Current flare up is unbearable, any advice would be appreciated.
I was diagnosed with Ulcerative Colitis in October of 2009. My symptoms went from very mild (simple nausea spells that lasted a few seconds) to constant nausea, dehydration, diarrhea filled with blood in a matter of a week and a half. By the time that I got to the hospital, they thought they would need to remove my colon right there and then. They weren’t even sure if it was infectious or Ulcerative colitis at that point, so they pumped me full of antibiotics and steroids. I did get better and it took me until June of 2010 to get off the steroids and get into remission. My remission lasted a very short time until I had another bad flare in October of 2010. That one lasted until March of 2011. Luckily though, with all these flares, when treated with Prednisone I was able to keep them somewhat under control and live a semi-normal life.
This June I got another flare. This one is worse than all of them combined. I got on the Prednisone, I tried Rowasa enemas to see if I can stop it early (I was on ASACOL for maintenance these past 2 years). However, this time around, nothing helped. The steroids weren’t doing anything and my symptoms just got worse and worse. I increased the dosage and started 6MP but had an awful reaction to it and had to stop. Since end of June, I have already gone to the emergency room for dehydration and just a few days ago got out of a week long stay at the hospital where they had me on IV steroids and IV food for complete bowel rest. That didn’t help at all. I tried the SCD diet for a month and saw absolutely no improvement. My current symptoms are constant diarrhea (although there isn’t much blood, just lots of nausea and cramping) and worst of all, almost non-stop nausea throughout the day. Anti-nausea medication hasn’t been helping. I can also constantly feel my c olon, every time I move or switch positions in bed. I feel everything inside swoosh around and I get nauseous. I have resorted to sleeping only on my right side and not moving at all. However, that only mildly helps. I still get constant nausea spells at night and can’t sleep at all. I have constant fatigue, I feel like my legs have almost stopped working. I’ve lost 35lb’s in the last month and a half. I’m only 5’3 and now weight a mere 103 pounds.
Due to the constant nausea, I have no desire to eat and I try to force myself. Food doesn’t taste like anything to me anymore and it’s almost like punishment to eat it. I’ve been pretty much eating the same things for the last 2 months. Steamed and baked chicken, chicken soup with only mashed carrots, rice, and apple sauce and even such easy to process foods have not given my colon the rest that it needs. The doctors want me on either Remicade or doing the surgery. I’m afraid to take Remicade because I have very bad reactions to drugs (6MP was a perfect example) and I’m really trying to avoid surgery. However, living like this since end of June has become unbearable. I’ve completely stopped talking to people, I can’t even so much as distract myself with watching TV. Half the time I just sit there staring into the distance trying to control my nausea and thinking about my colon, since I can constantly feel it extremely unsettled. At this point, I’m willing to try anything just to get better and get out of this awful flare.
After almost 2 months, I’ve lost my energy and ability to fight this. The constant symptoms that don’t go away don’t let me forget that I have UC even for a second. I try to go to work, but it takes everything out of me. I’ve been out half the time over these past 2 months. I’m just worried that because this flare is so severe and steroids are not doing anything, any alternative options don’t really even have a chance to work. I just wish I could find the strength to keep fighting this disease but after this long, I feel like I’m starting to give up. Any suggestions on how to deal with this or even options for improving this flare would be greatly appreciated. I’ll try anything at this point.
My Ulcerative Colitis Medications:
Ton of vitamins
Submitted by “Anna” in the Colitis Venting Area
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