my children but I also had one for me.

I was finally diagnosed with UC in November 2008 – Melbourne Cup Day to be exact!! Thanks to a good friend of mine she was able to get me in to see her husband who happened to be a colorectal surgeon. I explained all of my symptoms and the mess and he straight out said I think its Ulcerative Colitis but you need to have a Colonoscopy. That was a Friday and the very next Tuesday he had booked me in for a Colonoscopy and a referral to a Gastroenterologist. I guess it’s not what you know but who you know!

The day of the colonoscopy I was excited as it meant that I would finally have an answer to my problem. I was a little worried as I have a family history of bowel cancer – so that dreaded thought had crossed my mind on numerous occasions. The results were in and it was Ulcerative Colitis. I didn’t really know much about it at this stage it isn’t exactly high on the health topics you talk about with family and friends! Who wants to know about what’s happening in your rear end!!

With the diagnosis in I was put on Sulphasalazine to relieve the symptoms and hopefully send the UC back into ‘remission’. Within 3 weeks of taking the drug I was hospitalised with an allergic reaction to Sulphar. I didn’t know this at the time! I had spent approx 4 days in bed with flu like systems and a fever over 39c the majority of the time. The only thing that really was a little weird was the rash that covered my body. I started thinking that I had Meningococcal but a trip to the doctor confirmed it wasn’t that it was a virus of some sort. It wasn’t until my routine appointment with my GI that it became apparent something was really wrong! I staggered into his office with another fever and sporting the latest in fashion – head to toe skin rash! He took one look at me and phoned the emergency department at the local hospital to organise for me to go straight thru – he explained I either had blood poisoning or an allergic reaction. I won’t go thru the rig moral of trying to get into the emergency dept to be seen by a Doctor nor the fact that a student doctor tried to send me home (but I argued and got to stay). I ended up in hospital for 4 days on drips with a blood transfusion plus an iron transfusion – lucky I argued really!! I was then put on Mesasalazine and Prednisolone (Steroid). Unfortunately the rash hung around and it was found I was allergic to Mesasalazine as well! Luckily we caught the reaction in time!

The Prednisolone was not the drug of choice – it made me grumpy, irritable and want to eat everything in sight. Nothing was safe! None of the drugs including the first two seemed to bring the disease under control. I still shat myself, I still had blood and diarrhoea and mucous with the occasional pain. Just after Christmas I was put on Imuran – a very nasty drug that knocks out your immune system and as this disease seems to be an autoimmune problem it is supposed to be very effective. Unfortunately it also makes you more prone to getting every illness going around. This caused me to have a viral infection constantly. Whilst taking the medication you were also subjected to blood tests every 2 weeks to check the function of major organs (ie liver) as well as full blood count. I soon became a pin cushion! With all of this the drugs still didn’t have that much of an effect. Unfortunately I couldn’t be put on high doses of either Imuran or Prednisolone as my body simply couldn’t metabolise the drugs meaning it couldn’t get rid of it and direct the drugs to where my body needed it the most MY BOWEL!!! I was also getting really tired and anxious about having no immune system. With all of my concerns and the fact that the drugs just didn’t seem to work too well the surgery option was discussed.

After seeing a Colorectal Surgeon and discussing the options and the outcomes of surgery it was deemed that this was the best path for me. My surgery was promptly scheduled for 15 July 2009.

My family became hysterical when they found out the decision I had made. My grandmother cried on the phone and then hung up on me. Mum went silent and tried to be strong. Everyone knew that this is where I would end up but no one including myself thought that we would get there that quickly!! But the disease was just too aggressive and my body couldn’t cope. I handle the idea and the fact that this was the journey quite well. I think I had already decided in my head that if the meds didn’t work this is what I had to do.

I quickly gathered every piece of information I could find on a total colectomy and Ileo anal-astomosis.  I found some great websites with stories from people who had had the op and had similar rollercoaster rides as mine which was really helpful. My surgery date came around pretty quickly – this first one entailed the removal of my entire large intestine (bowel) and the making of an ileostomy. This would mean I could no longer use my rear end to go for a poo and that it would come directly out of my stomach straight into an appliance bag. I can tell you know the whole thing is not very glamorous and I am certain that I really would win Australia’s Got Talent! I mean the sheer ability of being able to poo out of your stomach and still have absolutely no control over it is a talent! But this meant that I was cured from Ulcerative Colitis in my Bowel I still had it in my rectum. They say that you go through a grieving process when you lose an organ even one that cause more harm than good, and I guess they are right. You do feel kind of upset about the entire process – it is a lot to come to grips with for yourself let alone those close to you especially partners. You, your body and mind do go through a huge transformation. Then at the end of the first surgery you wake up with a largish plastic bag attached to your stomach and this thing sticking out of your tummy that resembles something out of ‘Alien’. This thing that has now been attached to your stomach is your stoma and is actually a piece of your intestine hanging out! All surgically in place of course!! The strange thing about is that there are no nerve endings in it so you can’t really feel it and you have no control over its actions. It is probably harder coming to terms with this new appendage and the bag than anything else. To help me I ended up naming my stoma “Sid” or “Sid Vicious” on bad days! This enabled me to give it an identity. If it was noisy I excused Sid and my 3 year old son was able to ask me questions about Sid and treat ‘him’ as just an extra part of mummy.

