I have not been able to stop bleeding for 12 months now, keep going to the doctors, hospital, you name it. I have been on Prednisone, Entocort, Salofalk supositories and enemas, acute clear fluid diet, lost 50 lbs way too fast in a few weeks! Asacol 2.4 grams per day and higher, morphine for pain, doesn't work. Sleeping pills, Ativan, stool softeners for the constipation from Morphine, Iron pills, Iron shots, Tube feeding, Heparin shots, lots of hematoma afterwards and brusing, and then bleeding bleeding bleeding. I still take Florastore, acidopillous, GI Digestive enzymnes, GI multi Revitalive shakes, reg vitamins, vitamin D, and salmon oil capsules.
I usually can't hold it for more than a few seconds with severe abdominal cramping, and run to the toilet, but recently, I am pain stricken everyday everywhere, my joints and muscles ache Bad, I often scream when I'm in the bathroom, the abdominal and lower back pain is ridiculous.
I even got Thrush, Shingles, the flu twice and a pulmunary embolism and had to go on Warfarin (blood thinners), then had to see a Cardio Pulminary Specialist and more tests. Then my GI wonderful doctor was in a car accident and passed away! I have been waiting to see another Specialist. I am super drained, tired, cant sleep, closed my company down for the first time in my life feel like I am useless.
I even lost 50% of my hair and had to cut it really short. Drs told me the blood thinner med. did it. Warfarin. I even had a porta cath put into my lower left sub clavical (Dr.s had a very had time putting it in) for my meds because my veins were collasped and I was in need of fluids, meds, electrolites etc.
When they took the porta cath out there were more complications. I still have pain on my left clavical (collar bone) area since June 09. And keep wonder if a nerve was damaged because I have pins and needles in my left foot on a daily basis since then.
So this has been my life for 12 months, I have 2 young kids and a husband, and feel completely useless and dont know what to do anymore. I dont even think my husband can put up with me and this disease. I know my kids are extremely upset. The doctors told me I dont qualify for surgery because of the location of my disease too close to my rectal muscle. They called it Toxic Proctitis, cant find it on the internet anywhere. Has anyone had bleeding like this? What can I do? HELP.