I have my annual check-up with my gastroenterologist tomorrow. I’m kind of looking forward to seeing him!! This man who played such a big role in my life for so many years, who I was seeing on a monthly basis if not even more regularly at some points. Is it strange that I kind of miss him?
I’m also relieved that an annual check-up no longer means fasting, Pico prep and having to spend half the day in hospital waiting to have a camera stuck up my butt! No more colonoscopies for me!!! We all know how important (but not always fun) that procedure can be! Since my ileostomy, my gastro appointments are now solely in the comfort of the doctor’s rooms and I can keep my pants on!
I’m not really sure what to expect from the appointment. I really have nothing to report. Everything has been going swimmingly and I’m feeling no signs of Crohn’s, gastrointestinal related or otherwise. This is a wonderful thing!
Of course, irrespective of whether I’m currently symptom free or not, I understand the importance of ongoing treatment, regular (as necessary) check-ups, and keeping these appointments.
For once this might be a quick in and out consultation (I think I hold the Guinness world record for longest specialist appointment ever at over an hour, and most patient and understanding specialist!)
In all seriousness though, I do need my recent blood test results, particularly my liver function and to check that my current medication dosage is still okay. Apart from that though, I have been thinking about what else I should/need to discuss with him. There is one subject I’d like to address, and this can be a bit of a tricky and sensitive one. When it comes to the IBD community there are also varying opinions and it can be a bit of a sore point….
Taking maintenance medication when there is no active disease.
I want to discuss with my gastro potentially going off Imuran (Azathioprine). Going medication free. I have been taking Imuran, which is an immunosuppressant, since 2010. Whilst many people with IBD have positive results and see improvement in their symptoms when taking this medication, like any medication there are also possible side effects including increased risk of infection and of developing certain types of cancer, including skin cancer. Although the risks are low, there is still a risk.
At several stages of my treatment I was using Imuran in combination with another medication or biologic. At some points I was okay, my disease was manageable. At many points, I was in an active flare and it wasn’t. At no point (until my surgery) did I reach remission. My Crohn’s just did not respond to any medication, including Imuran. Since my surgery over 2 years ago, I have had no active disease, however I continue to diligently take this medication.
Here is my dilemma: Whilst the medication in this instance did not appear to help reduce my Crohn’s symptoms, and I still had significant periods of active disease whilst taking it, how do I know if I had not been taking it, I wouldn’t have been even worse? How do I know if it has the potential to do more harm than good? How do I know that if I stop taking it, the Crohn’s won’t become active again in another part of my GI tract? The answer is, I don’t. There is no possible way of knowing. Not even the doctors know.
Crohn’s disease is a chronic disease. Surgery does not cure it. Yes, all the inflamed and diseased parts of my gut have now been removed. Yes, it can put you into remission and bring you out of active disease for a period of years (maybe, hopefully forever), but I know there is a chance it could reappear somewhere else.
So knowing this, but given the potential long-term side effects of this medication, what does one do?
Not taking the medicine means there is a possibility of active Crohn’s returning (mind you that possibility still exists even if I AM taking the medicine), perhaps this time in my small intestine or oesophagus. I am NOT willing to risk this. Taking the medication means there is a possibility or higher chance of other health issues. Both are unknowns. Both threaten my health and quality of life.
I do NOT in any way condone not taking your prescribed medications or ignoring expert advice when it comes to this. I am just concerned (even scared) of potential complications and implications of BOTH options. You would think with medicine being a science, there should be a black and white answer. But there isn’t. I guess the bottom line is weighing up all the pros and cons and the risks of not taking AND taking the medication.
I think I know what my gastro will say tomorrow, but I’m not sure I’m ready to hear it. Although I think in writing this, I have actually already come to a conclusion and know what I have to do. I will still bring it up with him tomorrow, if only because I need to hear what he has to say. Who knows, maybe he will prove me wrong! In the end, in this instance, I know it is my decision.
I am sure this is something many of us have contemplated at some point throughout our diagnosis and treatment, whether for IBD or something else. The effects of a certain medication – the good and potential bad it is doing to our bodies, should be taken seriously. It’s like the love/hate relationship most of us can relate to if taking Prednisone. Why can’t it just be an easy yes or no? Why is there so much grey when you just want to be told one way or the other? Why can’t someone tell you which is the right option for you? I guess if we all had a crystal ball it wouldn’t be life though, right?