06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
As I read your post, it made me sick. I know exactly how you feel because your story is a reflection of my own.
I have been sick for almost 3 years and have had a series of problems (i.e. ischemic colitis, intuscusseption, uc, constipation, etc) Most recently I have been diagnosed with a stricture (a narrowing of the large intestine) Since June of 2007, I have worked with numerous GI's and finally went to a colon/rectal surgeon in Sept of 2009. He put me through a CT scan w/contrast, Colonoscopy, Barium enema and a Sitz Marker Study. Both the CT and the scope stated I had the stricture but the enema "appeared" normal however, it stated that it was not able to see some areas because of overlap. I couldn't understand why if I had almost 3 years of history (that continues to get progressively worse) and the recent tests that were given showed a problem, the surgeon was ready to dismiss it and told me to use OTC Align. I did this and 2 weeks later I was sicker than when I first started seeing him (9/07). I called again and he told me to "go on a liquid diet". This was a short term fix but was not going to help me long term. Finally, My husband and I made an appt and went in to see him together with the intent we would get a game plan together. I was beside myself when the Dr treated my husband and I like gum on the bottom of his shoe. He seemed to think I was trying to rush into surgery. I tried explaining that I didn't want a surgery if there was another way to give me my life back but what I didn't want was to end up with an emergency surgery. He kept asking me if I wanted to "die or have a stroke on the table" or end up with a "bag". I was insulted and angry at this point. I told him what I wanted was for a dr to take me seriously and to help me. He then changed his tune a bit and said "your case is complicated". He ordered the sitz marker study. Long story short - I failed it. All 24 markers collected in the same area of my colon. He called me on 12/22 saying that I failed the test "miserably" however, it was "clear" to him that he can now "help me". I was silent for a moment and then I asked "how can you help me"? He told me by performing surgery. He then added that he would still like a 2nd opinion. I welcomed this because I think it is the wise thing to do. I went to a Dr. at OSU for the 2nd opinion. Prior to my visit I was required to collect a CD and the reports of all the recent tests that I had. I did this and sent them to him 2 weeks prior to my visit (as instructed). When I met with him, he did not exam me and asked me several questions. At that point he said he didn't think I had a stricture and that he was going to take this in a "whole different direction". He wanted me to have another test. I was opposed to this because the test he wanted to give me could get stuck if I had a stricture. I asked him if he was going to review my history and the rest test studies and he said he would, "later". I went home, canceled the test his office scheduled for me, canceled the appt with him and with the original surgeon I had been seeing. I then picked up the phone and called The Mayo Clinic in Rochester, MN.
I know this was a long winded answer for you but I am willing to bet you can relate to some of my story. I would encourage you to go to the Mayo clinic. I researched them and they are the #1 clinic in the country for digestive issues. The Dr's all work together and talk/collaborate. I figure if they can not find the problem and be able to fix it - no one can.
I believe that my illness is bigger than me and not something I can do by myself. I pray to God a lot and I have given this to Him to help me through. I will pray for you and that you too. Only you can make the right decision for yourself.
I know very well how easy it is to want to give up. Please don't. Surround yourself with family, friends or this forum of friends. You have to be your own advocate when dealing with your health.
Please keep us posted. Please don't give up. Stand tall and strong.
I wish you the very best and the strength to work through this.
Take care -
I dont knowthe key to success,but the key to failure
is trying to please everybody!!!!!!!!!!!
Life becomes harder for us, when we live life for others!!!
Without music, life would be a mistake!!!!!!!!!
Im not young enough to know everything!!!!!!!!