Hi, I've been lurking here about
a week. It's hard to tell my entire story because I've been sickly, with autoimmune problems my entire life but I've never had a UC flare until last Sept. 2013 (constant bloody diarrhea). I ate miso soup for a week and "cured" it. Then last January 2014 I ended up sleeping in the tub so I could be close to the toilet. Miso and yogurt couldn't cure it this time. A week of prednisone and I thought I was cured. wrong.
I ended up in the hospital from Mid Feb to Mid March - for 30 days. After the colonoscopy, on the first day, the GI specialist said he had never seen anyone's colon as bad as mine in 20 years. The pictures show the entire colon looking like it had been beaten with a mallet. He couldn't believe that I hadn't come in to the ER sooner. Well, I HAD actually been bleeding a little bit, daily, for 2 years but I ignored it, since it didn't hurt. The pain and constant bloody diarrhea didn't start until January but I thought I could "fix" it with diet and herbs because I've always taken care of myself that way. Anyway, in the hospital, I refused remicade and instead had the prednisone and a PICC line for IV feeding. (I had little understanding of what this disease is until I read this forum) The doc said he expected me to require emergency surgery in the first two weeks, but instead I got better. Score one for being in denial!!
But since I've been out of the hospital, I feel like I've gotten worse. I'm on 40 mg of Prednisone. It was tapered off for a while but I got so much worse that I asked for more Rx to get me through until tomorrow's appt with a new GI (had to move to a nearby city with my parents, since I can't take care of myself, so I needed all new doctors).
So here is my dilemma: I don't have diarrhea or blood anymore. I'm just swollen, in pain and can't poop or pass gas. I'm stuck. Slippery Elm helps. Caprylic acid seems to help. Magnesium malate seems to help. These slowly help move my bowels but not very much and I'm still swollen. The pain is mostly in the transverse colon area. Not really any problems near the rectum as far as I can feel it. But I'm not getting better.
These symptoms don't sound anything like what I'm reading everyone else describing with their flares. Rather than too much poop, I have too little. Considering that the prednisone makes me ravenous, this creates a lot of pressure and pain. It feels like an alien is going to pop out of my abdomen.
Has anyone else experienced this or know what it means? I want to be prepared tomorrow when I talk with the new GI. I'm sure he'll suggest one of the mesalamines. I have a moon face and all the other prednisone problems so they'll want me off that soon. I really just wish I could fix things with supplements like I've done before but it's not working this time. Or maybe it's just taking longer than I expected.
Also, I have lots of inflammation in my thighs and knees, so I can barely walk - I shuffle. Also got a blood clot in the hospital from the PICC line so I have to watch my INR levels. My PCP is mad at me for taking the boswellian/tumeric combo but I just felt like I had to try it. It's not really helping, though, I don't think...
I hope I'm not rambling too much. I find this disease confusing and don't know what's relevant sometimes, especially when I read how different everyone's experiences are to each other.
Diagnosed Feb 2014
Gluten free since 1993 except for hidden gluten in 2010-2011 (then I started bleeding)
Current Rx: 40mg prednisone, 40mg protonix, 5mg coumadin
Jujube and Melatonin for sleep (works great)
Post Edited (seaskyline) : 4/20/2014 7:21:57 PM (GMT-6)