Hi, this is my first post and I need some advice/support/encouragement... as I am a bit lost what I should do.
I was diagnosed with pancolitis in May 2016. Main symptoms are gas, loose stool, frequency, urgency, rectal pain and tiredness. When I was diagnosed, I was first started on Asacol and later a course of Clipper (with budesonide foam enema). That put me into remission for 3 to 4 months until early this year, my symptoms returned despite Asacol and my GI asked me to try Cortiment MMX as I did not want to go on Prednisolone. Things have not improved after a few weeks and I started to have more blood and cramps - they started me on Prednisolone but within a week, I ended up to have 10 times a day and was admitted to hospital for a severe flare. They put me on iv steroid but I did not respond well and finally, they started me on infliximab infusion as my rescue treatment before surgery. Infliximab works and at the same time, I was also started on azathioprine (have been taken for 6 months). I managed to tail off Prednisolone within 2 to 3 months and returned to work after 10-week off work. Unfortunately, symptoms returned a few weeks after returning to work but it is a mild flare and I am still on infliximab which I think it has helped. I restarted cortiment MMX and the foam enema but it did not work and in two weeks, I finally went back on prednisolone 20mg as it is a mild flare and I still manage to work. Things started to improve with prednisolone - not 100% but I can function okay. I went on holiday and enjoyed my holiday and when I returned, I had another infliximab infusion (which my GI has increased the frequency from every 8 weeks to every 6 weeks). To my surprise, despite the infliximab, my symptoms got worse a few days after the infusion and even increased the prednisolone to 40mg, it did not work and I was back to the hospital again for iv steroid in late September. My response to iv steroid is suboptimal and they gave me an extra infliximab infusion (which is pretty risky as I had that 2 weeks before) which seems to have done the trick - bowel back to normal with formed poop! Now I am on infliximab every 4 week and taper steroid (currently on 17.5mg daily). I have bad side effects from steroid - not sleep well, difficult to concentrate, moody and also very hungry and put on weight! Last week, things are a bit less stable for my bowel (more loose stool and more gas, after reduction of steroid to 20mg) and my GI asked me to slow the taper.
I have seen the surgeon again in my second admission and will have an appointment to see him next Monday for further discussion. My GI said I can try vedolizumab if my symptoms get worse despite the current medications combination but he is not very optimistic it will work. So far, my bowel is relatively okay and I will say I am largely in remission, although this is my last week before the infusion and my stool becomes looser. I have a calprotectin level done last week and it is 98 (the worse I have had is >1800), although it is worse than 68 a few weeks ago.
I am taking the supplements and also have Chinese herbal medicine - it probably helps a bit but still does not seem to give me any longer stability.
I just think I have enough for the unpredictable nature of my UC and I have done all the things I can do to try to prevent a flare but still, end up in a severe flare and in hospital. I am off work again now and thankfully they are supportive - however, I find it hard to live a life like this, not knowing when I will flare again and also whether I can come off steroid or not (my "gut" feeling is that I may be steroid dependent).
I am prepared for surgery including the stoma but obviously, this is a big decision and I am wondering whether I should hold on a bit longer. If I have the surgery now, at least I am in a relatively good state, rather than in an emergency. They told me that if I end up in the hospital for another flare, or if I cannot come off steroid, surgery will be my only option.
I know everyone is different and it is down to the individual - this makes it tougher to decide. My family thinks I should wait a bit longer but I am not sure. If you were me, would you wait, or would you opt for elective surgery now, rather than waiting for another flare?
One thing bothers me a lot is my energy level/fatigue, which is very low from time to time and I find it hard - it may be the steroid but I think it is also the UC as well. For those who have surgery, will surgery help the fatigue/low energy?
Sorry for the long post but I am feeling rather confused and lost...
Pancolitis diagnosed in May 16; two hospital admissions for iv steroid in 17
Medications tried: Asacol, Clipper (Beclometasone), Cortiment MMX
Current treatment: Infliximab 5mg/kg every 4 weeks, Prednisolone (tapering), Azathioprine 150mg daily, Budesonide foam enema as required, vit.D-calcium. Also taking supplements (Omega 3, Tumeric, Glutamine, multi-vitamin) and even Chinese herbal medicine