Posted 5/7/2013 11:11 PM (GMT -7)
After living with crohns colitis for 14 years I am at the top of my mountain. My disease has gotten to a point where I have to make big decisions; surgery vs meds. I can step down the way I came, try a different med (remicade or humira) maybe they will get me into remission, heal my fistulas so that I can have my temporary ileostomy reversed, no more stoma (although in a way i would miss Sheila). But when would I climb the mountain again and how long does it take to walk back down. How far would i walk back down before meds fail again and I am back at the peak again.
Or I can step down the other side of the mountain. A new path, a new life, a new focus. I can change my daily life with crohns to one of a normal person, do what I want, when I want to, eat what i want to, enjoy my family and be able to enjoy them. Sure there are risks to surgery ( proctocolectomy with end ileostomy) and likely bumps along the road to recovery but surely it can't be worse than the path up this mountain. At least I would have some control back and i can rebuild my life again. My husband and i are both starting new jobs, moving to a new house ( once I am recovered from surgery), and our relationship has grown stronger through the trials of the past few hellish years with crohns colitis.
I cannot do this alone and i am glad that I have such a strong support team from my family, friends, doctors and community. Healing well has given me some sanity knowing that many others are facing this decision too. With everyone beside me I have hope that the sun will shine bright on me tomorrow and for the rest of my days.
Sometimes it is scary walking in the dark, not knowing what you will step into next or where the road is taking you.
I have come to realize over the years that i have to make decisions for myself, do what is best for me. I still have to think of my family when making these decisions but having them believe that i will make the right decisions makes it easier to decide where my foot falls next. I may be letting down my friends, family or doctors by not trying every medicine in the world to get my body under control. I may be taking unnecessary risk by not trying remicade, humira etc. Ultimately I am looking at my future, my quality of life and the future of my family. What decision is best, that is for ME to decide.
This road would be so much easier without crohns. If surgery is the answer to my problems it is an extremely different answer than I ever expected. It is knocking on my door soon (just waiting for the date now that most of the preliminary tests, scans,Dr visits are done). I will answer the door with a fluttering heart and a huge smile knowing that my future is bright and I can step out to meet it.
Female 32 dx with UC in 2004, rediagnosed with Crohns Colitis Sept 2012
Seton and Fistula surgery Sept 2012
Loop Ileostomy Dec 16, 2012