As if UC Wasn’t Enough…. I Think It’s Time to Vent

Introduction:

Diagnosed around 5 years ago
Been in and out of flares since then, never really known remission
UC went from mild to severe in 2012

Some more about me:

Nurse living in Melbourne
Enjoy good food and wine (UC sufferers nightmare)
Love to run as it frees your mind
Love tea, it’s amazing what a good tea can do for you

As if Ulcerative Colitis Wasn’t Bad Enough…

I’m a 29year old Nurse, and have been battling with this crazy disease for over 5 years now… I can’t say that at one point in this time that I have felt 100% healthy…. What is healthy? I think I have forgotten.

In and out of flares, trying to explain myself to people, changing medications and getting diagnosed with IBD related Arthritis…. After a bad flare late 2012, and starting to see an amazing new gastroenterologist and rheumatologist, I thought things were looking up… Maybe I was going to see that marvelous light the end of the tunnel, I think they call it remission..

No such luck, the festive season came around, and of course I indulged way too much of the things I shouldn’t! Getting back to work after 3 weeks off, I felt like I had never been away….

I started to feel very unwell, to the point where I was unable to get out of bed, a trip to the ED to get some fluids ended up a horrendous 5days in hospital on a drip and being told I had randomly contracted Clostridium Difficile… All I could think was just kill me now.. I’m in hospital, alone, the staff are vague, and I am so sick I can’t even advocate for myself. Then they discharged me, sicker than when I got there! Days later, being cared for by my amazing housemate, and at breaking point my wonderful Mum and Little brother came to my rescue, they flew to Sydney to try and help me get back on my feet. I didn’t get any better on the antibiotics and ended up flying back to Melbourne to recover for a week or so with them as I was passed being able to look after myself!

Within a week I was in and out of the GPs office, always frightened that the C-Diff would invite a flare, and how was I going to deal with both… Well… Wasn’t I in for a ride!

On a Monday evening, the GP sent me to the hospital for fluids, I left 2 weeks later, the C-Diff was so bad it had introduced another flare and to make matters worse, it had made my UC worse! I didn’t think it could get worse.. I was on 100mg hydrocortisone IV 4 times a day (hell) and 125mg vancomycin 4 times a day as well as my normal 3g of mesalazine and methotrexate injections….

I was at the lowest point of my life, had lost all ability to do anything for myself. Up to 40 toilet trips a day, insomnia and horrible pain I was sure my life couldnt get any worse… My beautiful Mum (aka my angel) took everything on, showering me, feeding me, taking me to the toilet, comforting me and sitting with me day and night just because she couldn’t handle the thought of me being alone. I am so blessed to have her, I honestly believe had she not ‘rescued’ me I would be dead! I relied on her so much, to the point where I still find myself asking her if I can do the simplest of things.

You know, it’s funny how much you realize about your life when you are so sick you can’t move, and more so, who will be there for you…. My loving Dad called me almost every day (if not me then Mum), and saw me when I was home,but much like my brothers struggled to see me in hospital so sick. Mum had daily phonecalls to family about my decline/progress. My close girlfriends did daily texts and phone calls, and one visited me nearly every single day (i think they all now have a very real understanding of my disease), I have an amazing support network, but as I was saying, you really get to know who really matters in your life when everything turns to shit (pardon the pun), because I lost some friendships through this ordeal….

Coming home was so scary, I couldn’t walk properly, my strength was basically non existent and my body had changed shape completely…. I felt better, but knew I wasn’t out of the woods…. A week after being discharged, I was back there again… The medication had not worked, I was on 50mg oral prednisolone plus my normal meds but I just wasn’t getting better! Massive amounts of antibiotics (flagyl and vancomycin) finally kicked the c-diff… But my poor colon was far from being remotely better…

To add to the mix, whilst in hospital, I had developed anxiety, especially with food.. I had to have a regimented routine with eating times and food items, and it would only take a slight mishap for me to be a blubbering mess and hyperventilating! A lovely psychologist helped me with the anxiety without having to add anymore medications to my already rattling body! Bless!

Finally I was able to go home, but with the pager and phone numbers of each of my doctors and specialists, in case I was to relapse before my scheduled appointment 2 weeks later. Still on high amounts of antibiotics I couldn’t wait to be off them, they make you feel so horrible and weren’t great for my UC.

So, I was on bed rest…. I have watched nearly every daytime cooking show (thank god for foxtel) and if I never see another life insurance ad it will be too soon!

