I second whoever posted about success stories quickly move off of groups like this. Most people call them a support group and if you are doing well you don't need more support..... I like to check in sometime and lurk around. It is really helpful. My story started when I was diagnosed at age 19-- first bout was probably at age 17 with colitis but like many of up I had c-diff and after that treatment I was better for just over a year and it was assumed that it was just simply due to antibiotic treatment. Often had more bowel issues prior to that, but, hey-- many do. After having more bleeding and anemia and syncope at age 19 diagnosis was made and remission after just a couple of weeks of prednisone. Meds in the early 1990's were too expensive at the time for me without insurance and after about 6 months without any problems I did not take meds for a few years with only intermittent problems with stooling that were largely ignored (youth, invincibility, finances, etc--we all have reasons). bad flare at around age 27 and then followed up by being a model patient after that. It worsened over the years but finally the last year it started to worsen and without really realizing how bad I actually felt. I was just resigned to the issues. I felt bad but was not bleeding- just stooling 20+ times a day. by that time I was at every 6 month colonoscopies and at that routine scope the GI doc thought I was lying about not passing out and functioning. I was admitted with high dose solumedrol and had remission and felt good but returned to stooling 20 + times after just 2 days off IV steroids. I was eating over 15,000 calories a day and still losing weight.... lost from 240 to 165 ( I'm 6'3") and i was re-admitted for about a month. Steroids worked and I felt good but after 23 days in hospital I managed to get transferred to Mayo in arizona. Dec 23 2008 - I got the first of what wound up being a 3 stage repair. I had such poor nutrition and large steroids they could not repair in the expected one or two steps. When i was first diagnosed i had said i would rather be dead than have a bag. I was scared about all the complications- possible incompetence, but i had a family and had 5 kids- one adopted only a week before going into the hospital. Having that ostomy bag was the first time in YEARS that I had felt good. I gained weight, finally had take down stage 3 after 7 months. NOW--- 12 1/2 years later -- after 2 more kids, I still feel better than the 5 years prior to surgery. Only take some imodium or lomotil... no complications. Even chronic joint pains stopped. I got good and healthy and fit..... then like many of us now somewhat over weight. Really no food restrictions. Food does go through fast- real high sugar foods will make it go through faster-- 4 hours later. some things slow down transit time-- rice, noodles, cheeze. I tried all the fiber tricks but mostly than makes more gas. There is NO trying fart after a j pouch-- too risky-- so if i get gassy-- just have to sit down to stool / pass gass. I still have an occasionaly "phantom ostomy burn" type pain. I follow up with surgeon every 2 years for a scope to look at pouch but it no longer needs a prep!!! Soooo over 12 years without having to have a full bowel prep!!
There is really light after surgery for MANY MANY people. I have now met 10-12 others-- one with an early form of j-pouch done back in the 1980's.. still going strong. Many of those people may be on the forum here. I have realized that living with this for so long and now doing well will allow me to support people in a way that I could not when i was in the middle of the crisis that usually accompanies getting out surgery.
Stay strong!!! LIVE WELL!