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Currently on Lialda, Canasa, Hydrocortisone (enema), and 40 mg Prednisone

Introduction:

HI!! I am Karen! I was diagnosed back in 2008 with very mild colitis. After going through some difficult times from the end of 2011 to 2012 I ended up with a bad flare up and getting re diagnosed this time with severe Ulcerative Colitis. In the past year I have only had about 3 good months being symptom free!

Some more about me:

I am from the USA in New Jersey! I have a passion for photography!! I take photos of everything and anything! Especially my nieces and nephews!

Current Colitis Symptoms:

I have bleeding every day..lots of discomfort. Nothing pleasant have been in a flare up almost non stop since November of 2012!

My Story:

After being diagnosed in 2008 I was ok for a while but than back in 2012 I got really bad and got re diagnosed with severe UC. IT’s been a long tiring journey this apst year! My goal is to one day be in remission and off all these medications.
What do others feel have worked best for them during a flare up? What is the best form of exercise during a flare up as well?

As far as my family helping me.. I haven’t seeked out much help recently until this past week. My chiropractor is actually helping me get on a strict diet this week and making me stick to it to see how I feel in a couple of weeks.

I think UC has definitely changed me and making me wonder why do I have this and why am I the only one in the family that deals with it. I ask questions like is it genetic? Did something trigger this when I was younger? Like when I had salmonella poisoning when I was 8 years old I also about 13 years ago started struggling with sinus infections and was always on anit biotics did something trigger me and I ended up with UC. It sucks and I hope one day there is a cure. I am just getting more actively involved with the CCFA. I will be participating in the Take Steps Walk in June. My first time ever walking to support a good cause.

The most difficult thing is knowing what do eat and being that I am just starting prednisone I am always hungry. I am trying to eat more healthy now that this flare up has not calmed down. I am tired of being on so many medications and tired of running to the doctor all the time.

Medications:

written by Karen

submitted in the colitis venting area





7 Responses to “Currently on Lialda, Canasa, Hydrocortisone (enema), and 40 mg Prednisone”

  1. AdamApril 1, 2013 at 7:46 am #

    Hey Karen,

    I’m super sorry you’re in the middle of yet another flare up right now. I know how it feels and for sure it sucks a fatty, but you’re gonna get out of it.

    As for me and flare ups, I’ve had great luck with toning down my food intake to a select list of foods such as Chicken, both baked and grilled, and pretty much the same with plain old hamburger meat. I try to bump up my protein intake, and bump down my carbohydrate intake. It seems that for many people, this is easier for the digestive system to handle when there is active inflammation and the immune system is in haywire mode. You can read up tons on the SCD diet stories on the site here:

    http://www.ihaveuc.com/category/specific-carbohydrate-diet/starting-scd-experiences/

    I follow the Scd diet for the most part, and I’m actually curious what your chiropractor has you getting into in terms of diet? My hunch is its probably real similar to what I’m talking about, but maybe I’m wrong. Either way, if you feel better, and start seeing positive results, well…that’s the friggin goal right! So best of luck to you and I hope you’ve got some good rebound news coming our way soon.

    All the best,

    Adam

    • KarenApril 2, 2013 at 5:42 pm #

      My chiropractor basically told me to try to eat a low carb high protein diet. IT has been way difficult to do being on prednisone. I am down to 20 mg a day starting today. I had a really difficult time the side effects were getting to me big time. Major night sweats, insomnia, I am begging to lose my mind being on it. So my doctor told me to drop to 20 mg a day I was doing 30 mg until Sunday. I am getting better though. Still have some bleeding but no more pain and all that. I just need a grip on my eating and try to cut out carbs as much as possible!

      Thank you so much for having this website here! I have been looking for support since NO ONE understands what I go through. I have been told to get over it to not worry and the bleeding will stop. People just don’t understand what you go through with UC and how serious it is!

  2. rjwApril 1, 2013 at 9:52 am #

    Karen,
    I think your suspicion about anti-biotic’s is correct. I suspect that was a downfall for me as well. I am new to this but have done a bit of research. I would go to the threads and check out EVOO “Extra Virgin Oilive Oil” and read Graham’s advice and EVOO ideas. Also the supository for EVOO soft gel pills. People keep talking about the SCD diet so I would def look into that. Lastly, I would look into FTP Fecal Transplant. Some great info on this site about it and some threads that talk to doctors about it. By the way curious if you have gotten any of the following tests done?
    1) Inflamation a) ESR b) Non cardio CRP
    2) Vit B, D and Iron
    3) Poop tests for bacterial imbalance, C-DIff etc?
    4) Mayo Clinic IBD test
    5) Allergy tests?

    • bevApril 1, 2013 at 1:27 pm #

      Oh yes…and there are fecal transplants too…thanks rjw…I almost forgot about those!!

      :)

  3. bevApril 1, 2013 at 1:25 pm #

    YES, YES, YES…The antibiotic use, the salmonella, you bet those things can play a role in getting UC.

    I was on a lot of antibiotics as a very young child, for bad tonsils. I also took allergy shots for a couple of years. In my twenties, I took Accutane ( an acne drug) four different times. I’m sure that all of these things led to my getting UC. I also had a bad Norwalk virus once, many years ago, and was incredibly ill for two weeks. I’ve really never been the same since.

    Unfortunately, and you aren’t going to like this, medications are not the way to go with this condition, even though that’s what the doctors are still prescribing. I was on meds for 14 straight years, and they either made things worse, or did not work at all, or eventually stopped working.

    We must actually HEAL the colon. There are many different ways to do that, and it can be and most often is, different for each one of us. For me, a GOOD probiotic and L-glutamine powder did the trick I am completely symptom free, for the FIRST time in 14 years, and have been for a whole year now. No more drugs at all! This was all on my own…my doctor did not agree…but I did it anyway. The drugs were just making me feel worse, and all the time, the doctor said it was the UC!

    Others on this site have found remission through diet, like the SCD, while others are taking extra virgin olive oil, or aloe vera juice. We have to find out what works for ourselves, NATURALLY, unless you want to run the medication gauntlet, or ‘merry go round’ as I refer to it, which will eventually fail you, or even further damage you in other ways.

    This is no joke. There is no quick fix. Meds are just a band aid of further danger to your health. We have to do the hard work ourselves, I found out after 14 years of doctors and medications. I feel GREAT now!

    There is hope….TOTALLY! You’ll be glad you did it, too.

    Cheers
    :)

  4. KarenApril 1, 2013 at 4:47 pm #

    Hi! Thank you everyone for writing to me!! I greatly appreciate it!! Since I have been on prednisone my eating got out of control. I am starting to feel better since I wrote it but I am starting to see that I need to really watch more what I eat and try to do more high protein diet than anything! It was working when I started a few weeks ago and than I started craving way too many carbs! I want to be off all medication and in remission that is my goal. I greatly appreciate all the feed back so far! I am happy to have found this website as I have been looking for some support in all this since no one understands what you are going through unless they live with this as well!

  5. SharonMay 18, 2013 at 6:03 pm #

    No one in my family had UC or Crohns for the first 20 years after I was diagnosed. I did take a short round of Accutane as a teen and probably had too many antibiotics as well. One genetic link I had not thought of for many years though was arthritis. Many many people in my extended family have some form of arthritis (inflammation). Notice how Humira is prescribed for both RA and Crohns?

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