Diverticulitis Support Group

I was born with a spinal cord birth defect. My parents were told i would suffer constipation my entire life as i did not have normal peristolosis in my intestines. For yrs they were correct. No doubt this was helped along by the fact that i was unable to get normal exercise and was incontinent so never was a large water drinker esp when i needed to go out somewhere to prevent excessive urination. My bowels moved once a month the day after my period stopped. In 2004 a person re me to his ureological surgeon as i was having utis every 2 weeks. He examined me and said i had a tear in my vagina and my bladder had slipped partialy through and was being intermittantly srangulated. He called it a coel - seal - and said my only option was surgury. This was done 5-14-2004 at which time the tear was sewn up, a bowel resection was done and a ureostomy bag attached. I was a bit irritated and went to the latest of the 4 drs - ob/gyns - who had done pap smears and pelvic exams on me and asked her how she could misss my bladder sitting in my vagina she admitted she had seen it but had no answer as to why she failed to disclose it to me. The day i was discharged from the bladder surgury i started having killer diarreah. I was discharged to a rehab hospital as a nerve in my left leg had been damaged in the surgury - by the drain - and i needed pt to walk on my crutches again. I was there 3 weeks and had the runs the entire time. They cultured everthing they could but could grow nothing. I ran a fever and had an elevated white count for a time and they suspected c. diff and put me on flagyll. They decided i was lactose intolerant and took away dairy. Nothing helped. When i went back to the surgeon to get the stitches out i asked him and he said i had post op colitis due to my intestines being shocked and going to sleep from the surgury and the only cure was to "wear it out" by eating. Needless to say that did not work either I just added pain to my symptoms. What I call my ground glass feeling that i have to this day. In Oct of 2006 I started having pain from what i thought was hemmeroids. Then started to run a fever and had symptoms of an infection that travelled all over my body. Sinus infection, strep throat, conjuntivitis, upper respiratory infection, stomach flu and uti. All the while this constant pain. In March of 2007 I got a new dr. I asked her to examine me for hemmeroids and she found none but did find a major impaction problem that the diarreah was moving around, 2 pockets in my colon - this by manuel exam only, just as far as a finger can reach - 1 next to my vagina which had caved it in and another to the side. She terms these pockets huge. Apparently you can't call them diverticula anymore after they get this size. But admitted that's what it started as and there might be more pouches past her reach to find. She also said i may have irritable bowel as well. She re me to a gastro dr. and he saw me this yr - i turned 50 and am supposed to start having colonoscopies every so many yrs anyway. He insists i do not have diverticulosis/itis even though my reg dr has felt 2 of them and took me off the senna laxitive she had me on and put me on miralax after 2 days of a salt laxitive - the stuff you drink before a test like a colonoscopy but not go litely this is even more vile if that's possible - because he says he needs to "blow me out". No other reccomendations and no diagnosis of anything. Just says I'm constipated due to my spincter not opening voluntarily due to my birth defect. I asked about the ibs but he thinks it's just that i need to be "blown out" and my stool softened so it can get through "the door". Said if this program didn't work he would have to put me in hospital and de impact me. But he also said he can't do a colonoscopy yet because stool might get caught in the pockets - that aren't diverticula - it's "too dangerous". A few weeks later when this new bowel program wasn't producing results he sent me for an xray. I could feel the impaction there but knew he needed proof so went and pd for an xray. The next am I finally passed the blockage a 4 lb mass - yes i put it in a baggie and weighed it, it would have blocked my toilet anyway - and 2 days later i called the office and reported this. The nurse talked to him and called me back the next day to say the dr saw the stool on the xray but saw no impaction. What do you call 4 lbs. Does anyone normally pass 4 lb lumps of fecal matter? I also would like to know why the surgeon who operated on my bladder and did a bowel resection didn't bother to tell me about the 2 pouches then as well as any others that might be there yet to find. They couldn't have gotton as big as my dr describes in the 3 yrs between the surgury and their discovery by my dr. She says that my lower bowel is deformed as well. Constricted which from reading this site I understand can happen with diverticulitis. It makes it hard to trust the med profession when people just fail to tell you things. They don't out and out lie they just don't tell you everything. I have been experimenting with my own diet and found things that trigger the pain and things i can safely eat. This group has done more for me than 99% of my drs inc the specialists.
Posted on 07/14/08, 03:07 am