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6 Posts
Hello. I am new here. I am so glad to have found this forum. I have been having bowel problems since I was 19. Started suddenly one night when I awoke to what I thought was a stomach virus but then never got better. I went through many many tests just to end up being told back then I was making it all up and it was in my head, even though some tests showed inflammation in my intestines, I was easily blown off as a typical teen manifesting my troubles. The drs I saw back then made me never trust drs again, and I have gone years without seeing a dr even for other problems. Here I am today 31 and I am suffering more now than I ever have. I never ever leave my home. The 1 trip I decided to TRY to go out with my kids was catastrophic for me mentally as I had a urgent GOT TO GO NOW diarrhea episode and when I got to the bathroom, it was out of service. I had an accident on myself in front of everyone! I had to walk with my 2 kids all the way back through the store as the manager said she could not let me in to the bathrooms to clean up some and that I was causing other customers to leave and I had to get out of her store.I had to walk with the manager behind me, several store employees, my 2 kids all the way back across the store in utter embarrassment. After that is when I refused to leave my home at all. I get outside in my yard at my house but never actually go anywhere. On a normal day I can have 4+ diarrhea bowel movements, all are extremely painful with horrible stomach cramps and I have less than a minute to be on the toilet or I will have an accident. Then on a bad day I can go 15 times in a day. I also suffer from daily nausea, it never goes away but when my bowels are worse my nausea is worse. I finally, after years of just feeling hopeless and being totally isolated, decided to risk going out to a new dr that came to town 6 months ago.It is terrible fearing an accident.She did a colonoscopy 6 months ago that visually looked fine but a biopsy did come back showing inflammation with unknown cause. Blood work was all normal and stool sample all normal. After the colonoscopy my intestines and stomach went crazy on me. Not sure why or how but that test made everything so much more severe,I had no idea how severe things could be until then, and that is when I started refusing to leave my house. I did not even go back to the dr after the colonoscopy for fear of having an accident as I was going 10+ times a day, I even am awakened at 2am,3am,4am out of dead sleep with diarhea cramps and must get to bathroom before I am even awake. Finally, after many months of wanting to go back to her and not, I decided I cannot live this way. I went back in to see her yesterday,and yes I had an accident but I was almost home. She has scheduled me to have the light run into my stomach, more blood work, and another stool sample. She is not sure if I have IBS or IBD but said it seems more to be IBS, yet tests in the past and a current biopsy from latest colonoscopy showed SOME inflammation in my intestines, she still cannot tell which I have. No anti-diarrheal OTC med works, not at all and so she tried me on Lomotil. That did not work either I took 8 pills in a day as she directed and still would have diarrhea and I thought I was going to die from the stomach pains it caused plus it made me vomit terribly. She now wants me to try Levison but I am nervous because I have irregular heart beats and afraid the med will cause me more heart troubles. I have NO friends, my family does NOT understand and have actually blammed ME for my diarrhea, my hubby has to be the one to work and do everything like shopping and everything. I am depressed thanks TO my bowel troubles. I just want to be able to go out again. Nothing helps, I have tried probiotics, calcium, I have tried watching everything I eat, there is nothing that makes the diarrhea even slightly better or helps, fiber makes it worse, exercising does nothing but cause me to go more often. Herbs do not work, Align does nothing, and I just cry most days.I had my gallbladder removed several years ago. I have tried cholestyramine and no help there, I developed Intraheptaic Cholestasis of Pregnancy in 2005 and it helped some when pregnant but not afterwards. I do not know what to do. I want to have a life again, this had been totally disabling for me. Having no friends or others who understand makes it that much harder.How does everyone else deal with this? Anyone have diarrhea as bad as I do on a daily basis? I do not know what else to do.Before this became totally disabling for me I was full of life, I LOVE being out doors and going places and being out and now I cannot do any of those things. Being able to read others stories and have a place to talk about this is such a great help for me, as I have had NO ONE to talk about this ever. If anyone can possibly give any advice or other opinions on ANYTHING else to try or anything I would GREATLY APPRECIATE it!!! Thanks.....