My Stomal Nurse quickly became my best friend without her help and guidance I don’t believe I would have gotten through those first few weeks of getting used to bag changes and understanding how my body was now functioning.

Over the next couple of months I made good progress I was getting stronger and healthier and slowly recovering from the damage that Ulcerative Colitis had done to my health. I had a few minor setbacks with infections around the stoma – one developed into Pyroderma Gangrenosome which is a flesh eating virus. But with the help of wonder woman (my stomal nurse) we quickly got it under control and my infection healed well.

I was fast approaching the second surgery which was booked for 2 December. I was looking forward to getting the next step over and done with. This second one was another major surgery where my rectum was removed, a J-Pouch made (my new pretend bowel), connect the pouch to the anus and a new stoma was made out of the upper part of my small intestine rather than the end. The day came for my surgery – my entire family was struck down with gastro except for me – I was lucky enough to escape getting sick – wow something finally went my way! The surgery went well but it wasn’t until 3 days later I started to get internal bleeding. I was then rushed back into surgery to fix the bleeding around the J-Pouch. Then 4 days after this I had another issue with internal bleeding – it was a little more serious this time. I ended up requiring 9 units of blood to resuscitate me and was kept in ICU for 2 days until I came of the respiratator. I had apparently come very close to checking out of this world. As you can imagine this through in a whole series of emotional issues to sort through. All in all during this stage I was kept in hospital for 3 weeks and released just days before Christmas. I was incredibly weak and had lost nearly 10 kilos from the ordeal but I was on the road to recovery. Over the next two months I became stronger and healthier.

I am now waiting for my third and final surgery – where Sid and I no longer get to see each other every day! My stoma gets reversed – basically it gets put back into my stomach, I lose my bag and become relatively ‘normal’ again! This will also mean I gain control of the urge to go to the toilet – something I haven’t been able to control for nearly two years.  Despite the setbacks during my surgeries I would not have changed a thing – the reason why I took this journey was to get my quality of life back. When you are dealing with severe Ulcerative Colitis that doesn’t respond to drugs and completely makes you incontinent through the rear end it is not a life I would wish on my worst enemy.

Trouble has struck in the form of gastro. The last weekend in March kept me bed ridden with diarhorrea and vomiting. It started Friday but things got progressively worse Sunday morning when my stoma stopped working. By the evening I had some stomach pain – the pain intensified and I was rushed to hospital in the middle of the night. An x-ray and CT scans showed I had several adhesions and obstructions as well as a twisted stoma – which had closed completely. This required emergency surgery to remove all adhesions, untwist the stoma and if possible reverse the stoma.  This would be my 5th operation through this ordeal of Ulcerative Colitis.

The operation went well and I was now sort of ‘normal’ again – meaning I could now use my rear end to actually go to the toilet! My recovery was short lived and I developed a mass of fluid around the j-pouch this turned out to be a very severe bacterial infection. The only way to remove the fluid mass was to have another operation in which everything was flushed out. This meant I would be open again for the 6th time.

After 3 weeks in hospital I was finally released and am now on the road to recovery. I have to be extremely careful as I can get obstructions and adhesions but hopefully I will be ok.

Timeline

March 2008 – Developed Ulcerative Colitis during pregnancy – was not diagnosed at this stage

August 2008 – Blood transfusion

Beginning November 2008 – Colonoscopy Diagnosed with Ulcerative Colitis

29 November 2008 – Developed allergic reaction to medication – hospitalised given blood and iron transfusions

December 08 – July 09 – Medication changed

15 July 09 – Operation to remove bowel and create end ileostomy made for stoma bag

2 December 09 – Operation to remove rectum, create J-Pouch and connect to anus, create loop ileostomy for stoma bag

5 December 09 – Emergency operation to correct internal bleeding around J-Pouch

9 December 09 – Emergency operation to correct more internal bleeding – nearly died on the operating table and ended up in Intensive Care for a couple of days

26 March 10 – Developed gastro

29 March 10 – Taken to emergency with severe abdominal pain – X-ray and CT Scan found several adhesions and obstructions as well as a twisted stoma – which had closed completely

31 March 10 – Operation to remove stoma, adhesions and obstructions

9 April 10 – Operation to remove fluid build up causing infection around J-Pouch

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