Hi guys,
I'm a Crohns sufferer just recently recovering from a total colectomy with terminal ilieal resection. I have just also discovered that I have Crohns disease in my small bowel and today I found out that Crohns is also present in my mouth. I am under NZ specialists, gastro/surgical/oral and will see the surgeons on the 19th of this month whereby we will be discussing if it is a possibility to reverse the bag I currently wear. I also suffere from ankylosing spondilitis, so my recovery has been hampered by getting severe pain from a bursitis in my right hip which was given cortisone injections which unfortunately did not work. I am awaiting a further appointment to sort out medication but in the meantime am taking Tramadol, Panadol as painkillers. I also contracted Chemical Hepatitis which still has not receded since my diagnoses so I'm very tired. I am starting physiotherapy next week to help me learn how to walk properly again on my right hand side and am usually at the hospital or the GP's every week for some test or other. I have also volunteered for research as apparently I'm an anomoly as when I was first admitted to hospital for extreme pain, I was given Humeira and steroids, but I was actually too gone for that (we now know that in hindsight) and when I finally had my operation for an iliostomy, my bowel had swollen to 8cm in diameter and the upshot was my hubby got a phone call mid surgery for him to consent to the removal of my bowel and also to be told that I might not survive the operation. I was just wondering if there is anyone else out there who is in a similar situation. It feels like every week I am getting a knock back of some sort or other and our health system pharmaceutical company that controls the release of drugs does it on a numbers and cost basis, not an actual patient basis, and my specialists have decided that Humeira would really benefit me but unfortunately for me, it is an uphill battle convincing Pharmac (the company in question) to invest their money and give me Humeira. I guess I just want to see if I'm alone in this boat or if there is anyone else who can share the rowing???!!! I have a great sense of humour (thank god) so if anyone wants to share, I will be more than happy. You just feel so alone in this journey, and even though I have a fantastic support network, it still feels like I'm just doing this alone. Look forward to hearing from you
KiwiJ
I'm a Crohns sufferer just recently recovering from a total colectomy with terminal ilieal resection. I have just also discovered that I have Crohns disease in my small bowel and today I found out that Crohns is also present in my mouth. I am under NZ specialists, gastro/surgical/oral and will see the surgeons on the 19th of this month whereby we will be discussing if it is a possibility to reverse the bag I currently wear. I also suffere from ankylosing spondilitis, so my recovery has been hampered by getting severe pain from a bursitis in my right hip which was given cortisone injections which unfortunately did not work. I am awaiting a further appointment to sort out medication but in the meantime am taking Tramadol, Panadol as painkillers. I also contracted Chemical Hepatitis which still has not receded since my diagnoses so I'm very tired. I am starting physiotherapy next week to help me learn how to walk properly again on my right hand side and am usually at the hospital or the GP's every week for some test or other. I have also volunteered for research as apparently I'm an anomoly as when I was first admitted to hospital for extreme pain, I was given Humeira and steroids, but I was actually too gone for that (we now know that in hindsight) and when I finally had my operation for an iliostomy, my bowel had swollen to 8cm in diameter and the upshot was my hubby got a phone call mid surgery for him to consent to the removal of my bowel and also to be told that I might not survive the operation. I was just wondering if there is anyone else out there who is in a similar situation. It feels like every week I am getting a knock back of some sort or other and our health system pharmaceutical company that controls the release of drugs does it on a numbers and cost basis, not an actual patient basis, and my specialists have decided that Humeira would really benefit me but unfortunately for me, it is an uphill battle convincing Pharmac (the company in question) to invest their money and give me Humeira. I guess I just want to see if I'm alone in this boat or if there is anyone else who can share the rowing???!!! I have a great sense of humour (thank god) so if anyone wants to share, I will be more than happy. You just feel so alone in this journey, and even though I have a fantastic support network, it still feels like I'm just doing this alone. Look forward to hearing from you
KiwiJ