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Plunged in the Deep End Swimming to Shore

Introduction:

Hi I’m 18 years old and was diagnosed with Ulcerative Colitis at the beginning of the year just after I started to feel on top of the world and like everything was going how I wanted it (good timing huh?). I was quite ill on and off throughout my childhood and got glandular fever/mono in 2010. My first flare up happened a couple of months after full recovery and straight after I split up with my first proper boyfriend.

My Story:

My symptoms first appeared seven weeks before hospital, I went to the doctor, she told me not to worry as it wasn’t anything serious, I was ‘too young’ for that. (annoyed isn’t the word)
Seven weeks later I was doing work experience with an advertising agency in London when Ulcerative Colitis first struck big time, it was a week long course where we had to prepare a pitch for the head of the agency and I was so excited (and nervous) throughout the week I became more and more ill however just thinking it was a stomach bug I continued and completed the whole course. I was going to the toliet at least ten times a day but somehow managed to conceal it from everyone by wandering off pretending I was going to find out some information from some of the employees. I remember feeling like I was going to faint for the whole train journey home but still (somehow) managed to complete 3 change overs due to delays. Anyway, when I got home I went straight to bed, first saying goodbye to my parents as they were going on holiday the day after.
In the morning I woke feeling SO sick, I had never felt this bad in my life. So after several calls I was wisked off to hospital where I was put straight on steroids. I don’t really remember the first week apart from alot of pain and trying to diagnose my problem. On the third day in hospital my parents managed to get a flight back and I was so happy to see them but so guilty they had to come home.
They eventually diagnosed me with ulcerative colitis, it was a mixture of shock and relief. I could now be treated and they’d know what they were doing. However I knew someone with this condition already and was aware it wasn’t going to be an easy ride. Or one that I could ever get off.
Then came the scary part. The doctors came in and looked at my chart, sat on my bed and told me the steroids weren’t working. I didn’t really know what that meant at this time. I’d never even heard of steroids before. The next day a surgeon with a lack of bedside manor visited my room and told me he was going to have to take my bowel out if the next lot of meds didn’t work and continued to tell me my ‘bowel might explode’. A hormoal teenager, high dose of steroids and that kind of news really don’t mix. At this point I wasn’t to scared of actual surgery. Until I realised what it entailed, I had been happily doing what I loved two weeks earlier and now someone was telling me I may have to have a colostomy bag. To be completely honest, the hardest thing for me to get my head around was the fact I wasn’t aware of this type of surgery happening to young people prior to being told I would need to have it. I felt so naive and scared.
I was put on cyclosporin and prayed all night that it would work I had never been so scared in my life. By the second day it began to take effect. I was so happy. I knew that in the future I could probably cope with surgery, but to be plunged in like that without any time to think was too hard to cope with.
I was in hospital for another 2 weeks, over 3 bank holidays so my treatment was delayed but eventually I was discharged. Its been so hard coping with all of this, the drug side effects (moonface, hair growth, achey joints, sickness) not being allowed to go out in crowded places for three months due to triple immunosuppressant therapy has made the confident girl I once was feel nervous around people. I now look in the mirror and hate what I see. I hate being so sad all the time and never thought everything could change so dramatically, so quickly.
All I can do is thank my friends and family for being there for me throughout this year. Its been a rocky ride so far. But I’m determined to make it more stable for the rest of my life. I know its not going to be perfect, but nothing ever is. I just won’t let it beat me.

My Medications:

Mecaptapurine 1 1/2 tablets
Probiotics
Multivitamins

(did take steroids and cyclosporin aswell)

Submitted by “hownowbrowncow” in the Colitis Venting Area

 

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2 Responses to Plunged in the Deep End Swimming to Shore

  1. jennifer August 16, 2011 at 8:34 am #

    I am so sorry you have to go through this at such a young age. I was just talking to my mom on the phone about UC. The first time getting diagnosed you cant believe this is happening to you. you think the doctor is wrong with the diagnosis. it is just so hard to cope with. I was telling her that at first i freaked out at the idea of losing my colon. but over time the option really is inviting. It must be the longer you have this illness the more appealing a bag sounds. ugh…and the bedside manner of docs. I am amazed with how many gastro docs have no feelings. I have broke down crying in two seperate docs offices. i felt really bad because one was a guy. ha he didnt know what to do. then after the appointment i broke down in the car with my husband. one female doc told me there was nothing she could do for me after just being newly diagnosed and having tried one med. glad to get adifferent doc. :) hang in there.

  2. Peter NZ August 16, 2011 at 4:32 pm #

    Dude,
    Your story matches mine (except I’m older!). Same sysmptoms, same drugs, same drugs didn’t work, same impending surgery. Cyclosporin saved me too. I got better but still have flares occasionaly.
    I was on Azathioprine for a while but it stopped my bone marrow working. I would recommend that if you are taking this that you have regular blood tests. I was having them weekly and then monthly (Full Blood Count and Liver Function). This is considered standard practice for those on this drug.
    I am now (usually) just taking Pentasa except at present I’m in a flare (that may or may have anything to do with a course of antibiotics for a rat bite) so am taking prednisone too.
    I have found that a gluten free diet has been helpful in keeping me flare free (I don’t eat animals either). Others are reporting sucess with SCD diet.
    Dude, I got better so no reason you can’t too. Don’t worry about what may never happen – it may never happen. Eventually you will wean off the pred and return to normal.
    Good luck to you,
    Peter

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