Hi kris! I have been histo free for months now and have no lasting ill effects from it. It had spread to my liver andmy doc was very concerned. He wanted to admit me to the hospital and administer a heavy infusion type med for the histo and then follow up with me taking an drink medicine at home for months. Long story short I freaked out because I did not want to be admitted and have to get another picc line for this heavy drug. So against my doctors wishes I went home and just took the medicine that I drank. It was called sporadox and I took it for six months. I also stopped taking remicade completely and have been off of it for over a year. It never really worked all the way for me so it wasn’t worth the side effects. Now I am histo free and doing the Specific Carbohydrate Diet and takin Low Dose Naltexone each night for my Crohn’s. I go to a naturopath as well as my regular GI. I have pretty severe Crohn’s so I still am having troubles every once in a while when I ate something I can’t tolerate but I really think everyone should looked into scd and ldn! I don’t know if what I did will work for others but it’s worth thinking about. I really hope your issues get better. It’s not fair that Crohn’s meds increase your risk of getting other diseases UGH
That’s interesting to hear! I was already admitted into the hospital when they diagnosed me with histo, and they gave me the IV med for 5 days through a normal port, then sent me home on sporanox. So glad I didn’t get the picc line for that, haha.
Unfortunately we didn’t know at the time that I had Crohn’s in my stomach as well as the preexisting ileocolitis. The acidic environment the sporonox needed had my doctors asking me to drink something with citric acid at every dose, and the easiest source was lemonade. Bad choice, because at my next scope, I had six stomach ulcers!
They’ve switched me to a pill called itraconozole since, which I’m told is less effective but since I had just been vomiting up the sporanox, it was our next best option. Back in May I had almost gotten both histo cleared and Crohn’s symptoms nonexistant, but then I contracted C.diff TWICE in the same month, and now I’m back to square one. (Explosive diarrhea, sleeping most of the day and night, histo levels spiked from 0 to 11 in two weeks.)
My doctor is hesitant to stop remicade because as it is I’m at the maximum reccomended dose at 10mL/kg every four weeks, and when I’m not on an immunosuppressant my body just rejects anything I put in my system and I hit rock bottom fast. 150mg of azathioprene plus remicade is what got me here in the first place, so I’d rather stay with the biologics than go back to azathioprene if I can help it.
Since it’s been a good three years since my ileocolitis first presented itself, when I see my GI for my next infusion on Tuesday I’m going to try to start discussing other possible options, if there are any.
I’m glad to hear that you’ve gotten your symptoms mostly under control, and that you cleared the histo so quickly!! Truly. I’m glad not everyone’s had as wild of a ride as I’ve had for this.
