19 and scared. Surgery?

Sorry you are not feeling well, this disease sucks! There is hope though - I'm definitely pro surgery. I was 24 and pregnant when I was diagnosed, and had a severe flare up (pancolitis) from the get go after I had my daughter. Tried everything just trying to put off surgery but in the back of my mind I knew it was inevitable. After a year and a half of failed meds, diet modifications, quack doctors 'cures' (lol), being housebound, having accidents, wearing depends, the list goes on! I had enough! I had surgery (colon removal and j pouch creation) in December. I bounced back from surgery within a few weeks, got adjusted to my temp ileostomy and now I feel like a new person! Being young is definitely an advantage with these surgeries I think.

One thing to consider when thinking about surgery is making the choice yourself and preparing mentally for it, rather than not having a choice in an emergency situation. I almost didn't have the choice with my first flare up after I had my daughter. My colon had ulcers so deep they almost perforated, I was lucky I didn't have to have an emergency surgery then. I didn't want to be in that situation again.

I could go on forever about why you should have surgery, I'm definitely for it since I was never truly in remission. But in the end you know your body best, you know deep down what is best for you and only you can make that choice. You know what you go through every day with this disease and how it feels.

And yes, the ostomy forum is very helpful. You might see discouraging stuff on there but there are also success stories. But mostly, people who are healthy don't come on the forums because they are out enjoying life! Some people still hang around, I think I might be becoming one of those :)

Ann, GI docs almost always discourage surgery, especially in women. I had surgery against the advice if my longtime GI, who has issues w the idea of a colostomy bag. All the surgeons said I was more than ready and surgery was my only option. IMO, docs have a financial reason to keep you on meds - the pharma companies who line their pockets ...

Here's a YouTube video blog that may be helpful.

www.youtube.com/user/IrisUCVlog?feature=

PSUDOC said...
Ann, GI docs almost always discourage surgery, especially in women. I had surgery against the advice if my longtime GI, who has issues w the idea of a colostomy bag. All the surgeons said I was more than ready and surgery was my only option. IMO, docs have a financial reason to keep you on meds - the pharma companies who line their pockets ...

Except I don't notice any difference in Swedish doctors that don't have that incentive at all (almost the opposite). I think the conspiracy theories on these boards are over the line sometimes. Why not just guess that the GI docs don't recommend surgery because that is not their field and every patient that goes to surgery is a "defeat" for them? Sounds more reasonable.

To AnnAmaze: I think you should get a second opinion by another GI doctor on your medication and options of further medication. But if that does not work out (pred, biologics, 6mp, antibiotics etc does not work for you) there is no shame in surgery and a lot of people get a vastly improved life.

Sure, some people struggle for years and years but what do they miss during those years? How was their college experience? Did they spend 3 months traveling just like they wanted? Did they join their friends on that sailboat that summer? How many parties did they decline? How many romantic connections died out? How much time did they spend thinking about this disease? Sugery does not mean no complications or becoming perfectly healthy, but I think most will at least get better than being a constant bad flare.