- Joined
- Nov 14, 2012
- Messages
- 27
Hi there, I came across this forum while searching for information on the surgery I am due to have in January 2013 and I'd like to share my story with you all.
I was finally diagnosed in June 2011 with Crohn's after 5 years of symptoms and being fobbed off by my GP with IBS and told to 'live with it'. My symptoms were being bloated all the time, with diarrhea (with blood) then constipation. I arranged for tests myself (as the gp wouldn't do this for me) to see if I had any food allergies, these came back as dairy, tea, coffee and a couple of others. I cut these out of my diet and the symptoms went away they then returned back in January 2011 only this time far worse which led me to leaving my job through stress and depression.
When the symptoms became worse I had mouth ulcers which made it difficult to eat, which meant I ended up loosing 4 stone (56lbs) in 6 weeks, I was up every 2 hours to use the toilet and lived on nothing but water. It wasn't till I was visited by a friend who said I looked terrible and she called an ambulance that I was taken into hospital and was there for a week having various tests and getting even worse. I was finally diagnosed and had to make a choice of emergency surgery to form a loop ileostomy (with a hope to reverse at a later date) or face my bowel perforating. I was given intravenous steroids and Ramicade whilst in hospital. Because of my rapid wait loss I had to have physiotherapy to enable me to walk unaided and how to use my hands again.
I was so relieved to finally have a diagnosis but angry at my GP for not taking me seriously when I kept saying I know something more serious is wrong with me. I was in hospital for a month and have since had frequent visits since to check my progress and to see if my ileostomy can be removed. On my last visit i was told that there was nothing more that could be done to save my large bowel and the best was to have it removed.
I am yet to completely come to terms with this but my new concern is that I was advised by the surgeon that I may have to have my ovaries and tubes removed due to excessive scar tissue having damaged them and did I want to some of my eggs harvested so I maybe able to have my own children at a later date.
I'm now undecided as to whether I should have this done as some of my symptoms are returning. I have already been taken back to hospital with severe pain in the abdomen and bleeding from the anus.
It's good to know I am not alone and that there are others that have had similar experiences to me because I do feel that way sometimes, I have had to make all the decisions regarding this on my own and my new partner does not understand but to try and help him understand is difficult for me as I'm unable to answer the questions I have let alone the ones he has.
I was finally diagnosed in June 2011 with Crohn's after 5 years of symptoms and being fobbed off by my GP with IBS and told to 'live with it'. My symptoms were being bloated all the time, with diarrhea (with blood) then constipation. I arranged for tests myself (as the gp wouldn't do this for me) to see if I had any food allergies, these came back as dairy, tea, coffee and a couple of others. I cut these out of my diet and the symptoms went away they then returned back in January 2011 only this time far worse which led me to leaving my job through stress and depression.
When the symptoms became worse I had mouth ulcers which made it difficult to eat, which meant I ended up loosing 4 stone (56lbs) in 6 weeks, I was up every 2 hours to use the toilet and lived on nothing but water. It wasn't till I was visited by a friend who said I looked terrible and she called an ambulance that I was taken into hospital and was there for a week having various tests and getting even worse. I was finally diagnosed and had to make a choice of emergency surgery to form a loop ileostomy (with a hope to reverse at a later date) or face my bowel perforating. I was given intravenous steroids and Ramicade whilst in hospital. Because of my rapid wait loss I had to have physiotherapy to enable me to walk unaided and how to use my hands again.
I was so relieved to finally have a diagnosis but angry at my GP for not taking me seriously when I kept saying I know something more serious is wrong with me. I was in hospital for a month and have since had frequent visits since to check my progress and to see if my ileostomy can be removed. On my last visit i was told that there was nothing more that could be done to save my large bowel and the best was to have it removed.
I am yet to completely come to terms with this but my new concern is that I was advised by the surgeon that I may have to have my ovaries and tubes removed due to excessive scar tissue having damaged them and did I want to some of my eggs harvested so I maybe able to have my own children at a later date.
I'm now undecided as to whether I should have this done as some of my symptoms are returning. I have already been taken back to hospital with severe pain in the abdomen and bleeding from the anus.
It's good to know I am not alone and that there are others that have had similar experiences to me because I do feel that way sometimes, I have had to make all the decisions regarding this on my own and my new partner does not understand but to try and help him understand is difficult for me as I'm unable to answer the questions I have let alone the ones he has.
Have you been back to that GP? Do they know what their incompetence has led to?
