First Flare Nightmares

Introduction:

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.

texas colitis 31 year old girl

My Symptoms:

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…

My Story:

– 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.

Colitis Medications:

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




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3 Responses to First Flare Nightmares

  1. UC Family Boy
    Uc family boy August 6, 2012 at 2:18 pm #

    Hi Allison,

    My biggest fear is to maintain a healthy diet, take the prescribed drugs and take good probotics and still my UC eventually get worse and take over.
    I have been off prednisone for 3 weeks now and my fear was for my symptoms to come back, that anxious feeling sat in my gut and it didn’t help. I’ve leant something that doctors haven’t picked up on but something I have leant through having UC;
    Did you know your digestive system has its only ‘brain’. You know that saying ‘I have a gut feeling..’ well I learnt recently it comes from you digestive system having its own ‘trigger system’ or it’s own brain. How we feel, our emotional state affects our digestive system.
    I have noticed since being off the prednisone I been a bit anxious which I feel in my gut- so I have stopped thinking about UC (this is hard) but I have basically taken steps to put it to the back of my mind. Strangely this helps, the best moments this occurs is when I am playing football or out riding my bike – my mind is off everything other than my task and i feel great.

    With regards to the remicade I assume they are talking about it because you have pancolitis. My doctor thinks I might have this (from our 7 minute meeting and from asking me vague questions) but so far I am ok with a max of 6 BM in a flare but my brother is on remicade and has pancolitis, now I think he ended up on this as all the other drugs didn’t work – so yeh maybe advised to try other drugs first.
    How many BM do you have a day now whilst on prednisone? Be careful for weight gain, moon face and acne whilst on prednisone – I unfortunate suffered from all 3.

    Maybe if anything I’d advise continue to be active and be healthy- I’m sure your diet was fine but maybe something in there you might need to cut out?

    • Jon August 26, 2012 at 10:42 pm #

      Hey Alison, pretty nasty sounding flare.
      I’m new to the forums, but briefly am a 32 year old ER doc who’s had UC for 7 years. Currently trying to get over a nasty flare with pred (always works), and a renewed commitment to a modified diet / lifestyle and some alternative therapies.
      I’ll be brief in my insight:

      1) the Liver function derangement is unlikely to be caused by the pred – are you on anything else? If you get worsening pain you need to get sen quickly, could be the very serious ascending cholangitis – but again, unlikely, and I’m sure by now this issues already sorted itself out.

      2) I agree that the jump to remicaid seems premature. In Canada and Australia, you don’t even qualify if you haven’t failed on “standard therapy” (incl. a 5-ASA like aspira as well as an immunosuppressant like imuran / 6MP / azathioprine. I have been hesitant to jump on the remicaid train despite it being offered by 4 different GI’s now – I gues I’m just holding out hope that a better answer will present itself to me. For some this has been an amazing development, but to be honest the evidence in favor of using it is really much stronger for crohns

    • Jon August 26, 2012 at 11:01 pm #

      Hey Alison, pretty nasty sounding flare.
      I’m new to the forums, but briefly am a 32 year old ER doc who’s had UC for 7 years. Currently trying to get over a nasty flare with pred (always works), and a renewed commitment to a modified diet / lifestyle and some alternative therapies.
      I’ll be brief in my insight:

      1) the Liver function derangement is unlikely to be caused by the pred – are you on anything else? If you get worsening pain you need to get sen quickly, could be the very serious ascending cholangitis – but again, unlikely, and I’m sure by now this issues already sorted itself out.

      2) I agree that the jump to remicaid seems premature. In Canada and Australia, you don’t even qualify if you haven’t failed on “standard therapy” (incl. a 5-ASA like aspira as well as an immunosuppressant like imuran / 6MP / azathioprine. I have been hesitant to jump on the remicaid train despite it being offered by 4 different GI’s now – I gues I’m just holding out hope that a better answer will present itself to me. For some this has been an amazing development, but to be honest the evidence in favor of using it is really much stronger for crohns than UC, which doesn’t really help us much.

      3) I hear you on the good pred life! Unfortunately it can’t last forever – osteoporosis, drug induced diabetes, other metabolic and bone problems, raised blood presssure / heart rate, plus all the “ugliness” effects UC family boy mentioned. Truth is my first time really bad I was tapering pred for about a year, cause I was aiming for “perfection” (ie the window it sounds like you’re in right now…wine in hand, working, not planning for your next quick toilet run/ escape, etc). Blood came back every time I got down to 10 or 15, so back up I’d go on the dose. In the end I just accepted some middle ground I could deal / live with – I hope you don’t, but maybe you’ll have to do the same at some stage.

      4) Wine. I hear ya. Coffee, can’t live without it either. Literally. I like the good life as much as anyone I’ve known, and am definitely prone to excess. I found after a while of trying lifestyle mods that some things just weren’t worth giving up – it wouldn’t be a life that I’d want to say I’d lived. But here I am, sick as all sh*t and looking for answers. Definitely the most frustrating aspect of this disease after all these years is not knowing whether what I’m doing is helping, hindering or just making my life boring for no reason. Which is why I’m hitting the forums now… I really want to have another crack at listening to my body while I’m in the pred window. Trying aloe, vsl3 probiotics, and some of the dietary recommendations I find around the traps. I guess what I’m trying to say is it can be a long road (hopefully not for you – beat this thing!), and you’re going to have to make some tough decisions. Whatever you decide on, you NEED:

      A) a doctor who is going to be your advocate, listen to you and what you want out of treatment, seems to genuinely care about you as a young person striving for a successful / meaningful life

      B) A consciousness as to what level of lifestyle cramping you’re willing to accept from restrictions, and what level of UC symptoms you’re able to tolerate in trade off.

      May you be one of the lucky ones in tune with their body enough to beat this thing without resorting to life altering treatments or surgeries. Best.

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