Advice? Info? Help?

I’m 26 year old female from Australia.

I was diagnosed with ulcerative colitis at the end of October following what I thought was just a bad case of gastroenteritis that went for a little bit too long and became more painful as the week went on.

My GP referred me to the emergency department where they kept me over night to do a ct scan in the morning, next thing I know, I’m being transferred to a ward, having a colonoscopy and spent the next 7 days in hospital. I’m currently a paramedic student with only 12mths to go until I get my degree. The medical staff have briefly described this condition and being in the state I was in at the time, and all the pain relief I do remember them saying something about surgery and a bag…..???? I’m assuming this is the worst case scenario??

Current Medications: Mesalazine and Predisone

Hardest thing so far is not knowing how bad this is going to become and what affect it may have on my career in the future. I’m very keen to hear from other sufferers, including any advice anyone is willing to give me. I’m glad that I have found this site and get an opportunity to speak to people that for 1 know what UC is, and 2 understand exactly what I’m going through.




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5 Responses to Advice? Info? Help?

  1. Catherine
    Catherine November 25, 2010 at 2:53 pm #

    Hi StaceyLou, I found out I had UC in Nov 2009 and was on mesalzine (enemas) to start with, then prednisone, mesalzine granules, and then different immunosuppressants, none of which have consistently worked (apart from the prednosine, which I hated taking because of the side effects). I think most people have a better time of it with the meds than I did – I assume there must be people who just take the drugs and keep everything under control with that, right? Anyway, I hope you are one of the lucky ones.

    But you are right, bowel removal and bag is very much a last resort. Despite all my problems with the drugs, my gastro doesn’t even consider that as a possibility.

    It will probably be a challenge working as a paramedic during flares – not knowing where the nearest toilet is can be terrible. But that said, I haven’t had that problem since starting the SCD almost 8 months ago, even when I did have a flare up in some other symptoms.

    On my last flare, I started the introductory specific carbohydrate diet again, following the free chapter of scdlifestylebook.com, and then their tips for phasing out of the intro diet. It has helped a lot.

    There is lots of great info on this site and others. Read everything you can and ask lots of questions, online and your doctor too. (Write them down before you go to see you doctor, it really helps with not forgetting or put off your topics)

    All the best,

    Catherine

    • Stacey Lou December 9, 2010 at 6:38 am #

      Thanks Catherine. I’m finding myself very confused about what this disease is all about. The doctors tell me what it is but haven’t really explained what has caused this, what to eat and what to stay away from etc. I’m assuming flares are what I experienced leading up to when I was admitted to hospital?? Not being able to leave the bathroom and having horrible abdo cramps? I just find that I have alot of questions to ask, but have no one to ask and give me answers. I’m stuck in a bubble and dont know how to get out or why I’ve been trapped :(

  2. Carol December 5, 2010 at 9:45 pm #

    Hey StaceyLou, sorry this reply is a little late but I just wanted to let you know that your story sounds very similar to mine. I’m just going into college this spring semester so I’m not quite sure what it would be like to be a paramedic and have UC, but I’m here to give you some hope. I am on Lialda (mesalamine) twice a day but I was put on prednisone for my first really big flare. I ended up tapering off the prednisone within the summer months and I am now taking 2 Lialda everyday along with vsl#3 probiotics by choice. I have been in remission since early September (knock on wood) and I am not on any special diet, however, I try to stay away from sugar and really greasy foods and if I feel like something is going wrong, I’ll eat really healthy (SCD healthy) until I feel ok again. This summer was my first flare and let me tell you, it wasn’t fun. I lost 25 pounds in 2 and a half weeks and didn’t think there was an end in sight but I guess I was one of the lucky ones that responds well to medication. Im so thankful for this and I hope you are the same. Im well prepared for another flare but for now, I cherish my life and everyone in it much more than I did before UC. Good luck with everything and stay positive no matter what!

  3. Stacey Lou December 9, 2010 at 6:43 am #

    Thanks Carol. I’m finding it very hard too stay positive. This may be stupid, but I’m suffering from an illness I feel I know nothing about! No one in my life knows what is it or have never heard of it, and dont really understand how serious this can be. I dont expect people to nurse me and feel sorry for me, but I also dont know what I can do to make them see or understand what this is, especially when I’m not even sure what that answer is!

    • Carol December 12, 2010 at 1:57 am #

      I know exactly what you mean. Out of all my friends, only a couple really understood how serious it was just because the look on my face looked so ‘terrified’ and ghostly before having to rush to destroy their bathrooms. Besides my parents and these couple friends, everyone else just looked at it as though I had a bad case of food poisoning. Only people who actually have this horrible disease really knows what it feels like but thats why I have found this site so helpful. I wish you the best of luck but just know theres people here that feel your pain! Its not a fun disease AT ALL but i think our hearts are just that much bigger than those that dont have to deal with diseases. Good luck on defeating this flare! You can do it!

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