how far will you let it go before you consider surgery

I am just wondering.  I have had uc for 5 years and never found anything that put me in complete remission.  I know i will never have a normal bm in my life.  I stools are about the size of my 15 lb dog.  They said that my colon had scrank.  I still have to know where every bathroom is and fear to go out on the boat.  I don't know.  It is a big life decision because i am only 25 with a wonderful husband and 2 small children.

Are you the mom you want to be with your UC though? In my mind... I'm 22..married to a wonderful husband... no kids yet and I definitely want them! But In my mind... I wont be the mom I want to be because I'll be too worried about bathrooms... I'll be in too much pain or too sick. I'd not be able to bring them to places like... out on a boat... to the park if there aren't bathrooms... out on long walks... anything that required long car rides or not knowing where bathrooms are...etc.

just bringing them to school every morning... what if i were stuck in the bathroom?

Just things like that I guess? My goal is def to be a mom...so surgery sounds like it would help me be one.

I had surgery for two reasons; one when I realized I had no quality of life and two, when I believed it was impossible for me to gain remission in 2 year flare.  I gave up so much of my life in the two year flare.  I couldn't commit to anything and lost out on international travel and I can't tell you how many social events.  Surgery for me gave me my life back.  I can travel at whim, and have not declined a social event due to my health the past 8 years, and take no meds.  I have my life back and then some.

Sue

I can tell you how far I let it go.

I was diagnosed at 13 and like you never went into remission. After missing most of my freshman year of highschool and spending 2 seprate week to week and half long visits in the hospital I was finally considered under control on 12 ascol pills a day 250 mg of Imuran and going on and off Pregnison every 6 to 9 months. I did this till my senior year of highschool in which i started spending about a week out of every 6 to 8 months in the hospital. when I was "under control" i would either push my way through the pain or i would spend alot of time in bed. I did manage to play football in highschool but it was in lue of constantly going back on pregnison because of flare ups. I told myself I had a normal life but I know I didn't. still surgery at 17 or 18 was a huge decision I didn't want make. I went to college and continued my routine of high dosages of medication and pushing through alot of pain. which on top of the medications caused me to have migraines. I was on alot of pain medication as well. when I came home last summer and spent another week in the hospital I had finally decided it was time. I got the first surgery in august and spent a month with a colostomy bag...in which time I still managed to go for walks, sit and talk with my friends, and attend a very light load of college classes. after the reconection surgery (for the J pouch) which I got in september I was down for about 2 weeks before I felt really able to do anything. By my birthday in November i was working and going to school and going out with friends on a regular basis. It's now been near 7 months and i feel amazing. I work out, run, go to school and work and still have energy to spare. I still keep an eye on where the bathrooms are but on a normal day i'm down to about 3 or 4 Bowl Movements a day. It's an adjustment but it's also better than I could have ever imagined. I have recently looked into joining the army and my surgeon actually cleared me to do it. I am waiting on my doctor for the migraine clearence...which p.s. I no longer have the migraines. I take no medications and I feel wonderful. It's an adjustment but one i'm glad i made. To tell you the truth if you feel you can keep going as is you should hold out, however I would say do not hold out so long that you HAVE to get the surgery, because you may not have as many options if you do. There are a few different types of surgeries and I would recommend looking at them all on your own as well as taking to your GI about them I have a big scar on my stomach but that is because of how I chose to have the surgery done because of how i'm built. My dad has a permanant Colostomy bag... I like my way better... Wish you luck

