I am the mother of a 24 yr old son who got run over by the UC train ten months ago. We have watched him suffer, get depressed, miss work and basically be sick all the time. We treid every drug out there - even a short course of cyclosporin at Mt Sinai this week. We have looked for at least some evidence of benefits from any of these drugs and finally concluded that a life on these meds coupled with feeling miserable, is a sad looking future. Yesterday he had the surgery and I think it was the first night in a year that we have had any peace. He called this morning looking for us to visit and when I asked him how he was, his answer was" actually, not that bad." Wow- it has been a long time since we have heard that.
We now have hope that he will live a normal life - the surgery is a gradual process, but what's that in the course of a lifetime? I have done endless research and as a family we concluded that the upside definitely outweighs the downside. At least in our case and really I think in many - there are so many unhappy people out there suffering with this disease.
Now of course my son's health was deteriorating rapidly - he was getting sicker and sicker - the steroids were messing him up and the immunos were not working - we did not have a lot of options. But when the surgeon came out of the OR, he looked at us and said, - we did the right thing - his colon was very diseased.
As a mother I feel you pain so well - please feel free to contact me if you would like to get updates on how he is doing. I will tell you that today for the first time in so long, we feel hopeful and tremendous relief.
My very best to you
Maria, mother of Anthony, day one after surgery