Hi my name is Eleanor or Ellie and I was diagnosed with Crohn's last week. My story is a bit of a long one so I apologise now.
In February 2015, 2 days before I was due to go on holiday to New York, I came down with what I thought was a stomach bug. 2 weeks and a ruined holiday later I went to the doctor to get some help. She said it was a gut infection, sent me off with tablets and that was it. But I continued to visit the toilet several times a day.
In March I visited again. She said it was temporary lactose intolerance and to cut it out for a while, if it hadn't cleared up in a month I was to return. Not wanting to be a pain I continued to struggle through daily life (I'm a teacher and regular bathroom breaks aren't really available!).
In April I returned again and she suggested it may be a gluten intolerance and she sent off samples of blood and faeces. I received a phone call saying they had missed some tests and they needed doing again. Cue another month of waiting.
In May she said she was referring me to the hospital for a colonoscopy and in June I was given an appointment for September. And then I went and got a job in Spain...
I had previously lived in Spain for a year and when last there they diagnosed me with gall stones and operated immediately. At this point, whilst I was having to run to the toilet 10 times a day that was my only symptom and I figured the Nhs had taken so long to even get to this point I might as well get sorted in Spain.... but when I moved my symptoms changed. Blook appeared in my stool and I had severe cramps but I was in Spain now and had cancelled the test in England... Stupid I know.
My Spanish is ok but it was difficult and I couldn't get to a doctor until October. When I told him of my symptoms he immediately referred me urgently and I had an appointment with the specialist in November.
I saw the specialist who said it sounded like ulcerative colitis and was sending me for a colonoscopy. I got the choice of sedation and said yes. This meant the waiting time was more than doubled.
Fast forward past Christmas and my boyfriend becoming increasingly frustrated that when we went out I constantly needed the toilet and my sex drive was gone.
In January I hit rock bottom. I was in a constant state of pain. The blood was now a daily problem and I forgot what a normal bowel movement was like. I was fighting fevers regularly and I eventually admitted to my employer that I wasn't well.
On Friday 22nd January I went to the emergency room and was rushed through and immediately put on a drip and monitors. They did an ultrasound and found a great amount of inflammation. I was admitted and the week after I had test after test. Cat scans, ultrasounds, rectoscopy, colonoscopy, biopsies and blood tests. I was on constant tablets to take away the inflammation and I was put on prednisone. A week later they told me they had found nothing and I was devastated. Certain I was going to suffer like this the rest of my life with no answer. They put me on prednisone and metronidazole for after the hospital and I got better.
For 2 months I lived in bliss and then it started again. A parent at my school was a doctor at the hospital and contacted my doctor. He saw me in May and put me down for an urgent capsule endoscopy. I had it at the end of May and I spent the day wearing this contraption praying they found something...
And last week I was called in and they showed me all the ulcers in my small intestine and told me I had Crohn's disease. Like I said my Spanish is good but I didn't understand a lot of what was said and I was shocked that they had found something and happy and upset at the same time. All I know is they've taken blood the last two weeks and my life is now a mixture of doctors appointments and tablets.
Currently I am on pentasa 3 times a day, intestifalk or I think it's known as budenofalk 3 times a day and I'm on a calcium tablet once a day. This Tuesday they are taking more blood, setting up a vaccination timetable and doing allergy tests.
I see my consultant again in July.
So I've joined for several reasons. One I'm hoping people might be able to help why I'm on these tablets and why they're doing all these tests. They mentioned my immune system I'm guessing it's to do with that. But any help would be appreciated.
I have my boyfriend in spain and friends but that's it. He's struggling. Saying how unfair it is for him and saying he doesn't know how to cope with it for life and I'm struggling to support him as I feel completely lost.
I must hear... "at least you know what it is" or "at least it's not worse" 10 times a day or more and I am struggling to tune out these people. I get I'm lucky but I don't feel it right now...
My diet had suffered for months. I associate food with needing the toilet so I currently eat twice a day in the hopes I can get to a toilet after. And now being told I need to eat small meals, 5 times a day I'm struggling.
I'm so scared to go out. I'm scared there will be no toilet or my Spanish will fail and I won't get to one in time because I can't explain my condition to them.
I guess most of all I need a friend. Someone who gets it and who has been through it and I know it's a big ask. I get that other people around the world are dealing with much worse things right now and that makes me feel so guilty that I just push my feelings down and pretend life is great.... but I don't feel it is. I don't understand how one day I was a healthy person and the next I have this life long problem.
