Posted 6/5/2012 12:12 AM (GMT 0)
The specialists are scratching their heads saying I have to live with unbearable pain for the rest of my life! I NEED help please. about 20 years ago I lost all peristalsis in my large bowel and instead of it being an inch in diameter it was about 5 inches and had most of it removed. about 2 years ago I started having big problems again and tests showed I had lost peristalsis in my small bowel also and went in for surgery to have the last of my large bowel and supposedly just a small amount of my small removed. The operation was in Feb last year and was made more complicated by significant adhesion's and it took 9 hours to separate my bowel from my stomach, liver, etc etc etc. I was given a temporary ileostomy (poop bag). I also developed septicemia which resulted in a second operation to "scrape all the pus etc away" (??? I think that was why). Again, I got septicemia! I went in for the ileostomy reversal in July last year where they removed more small bowel because again I had significant complications with bowel adhesion's. Within a week it was apparent I had again developed septicemia! After 2 weeks I still had not opened my bowels and was vomiting faecies for about 2 weeks. Finally they went in and operated again because I had a total bowel obstruction from adhesion's. However, during that operation the surgeon removed too much small bowel and "accidentally" left 3 holes in my small intestine. He refused to do an MRI to see what was going on even though several doctors had ordered 5 in total to see why I was so sick and unresponsive to treatment. The surgeon cancelled all 5 MRIs! My kidneys, liver and heart were shutting down and I had to have my heart restarted several times. Finally the nurses intervened by 1) removing several staples in my tummy to find over 4 liters of faeces came out from the scar on my stomach and I was left with 3 high output fistulas (4 inch deep open holes on my stomach) which took 5 months to heal. 2) the nurses organized for me to get transferred to a hospital in the city where I was finally treated. I was able to open my bowels but 20-30 times a day. My current symptoms are unbearable, intense pain and burning while passing stools, constant spinxter spasming, irregular bleeding from anus, regular bowel spasms from partial bowel obstructions, low magnesium and potassium, low sugar (around 3), low blood pressure (around 65/45). The pain is very mild when I don't eat but the moment I start eating my stomach/bowel ??? starts to spasm and becomes very gassy. The stool content is highly acidic and very yellow. I am on loperamide 2x2 day, 30mg codeine x 3 day, 25mg x 1 endep, 5mg x 1 valium, 10mg when required of Oxy Norm, 25mg x 2 Oxi Contin and 40,000u creon with food. Last month we tried TPN - intravenous feeding which was unsuccessful in decreasing pain and given the risks was discontinued after 2 weeks. I have been told the only option available is to have further surgery to give me a permanent ileostomy but have been advised the risks of surgery are extremely high given my past history. When I had the illeostomy in July last year I still suffered from extreme burning at the connection site and bowel spasms so they cannot guarantee this will help my condition. My general doctor did an internal examination and believes I have a large fissure with several smaller ones but the specialist took a general "look" (not internal examination) and believes I only have a few unremarkable fissures which are not worth investigating. I am basically hoping to find a solution to the spasming and burning when eating. I am at a stage where I have to go 2 to 3 days of NO food until I get so hungry I have to eat (NO fibre) and then go days without eating again. I don't care about how often I open my bowels but the pain is literally unbearable and the pain medication I am on is not affective although the valium does reduce the spasming to some degree but not the burning. I guess I have just shared a lot of very personal information with you...very embarrassing lol but I am certain others have had the same issues as me and surely there are other treatments I can try without risking my life with further surgery! Hopefully someone can help? Thank you!