Still having little muscle tone, massive weight loss and very little energy, it was time to start the rebuilding process! My 29th birthday rolled around, I wasn’t really interested in celebrating.. What did I have to celebrate, I had been sick now for 3 months, had to leave my life behind and was starting again. I think this was my darkest time, I felt hopeless and useless. I didn’t think I could ever get so miserable! All my close friends had so many wonderful things happening in their lives like marriage, babies, overseas holidays, and I was struggling to get out of bed each day.

But then my specialist appointments started to go from 2 weeks to 3 weeks, and it was almost suddenly I was feeling like maybe I was getting better… Just still no energy, so with a low iron count I had an iron infusion… Overnight miracle! Instant energy! And suddenly I wanted to get out and do normal people things…. But not too fast, my Doctor tells me often, just because I feel better doesn’t mean I am… Still not allowed to work, and only just given the ok to do some studying… I always think ahead, what the heck as I going to do with my life?

Nursing, my passion… It’s like giving a child a bag of lollies and telling them they can’t eat them…. How on earth was I going to find a career that I was equally passionate about… My body just can’t cope with Nursing anymore. As if UC isn’t a big enough life burden, but now its going to take away my biggest love.

So I decided I want to help people like me, with a package of fitness, nutrition, counseling, medication support and nursing support… A mobile business, where I can work it I with how I am feeling health wise and still feel like I am making a difference in people’s lives…

I enrolled in a fitness and business course, and finally I started to feel like my life was starting to turn around… And still always in the back of my head, what if my UC flares again…

Ahhhh and then there’s the whole ‘relationships and uc’ label I had decided to give myself… Failed relationships, always during or after a flare made me start to think maybe I was better off on my own, I mean why would I want to put someone else through what I have to live everyday, my family and friends are already having to deal with this, so why introduce it to anyone else. And being the personality type I am, the guilt of feeling sick all the time, and fear of being no fun or worthy of someone to ‘look after me’ was often on my mind…

How could I have been more wrong… Biggest lesson learned to date… It seems happiness really is the best medicine and there are people who want to be a part of your life regardless of your health status!! well that along with my pharmaceutical medication and amazing doctors of course! Im so lucky to have found someone who wants to be there for me and make sure I am ok, and when I’m not, is still there for me!

The first half of 2013 has been the worst of my life, but look out the rest, slowly but steadily, I’m making a comeback!

written by Mel

submitted in the colitis venting area

4 Responses to As if UC Wasn’t Enough…. I Think It’s Time to Vent

  1. Adam July 22, 2013 at 8:07 am #

    Mel,

    Thanks for sharing everything, and congrats to much on the combeback you’re in the middle of !!! Way way cool, and hell the heck yeah, there for sure are guys and girls out there, men and women who are not scared to get down and dirty in a relationship with a UC’er!

    Keep up the positive spirit, its invaluable in getting past tuff times with UC, and live your dreams out. You can for sure make them happen.

    Thx for sharing once again,
    -Adam

  2. bev July 22, 2013 at 1:52 pm #

    What a story Mel! Wow. A ‘ride’ indeed.

    Don’t you think that having this crappy condition makes you such a great person? At least there is that, if nothing else.

    You are WONDERFUL!

    Thanks for telling it all.

    Bev

  3. Rob July 22, 2013 at 3:49 pm #

    Stories like this make me appreciate the level of UC I have and all that goes with it. You are a very tough person to still be standing in the face of adversity. Your story really hit home to me. Thank you for sharing. There is always a light at the end we just need to persevere and keep getting back up and trying. This disease has definitely taught me patience and self control.

    Thanks again and please keep us updated.

  4. Michael Hurst
    MichaelKHurst July 24, 2013 at 3:38 pm #

    Congratulations on your comeback. I hope your good health continues, although c. diff can be tough to keep at bay. I think you are on the right by having a positive attitude.

    As for relationships, you can definitely actively date or have relationships even with this illness. For me it was my escape and what kept me going during my 12 years of Ulcerative Colitis which I consider as having ended two years ago yesterday after the fecal transplant kicked in. I actively dated, worked, traveled, played sports and was also a dating coach. Apparently women did not find it enough a turn-off to not want to see me. I was matter of fact about it, they understood I didn’t have any control over it, and they just kept a candle in the bathroom! I was amazed to learn how many people had family or friends with Colitis, Crohn’s Disease or IBS.

    One thing to consider just in case the c. diff ever comes back fecal transplants are very effective for c. diff and can also be effective for treating Ulcerative Colitis. Don’t accept the definition of yourself and sick without the ability to recover. I believe what helped save me from surgery and cure me was a focus on good health and a determination to do what it takes to live a good life!

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No matter what, colitis flares don't last forever, don't forget it:)