Sorry to ramble and rant and thank you in advance.
In February 2015, 2 days before I was due to go on holiday to New York, I came down with what I thought was a stomach bug. 2 weeks and a ruined holiday later I went to the doctor to get some help. She said it was a gut infection, sent me off with tablets and that was it. But I continued to visit the toilet several times a day.
In March I visited again. She said it was temporary lactose intolerance and to cut it out for a while, if it hadn't cleared up in a month I was to return. Not wanting to be a pain I continued to struggle through daily life (I'm a teacher and regular bathroom breaks aren't really available!).
In April I returned again and she suggested it may be a gluten intolerance and she sent off samples of blood and faeces. I received a phone call saying they had missed some tests and they needed doing again. Cue another month of waiting.
In May she said she was referring me to the hospital for a colonoscopy and in June I was given an appointment for September. And then I went and got a job in Spain...
I had previously lived in Spain for a year and when last there they diagnosed me with gall stones and operated immediately. At this point, whilst I was having to run to the toilet 10 times a day that was my only symptom and I figured the Nhs had taken so long to even get to this point I might as well get sorted in Spain.... but when I moved my symptoms changed. Blook appeared in my stool and I had severe cramps but I was in Spain now and had cancelled the test in England... Stupid I know.
My Spanish is ok but it was difficult and I couldn't get to a doctor until October. When I told him of my symptoms he immediately referred me urgently and I had an appointment with the specialist in November.
I saw the specialist who said it sounded like ulcerative colitis and was sending me for a colonoscopy. I got the choice of sedation and said yes. This meant the waiting time was more than doubled.
Fast forward past Christmas and my boyfriend becoming increasingly frustrated that when we went out I constantly needed the toilet and my sex drive was gone.
In January I hit rock bottom. I was in a constant state of pain. The blood was now a daily problem and I forgot what a normal bowel movement was like. I was fighting fevers regularly and I eventually admitted to my employer that I wasn't well.
On Friday 22nd January I went to the emergency room and was rushed through and immediately put on a drip and monitors. They did an ultrasound and found a great amount of inflammation. I was admitted and the week after I had test after test. Cat scans, ultrasounds, rectoscopy, colonoscopy, biopsies and blood tests. I was on constant tablets to take away the inflammation and I was put on prednisone. A week later they told me they had found nothing and I was devastated. Certain I was going to suffer like this the rest of my life with no answer. They put me on prednisone and metronidazole for after the hospital and I got better.
For 2 months I lived in bliss and then it started again. A parent at my school was a doctor at the hospital and contacted my doctor. He saw me in May and put me down for an urgent capsule endoscopy. I had it at the end of May and I spent the day wearing this contraption praying they found something...
And last week I was called in and they showed me all the ulcers in my small intestine and told me I had Crohn's disease. Like I said my Spanish is good but I didn't understand a lot of what was said and I was shocked that they had found something and happy and upset at the same time. All I know is they've taken blood the last two weeks and my life is now a mixture of doctors appointments and tablets.
Currently I am on pentasa 3 times a day, intestifalk or I think it's known as budenofalk 3 times a day and I'm on a calcium tablet once a day. This Tuesday they are taking more blood, setting up a vaccination timetable and doing allergy tests.
I see my consultant again in July.
So I've joined for several reasons. One I'm hoping people might be able to help why I'm on these tablets and why they're doing all these tests. They mentioned my immune system I'm guessing it's to do with that. But any help would be appreciated.
I have my boyfriend in spain and friends but that's it. He's struggling. Saying how unfair it is for him and saying he doesn't know how to cope with it for life and I'm struggling to support him as I feel completely lost.
I must hear... "at least you know what it is" or "at least it's not worse" 10 times a day or more and I am struggling to tune out these people. I get I'm lucky but I don't feel it right now...
My diet had suffered for months. I associate food with needing the toilet so I currently eat twice a day in the hopes I can get to a toilet after. And now being told I need to eat small meals, 5 times a day I'm struggling.
I'm so scared to go out. I'm scared there will be no toilet or my Spanish will fail and I won't get to one in time because I can't explain my condition to them.
I guess most of all I need a friend. Someone who gets it and who has been through it and I know it's a big ask. I get that other people around the world are dealing with much worse things right now and that makes me feel so guilty that I just push my feelings down and pretend life is great.... but I don't feel it is. I don't understand how one day I was a healthy person and the next I have this life long problem.
Sorry to ramble and rant and thank you in advance.