Hello to all on this board:
I have dealt with multiple health problems for much of my adult life, namely spinal bifida requiring multiple surgeries, fibromyalgia, chronic fatigue syndrome, diabetes, and hypertension. about 5 years ago, after my last spine surgery, I began wearing a duragesic pain patch and it has been the best thing to control chronic pain that I deal with daily. Also, after my last lumbar spine surgery, I began dealing with constipation. Of course, it was assumed that perhaps the narcotic in the patch could be causing or at least contributing to the constipation. But when followed up by a GI, I was told I had one more "classic" chronic problem and that was IBS. So for about 3-4 years, I used Miralax once or twice a day. It seemed to help in the beginning and for awhile, but gradually helped less and less over time. In Feb 2007, it all came to an abrupt halt. I was away on vacation and passed out trying to go to the bathroom (severe pain and rectal bleeding). My family called an ambulance and I was taken to the hospital. I was found to be obstructed by my own stool. I will skip over the gory details, but after 5 days of hospitalization, an attempt to do 2 colonoscopies, then another 5 months once we returned home of tests after tests and doctor after doctor, I was told that more than likely, my nerves in my spine caused my colon to shut down. During this time, I struggled and worried constantly to manage to go once or twice a week. I was told I had no choice but to remove the large colon. They removed all but 5-6 inches in May 2007 and what a horrible experience the post op and recovery was! I did not think I was going to survive it with one set back after another, but after a 10 day hospital stay, things started looking up and I came home. All in all, I have to say, I then began to do well. BUT, I am always extremely gassy and the noises - well, it sounds like a freight train moving around in my belly. I go every day, sometimes once, but usually at least 2-3 times, so I have been happy with that result. However, I have not ever felt like I've gotten my strength back and have complained of more fatigue than ever (even knowing I have the fibromyalgia and chronic fatigue syndrome). I mean, I MUST get a minimum of 12 hours a night sleep, and nap a couple of times during the day on a GOOD day. There are days when I don't even get dressed, much less move from in front of the tv in my recliner chair. And I mean I cannot even force myself to put one foot in front of the other. So, several months ago, they did blood work and found me to be anemic, VERY low in ferritin and folic acid. After being told for a couple of months that I must go back to a GI, I did and after endoscopy and a flex sigmoid, I was told that I am bleeding at the connection - where they connected the small intestine to the rectum. Thus the cause for the anemia. We have begun other tests now and they say that my small intestine has very slow motility and that even though I am going, it takes about 36 hours from ingestion for the waste to pass. The GI is going to "burn" the connection in hopes of stopping the bleeding to get the anemia under control and she has told me to begin taking Domperione, which is only available through Canada, to speed things up in the small intestine. But she also tells me that the burning procedure is not a permanent fix, but that it will "buy me time". So, I am starting to believe that I will end up with a "bag" and am petrified. I don't think I'll ever leave my house if I have to go that drastic and I cannot even imagine recovering from another colon surgery. The last one was brutal. So, what I thought was over a year ago, is still showing its ugly face. Does anyone have a similar experience with a better outlook and outcome? I so need some encouragement and who best to understand than someone who has been where I am at? Thanks for your listening ear and whatever response you might have. I'm glad to know I can come here to swap stories and make friends with others in my shoes.