I am awful at keeping things up to date recently, but I’ve had alot to mull over and consider.
Since Infliximab #8 I’ve been to the hospital for various appointments. I’ve seen my Liver specialist, had a small bowel MRI done, finally seen a Rheumatologist, my gastro, a dental surgeon and my GP. None of these things are new nor are they unrelated; they have all somehow become interlinked. Typical.
So after my last infusion, I spent my half term building up to a small bowel MRI. Nothing about it was pleasant, but I was suffered from the tail end of the flu and trying to get the barium solution was very difficult. I didn’t even manage half of it and I was already feel like my body was trying flare up. The scan took ages; most of my images needed repeated – to what I thought at the time was just my coughing fits – but I didn’t feel much of the after effects until the morning of work the following Monday. Thus, started the week from hell.
I took a half day on the Tuesday and spent it at the QE Hospital in Birmingham to see my Liver specialist. I was due for two scans and was nil by mouth, alone and suffering from dehydration. How I managed to do it all is still beyond me. The specialist reassured me again that this problem isn’t likely to be anything – my blood work and scans are clear – but he would like to see me again in three months – February – and do a liver biopsy to just be safe and rule out everything. Fine by me, I want to know absolutely and definitely that this isn’t something to worry about.
Following that, I see my GP to try to get another referral to a GYNO to see if anything can be done about my PCOS apart from “weight loss” – she was pretty useless; telling me that losing weight was my only option, despite me explaining that in the last 6 months alone, I have had a considerable speed up – plus noticeable – of my main symptom / side effect; hair growth. It has a lasting and deep impact on my confidence and my own mental health, let alone how IBD makes me feel too. She told me to seek counselling if I was unhappy. I just wanted someone to help me. In the end, she wrote me a referral for an endocrinologist who I see at the end of January. Just to add to everything else, but I do feel this is my next hurdle, as my IBD settles down.
Since then, I’ve had my 9th Infliximab and seen my GI about my MRI results. Which in the end, were not good. I have “active Crohn’s Disease” which is “fistulating in nature”. Something I did not know about. Added to that, the Infliximab is working but it’s not doing as good of a job as we had hoped. After a year on it, it has plateaued out and is just maintaining my current state. This isn’t anything to worry about, as if I become symptomatic again, we have options – increasing the dosage, increasing its frequency or added another medication. Unfortunately, I didn’t get to ask the one question that’s been on my mind a long while now – and probably for the best, as it’s quite negative – “what happens when Infliximab fails? Then what?”
It’s a dreary subject and shouldn’t really be asked let alone using the prefix of “when” but “if”, but it has been on my mind since I’ve started to have increased symptoms further and further away from the end of my cycle, let alone the problems with infusing me these last couple of times. I can understand why they are keeping me on it and I can understand why my question didn’t come out of my mouth; it’s not the best frame of mind to be thinking about, let alone vocalising. And I do trust my team. I guess I just have to be honest when it comes to what I want. If this medication can help me whilst I try to solve and soothe my PCOS problems and give me another 6 months to a year in a job, I will be grateful. I just hope I don’t ignore my body for too long before speaking up. I learnt my lessons 3 years ago but my mind is now becoming fuzzy on what that was. It’s been a long time since I was really sick. And I’ve struggled and still kept myself upright and going for so long, how will I know?
Like I said, best not to think like that.. at least not right now.
So, going into 2015 I have lots more appointments to “look forward to” – my wisdom tooth coming out, seeing the endocrinologist, getting the liver biopsy, Infliximab #10 and rounding out the spring with the gastro team. I’m sure more will happen, it’s never quiet for me is it…?