- Joined
- Aug 5, 2010
- Messages
- 3
Hello all!
My name is Emma. I'm 24 and I live in Syston, Leicester, UK. This is my story
In May 2009 (around that time at least), I started getting the symptoms of what I now know to be Crohn's disease. I had lost weight when I went to University - I went from 13st (182lbs) at my highest weight, down to 7.8st (110lbs), all between 2005 and 2007. I thought I was just doing really well at dieting! So maybe it all started back then, but it wasn't until May 2009 until I started having the 'hardcore' symptoms, such as the cramping after meals, discomfort going to the toilet, more weightloss, fatigue and anaemia... At the time, I thought the cramping was down to an intolerance to lactose and decided to just avoid dairy, and that all the cramps and discomfort would go away. Of course, that didn't happen.
November 2009 was the time everything kicked off - bought a house, went through risk of redundancy... stress started to add to my poor health and eventually it reached a peak where it all climaxed into a big mess. At this point, I was about 6.5st (91lbs) and very weak. I had a colonoscopy (which was very traumatic and, even with more of the sedation stuff that they usually give, was very painful and I cried the whole time.) They took about 20 biopsies and I was given a medication that for the life of me I can't remember the name of, but it wasn't helping. When I went back to get the results of my biopsies, the consultant's registrar took one look at me and decided to admit me there and then. So in February 2010, I was admitted to Leicester Royal Infirmary where I stayed for 10 days in the Digestive Diseases Ward 29. I was completely dehydrated and my HB levels had gone down to 6 (you're supposed to have a level of at least 10) so given five units of fluid, two units of blood, a diet plan of liquid feed to rest my bowel (this stuff called Modulen), Prednisolone and Azathioprine. I went home after improving... but it didn't last long.
Six weeks after starting the liquid feed, I was allowed real food again, and while I was very happy and very excited about having food again, it turned out to be rather unpleasant when the cramping came back. And even worse when my hip wouldn't straighten up. The gastroenterologist said I'd need my GP to refer me to a rheumatologist for the hip pain, but when I saw my GP, he was suspicious. He said, because of being on immunosuppressants, it might be something more than just a bad hip. He went back to my gastroenterologist and said that it was a GI issue and that I needed further investigation. Sure enough, I went back into hospital where I had various scans (I think at this point I had had every kind of scan there is!) and the MRI scan and ultrasound scans finally revealed a HUGE mess of stuff.
What had in fact happened was that my colon had perforated and waste and pus was collecting near my hip in the muscle, hence why I couldn't straighten it. It has also numbed the top of my thigh. It was called a Psoas Abscess. Once they found this, they said the only option was surgery; a temporary ileostomy, with a chance that I'd have a mucous fistula too. I went in for emergency surgery and had the damaged parts of my colon removed, resulting in the mucous fistula (called Colin) and an ileostomy (called Stan). And, of course, the abscess was drained.
The surgery went very well (five hours), though post-surgery the pain has been unbearable at times, and various fluids have escaped my body which have been very unpleasant. For some reason, they glued me together rather than stapled me... and a week after surgery, the glue dissolved and my abdomen burst, I had a very very big freak-out. Especially when you look down and see a big cut down the whole of your tummy (13cm long x 5cm wide x 3cm deep a month after surgery)!
I had to stay in hospital for a month until my wound (Wally the Wound) became manageable by the District Nurses. It was leaking a LOT with whatever stuff was in there. The nurses come daily and pack Wally with Aquacel AG and it's very absorbant, but it still requires daily dressing changes.
The first night I was home, my stoma bag leaked into my wound, and because it was silly o'clock in the morning, I had to clean it all out and redress it myself. That was scary, as Wally ain't the prettiest when you're tired and emotionally drained. Other than that, I've not had too many issues, only a couple of leaks.
There is still a while to go with the healing... it's been four months since my operation, and the District Nurses reckon it'll be a couple of months before Wally is healed, and I'm likely to be left with a nasty wide scar. But to be honest, I'm just looking forward to being able to focus on just Stan and Colin!
More recent news... I had a CT scan on Tuesday because I have a collection of pus next to Stan. The scan confirmed that it is a fistula but that it is 'superficial', in the sense that it's just under the surface of my skin and no deeper. Not only that, but the scan seemed to suggest that I have no diseased bowel at present. *dances*
I then went to see my surgical consultant on Wednesday to discuss the idea of a revision to Stan, and to ask about the (now confirmed) fistula next to Stan. He said that, because it's not been long since my first operation (less than 5 months), he is very reluctant to perform any surgery because everything inside is 'stuck together', and it's likely that he wouldn't be able to move enough free intestine to pull Stan out a little further. He also said that he thinks the risks of the surgery would outweigh the positives, so he pretty much refused to do anything about it at the moment, and certainly not before the end of the year, until Stan prolapses a little, which would suggest that everything is freeing up and he'd be able to move things.
The surgeon also suspects that the area with the broken skin next to Stan is very much looking like Pyoderma Gangrenosum, and he's prescribed me 30mg of Prednisolone for four weeks to begin with. He's also arranging appointments with my gastroenterologist and a different gastroenterologist who specialises in Crohn's Disease, so I can talk about the medication management of the nasty, nasty disease. I'm already on Azathioprine and it seems to be working so far, but I guess it depends how it develops in the future...
One thing I am pleased about is that I finally told him that I don't want a reversal and that I'd much rather live with an ileostomy. He seemed pretty surprised - I think that's because I'm a 24-year-old girl who still has some of her colon, her rectum and her anus (though to be honest, I won't lie - my anus is a Crohn'sy mess... just thought I'd throw that out there). I think he just assumed that I would want it reversed.
But nah, I like Stan. He's cute.
