Hi-
I am so tired. I was just recovering from my fall flare and weaning off prednisone when I broke both my feet and needed emergency surgery on 12/30. Have been non weight bearing for 11 weeks now. During this time I continued my pred taper and went off it a month and a half ago. Since then I have been having episodes of violent diarrhea anywhere from 2-5 times a day. These have resulted in an almost constant state of dehydration. In the last month I have had 15 liters of lactated ringers infused. My veins kept blowing the peripheral lines and so they put in a PICC line but that has been nothing but trouble- it took 2 surgeons and 2 hrs to get it in and they told me next time i should just go straight to a central line. So now the picc line isnt working well either- they have flushed it with the clotting busting medicine and it improved slightly but it still isnt great. They think i have so much trauma to that arm that the vein is bruised and is pinching the picc line off. I saw my gastro yesterday and shared how tired i am of being sick and in pain- it is especially fun to be wandering around my house with a walker and an iv pole. I had just graduated to crutches when they put in the picc and now got bumped back to the walker. I was totally prepared for him to hospitalize me at this point since i cant go for more than 2 days without hydration. I started measuring my output and reported that in 24 hrs I had passed 1500 ml of diarrhea. He told me that was almost unbelievable and questioned me twice on how sure I was. He told me to stop my prevacid as that could be causing the diarrhea= despite the fact that i have been on it for 8 yrs. I think that is what has put me over the edge. I had to suggest that i start the prednisone again and that i should infuse every time i have diarrhea. He did agree to do a colonscopy in 3 wks and have me do more stool samples.
I need a new gastro desperately and dont know if anyone will take me on in the midst of a problem or even how fast i can be seen. I dont want to go on like this= i feel like a stroke victim half the time- i cant put together sentences correctly or mix up my words due to the dehydration and my 4 yr old corrects me. It is so sad. I dont know if this is ibs or ibd and dont know how to tell the difference anymore. There hasnt been any blood in my stool but supposedly ibs doesnt cause dehydration let alone chronic dehydration.
Any thoughts.. suggestions.. advise.. I am trying to advocate for myself but i am so tired of all my struggles over the last few weeks and it is hard to fight when you cant think straight.
thanks
Val