I had my third and final surgery, June of 2019, where they connected the J-Pouch.
For 12 straight weeks I was going to the bathroom 25 plus times a day, severe pain, and the feeling of shattered glass and razor blades causing the most brutal internal burning. I had to lay still and would have to run back and forth to the bathroom, I was handcuffed to the toilet 24 hours a day.
After scouring through these boards, I diagnosed myself with pouchitis and started Cipro. 24 hours later it was a night and day difference and my symptoms decreased greatly.
I have continued to get worse. I have been on Cipro 3 x a day for one year straight, and have taken four courses of Xiafaxin in the past couple of months. I started Stelara at the end of January and the loading dose reduced the symptoms to tolerable. The loading dose wore off after four weeks.
After it wore off I am in constant brutal pain, feels like a 12 inch long ice pick has been shoved completely into my small intestine, about five inches below the left rib cage. I have constant cramps, severe bloating, internal burning, constant pressure on the tailbone, significant increase in stools and more.
My second Stelara dose was the end of February and towards the end of March the severe symptoms come back, and I basically cant function. The beginning of April my GI had me take a dose of Stelara, and a second dose two weeks later. This combination works well for about four weeks and then the terrible flare-up symptoms come back. I then repeat the same thing, two Stelara doses two weeks apart. This coming Wednesday I am having a pouchoscopy.
I'm sorry for writing a book. Has anyone experienced anything similar, and or heard of anyone who has? My story is crazy of what happened to me. My heart goes out to all of you. We know and understand suffering on a level that most can't even fathom. With that we have become so resilient, courageous, strong, and vulnerable. Thank you for your help and support. 🤗🤗