Hello everyone, I hope you’re all well.
Thought I’d give a little update on my saga. As you might remember I’ve had crohn’s for 4 years, and in nov of last year developed a peri-anal abscess which had me in hospital for a week, and eventually left a fistula. The fistula became infected again and again, and I pleaded with my gastro to give me a referral to a surgeon. He told me he was going to ‘wait and see how many times the fistula because infected’ before giving me a referral. So when it becoming infected for the 3rd time I took things into my own hands and found a great colo-rectal surgeon, who inserted 2 setons. At my follow-up one month after the setons were inserted it was found the abscess was gaining speed again and becoming more septic (and extremely painful). So I had a second surgery and had a catheter ‘mushroom’ drain inserted.
My fabulous colo-rectal surgeon (who specialises in IBD) referred me to a gastro and I had my first appointment with him yesterday.
He spent almst 2 hours talking to me, learning about my history, my family, my background, how crohn’s affects my life, relationships – EVEYRTHING. He was absolutely furious at the way I had been treated by my last GI. He said he sees patients like me mis-managed by bad GI’s all the time and it makes him furious. He told me I have been living with an extreme and very aggressive form of crohn’s for 3 years and this should not have happened – I have been mis-managed by a negligent GI who is an endoscopist more that a gastroenterologist, and makes his money performing these procedures – NOT looking after the well being of his patients.
I had never been offered any medications other than steroids and pentasa. And I should have been on better medications.
I am now set to take my first dose of imuran tonight before bed, and I am in the process of applying for a medication which he says works well in conjunction with Imuran. I’m not sure what this other med is called, but I have such faith in this dr I know he is going to do the right thing. I have to keep a diary of my croh’s every day, and I got blood tests, x-rays and am set to get an MRI of my pelvis so he can see if there are any more pockets of sepsis before starting thus new medication.
I am just so RELIEVED and grateful to this brilliant man! To finally receive proper treatment for this disease is just amazing. He is an IBD specialist gastro and does a lot of research and is one of the leaders in the field in Australia. Finally, I feel like things are going to be managed! He puts his patients first and is so concerned about their wellbeing, he gave me his direct line, and his nurse’s direct line and told me to put them into my phone and call if anything is wrong. He said there is no reason I should have to be in pain – and while trying to finish uni, work full time, manage relationships etc – he actually understands! Thank god for doctors like this!
Sorry, I just wanted to share my joy at finally being managed properly and getting proper meds after 4 years of hell!!
I guess its just one of those life experiences – you learn to never take things at face value and always question everything. I, like all newly diagnosed crohn’s patients, was at a complete loss at what to do when diagnosed, and it wasn’t until I was so badly neglected that I ended up in hospital twice, that I thought ‘enough’s enough’! its almost like we have to really suffer before realising we aren’t being treated properly. Very sad.
I am just overjoyed; I feel like my life is going to be given back to me after it was stolen away these last few years. Finally, some answers, some direction! I’m sad to see how much damage it has already done to my young body, but can only look forward from here… I look forward to remembering what it is like to feel ‘normal’ and healthy
Hi Andorable, my new gastro is called Dr Radford-Smith, at the royal Brisbane. Have you heard of him? He does a lot of work in raising awareness of Crohn’s and works with the crohn’s and colitis association of QLD, something I hope to help out with once I’m better.
I haven’t had any of my bowel removed thank god. But it seems I have a pretty aggressive form of the disease L or so I’ve been told. Its been left to run rampant in my system for the last 4 years, I just hope I can stop it in its tracks.
The imuran seems to be ‘going down’ ok – apart from some nausea and extreme tiredness!
..... I agree - a Crohn's 'good news story' is always a nice thing!