Thursday, December 12, 2013

If I only knew then...what I know now.

One of these days.. I will make myself sit down and go over all that has happened over the last few months. I haven't been updating because I am so busy with my 3 girls (although, I wish it was because I had nothing to say.)

I will say that at this point, I wish we never had the colectomy. I wish we would have pushed further and tried more medications. I know once UC patients get to a certain stage in the disease, that there isn't anything left to do but remove the colon.. however, I feel that I was so uneducated on various methods that are out there at the time that I felt as tho I had no other option. I fooled myself into thinking the colectomy would be our saving grace, and that it would allow Alexis to live a NORMAL, HEALTHY life... because, like they say..she would be CURED! Unfortunately, it has only lead to a whole other slew of problems. More surgeries, PTSD, anal stenosis (that includes at home dilation done by yours truly :/ ) and long term antibiotics.  We are currently hoping and praying we aren't dealing with Chronic Pouchitis.

If anyone has any immediate questions, email me. I will respond and share as much info as I can.

Until next time!


  1. I am keeping you and your family in my thoughts and prayers! Sending {{{HUGS}}} too.

  2. I'm so sorry to hear that she is not doing well. I think it is important to not go back in time and think about the what if's. You tried everything you could at the time. When I think about my surgery I think of it like this: I either could plan the surgery and get it done or keep fighting/trying new treatments that don't end up working and end up having emergency surgery that is unplanned. I don't think you are giving yourself enough credit when you say that you weren't educated enough as well. Reading your blogs it is apparent that you know a lot more than most parents with kids that have IBD. My parents didn't know anything and refused to even acknowledge my disease and the symptoms I was having - you are a great mother! I don't know if you know about Frank Garufi J?? His son has Crohn's and was diagnosed at three (he had symptoms at 2 months old). Here is a direct link to his facebook

    Keep fighting and stay strong!