Long entry, woah. But helpfully that explains everything!
My name is Emma. I'm 24 and I live in Syston, Leicester, UK. This is my story
In May 2009 (around that time at least), I started getting the symptoms of what I now know to be Crohn's disease. I had lost weight when I went to University - I went from 13st (182lbs) at my highest weight, down to 7.8st (110lbs), all between 2005 and 2007. I thought I was just doing really well at dieting! So maybe it all started back then, but it wasn't until May 2009 until I started having the 'hardcore' symptoms, such as the cramping after meals, discomfort going to the toilet, more weightloss, fatigue and anaemia... At the time, I thought the cramping was down to an intolerance to lactose and decided to just avoid dairy, and that all the cramps and discomfort would go away. Of course, that didn't happen.
November 2009 was the time everything kicked off - bought a house, went through risk of redundancy... stress started to add to my poor health and eventually it reached a peak where it all climaxed into a big mess. At this point, I was about 6.5st (91lbs) and very weak. I had a colonoscopy (which was very traumatic and, even with more of the sedation stuff that they usually give, was very painful and I cried the whole time.) They took about 20 biopsies and I was given a medication that for the life of me I can't remember the name of, but it wasn't helping. When I went back to get the results of my biopsies, the consultant's registrar took one look at me and decided to admit me there and then. So in February 2010, I was admitted to Leicester Royal Infirmary where I stayed for 10 days in the Digestive Diseases Ward 29. I was completely dehydrated and my HB levels had gone down to 6 (you're supposed to have a level of at least 10) so given five units of fluid, two units of blood, a diet plan of liquid feed to rest my bowel (this stuff called Modulen), Prednisolone and Azathioprine. I went home after improving... but it didn't last long.
Six weeks after starting the liquid feed, I was allowed real food again, and while I was very happy and very excited about having food again, it turned out to be rather unpleasant when the cramping came back. And even worse when my hip wouldn't straighten up. The gastroenterologist said I'd need my GP to refer me to a rheumatologist for the hip pain, but when I saw my GP, he was suspicious. He said, because of being on immunosuppressants, it might be something more than just a bad hip. He went back to my gastroenterologist and said that it was a GI issue and that I needed further investigation. Sure enough, I went back into hospital where I had various scans (I think at this point I had had every kind of scan there is!) and the MRI scan and ultrasound scans finally revealed a HUGE mess of stuff.
What had in fact happened was that my colon had perforated and waste and pus was collecting near my hip in the muscle, hence why I couldn't straighten it. It has also numbed the top of my thigh. It was called a Psoas Abscess. Once they found this, they said the only option was surgery; a temporary ileostomy, with a chance that I'd have a mucous fistula too. I went in for emergency surgery and had the damaged parts of my colon removed, resulting in the mucous fistula (called Colin) and an ileostomy (called Stan). And, of course, the abscess was drained.
The surgery went very well (five hours), though post-surgery the pain has been unbearable at times, and various fluids have escaped my body which have been very unpleasant. For some reason, they glued me together rather than stapled me... and a week after surgery, the glue dissolved and my abdomen burst, I had a very very big freak-out. Especially when you look down and see a big cut down the whole of your tummy (13cm long x 5cm wide x 3cm deep a month after surgery)!
I had to stay in hospital for a month until my wound (Wally the Wound) became manageable by the District Nurses. It was leaking a LOT with whatever stuff was in there. The nurses come daily and pack Wally with Aquacel AG and it's very absorbant, but it still requires daily dressing changes.
The first night I was home, my stoma bag leaked into my wound, and because it was silly o'clock in the morning, I had to clean it all out and redress it myself. That was scary, as Wally ain't the prettiest when you're tired and emotionally drained. Other than that, I've not had too many issues, only a couple of leaks.
There is still a while to go with the healing... it's been four months since my operation, and the District Nurses reckon it'll be a couple of months before Wally is healed, and I'm likely to be left with a nasty wide scar. But to be honest, I'm just looking forward to being able to focus on just Stan and Colin!
More recent news... I had a CT scan on Tuesday because I have a collection of pus next to Stan. The scan confirmed that it is a fistula but that it is 'superficial', in the sense that it's just under the surface of my skin and no deeper. Not only that, but the scan seemed to suggest that I have no diseased bowel at present. *dances*
I then went to see my surgical consultant on Wednesday to discuss the idea of a revision to Stan, and to ask about the (now confirmed) fistula next to Stan. He said that, because it's not been long since my first operation (less than 5 months), he is very reluctant to perform any surgery because everything inside is 'stuck together', and it's likely that he wouldn't be able to move enough free intestine to pull Stan out a little further. He also said that he thinks the risks of the surgery would outweigh the positives, so he pretty much refused to do anything about it at the moment, and certainly not before the end of the year, until Stan prolapses a little, which would suggest that everything is freeing up and he'd be able to move things.
The surgeon also suspects that the area with the broken skin next to Stan is very much looking like Pyoderma Gangrenosum, and he's prescribed me 30mg of Prednisolone for four weeks to begin with. He's also arranging appointments with my gastroenterologist and a different gastroenterologist who specialises in Crohn's Disease, so I can talk about the medication management of the nasty, nasty disease. I'm already on Azathioprine and it seems to be working so far, but I guess it depends how it develops in the future...
One thing I am pleased about is that I finally told him that I don't want a reversal and that I'd much rather live with an ileostomy. He seemed pretty surprised - I think that's because I'm a 24-year-old girl who still has some of her colon, her rectum and her anus (though to be honest, I won't lie - my anus is a Crohn'sy mess... just thought I'd throw that out there). I think he just assumed that I would want it reversed.
But nah, I like Stan. He's cute.
Long entry, woah. But helpfully that explains everything!
