Just thought I'd write a positive little post about my life since being diagnosed with CD.
I was 21 when I was diagnosed. At the time it felt fairly devastating. I knew very little about Inflammatory Bowel Disease. It was the one thing the whole family was hoping it wasn't. I think it's fair to say that to begin with I got a little depressed about it. I read the leaflets supplied by the excellent charity NACC. (Web address www.nacc.org.uk for anybody who hasn't come across it) To begin with all I saw was negatives. A lot of websites and forums used phrases like "quality of life". This immediately conjurred up images in my head of people laid out in hospital beds with little hope.
One night, as I lay in bed trying to get to sleep, a change occurred in my attitude. I can't tell you why, or how it happened, it just did. I made the decision that I was going to stop feeling sorry for myself and get on with it. A very wise friend of mine said to me when I told her that I'd been diagnosed with CD: "Remember, you control it. It doesn't control you." She hit the nail on the head.
Now one little caviat I will give is that I suffer with mild to moderate crohn's. I know many people out there have had and are having it far worse. But there is hope. What I have found both with myself, and hearing other peoples stories is that this illness can definately make you more determined. It is a condition that has a number of different forms of treatment. People go in and out of remission, and with a bit of luck you can go into remission for very extended periods of time, and the disease appears to burn itself out.
In the time I have known that I have CD, I have lead a very normal life. I have got married, I have two wonderful little girls that are full of life and mischief. I have carved a sucessful career as an analytical scientist ( which I have recently given up in favour of working in a school - but that's another story - you can see my other blog "the strange world of science and education" for further details!). I have many interests and hobbies from knitting, to surfing. The only thing I can think of that I have had to give up due to this disease is donating blood! Which by the way I was very upset about at the time as I felt that I was just the type of person having an illness such as IBD, who would some day be in need of a blood transfusion. The least I could do is donate some when I was well!
I guess what I'm trying to say, is exactly what my friend told me 9 years ago: "You control it. It doesn't control you." If you always remember that, you can't go too far wrong. Keep happy :-)
Wednesday, 30 January 2013
Thursday, 24 January 2013
In active flare up
My first few posts have been about past history. Just thought I'd write a little about the present day.
I was put declared as being in remission by my consultant at Addenbrookes hospital, Cambridge about 18 months ago (yey!)
About 5 months ago I moved from Cambridgeshire back down to my home County of Cornwall. I am currently living with my Parents in the family home - along with my husband and two young girls (see my other blog "diary of a boomerang kid" for more details).
Coming on for 2 months ago I started to experience extreme bloating and very uncomfortable pains in my upper abdomen - like sever indigestion. My Dad also experienced the same thing, and it seemed we had both picked up a stomach bug. The pains in the abdomen, then moved on to frequent and urgent diarrhoea. I immediately started to worry that I may be experiencing a flare up, but was comforted by the fact that my Dad had the same symptoms and with luck we would both get over it. Well, my Dad took a full week to recover, and I had actually got to the point of telling him he should go and see his Doctor as a week was too long for a simple bug. The day after this advice, he was better. For me however, it has been a little different. My symptoms are still there. If I stop eating - or at least eat nothing but soup for 24 hours, then the pain and diarrheoa disappear. As soon as I begin eating a balanced diet, then severe pain in my upper abdomen and a distended, uncomfortable gut, ow I do, and my Doctor knows I do, and yet I am not under a consultant. I know that when I eventually see the doctor, he will then have to write a referral letter. It could easily be another month before I finally get to see a consultant.
I daren't eat anything but white stuff, as I do not want to exacerbate the flare. I should count myself lucky really as I am able to manage the condition at the moment, but I am getting rather bored of eating plain, uninteresting food! Well, I will keep you posted on my current flare, and update if anything changes, or with what the consutant says - if I ever get one!
I was put declared as being in remission by my consultant at Addenbrookes hospital, Cambridge about 18 months ago (yey!)
About 5 months ago I moved from Cambridgeshire back down to my home County of Cornwall. I am currently living with my Parents in the family home - along with my husband and two young girls (see my other blog "diary of a boomerang kid" for more details).
Coming on for 2 months ago I started to experience extreme bloating and very uncomfortable pains in my upper abdomen - like sever indigestion. My Dad also experienced the same thing, and it seemed we had both picked up a stomach bug. The pains in the abdomen, then moved on to frequent and urgent diarrhoea. I immediately started to worry that I may be experiencing a flare up, but was comforted by the fact that my Dad had the same symptoms and with luck we would both get over it. Well, my Dad took a full week to recover, and I had actually got to the point of telling him he should go and see his Doctor as a week was too long for a simple bug. The day after this advice, he was better. For me however, it has been a little different. My symptoms are still there. If I stop eating - or at least eat nothing but soup for 24 hours, then the pain and diarrheoa disappear. As soon as I begin eating a balanced diet, then severe pain in my upper abdomen and a distended, uncomfortable gut, ow I do, and my Doctor knows I do, and yet I am not under a consultant. I know that when I eventually see the doctor, he will then have to write a referral letter. It could easily be another month before I finally get to see a consultant.
I daren't eat anything but white stuff, as I do not want to exacerbate the flare. I should count myself lucky really as I am able to manage the condition at the moment, but I am getting rather bored of eating plain, uninteresting food! Well, I will keep you posted on my current flare, and update if anything changes, or with what the consutant says - if I ever get one!
Wednesday, 23 January 2013
The embarassing problem with flatulence
Everybody passes wind. It is a natural bodily function, and anybody who says they don't do it is lying. Some people may not do it in public, everybody does it in their sleep, and some do it more than others, but we all do it!
