Support
Tue, March 15, 2011 11:47 PM
I just joined this forum and would like to express my feelings about having Crohns.
I was diagnosed in August of 99' after having surgery to remove a serious bowel obstruction. I had to live with an Ostomy pouch for 10 months as a result. Since then I have tried various medications. Pentasa, Cimzia, Prednisone, 6mp and so forth. They only meds that seem to work are Pentasa and 6mp. I have suffered through extreme flare-ups over the years, lost weight, sometimes down to 100 lbs. Some of my family members told me that I must have Aids or was on drugs, they pretty much blamed me for getting Crohns.
This past January I had my third surgery to remove another small bowel obstruction that was caused by scar tissue. Luckily this time I will only have the Ostomy until May. I would like to have support with this, someone to talk with, someone who understands what I am going through. Life can be so lonely sometimes.
paul lorinJoined Mar 15, 2011
Sun, April 03, 2011 8:32 PM
Reply posted for paul lorin.
Hi Paul,
What you said about family blaming you really hit home with me. They always say "what did you eat?" or "stress is making the crohns come back". I hate that they can make me feel responsible for my disease. Its hard enough living with crohns and trying new medications that all seem to have serious side effects. Until they walk in my shoes...
I send my thoughts and prayers your way. I'm more recently diagnosed, 2007, and still no conclusive biopsy because i've been on entecort for 4yrs. Maybe it masked all the other endoscopies and colonoscopies. I'm recently diagnosed with an overlapping autoimmune disease, wegeners granulomatos vasculitis. So its been rough and scary. However I haven't nearly gone through what you have with the surgeries and i wish nothing but the best for you in your future. Thank you for sharing your story. it moved me.
johanna
Joined Apr 3, 2011
Mon, March 28, 2011 9:32 AM
Reply posted for rethomp1974.
I have had UC for a little over 2 years. I do not isolate myself and my friends know now. That is not healthy. If your friends know and stay away then they are not your friends. You can do things but watch your foods you eat and take good supplements. Take walks. Be good to yourself. 
Joined Feb 9, 2011
Sat, March 19, 2011 1:40 PM
Reply posted for paul lorin.
My heart goes out to you Paul.
You should try some support group meetings in your area.
I too can relate to your emotional struggles. I morn the loss of my health and my life on a daily basis. I am seeking out grief counseling and support groups. After all, the grief and the lonliness sometimes comes from the social isolation and shyness do to the nature of the illness.
Something Joseph Cambell said is, "It is at the moment you feel most alone, you should come to realize you are with all the world." Ironic isn't it.
rethomp1974Joined Dec 13, 2009