Hello everyone,
As the title of my post suggests, I am very glad I found this forum. I was diagnosed with Crohn's disease and entropathic arthritis in July of this year, following a bout of diarrohea that went on for four months. Prior to that, I hadn't felt right for about a year and had no energy, and things got worse and worse, to the point where I was doubling up in pain every morning just before work (I had a long journey in which didn't help, used to make it to my mainline station and then had to stop, rest and sort myself out before continuing my journey). My joint pain got so bad I had to use a disabled toilet at the station before continuing my journey and used to get shouted at, sworn at and harrassed by people who questioned me as to why I was using it as I "obviously didn't need to". Actually, I did as I was in so much pain and felt so ill it was really what I needed. Plus, I have a RADAR key for just that reason as recommended by my doctor due to my health problems...
It was only when I went to visit my parents that they remarked on how bad things had become - I was having to visit the toilet several times an hour, and was noticing blood in my stools. I had never had to deal with such a thing before and did everything I could to find help. I was diagnosed with IBS initially and the medication I was prescribed didn't help. I also had a house move, a bereavement and extreme stress at work to deal with which didn't help.
Health wise, things got to the point where I was so unwell, when I went to my doctor he signed me off for two weeks and prescribed antibiotics, which helped a great deal. When I came of the antibiotics, things started to get worse again. I managed several days at work, then not only was the diarrhoea back, there was more blood. It got to the point where I couldn't eat and realised I needed to get something sorted out as soon as I could. That night, I called NHS direct as I had some pretty alarming problems with blood loss and how ill I felt - they referred me to an out of hours doctor who called me and told me how to at least get it under control.
Luckily I had the medication I needed to put something together to stabilise myself, and was then able to leave my home to see my doctor. Initially it was hard to get an appointment - until I told the surgery my syptoms and they fitted me in. I had been told to go for a blood test that day, which I did, and when I saw the doctor, told him what was going on.
He sent me to the emergency assessment unit and I was then admitted to hospital. The only bed available was in the cardiac ward and luckily it was a side room. I don't think I could have looked after myself so hospital was the best option. I didn't have a great time in hospital as my food allergies weren't taken seriously (the effects of my allergies really screw up my digestive system) and I kept being given things I couldn't eat, then was told when my family were visiting that I had to be transferred to a ward, which not only spoiled the visit but being on the ward itself had a very negative impact on my health.
I was in for a total of 12 days and when I was told I had to have a colonoscopy done by the specialist I was referred to, I was able to use my private healthcare to cover it and was also able to be discharged. Much as the procedure wasn't fun I was glad it got done as it was essential and helped with my diagnosis. I would also like to say that my specialist was brilliant! I found it all hard to deal with... and then around this time I had a relationship break-up to deal with as well.
I was prescribed pentasa and had to get in the routine of taking my tablets regularly. I'd dissolve then in a shot glass and swig them back, much to the amusement of those around me! I then was referred to another specialist for my joint problems, which has impacted so badly on my mobility I walked with a stick for about a month. I am now on sulfasalazine, which really seems to be helping.
I'm now trying to learn to live with Crohn's. I had two major incidents of soiling myself in public and developed a fear of this happening again (I now tend to wear long coats and have emergency supplies with me just in case). I also find it hard to leave my flat in the morning as the station I use to get to work doesn't have a loo and I end up feeling very anxious if there is a train delay. I used to have a very busy and active life before this, and hope to get some of it back.
I have felt pretty depressed for the past few weeks as the diagnosis and managing my health really has changed my life. I'm determined to make the best of things at work, as my colleagues and in particular my manager have been very good to me through this and it has been appreciated. The thought of getting back into the exciting things I used to do is a great motivator - I have a great love of public speaking, stage performances and trying new things.
Apologies for the length of this post.... it really has been quite a journey! And thank you for reading!
As the title of my post suggests, I am very glad I found this forum. I was diagnosed with Crohn's disease and entropathic arthritis in July of this year, following a bout of diarrohea that went on for four months. Prior to that, I hadn't felt right for about a year and had no energy, and things got worse and worse, to the point where I was doubling up in pain every morning just before work (I had a long journey in which didn't help, used to make it to my mainline station and then had to stop, rest and sort myself out before continuing my journey). My joint pain got so bad I had to use a disabled toilet at the station before continuing my journey and used to get shouted at, sworn at and harrassed by people who questioned me as to why I was using it as I "obviously didn't need to". Actually, I did as I was in so much pain and felt so ill it was really what I needed. Plus, I have a RADAR key for just that reason as recommended by my doctor due to my health problems...
It was only when I went to visit my parents that they remarked on how bad things had become - I was having to visit the toilet several times an hour, and was noticing blood in my stools. I had never had to deal with such a thing before and did everything I could to find help. I was diagnosed with IBS initially and the medication I was prescribed didn't help. I also had a house move, a bereavement and extreme stress at work to deal with which didn't help.
Health wise, things got to the point where I was so unwell, when I went to my doctor he signed me off for two weeks and prescribed antibiotics, which helped a great deal. When I came of the antibiotics, things started to get worse again. I managed several days at work, then not only was the diarrhoea back, there was more blood. It got to the point where I couldn't eat and realised I needed to get something sorted out as soon as I could. That night, I called NHS direct as I had some pretty alarming problems with blood loss and how ill I felt - they referred me to an out of hours doctor who called me and told me how to at least get it under control.
Luckily I had the medication I needed to put something together to stabilise myself, and was then able to leave my home to see my doctor. Initially it was hard to get an appointment - until I told the surgery my syptoms and they fitted me in. I had been told to go for a blood test that day, which I did, and when I saw the doctor, told him what was going on.
He sent me to the emergency assessment unit and I was then admitted to hospital. The only bed available was in the cardiac ward and luckily it was a side room. I don't think I could have looked after myself so hospital was the best option. I didn't have a great time in hospital as my food allergies weren't taken seriously (the effects of my allergies really screw up my digestive system) and I kept being given things I couldn't eat, then was told when my family were visiting that I had to be transferred to a ward, which not only spoiled the visit but being on the ward itself had a very negative impact on my health.
I was in for a total of 12 days and when I was told I had to have a colonoscopy done by the specialist I was referred to, I was able to use my private healthcare to cover it and was also able to be discharged. Much as the procedure wasn't fun I was glad it got done as it was essential and helped with my diagnosis. I would also like to say that my specialist was brilliant! I found it all hard to deal with... and then around this time I had a relationship break-up to deal with as well.
I was prescribed pentasa and had to get in the routine of taking my tablets regularly. I'd dissolve then in a shot glass and swig them back, much to the amusement of those around me! I then was referred to another specialist for my joint problems, which has impacted so badly on my mobility I walked with a stick for about a month. I am now on sulfasalazine, which really seems to be helping.
I'm now trying to learn to live with Crohn's. I had two major incidents of soiling myself in public and developed a fear of this happening again (I now tend to wear long coats and have emergency supplies with me just in case). I also find it hard to leave my flat in the morning as the station I use to get to work doesn't have a loo and I end up feeling very anxious if there is a train delay. I used to have a very busy and active life before this, and hope to get some of it back.
I have felt pretty depressed for the past few weeks as the diagnosis and managing my health really has changed my life. I'm determined to make the best of things at work, as my colleagues and in particular my manager have been very good to me through this and it has been appreciated. The thought of getting back into the exciting things I used to do is a great motivator - I have a great love of public speaking, stage performances and trying new things.
Apologies for the length of this post.... it really has been quite a journey! And thank you for reading!