The more recent problems have been the worst.
In October 2002 I started to get rectal bleeding every time I went to the toilet, and I was actually running to the toilet in order to bleed.
This went on while my GP dismissed it as Piles (!) but finally we were seen at Great Ormond Street, where they said that capillaries had grown through the bowel wall and every time anything passed down or the bowel was strained these capillaries were knocked or ruptured and bled into the bowel. They tried the sclerotherapy in the bowel as well. This didn't work and although it was tried a few times, I just kept bleeding.
We were told to monitor how much I bled and I had to get a nurse every time I went to the toilet. It was horrible. I had to leave the blood in the toilet and hope that nobody else wanted to use it. My nurse didn't make me feel much better as every time she saw it she said 'Oh my God! That's the most I've ever seen someone bleed!' !
All this time, I was in London with one of my parents (they took it in turns) whilst the other stayed in Sheffield with my sister.
I had five blood transfusions in December and every time they gave me about four units which should have taken my haemaglobin to between 10 and 12 and the next time they checked it, it was back to six, sometimes eight if I was lucky!
Eventually the surgeons came to a decision. I couldn't keep having blood transfusions so they decided to perform stoma surgery. I was given a loop colostomy.
This was a temporary stoma while they took out the bit of the bowel that was affected, however, other things got in the way of this. In late February 2003, I got excruciating back pain. I was due to go to the theatre with some friends that night but I couldn't sit down, stand up, lay down or anything. The only position I could manage was kneeling down on all fours, which my dad says is how my mum was most comfortable when in labour.
When I went to the hospital, I kept being asked if I'd been sick, I hadn't. They did ultra sound scans and said that it wasn't major, I didn't have a portal vein, the vein that drains the liver, but many people lived normal lives without it and sent me home with some painkillers, I rushed to the theatre that night (I was let out just in time) but threw up 15 minutes into the play. I was rushed straight back to hospital where all I did was throw up and I stayed until I was transported to GOS.
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When I got to GOS they said that the problem was that I had clots in the portal vein that drains the liver, (so my liver was enlarged,) the IVC (Main vein to the heart) and other less major veins in the abdomen, in addition, the SMV had slow flow but no clot. I didn't eat anything for weeks, the pressure that my liver was exerting on my stomach made me feel like I was already full up and felt sick without eating anything and the smell of food made me ill.
I was on a continuous Heparin drip to thin the blood and hopefully break down the clots but at one point both my parents were called down to London because the next 24 or so hours would be critical, they didn't know if the clot may move and block the blood flow to the heart. When I was well enough to take oral medicine, I was transferred to warfarin tablets to thin the blood. The clots in the IVC cleared up and the SMV blood flow was slightly better.
The clots in the portal vein never cleared up and my liver is still enlarged, they did a scan to see if they could do a liver bypass, which just meant taking a different vein and using it as a bypass around the clot but my veins weren't strong enough and wouldn't have held it. I am still on a regular dose of methadone because of the pain and hopefully when I've finised college, I can try and come off it. But in February 2004 I was doing a play in which I was the main role with no understudy and after the first performance, I started throwing up blood. I didn't go to hospital because I needed to get the play done.
I finished the play on the Friday night, went to hospital on Saturday and sure enough they kept me in. I was sent to King's College Hospital this time because they have a liver specialist who I was due to see anyway. This latest complication was varisees (like varicose veins) in the oesophagus. This was caused by the pressure in my abdomen due to the liver enlargement.
I had banding done where they shoot rubber bands over the veins and they die away. It's much better now but I have to have a monthly injection of octreotide to reduce the pressure in the abdomen and the blood pressure in the liver.
These problems stopped them reversing the colostomy and I was told the bowel was too affected to cut out, it wouldn't stop bleeding if they did, and so I had an end stoma done to make it more manageable.
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