So why then, is it so embarassing when it happens? The truth of the matter is that generally it smells. But here's the thing, some smell worse than others don't they? It is not simply the production of methane, produced as food breaks down in the gut. Along with it there are other particles with a far more repulsive smell.
I find that when I am in an active flare up, I could definately win an olympic gold for farting! I have a number of little anecdotes which may lighten the mood a little for those of us that find the subject of Inflammatory Bowel Disease nothing but doom and gloom.
Often I do my best not to release the obnoxious fumes which constantly build up in my gut when anybody else is around. More often than not, I find it happens all on it's own!
Sometimes I have to be content in managing to get to a deserted corridor before allowing the cloud of stink.
So why then, is it so embarassing when it happens? The truth of the matter is that generally it smells. But here's the thing, some smell worse than others don't they? It is not simply the production of methane, produced as food breaks down in the gut. Along with it there are other particles with a far more repulsive smell.
I find that when I am in an active flare up, I could definately win an olympic gold for farting! I have a number of little anecdotes which may lighten the mood a little for those of us that find the subject of Inflammatory Bowel Disease nothing but doom and gloom.
Often I do my best not to release the obnoxious fumes which constantly build up in my gut when anybody else is around. More often than not, I find it happens all on it's own!
Sometimes I have to be content in managing to get to a deserted corridor before allowing the cloud of stink.
Monday, 21 January 2013
My story
I always thought of myself as a pretty healthy kid. I hardly ever had time off from school, and the worse I ever got was a 48 hour tummy bug or a heavy cold.
My first symptoms of IBD appeared when I was in the last term of my final year at University. Loose bowels and tummy cramps. I put it down to a dodgy kebab at first. But when it didn't stop I went to see my GP. At first I was asked if I had been abroad recently and then told to give a sample. I did this, and when the sample came back clear, I was told to take peppermint.
When symptoms still didn't go it was suggested that I had irritable bowel disease - probably due to stress. I was prescribed colpermin.
More and more symptoms began to appear. Diarrhoea, painful stomach cramps, loss of weight, sleeplessness, partial incontinence. My mouth was often sore and full of ulcers, and there was a weird red lump on my leg that looked like an insect bite. Symptoms all too familiar to anybody with Crohns' Disease.
By this point I had become a regular at the Doctors'. I knew that something was very wrong, and at the surgery the help I received was rather mixed. I am still very greatful however, that out of the whole practice, one of the Doctors saw my symptoms for what they were. He suggested Inflammatory Bowel Disease and referred me to a Gastroenterologist.
By the time I started having investigation procedures I was incredibly thin. The first procedure - a Barium Enema - gave a diagnosis of Colonic Crohns' Disease. I still remember receiving the diagnosis from the consultant. It was the one the whole family had been dreading. We knew someone locally who had it, and she was in and out of surgery all the time.
Somehow a weight lifted from me as soon as I knew what it was. Finally I could start getting the right treatment, and do some reading to get some answers. Funnily enough the best answers I've had, I've only just received in the past two weeks - from a book:
My diagnosis came 10 years ago, and since then I have had bouts of active disease interspersed with fairly good periods of remission. The disease itself has been fairly manageable, but I seem to have been very good at getting the periferral symptoms of the disease.
It is for this reason that I have begun this blog. I count myself very lucky as so far my condition has been what I would class as mild, when I compare it to others that I read about on the net. However, when some, slightly rarer symptom of the condition pops up, it is frustrating that it takes so long to get the correct treatment. I figure if I post my experiences on the web - someone else out there, looking for answers may stumble across what has happened to me, and is able to go to their Doctor or Consultant in plenty of time to get the correct treatment.
My first symptoms of IBD appeared when I was in the last term of my final year at University. Loose bowels and tummy cramps. I put it down to a dodgy kebab at first. But when it didn't stop I went to see my GP. At first I was asked if I had been abroad recently and then told to give a sample. I did this, and when the sample came back clear, I was told to take peppermint.
When symptoms still didn't go it was suggested that I had irritable bowel disease - probably due to stress. I was prescribed colpermin.
More and more symptoms began to appear. Diarrhoea, painful stomach cramps, loss of weight, sleeplessness, partial incontinence. My mouth was often sore and full of ulcers, and there was a weird red lump on my leg that looked like an insect bite. Symptoms all too familiar to anybody with Crohns' Disease.
By this point I had become a regular at the Doctors'. I knew that something was very wrong, and at the surgery the help I received was rather mixed. I am still very greatful however, that out of the whole practice, one of the Doctors saw my symptoms for what they were. He suggested Inflammatory Bowel Disease and referred me to a Gastroenterologist.
By the time I started having investigation procedures I was incredibly thin. The first procedure - a Barium Enema - gave a diagnosis of Colonic Crohns' Disease. I still remember receiving the diagnosis from the consultant. It was the one the whole family had been dreading. We knew someone locally who had it, and she was in and out of surgery all the time.
Somehow a weight lifted from me as soon as I knew what it was. Finally I could start getting the right treatment, and do some reading to get some answers. Funnily enough the best answers I've had, I've only just received in the past two weeks - from a book:
My diagnosis came 10 years ago, and since then I have had bouts of active disease interspersed with fairly good periods of remission. The disease itself has been fairly manageable, but I seem to have been very good at getting the periferral symptoms of the disease.
It is for this reason that I have begun this blog. I count myself very lucky as so far my condition has been what I would class as mild, when I compare it to others that I read about on the net. However, when some, slightly rarer symptom of the condition pops up, it is frustrating that it takes so long to get the correct treatment. I figure if I post my experiences on the web - someone else out there, looking for answers may stumble across what has happened to me, and is able to go to their Doctor or Consultant in plenty of time to get the correct treatment.
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