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Reply to "Success stories to give me hope"

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!   

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