Impact of not doing anything

Hello all. I hope you are as well as you can be.

I have been in a flare for the last 15 months, the worst of it during my pregnancy and immediately after the baby was born. The balancing act of seeing the GI, surgeon, and family doc with few results and LOTS of side effects were getting to be too much for my life. I needed to spend less time talking about how "dire" my disease is, and more time staring at my precious new daughter, for whom I endured months in hospital and the dreaded side effects of prednisone, as well as some awesome vomiting and horrible diarrhea from Asacol.

I have asked my GI about what would happen (beyond anemia and fatigue) if I just did nothing, at least for now. His response was vague; he mentioned toxic megacolon as a possibility, but not much else.

So does anyone have a good idea about what the long term or short term implications for no treatment are? I mean, if I need to do something that's fine, but removing bits of my colon and/or tolerating life-altering meds would best be addressed after I've spent some time enjoying the spoils of all that suffering. I bled untreated during pregnancy with no diagnosis for over 32 weeks. I had 4 blood transfusions and 6 iron transfusions, as well as a lot of time in bed. I mean, if I only needed to have an iron transfusion once every 6 months for the rest of my life, but I could avoid the side effects of treatment, wouldn't that be better?

Is there an increased risk of cancer? How much of an increase? Can it get worse? Will it get worse for sure? Is there any research or resources that can answer these kinds of questions? How many people who don't have treatment develop toxic megacolon? Is there a certain timeframe when it usually occurs? Are there any other issues that arise in the body as a result of untreated UC?

Thank you in advance for taking the time to answer my questions. I really appreciate what this forum does and how much it makes my life better. Take good care.

I'll second everything Jonny_Murray has shared. I'll also add that the risk of colorectal cancer is significantly elevated for UC sufferers and FAR elevated for UC sufferers who are constantly in flares and/or not using treatment.

If you would rather refuse all medical treatment and live your life and possibly (without treatment it's more like probably) need surgery in the future, I would strongly recommend opting for surgery now, while you're relatively healthy and strong. Most UC patients don't require meds after surgery, and the likelihood is even lower if you opt for a permanent ileostomy instead of trying for a j-pouch (you can Google these terms). If you land in the hospital severely anemic and malnourished and requiring surgery to save your life, the risk for complications will skyrocket compared to if you elect for surgery at a time when your health is relatively stable.