Good Afternoon everyone,
I stumbled upon this forum out of desperation of support. I have had nothing so far but I will explain how I got here.
About 5 years ago I started to experience mouth ulcers these would come and go and I thought nothing of it. I thought maybe its something to do with my asthma, the inhalers i took. A couple of years later i noted that the ulcers were getting worse staying in my mouth. As one went 4 more would appear. i tried everything to get rid of them nothing would work. At the same time I had noticed feeling tired more and more than usual my eyes were red like grit in them. then the toilet problems started. every time i would eat i needed the toilet soon after. some times i would go up to 6 7 times a day. my stools gradually changed from normal to mush as i call it now. I went to the Doctors who did a test and referred me to a consultant at kings college in london. The annoying part with kings is that they would do a test and wait almost a year for a follow up with another test. so past 4 years all i had is 4 tests and follow ups. At this stage they found nothing. said it must be some sort of vitamins disorder and gave me multi vitamins and difflam. They made out that i was a complicated case and nothing more could be done. I then moved to kent during covid and my symptoms continued to get worse to a point I developed a sharp dull ache in the the lower right hand side of my tummy. I still had ulcers in my mouth. I had brain fog, i was tired all the time but this pain in my tummy was building so took my self to hospital. They did a CT scan with contrast thinking it might be my appendix when they called me in and said they found inflammation in my intestines. I thought they actually found something and its not in my mind. They referred me to the specialist in Kent where they clinically diagnosed me with Crohn's disease.
Although this is a weight lifted off me its taken 5 years to get to this point. so roll forward 4 months I am still suffering the pain. so far they have done another CT scan, MRI and countless X rays which all confirm the inflammation between the small and large intestines. I am on prednisolone which i am unable to drop down to more than 4 tablets before the pain increases to an unabideable point. I have since been admitted into hospital with the inflammation and have had 3 failed colonoscopy due to pain problems. I am due another one on Monday 3rd July. I am hoping it will be successful. as they need to do a biopsy. My health as deteriorated so quickly the past 3 months that its possible it could be cancer which is why they want the biopsy. However they are 90% confident its crohns.
I am only 43, my mobility is down to 20 meters or less, I am unable to walk far without the pain building. I have to wear nappies due to accidents happening both day and night. I have my wife helping me wash, cook and help me around my own house. This illness has physically and mentally pushed me to the limits. I have been feeling so down at times. pain gets to a point where i cannot focus on anything. The Doctors will not prescribe me stronger pain killers incase it masks a blockage. I have been approved for the biological infusion but they cannot start me on it till i had my biopsy.
I feel like they keep pushing me with all the meds but i have not had any support, anyone that newly diagnosed with crohns appears to be females in their early 20s and i am sure there must be others like me in my 40s and later with it. I have since applied for the PIP and blue badge but my blue badge got rejected so I have had to lodge a complaint. They ignored the fact that i applied over my mobility. They rejected me saying that a blue badge is not to get to the toilet quicker and that i can have a radar key for that. I never mention toilet problems to them which is a little strange. I am awaiting the outcome of my pip. Also to note I do have severe asthma and take a biological injection for this too
So in summary My consultants believe over 90% that i have crohns disease, all tests so far show the inflammation and i am dependant on steroids. I am also on long term sick and have difficult mobility with a walking stick. they now put cancer in my mind though i doubt it is this otherwise the steroid treatment would not fully work??
I am hoping some point in July I get to start the biological treatment and hopefully at this point I will get some sort of normal life back
I stumbled upon this forum out of desperation of support. I have had nothing so far but I will explain how I got here.
About 5 years ago I started to experience mouth ulcers these would come and go and I thought nothing of it. I thought maybe its something to do with my asthma, the inhalers i took. A couple of years later i noted that the ulcers were getting worse staying in my mouth. As one went 4 more would appear. i tried everything to get rid of them nothing would work. At the same time I had noticed feeling tired more and more than usual my eyes were red like grit in them. then the toilet problems started. every time i would eat i needed the toilet soon after. some times i would go up to 6 7 times a day. my stools gradually changed from normal to mush as i call it now. I went to the Doctors who did a test and referred me to a consultant at kings college in london. The annoying part with kings is that they would do a test and wait almost a year for a follow up with another test. so past 4 years all i had is 4 tests and follow ups. At this stage they found nothing. said it must be some sort of vitamins disorder and gave me multi vitamins and difflam. They made out that i was a complicated case and nothing more could be done. I then moved to kent during covid and my symptoms continued to get worse to a point I developed a sharp dull ache in the the lower right hand side of my tummy. I still had ulcers in my mouth. I had brain fog, i was tired all the time but this pain in my tummy was building so took my self to hospital. They did a CT scan with contrast thinking it might be my appendix when they called me in and said they found inflammation in my intestines. I thought they actually found something and its not in my mind. They referred me to the specialist in Kent where they clinically diagnosed me with Crohn's disease.
Although this is a weight lifted off me its taken 5 years to get to this point. so roll forward 4 months I am still suffering the pain. so far they have done another CT scan, MRI and countless X rays which all confirm the inflammation between the small and large intestines. I am on prednisolone which i am unable to drop down to more than 4 tablets before the pain increases to an unabideable point. I have since been admitted into hospital with the inflammation and have had 3 failed colonoscopy due to pain problems. I am due another one on Monday 3rd July. I am hoping it will be successful. as they need to do a biopsy. My health as deteriorated so quickly the past 3 months that its possible it could be cancer which is why they want the biopsy. However they are 90% confident its crohns.
I am only 43, my mobility is down to 20 meters or less, I am unable to walk far without the pain building. I have to wear nappies due to accidents happening both day and night. I have my wife helping me wash, cook and help me around my own house. This illness has physically and mentally pushed me to the limits. I have been feeling so down at times. pain gets to a point where i cannot focus on anything. The Doctors will not prescribe me stronger pain killers incase it masks a blockage. I have been approved for the biological infusion but they cannot start me on it till i had my biopsy.
I feel like they keep pushing me with all the meds but i have not had any support, anyone that newly diagnosed with crohns appears to be females in their early 20s and i am sure there must be others like me in my 40s and later with it. I have since applied for the PIP and blue badge but my blue badge got rejected so I have had to lodge a complaint. They ignored the fact that i applied over my mobility. They rejected me saying that a blue badge is not to get to the toilet quicker and that i can have a radar key for that. I never mention toilet problems to them which is a little strange. I am awaiting the outcome of my pip. Also to note I do have severe asthma and take a biological injection for this too
So in summary My consultants believe over 90% that i have crohns disease, all tests so far show the inflammation and i am dependant on steroids. I am also on long term sick and have difficult mobility with a walking stick. they now put cancer in my mind though i doubt it is this otherwise the steroid treatment would not fully work??
I am hoping some point in July I get to start the biological treatment and hopefully at this point I will get some sort of normal life back
