In my case, I was diagnosed with severe pancolitis (fast and furious)in 2015 and had my first surgery in November that year. My colon was a mess and I did not do well with the only biologic I tried-Remicade. I lost 35 lbs. in a matter of less than 2 mos., no real appetite, TPN, shingles, 2 blood transfusions, tachycardia, a few hospitalizations, including a reaction to Remicade (severe upper back pain after an infusion) and a few weeks in skilled nursing facility. J-pouch was recommended a few times and my sister also had a situation similar to mine, with her S-pouch done fairly quickly as well. I decided to seek a surgeon to follow my case and to be prepared for that possibility. I was in better shape, gained back about 25 lbs. going into surgery and had a follow-up colonoscopy that did not show improvement.
Add my age into this and I made the decision, with my surgeon to go through with it. I was 61 when I started the process and have had the pouch for 4 years. I got back the pathology report which showed moderate to severe pancolitis-severely active. I don’t believe I really went into remission during this time at all. Also wearing depends all the time wasn’t so great. Also, going into surgery I had a case of Erythema Nodosum-a pretty severe skin condition that those with UC can get (though less than 5%).
Is life perfect for me? No, but it is much better than what I went through. Being diagnosed so much older, I had my children and a career. I retired last year, but went back a few days a week. I do home visits which gives me lots of flexibility and opportunities to use bathrooms.
I do remember my surgeon saying that when he has young women considering having children, he would advises performing the colectomy first, allow time for the Mom to have children if she wants and at a later time, the j-pouch.
My sister had her surgeries in her late 20’s and was not able to have children. She had open surgery and quite a bit of scar tissue.