New to Ulcerative Colitis – Diagnosed June 12, 2012

Bio:

I am a 30 year old female living in Western Australia. Just recently diagnosed with UC June 12th 2012 after only really noticing symptoms March 2012

My Story:

Just recently diagnosed with UC and what a shock that was! I hadn’t really noticed any major symptoms and then upon my return from an overseas holiday in March I was suddenly having to run to the bathroom, it started out once a day and then slowly got worse and worse until I was getting strange looks at work for how often I visited the restroom. Of course I just assumed I had picked up a bug and so did my Dr but after the usual blood and stool tests showing nothing I was quickly referred to a GI. Within 3 weeks I was in getting the unfortunate probing and pretty much got an answer there and then seeing as my whole large intestine is affected. I must say I was incredibly relieved that things were moving quickly as I was in the middle of a very bad flare which meant that ‘accidents’ were happening quite often. And my are they mortifying!! it has really affected my life. I am stressed out and anxious about going anywhere, I absolut ely have to know where a bathroom is and will sit and plan the quickest route to it. Luckily my family and close friends are incredibly supportive which has been a huge help. Have a great GI who just started me on Prednisolone which is slowly being tapered down over 5 weeks and also taking 4gm of Mesalazine, so far so good (touch wood) but I still have the constant worry in the back of my mind wondering when the next flare up will hit, if at all, and what will happen when I stop the Prednisolone. I am also worried about side effects of the steroids, I have heard so many horror stories, if anyone has info to share that would be great.

Where I’d like to be in 1 year:

Symptom free and not chained to a toilet :)

Written by: Zoe

submitted in the colitis venting area




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3 Responses to New to Ulcerative Colitis – Diagnosed June 12, 2012

  1. Adam
    Adam July 24, 2012 at 10:36 pm #

    Hey Zoe,

    Welcome to the uC club! Glad you joined us!

    That’s great that you are seeing some positive results so quick with the medications, really awesome:)

    Don’t freak out on the prednisone/prednisone side effects. Things are different for everyone, and if you just so happen to have some side effects, its nothing to feel strange about.

    I myself had several things change up a bit when I was on steroids, moodyness, bad depth perception while driving…(sorry old lady who I ran into once at a stop light…:)

    What you might want to do, is read up on the Prednisone/Prednisolone survey we did a while back. There’s all sorts of great response from fellow UC’ers that might help you out with calming down your worries on that topic. here’s the link to that: https://www.ihaveuc.com/prednisone-prednisolone-use-side-effects-survey-results/

    Keep us posted on how things turn out for you int he near and long term Zoe. And a big old WHAZZZ up to WEstern Aussie lands! from California! (would love to get out there some day!)

    -Adam

  2. KK-SCDer July 25, 2012 at 5:44 am #

    Hi Zoe,

    Sorry to hear about your diagnosis! I hope you feel better soon!
    My advice is to start the Specific Carbohydrate Diet ASAP. I have never been on prednisone, so I can’t comment on that, but I do know that if I had started SCD right after my symptoms had appeared, and not 7 years later, I would be symptom free right now. Even so, SCD has worked wonders for me, and they say that it takes as long for your body to heal on SCD as it takes for you to get sick, so the sooner you start, the better. Your GI will tell you that food has nothing to do with your symptoms. This is false. I feel so much better in the two months since I have changed my diet to SCD than I have felt in 7 years of taking meds, and I really recommend it to you as well.
    Best of luck! Good health!

  3. Steve August 1, 2012 at 9:13 am #

    Hi Zoe! Glad to see you are feeling relief however you find it. :)

    As far as steroid concerns, if you have tolerated them this far, there are no long term side effects to be concerned about. For me, they caused a slight weight gain—gosh, I was always hungry—and made me sweat quite a bit(I worked in a kitchen and it only happened then—if it happened during cooler times, I would have gone to a doctor immediately as it could be signs of a serious issue). If you stay on them for an extended time, that is when they can hurt you…so cross that bridge if you have to go there. Otherwise, no need to stress yourself out. That is not good for us UC peoples.

    About your hope to be symptom free in a year…well, that depends on what you feel works for you or how you want to approach your UC. If you want to go the medication route, more power to you but for many of us, that has shown mixed results. For me, it was all bad. For others, while I have seen them claim the medications work, their lives still seem to be ruled by UC. I also know others who have gone the surgery route and they feel it beats changing how they eat. I have my own views there but I say whatever you find that works do it.

    I personally have tried David Klien’s raw vegan ways with success—but am switching to a SCD for financial reasons. I have already seen changes there in my few experiments while waiting Elaine’s book to come in the mail. Truthfully, I made a salsa(tomatoes, onions, cilantro, jalapeno, a lime and a sprinkle of salt). Twice…eaten over 4-5 days. Gosh it was good and my body was at ease. Frankly, when I did have a stomach ache it was from eating too much. Not because I had to rush to the bathroom or anything. I am looking forward to starting the SCD intro diet tomorrow and seeing how it goes.

    Anyways, best of luck. I hope you report back and let us know how things are! I’m new but I plan on sticking around.

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