Hi Guys,
Well I thought I would join and post my story as I have just been diagnosed with Crohn's disease after years of health problems and am feeling pretty awful at the moment. Finally got out of hospital after 2 weeks and am glad to be home but struggling to understand and come to terms with having this condition.
I am 27 and live in Somerset in the UK with my husband and daughter who is 2 years old. My family are my world but when I am not busy being a mum I work as a children's occupational therapist.
I first started having problems about 5 years ago when I contracted food posioning. I ended up having 3-4 months of bloody diarrhea after this which led to a sigmodoscopy and a diagnosis of colitis. I was put on a course of prednisolone which helped greatly and after that was tapered everything settled down for a bit.
If I am honest I still had times where things weren't right, when I had really bad pain and diarrhea, blood in my stools etc but I was kinda in denial. I got married, we moved house and I was busy establishing my career and didn't want to admit I was ill. I already have epilepsy and the idea of dealing with anything else was just a bit too much.
Then in Dec 2007 I found out I was pregnant, and I have never felt better. During the pregnancy all the symptoms went away and for the 1st 32 weeks I was great. Unfortunately at the end of the pregnancy I developed pre-eclampsea and then suffered a complete placental abruption. This is where the placenta seperates before birth and resulted in me having a massive bleed and losing 7 pints of blood. My daughter was delivered withinh 10 mins of us getting to the hospital by c-sec and we were both very ill afterwards. My husband was warned that neither of us would pull through but amazingly we did.
My recovery was slow and painful, i was very amaemic and on iron tablets 4 times a day. I started getting bowel problems again but put it all down to the trauma of the surgery and the iron tabs etc. As time went on the pain got worse and I was referred to the pain clinic, they felt the pain may be due to the massive amounts of scar tissue from the trauma of the rapid surgery. Took less than 3 mins to get baby out but kinda wrecked my insides. I was still suffering from diarrhea and passing blood, had a low grade fever most of the time and had absolutely no energy for anything. I also developed some eye problems around this time which they now think are linked to the crohns.
Eventually in about august this year I got fed up of living like this and went to see my gp. He was brilliant and ran a load of blood tests that showed all my inflammatory markers were through the roof. He said his gut feeling was to refer me to a GI for a colonoscopy. Had this done about 5 weeks ago and it confirmed crohn's in terminal illeum. Before I could go back to discuss results I had a major flare and got rushed into hospital- CT scan showed Crohns also in ascending colon. I had 10 days of hydrocortisone IV in hospital and have now been discharged on Budesonide. I have been home almost 2 weeks and to be honest am not feeling great, pain is still a big problem particulary when I eat and so I am not really eating. Not due to see consultant til Dec but GP said he wants me to continue on Budesonide and not reduce does next month as planned. It would be really good to know others experiences with this drug? how quickly can I expect it towork? any advice on managing pain? or eating?
The other thing is developed a pleural effusion while in hospital which the doctors said was linked to the crohns and the massive immflamation in my body- anyone have any experience of anything like this? It was pretty scary as I had chest pain and my pulse and sats dropped really low. the fluid is lessening now but it is not something I have ever heard about with crohns.
Sorry for going on so long, I didn't realise it was quite such an epic story. I am really glad to be able to share it with people who understand and hope that I can 'get to know you all' a bit. Any advice greatly appreciated as I am very new to all this and feeling pretty low and scared at the moment,
Thanks for listening.
Charlotte
Well I thought I would join and post my story as I have just been diagnosed with Crohn's disease after years of health problems and am feeling pretty awful at the moment. Finally got out of hospital after 2 weeks and am glad to be home but struggling to understand and come to terms with having this condition.
I am 27 and live in Somerset in the UK with my husband and daughter who is 2 years old. My family are my world but when I am not busy being a mum I work as a children's occupational therapist.
I first started having problems about 5 years ago when I contracted food posioning. I ended up having 3-4 months of bloody diarrhea after this which led to a sigmodoscopy and a diagnosis of colitis. I was put on a course of prednisolone which helped greatly and after that was tapered everything settled down for a bit.
If I am honest I still had times where things weren't right, when I had really bad pain and diarrhea, blood in my stools etc but I was kinda in denial. I got married, we moved house and I was busy establishing my career and didn't want to admit I was ill. I already have epilepsy and the idea of dealing with anything else was just a bit too much.
Then in Dec 2007 I found out I was pregnant, and I have never felt better. During the pregnancy all the symptoms went away and for the 1st 32 weeks I was great. Unfortunately at the end of the pregnancy I developed pre-eclampsea and then suffered a complete placental abruption. This is where the placenta seperates before birth and resulted in me having a massive bleed and losing 7 pints of blood. My daughter was delivered withinh 10 mins of us getting to the hospital by c-sec and we were both very ill afterwards. My husband was warned that neither of us would pull through but amazingly we did.
My recovery was slow and painful, i was very amaemic and on iron tablets 4 times a day. I started getting bowel problems again but put it all down to the trauma of the surgery and the iron tabs etc. As time went on the pain got worse and I was referred to the pain clinic, they felt the pain may be due to the massive amounts of scar tissue from the trauma of the rapid surgery. Took less than 3 mins to get baby out but kinda wrecked my insides. I was still suffering from diarrhea and passing blood, had a low grade fever most of the time and had absolutely no energy for anything. I also developed some eye problems around this time which they now think are linked to the crohns.
Eventually in about august this year I got fed up of living like this and went to see my gp. He was brilliant and ran a load of blood tests that showed all my inflammatory markers were through the roof. He said his gut feeling was to refer me to a GI for a colonoscopy. Had this done about 5 weeks ago and it confirmed crohn's in terminal illeum. Before I could go back to discuss results I had a major flare and got rushed into hospital- CT scan showed Crohns also in ascending colon. I had 10 days of hydrocortisone IV in hospital and have now been discharged on Budesonide. I have been home almost 2 weeks and to be honest am not feeling great, pain is still a big problem particulary when I eat and so I am not really eating. Not due to see consultant til Dec but GP said he wants me to continue on Budesonide and not reduce does next month as planned. It would be really good to know others experiences with this drug? how quickly can I expect it towork? any advice on managing pain? or eating?
The other thing is developed a pleural effusion while in hospital which the doctors said was linked to the crohns and the massive immflamation in my body- anyone have any experience of anything like this? It was pretty scary as I had chest pain and my pulse and sats dropped really low. the fluid is lessening now but it is not something I have ever heard about with crohns.
Sorry for going on so long, I didn't realise it was quite such an epic story. I am really glad to be able to share it with people who understand and hope that I can 'get to know you all' a bit. Any advice greatly appreciated as I am very new to all this and feeling pretty low and scared at the moment,
Thanks for listening.
Charlotte
