Hey Carwyn,
I'm very sorry you're struggling. You're not alone. It's difficult to end up with a poor outcome after the whole process we went through, and after being told that colectomy will cure our UC and all will be great with the pouch.
I just hit one year since takedown and have never had good pouch function. I have difficulty emptying, a prolapse and a persistent sinus tract that has now turned into osteomyelitis (bone infection in my sacrum). Just got the PICC out after 6 weeks of IV antibiotics.
Your comment about wondering how you will progress in your career reminds me of myself. I was in the last 2 years of training (medical) when I was hospitalized for an urgent colectomy. I was inpatient for 5 weeks and missed 3 months of work surrounding that initial surgery, then returned to work with an end ileo. I delayed stage 2 hoping I could complete training. I made it a year until the UC flare in the remaining stump forced the second stage. I felt very good with the end ileo and could finally focus on work. It was a big disappointment to take time off to go through stage 2 but figured I would get it over with. Unfortunately, all hell broke loose and I had numerous complications after stage 2, spending 60 days in the hospital between 2 and 3. That was a very dark period and I thought there is no way I'll complete my program and ever get a job.
I managed to get my dream job while still out on leave recovering from takedown. I went to the interview at 98 lbs swimming in my suit :-), pretending to each at the lunch I was taken out to. During the past year since takedown I've managed to finish training while trying to deal with the sinus tract and infection. I go to work with various lines in, with the VNA coming on the weekends to change dressings. I'm constantly told that I'm the youngest patient on their panel which is supported by the literature they leave showing happy 80 yr olds! It's a weird existence but the other option is not to do it. I recently finished training and started my new position and this current infection has me again wondering if I'll ever be able to do this. To succeed in the career I've invested the last 12 years pursuing. Adding to the worry and guilt is the knowledge that I if I am out sick, I will now burden my colleagues who will have to take care of my panel while I'm gone. So I find myself drifting back into the same mindset as a year ago.
BUT, I wanted to say to you that you will likely surprise yourself in what you can accomplish. I've found that worrying about future complications and hypothetical failures just adds to the stress and causes paralysis. Try to stay in the present and do what you can today, this week. Don't turn down opportunities because you can't imagine succeeding. If you start and discover you can't physically/mentally do it, that's ok. You will be your biggest critic while those around you will be infinitely more understanding. We don't talk a lot on this site about how to navigate professional advancement which can be severely impacted by this disease. The no sex, no sleep, limited diet sucks but so does a young career interrupted and derailed.
I don't want to sound like I've figured all of this out. As I said, the fear of getting sicker and not being able to continue the slog is real. My strategy is to set shorter term goals than many of my colleagues. I'm also considering ditching the pouch and returning to the bag but can't imaging taking time off to do so right now. I do view it as a viable option though.
I wish you the best in your career and say go for it. Accept the position at the Ivy League institution. Better to do it in a fragmented, holding on my your fingertips fashion than not at all!
. Nonetheless I did go and pursue the degree and although it’s been indescribably tough I’m half-way through! Wish me luck!
