My name is Allison and I’m a 31 year old Texan (currently melting in the hot, hot Texas summer heat!). I was diagnosed with UC in November 2010 and up until recently had not really been inconvenienced by my UC. That said, I am (was?) a very active person. I love yoga, tennis, taking my Corgi for little runs, cooking with my husband and just generally living a healthy life.
My relatively normal life with UC was drastically interupted in June 2012. At the beginning of June, I suddenly developed a mouth FULL of canker sores – and I mean full. I had them on my tongue, the roof of my mouth, my gums, even my epiglottis. I was miserable, but little did I know it was about to get worse. By mid-June my canker sores were no where close to being healed (one would disappear and two more would take its place). My GI was of little help, just telling me it was “part of having UC.” My general practioner gave me lidocaine but it was pretty useless. On June 18th I started a new job and a week later it all hit the fan. I was running to the bathroomm 15 – 20 times a day, nothing but bloody diarrhea every time. It literally just came out of nowhere. To top it off, every single afternoon like clock work I would get an awful fever. Tylenol would usually break it, but I felt like death. I had enough energy every day to drive home, put on yoga pants and dissolve into the couch. By July 4th I had lost 20 pounds (I’m 5’4″, normally 125… I was starting to look very sick) and the fevers seemed to be getting worse – 103 and 104 every day. I probably should have gone to the hospital but with the help of my husband and very worried parents, I was being waited on hand and foot and was as comfortable as I could be, which was not very, but I was toughing it out. I had been to my GI twice at this point, with a colonoscopy scheduled for July 27th. He tried to get me to try prednisone for a 10 day cycle but I wanted to try other options before a steroid. He gave me a 3 week sample of Apriso and it did NOTHING. I finally called and moved up my colonoscopy so I could get some answers. The procedure revealed my entire colon was a disaster zone. With that, I reluctantly took the pred prescription… and man oh man am I glad I did. Within two days my canker sores were completely gone, I had a ragi ng appetite and best of all no fever! I have been on the pred for two weeks (40mg to start, now I’ve tapered to 20mg and will go to 10mg next week, then 5 mg the week after) and feel like a million bucks! I’ve gained back about 5 pounds and am finally back at work – thank goodness for a wonderful boss and understanding colleagues. I feel normal for the first time in a month and my bowels are totally regular, no blood, no diarrhea, once a day. BUT: I have some big questions…
– I’m terrified that as I continue to taper the pred my flare will return. Any insight?
– My doctor also wants to put me on Remicade. This is my first real flare and I’m no physician, but this seems kind of extreme. I thought the Remicade poll was very insightful recently, but it seems like a mixed bag of results for people. It’s such a major step and I’m nervous about it. Has anyone else’s doctor jumped directly to Remicade so quickly? Again, to me it seems like a medication to try after others have failed???
– Before the flare I was on the SCD and was pretty good about it but then out of nowhere the flare hit. I know UC is unpredictable, but I was honestly sidelined by this flare. I thought since I was employing a “good” diet I was keeping myself in check. To be honest it has kind of left me with a dispondent feeling about the diet… while I’ve been on the pred and feel so good, I’ve been eating whatever I want. I know that’s bad but I kind of feel like “screw it, SCD didn’t help anyway.”
– I also really like wine. How do others handle drinking? I know the answer is probably not to drink at all, but is a glass out of the question? I’m afraid to try anything, after I’m off the steroid of course, but would like to know how others’ bodies have reacted.
– My doc called yesterday and told me my liver enzymes were high. Has anyone else had this in combo with taking pred? I had blood work done for hepatitis (for the Remicade) after I’d been taking 40mg of pred for about a week. I’m thinking the liver enzymes are out of whack because the liver processes the pred, but that’s just a guess? Anyway, I have more blood panels headed my way.
Where I’d like to be in 1 year:
Like just about everyone else – medication free and back to normal.
I have tried Lialda (it worked beautifully but gave me TERRIBLE arthritis) and Apriso (no results). Prednisone has been awesome, but I’m only on it for two more weeks. I’ve also used cortenemas as needed, but not while in a flare. They have helped some but I was mostly symptom free when using them.
written by Allison
submitted in the colitis venting area