John

My daughter had 3 big flares. Each one kept her out of high school for 7-9 weeks at a time. In between she was great (no urgency, no worrying about bathrooms, etc). She never had to go to the hospital for her flares. But each time she needed stronger meds. And prednisone.
She didn't want to be on heavy hitting drugs for another 60+ years (she was 17 at the time). She didn't want to worry about when the next flare would come and how long she would be down for. She didn't want to worry about how UC would affect her going to college. She didn't want to worry about how pregnancy would affect her UC (as many have discussed). She didn't want to worry about having to be a mother during a huge flare.
She wanted to have an average high school experience (something she only had a taste of in 9th grade). She didn't want to miss many of the things she missed in 10th and 11th grade.
So at the tail end of her last flare last spring, we consulted with a surgeon (something we had planned to do before she began that flare). As scared as she was, she wanted it. She had step 1 in July, spent the summer recuperating and adjusting. She began senior year with her ostomy but was healthy. In November she had step 2. She had a quick recovery.
This has been exactly the type of year she hoped for. Wonderful times, wonderful memories, wonderful friends. No medications. She can go many hours without worrying about where the bathroom is. She may know she needs to go but can hold it for a long time. She is looking forward to college without worrying about UC.

I can tell you that i let mine go almost 8 years too long!
I got UC in May 0f 1999 and spent the next 8 years in and out of the hospital, missing work, losing jobs, wasting hours in the bathroom and basically losing my quality of life completly!
When i got pregnant in 2004 i went into complete remission. And that was amazing! I was so happy and felt so good again.
After my son was born in June 2005 i went back into a horrible flare and basically stayed that way until August 2006 when i started remicade. Having my son and not being able to do things with him was killing me, it was awful, i couldnt play with him or take him places and like you i worried about school i would have had to get up at 5 am just to be well enough by time to take him to school! and then sit in the line for 30 minutes, no way i could do that!
I had thought of surgery, but wasnt sure. I can tell you the exact moment i decided though. We were at the beach, my son had just turned 1 it was July 2006 and he went off with my family to go walk on the beach for the first time and be able to actually get in the ocean and play for the first time, and i was stuck in the house using the bathroom! And at that moment, i decided, this thing is going!
And when we got back i went to the dr and said, take it out! He talked me into remicade and i should have said no, but i tried it and wasted almost a year with that failing! Finally on April 17 2007 (i just celebrated my new birthday!) I had this awful thing out and life is great now!
I think the decider should be when you have lost your quality of life and you are not the person you want to be because of a colon that doesnt even want you anyway, lol.
I seriously doubt that your husband will be grossed out by it, he will be happy to have you healthy! And honestly, if you are anythign like me, you probably have some misconceptions abotu what it will be like having a bag. Even after doing lots of research i was still kind of grossed out by it, it wasnt until i talked to people with them and saw the stuff you use that i got over that!

Good luck with your decision!

Summerstorm - your story is very interesting! Really made me realise how far I wanna go with the medication testing and the time I am willing to give up trying to achieve remisssion... Thank you for sharing :)

It only took a year for me to decide on the surgery route and here was my thought process and experiences that made me come to my final decision for surgery. I concluded the "light" medicines I was taking were doing more harm than good (20 + pills a day for a year without improvement...and the other "stronger" medicines down the road have side effects that include death...how ridiculous). I never went into remission, I felt tired all the time and basically I was just existing and really wasn't living any so called life...unless you like laying on the couch or bed and watching TV all day, sleeping for 14 hours+ and still being chronically fatigued, living in a bathroom and feeling like crap (literally and figuratively), etc.

I figured even if I found the magical combination of foods, herbs, and medicines and went into remission, how long would that last, would my life always be a constant yo-yo between being somewhat healthy and sick and living with a suppressed immune system for the rest of my life. Then ultimately, 30 or 40 years down the road, the very high probability of being diagnosed with colon cancer and having to go through these surgeries at age 50 or 60 anyway when I could have them now at age 30. Why should I sacrifice the rest of my body, and my future quality of life, by trying to salvage a diseased organ that I could live a near normal life without??? The clincher for surgery was an answer I got from my GI doctor to my question...If I ever reach remission is my colon normal? He basically said no, even if you feel normal and everything "looks and functions fine" on the cellular level it is still inflamed (your immune system is still attacking it), this is why your colon cancer risk skyrockets (up to 30x normal) 2 to 3 decades after the initial UC diagnosis...this is why you need yearly colonoscopies 10 years after a UC diagnosis whether your in remission or not.

So for me it was a no brainer to have surgery right away. I figured I only lost 2 years of my life to UC, but now I'm making up for that lost time.

Hope this helps.