After six days in hospital, it looks like we have a plan! My blood test results are slowly returning to a stable level and with no other immediate challenges, we are starting to look at the longer term management of the ulcerative colitis. There still seems to be some reluctance from all of the doctors I’ve spoken with to make an open call for one path over another (medical therapy vs. surgery to remove my large bowel), but their preferences are not well hidden.
Since admission, surgery has been brought up repeatedly. Whether this is just a way of slowly introducing it as an option, or to prepare me for an unavoidable future, it’s really hard to know. At any rate, much of my time in here has been spent weighing up the pros and cons of each. Every day I’ve felt myself slowly adjusting to the realities of surgery, and the promise of an improved long-term quality of life.
If I was to have the surgery, there is a chance that it would mean fewer drugs and a stronger immune system. I would likely have fewer hospital admissions like this one, my risk of bowel cancer would disappear, and any associated symptoms of my disease would fade. I would have energy again, no more joint, back and abdominal pain, improved nutrition, and no more fear of being more than 5 metres from a bathroom.
However, surgery brings its own difficulties. There are the immediate risks of surgery, which may be increased by my immunosuppression. There is a chance that the reversal surgery to remove the need for a colostomy bag may fail. Then there is everything that comes with having the bag, which I would have for at least a year. It would mean a big change to my lifestyle in the short-term, but hopefully adapting wouldn’t take long and I’d have a better quality of life overall.
The alternative is continuing with medical therapy. At this point, that means waiting on the biologic to take effect. As far as I can tell, best case scenario is I start to go into remission and I can slowly wheen off a few of the drugs. It would mean fewer changes to my lifestyle now, but I’m a little concerned about how this will impact me in the years to come. IF I go into remission, I will still need to be monitored regularly (blood tests, colonoscopies, etc.) as my immunosuppression will remain quite high. I’m at a higher risk of contracting other illnesses, from common colds to bowel cancer and could end up admitted to hospital for secondary complications.
I also wonder how many of the symptoms I currently experience are a result of the medication or the flare. I know the drugs have helped alleviate some of the IBD related issues, but if continuing down the medical therapy path is just a trading of symptoms, what is the real return? And this is the best case scenario.
I don’t know that I’m so convinced surgery is the way to go that I want to push for it just yet, but I’m starting to see the benefits. Talking with my specialist today (who clearly still sees a benefit in medical therapy), I think we’ve come up with a plan we’re both fairly happy with.
Once my blood results have improved to an acceptable level (2-3 days maybe), I’ll be free to head home. Next week, I will have my biologic dose and keep an eye out over the next 3-4 weeks for improvements in my symptoms before my outpatient’s appointment. If they improve, we keep going with the biologic treatment. If it doesn’t appear to be helping, or my symptoms worsen, then I will have a colonoscopy to check the severity of the inflammation directly. If the scope doesn’t show too much damage, we may temporarily replace my liver anti-rejection medication with another type of immunosuppressant to give the biologic more time to kick in. Otherwise, surgery will probably become the preferred option.
It’s still not the clear-cut solution I was hoping for, but it’s a way forward. After a week of weighing up my options, I’m glad to have a little more time. I’m no longer convinced the drugs will do the trick, but if another month or two is the time needed to tip the scales in favour of either, I can wait. This still isn’t a decision I’m ready to make, but it’s starting to look like I’m just putting off the inevitable.
Despite the situation, this admission has been pretty good. I’ve spent most of it sleeping, eating, or playing card games on my laptop (because I’m really a 70 year old retiree). Regardless, I can’t wait to get out. Thank you to everyone for your lovely messages of support over the last few days, and a special thanks to those who’ve come to visit me. You stop me going crazy in here!