Hi,
I am a 28 year old, female and I was diagnosed with ulcerative colitis in 2003. A few weeks ago on May 2, 2012 I had emergency surgery to remove my entire colon. It was a near death experience and extremely traumatic for me. I am now recovering and living with an ileostomy bag until my reversal surgery is scheduled. I am having a lot of trouble adjusting emotionally with all the physical changes to my body and don't really know where to go for help. I am experiencing a lot of depression and insecurity issues. Being a student and working part-time I do not have insurance so affording a therapist has been a challenge. Does anyone know of any support groups or anywhere I could go for help in the Chicago area? I will be going through two more surgeries this summer and I want to make sure I have people to talk to that can relate to what I am experiencing. Please let me know.
Thanks,
Loren
Reply posted for MurphyL1.
Here is my two cents. I would look into the Department of Health and Welfare to see if they have a program that can help you either with the meds, doctor bills, or counseling. I would also look into Vocational Rehabilitation to see if there is something that they can do to help you. You might find with these two places and asking questions, they can at least give you information that might be able to help you.
Reply posted for MurphyL1.
I had the surgery when i was 29. They removed the whole colon just like you. I had the ilistomy bag and it sucked but i got through with it. They reversed it 6 months later. Here are some tips, I changed the bag everyday at night I did not wait three days like they told me too. Also, I bought a belly band like the ones they used to keep your stomach in. It still let my bag get full with out leaking. I think pregnant people wear it sometimes. Another thing i did was that i went down and saw the nurses alot they always gave me free stuff like bags, creams and all sorts of good stuff. Also, I tried out five different bags until i found the right one. Like you i had my surgery in may. My summer was good i just found activities that worked for me. I did not run that much i walked instead, use the belly band. Also ask your surgeon if there is anybody else your age that has have the surgery. Anyways, four years have passed and i am back to normal. I am taking entocort which helps out alot better than predisone. You will get through with this and its only 6 months out of your life which is not much at all if you think about it. I have been dealing with this since i was 18 years old. You can email if you have questions
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