IBD Update – 1 Month On

I was officially diagnosed with Ulcerative Colitis on the 25th of April 2017 and I had a routine follow up appointment on the 31st of May. From this appointment I was expecting to get the results of the biopsies and maybe even to see some images that were taken during the colonoscopy.

However, this was the not the case, the appointment was extremely disappointing on all levels. First of all I saw a doctor whom I had never seen before, so upon arrival he wanted me to start from the beginning and tell him my story from May 2016 essentially. (This pissed me off straight away, I had been through all of this with the IBD nurse, why couldn’t he just read her notes?) He also didn’t speak very good English so this immediately created a barrier because he was struggling to explain himself properly, and therefore couldn’t translate to me, he also decided to ‘break’ the news to me that I had UC and I just thought oh my god he knows nothing, I’ve known this fr a month now. He couldn’t give me the results of the biopsies nor could he share images because he hadn’t seen either and couldn’t access them there and then.

Anyway, I am due to see the IBD team again on the 5th of July (this week! So I will update you more then). The main result of this appointment was that my dosage of Asacol has increased from 1600mg to 3600mg – this is quite a dramatic increase, but having done some research this is normal for when you are first diagnosed and trying to recover from a flare. I have already done a post on Asacol here. I will do another post on how I am finding the increased dosage soon. He also recommended I started the drug ‘azathioprine’ – it was explained that I would probably be on this for 2/3 years, to which I said no, I was already on steroids and the Asacol – however,  I wish he had explained it to me properly. I have done some more research on it, and I am thinking about starting it next month when I get back from my holidays. How have other people got on with Aza?

I have to apologise for the lack of blogging recently, I have been incredibly busy at work, but also the fatigue is real people!

Genuinely how I feel every single day at work …

I would love to know more about how everyone else is getting on though, how are other people on Asacol?

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2 Comments

  1. Molly
    July 3, 2017 / 6:22 pm

    I have been on 3 Lialda’s (equivalent to asacol) and been taking azathioprine. I was in 75mg of Aza, and just recently bumped up to 100mg as I did not feel the Aza was working. Turns out I had c diff, went on antibiotics, and then the c diff has now returned a second time. Not sure if the Aza works because I have been dealing with the c diff. The one thing I noticed soon after starting the Aza is my skin became very itchy and I developed a rash on my chin. Doctor told me to take one benadryl a day and that seems to have helped the itchiness. All in all, good luck on your journey! Mine has been a struggle now for 6.5 month’s, so I hope your medications do the job and you can come off the steroids (one of the only things that has worked for me thus far).

    • July 9, 2017 / 6:00 pm

      Hi Molly, they are going to start me on 50mg of Aza and then up me to 100mg 2 weeks later… oh no! I am so sorry to hear 🙁 I am worried that it will do things to my skin and hair – those are the main side effects I hear. I really just want life to return to some kind of ‘norm’. I hope all goes well with you 🙂 xx

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