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Newly Diagnosed and Wondering If I’m Having Another Flare Up?

Intro:

I was diagnosed with Ulcerative Colitis in June 2011. Still feeling symptoms and minor flare ups and trying to handle having UC mentally.

My Story and Questions:

I’ve always had stomach problems since I can remember and have been sensitive to certain foods. I always chalked it up to having a “sensitive stomach” and didn’t really think it was anything serious. In October 2008, I went to the Emergency Room after having uncontrollable diarrhea and loose watery stools for a few weeks. The doctors thought it could be C Difficule, but they were never sure. They gave me some antibiotics and it seemed to go away.

This past May I thought I had a serious bout of food poisoning after going to the bathroom about 10 times a day with urgency. I started to see blood and got a little worried. After about a week I went to the walk-in clinic and they once again thought it was an infection or parasite. It kept happening and getting worse and I was basically house bound or had to stock up on immodium if I left the house. Thankfully I was working from home at the time. I started to feel just overall sick, exhausted, woozy, dizzy and tired. I was also getting pretty intense pain in my left side. I was just so frustrated that after about three weeks I decided to go to the hospital to see if they could figure it out.

When I got there I was told I needed to stay there for a few days while they figured out what it was and so they could do a colonoscopy. I was hooked up to an I.V for three days and had blood taken every few hours as I was so anemic and dehydrated by this point. I had never heard of ulcerative colitis or Crohn’s before and they kept getting mentioned to me. I considered myself fairly healthy (and I’m only 25 years old), so I had never been this sick in my life before or hospitalized. I was going to the bathroom every hour and I was pumped with gravol and tylenol so I could sleep.calling the doctor

They did an ultrasound, internal ultrasound and colonoscopy to figure it out and I was diagnosed with Ulcerative Colitis. I was put on Mezavant (plus the enema treatments for 3 weeks) as well as a slew of vitamins and minerals because I was so nutrient deficient and malnourished after having intense diarrhea for about a month. I also had to follow a strictly no-fibre diet for about a month which meant no multi-grains, seeds, nuts, whole wheats, beans, lentils, raw vegetables and most fruits. I can eat somewhat normal now, but am still careful about it.

It’s been a few months and I’m still having pain on my left side which I’m trying to manage with Tylenol, but I’m starting to get a little concerned. My energy levels are getting better and I can start to go places without worrying about going to the bathroom or taking immodiums, but I still don’t feel like myself. This past week or so I’ve been feeling the symptoms come back and have been getting pretty bad diarrhea, dizziness, nauseous and exhaustion and I’m wondering if I’m having another flare up? There’s no blood and the urgency isn’t as bad, but I’m starting to feel sicker and sicker each day.

How do you know if you’re getting another flare up,

and how bad does it have to get to go back to the hospital?

I have a followup appointment with my G.I Specialist in October, but don’t know if I should go back sooner.

My Ulcerative Colitis Medication:

Mezavant 5-ASA

Submitted by “Downy” in the Colitis Venting Area

Tags: hospital





6 Responses to “Newly Diagnosed and Wondering If I’m Having Another Flare Up?”

  1. AdamSeptember 11, 2011 at 10:50 pm #

    Hi Downy,
    My suggestion would be to let your doctor’s office now ASAP that you are feeling quite a bit worse, and as the days roll on, things don’t seem to be getting better with your current medications. I always felt like the doctors should know right away when you are starting to feel worse, afterall, they are YOUR doctor. And as well, if you begin to see bleeding, you very well should let them know. I am sure that if you tell them you are feeling horrible, they will be more than willing to change their schedule.

    Hang in there, for most people the process of getting a working treatment program for UC right after being diagnosed takes some time. heck, it took me the better part of 1 year and that was after living with symptoms but un-diagnosed for about 5 years. best of luck to you “Downy” adam

  2. SheilaSeptember 11, 2011 at 11:45 pm #

    Hi Downy.
    I agree with Adam. Don’t wait. Just make the call. You might save yourself weeks of suffering and not have to go through an even worse flare. If you think you might be flaring, you probably are. Don’t try and blame it on a flu or something as I have done in the past. Hope you feel better soon and find something that gets you back to where you like to be. Sheila

  3. DebbySeptember 12, 2011 at 4:10 pm #

    Downy,

    You definitely need to see your Gastroenterologist at once. As weak as you are you need help and meds now. UC is an autoimmune disease that takes a while to get under control.Be patient with yourself and know that you will get into remission once you find the right meds. I have had UC since 1982 and understand what you are feeling now. I was in the same condition this time last year.

    Best of luck to you.

    Debby

  4. OrdinaryWorldWhereRUSeptember 12, 2011 at 5:04 pm #

    I also agree with Adam. I waited nearly too late when I was flairing. Now each time my doctor sees me, he warns me that next time they might not be able to save me. He also reminds me to never, ever hesitate to contact his office again the moment I see anything even remotely resembling a flair. In other words, it can get out of control and it deserves to be taken seriously.

  5. DownySeptember 13, 2011 at 5:51 pm #

    Thanks for the advice everyone. I’m finding this is an everyday battle so far and it definitely has ups and downs. It’s been tough adjusting and trying to live a “normal” life. I don’t really know what normal is supposed to feel like in terms of my symptoms and what I should be feeling, but I know when it’s getting bad at least. Someone recommended I chew nicorette gum as it apparently is good for people with U.C. Anyone else heard of this? (Does it work?) Also trying to keep my diet in check and eat smaller portions. My G.I doctor said to go straight to the E.R if it gets bad and see her, so I will definitely do that if it gets really bad.

  6. HopskotchSeptember 16, 2011 at 9:50 pm #

    Yeah, definitely talk to the doc. When I was first diagnosed in the midst of a huge flare, I remember it got mostly better after a couple months, but then kind of did a mini-flare a couple months later before really going into remission. I have a bad tendency to delay things because they always want to scope me or put me on some medication I don’t want to try, but then I eventually end up doing it anyway and kicking myself for waiting so long. So you should at least talk to them at the earliest sign of a flare, especially while you’re still getting used to what is and isn’t a flare.

    Re: nicorette gum. I just tried the patches, and as a nonsmoker found the side effects hard to tolerate. I chose the patch over the gum on the theory that if it would be irritating, I would not want the irritation going directly into my already inflamed digestive tract. So if you do decide to try it, I’d suggest trying just a little at first until you see how it affects you.

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