Ulcerative Colitis Tips


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"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

That’s Not My Toilet

Introduction:

I’m a 17 year old female who has been suffering with Ulcerative Colitis since I was about 13 but diagnosed at the age of 15, and I am currently 9 months through a 12 month youth exchange in Denmark.

My Ulcerative Colitis:

I am an exchange student! oh.. and I have UC. I remember at the age of 13 that something wasn’t right when I went to the bathroom, I never thought it was a big deal until I was in Japan on a school trip and constantly wondering where the bathroom was.  A week after arriving home i told my mum i had ‘the runs’ since i had arrived back from the trip so we went to the local doctors and they suggested a blood test and stool sample, only thinking it could be a bug from travelling.  The next day being a Saturday my mum got an urgent phone call from my doctor telling her to take me to the emergency room most probably for a blood transfusion, i was scared and worried about why this was all happening.

After a 6 hour wait and many blood test and .. examinations i was finally taken up and given a bed.  I never realized this would be where i would stay for 2 weeks being that girl who was so anemic she should be dead but nobody knew why.  First things first, the doctors got my anemia under control with a iron infusion and 2 iron tablets twice a day.  My levels began to rise and they began to think about what could have made me so anemic. I understood nothing.

A week later i was booked in for a endoscopy and a colonoscopy, the prep was disgusting,  i couldn’t down the whole 1.5 liters so i got one of those nose tubes to help. Next thing i know the doctor is telling me I have UC when i’m half out of it must say.. I never expected it to be something i would have to live with forever.  Instantly the medications begun with a high dose of prednisone which helped me to gain 10 kg and get a pretty moon face :) I did need to gain the weight though as i had never been over 40 kg this was all by may 2010. My UC had been under control for the rest of the year. Next thing i know its 2011 and i’m an exchange student in Denmark living life as a normal teenager having the most amazing time of my life. I hadn’t had to worry about bathroom’s and telling everyone why i take medication, it was almost as if i didn’t have UC. Living in someone else’s house it is a new routine all the time that you constantly have to re-adjust to and your mind is on everything new and different.  I begun to get out of routine with taking my medication twice a day. In may I went on a euro-tour for 18 days on a bus with 52 other exchange students i had once again got distracted and found it hard to take my medication everyday. but i managed just fine i could even manage to sit on the but 12 hours only going 1 time when we stop. I must say i did feel lucky i could feel ‘free’ during my tour. Once i got back to Denmark symptoms started and i had moved into a new host family. I find it embarrassing enough going to the toilet over 3 times just while i get ready for school in the morning’s let alone when it’s not even my home or family.

exchange student with colitis symptoms

As time went it wasn’t really getting worse but i know for a fact it wasn’t getting better. I was ‘disappearing’ over 10 times a day and begun to stay home from school because just the walk to the bus stop would make me worry i wouldn’t make it to school without going. Then my mum had came to visit me and once again i found myself travelling around Europe going places i know nothing about just hoping there is a bathroom at the next stop. We traveled for a week and i told her i was feeling sick again, i completely lost my appetite and was going every hour or so, i couldn’t sleep without needing to go and the first thing i did when i woke up was.. GO TO THE TOILET! at the end of the week i got on a plane and flew back to good ol’ Denmark where i only got worse, i had yet again moved to a new host family and embarrassing enough the bathroom requires me to walk past everyone so everybody always know where i’m heading. It’s bad enough staying in there 10 minutes.. but when there is gas.. well that’s awkward. i finally got a blood test and they told me to up my medication and have iron tablets again. fingers crossed this works cause I’m really and sick of shitting in someone else’s toilet.

Ulcerative Colitis Medications:

m on 4 tablets 2 times a day of Mesalazine
and 100mg of azathioprine per day,
also 2 iron tablets a day

Submitted by “Sarah’s Adventures” in the Colitis Venting Area

 




denmark, exchange student

5 Responses to That’s Not My Toilet

  1. .D. October 16, 2011 at 12:06 pm #

    Wow. that sounds though… I had to quit my job to get better in order to reduce all my stress. If you are dealing with stress while living at other people’s house, i would say try to get a hotel room or go back home. I believe the only way you can get better is by resting comfortably at your own privacy and taking care of yourself Physically, Mentally and Emotionally. If you have no choice but to stay there then i would say follow the SCD diet and Drink plenty of water, keep yourself happy, laughing watching comedy videos and avoid all stress. Stress is directly related to symptoms, aside from your diet. Good luck.

  2. tuxedobird October 16, 2011 at 7:50 pm #

    MaybwI missed it but did you explain about having UC in your application? I would expect your host family would know and understand that their guest has a significant disability and woulf make you feel as comfortable about using the toilet as possible.

  3. Hel October 16, 2011 at 10:06 pm #

    I can really relate to this story. I was diagnosed young too, but nit as young as you. I tended to ignore having the illness and also travelled and stayed with people, but it has become too stressful as the illness has worsened over the years. Strangely one of the mist difficult situations I find myself in was also staying with a Danish family. These were good friends, old neighbours in fact. I had told them all about my illness over time , given them pamphlets on it, they’d seen me ill. Yet I was given a bedroom the furthest from a bathroom which was located off the main living space. I had to trek up stairs, across rooms to get there. it was one of the most stressful experiences I’ve had. The diet there was also totally unsuitable, lots of raw salad and veg and seedy bread…..they had either forgotten or didn’t realise how serious my condition was. I was only staying there fir a few days but i was literally counting diwn the hours before I could return to the safety of my own home. I was so relieved to leave.
    I think when we’re well we do forget we need our meds to stay well and think it won’t matter if we skip them. Before you knw it, nasty llare.
    Good luck fir the future. You sound strong and determined not to let ths illness beat you, very admirable. Well done.

  4. Nanda October 16, 2011 at 11:26 pm #

    I love this and it totally relates to me! I am 20 years old, i will be going to Nepal next year for a few months to do some charity work! I have to live with a host family and i will definitly explain to them about my condition and hopefully they will have nice toilets and i wont be ill when i get there! :-/

    I wish you the best of health! xxx

  5. Peter Rye October 17, 2011 at 8:58 am #

    I am so sorry that you have had UC since you were 13 – such a young age. You are on exactly the same medication as myself, but I am not taking any Iron tablets. I have not had any bleeding since Sept 2009 when I was diagnosed with UC as a result of having a Sigmoidoscopy. The Hospital Doctor ( A Consultant Physician ) then gave me a pack of Mesalazine 500mg ( just 12 days supply ) but failed to say I should
    continue on taking this medication ! So the following March I had a really bad flair up which needed Hospitalisation and the usual drastic Steroid drips etc ! But now I am on what you are taking having slowly built up the Azathioprine from 50mg to 200mg per day. Still a bit worried about the long term effects of this drug, but so far no contra indications have happened and my Blood monitoring has gone from once every 2 weeks to now once every 3 months, and not seeing the Gastro Consultants anymore but
    only the IBD Nurse which in itself is encouraging !!! All in all I think I am gradually getting this under control, but still have bad days like to-day. My Son lives and works in Singapore and has asked me to visit but I have a mental block about making the long flight out there in my present condition. I admire you for living abroad with this condition. I Wish you all the Best for the future!

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