My name is Kelli, 32, from Nottinghamshire in England, & I have suffered with Ulcerative Colitis for near on 6 years now.
Well, what can I say to express the relief I feel at finding this site?? If I said right now I’m brought to tears by the discovery, it wouldn’t be a lie.
You see, this last year with the disease has been the worst of what I call “my UC life”, & I was beginning to think that I really was going to have to deal with it all by myself. As daft as it sounds, I had no idea that sites such as this even existed.
Thankyou thankyou thankyou Adam! And to all those who post their stories. You have no idea how it’s made me feel :)
So, my story.
Well, back in 2004/5, I was working at retail management level for a internationally known fashion accessories retailer, & under A LOT of stress. I had started to notice a definite lack of energy, appetite & general feelings of being unwell, but put it down to work stress.
Until, one day, I was finally unable to eat more than a bite, the food I WAS able to eat tasted like ash in my mouth, my concentration & co-ordination was deteriorating & most of all, I just wanted to sleeeeeeeeep ALL THE TIME. I woke up at 2am that night throwing my guts up until there was nothing left in me, but still retching, & nauseous as hell. I was rushed to A&E.
I spent the next week in hospital while many tests were undertaken, & was diagnosed with Ulcerative Colitis. I had never heard of it before in my life. I wasn’t scared, just confused. What the hell was it?
I was sent home with Prednisolone & Pentasa, & was off work for 3 months. I suffered with panic attacks & extreme fatigue. I couldn’t go anywhere alone. That was when I got scared. Thanks to the steroids, I looked about 6 months pregnant & I had people coming up to me asking when the baby was due. I could’ve died of embarrassment – I didn’t know what to say, I was so ashamed of my illness, so I just went along with them, saying “Not long now!”. A real low point. :(
However, after a few weeks, I started to pick up. My energy came back, & slowly did my lust for life. Miraculously, I went into remission. For 2 years! I was lucky.
Then, a re-lapse. I went back to my consultant gastroenerologist, who re-started me on Mesalazine. It seemed to work so well, that, after a couple of months, I was told I didn’t need to return to him. So I didn’t.
And didn’t, and didn’t – even though my relief turned out to be short lived & I continued to have up to 6 small flares in a 12 month period. I just thought I had to keep taking my Mesalazine & just, well, deal with it. And so this was how I ‘managed’ my UC for 18 months or more. Each flare got worse than the last, more frequency of ‘going’, more quantity of blood, until I realised that the disease had taken over my life. I was no longer working full-time permanently, & had been unable to for some time, & was living in fear of my own body. Something had to be done.
Back I went to the consultant.
Mesalazine again, but this time, an upped dosage. No other meds were discussed. No follow up appointment made.
And therefore, no real change. I was put on a low-fibre diet which had some effects, but I gained 10 lbs in the process & constantly felt slow & sluggish. Yet I have carried on like this ever since. I have moved away from my old area where all this took place, & now live in North Nottinghamshire (Robin Hood country!) & have a new consultant, but the meds & treatment I have recieved have been the same! Is this right?????
It came to a head in October last year when I had the worst flare of all. Very late one night, after a week of bad symptoms, I had started to ‘go’ every 10 minutes. Yep, you didn’t mis-read – 10 MINUTES. Then the ‘going’ started to have an added complication – vomiting. Then came the cramps. My God, the pain. Excruciating. I knew something was seriously wrong, so at 7am I was again taken to A&E.
And in hospital I stayed for more than a week while I was drip fed steroids to get the inflammation under control, & given Movicol to remove a blockage.
Upon being discharged, I was prescribed a 3 month course of Prednisolone & yet more Mesalazine. The Pred did it’s job, & I started to believe I could live a bit more ‘normally’. The side effects were horrendous though, & I didn’t ever remember it being like that before. The weight gain was the same, but the moon face, body aches & pains, & depression certainly wasn’t.
I couldn’t bring myself to look in the mirror as the steroids had changed my face so much, I didn’t look like me. I didn’t feel pretty, or feminine in any way & it made me feel so low. My boyfriend has always had a problem dealing with my illness & how it affected me, so this was affecting our relationship pretty badly at this point, too. So understandably, I couldn’t wait to be off the meds. I thought I would have some off the same good luck I had when I was first diagnosed, & I would finally have my life, & myself, back.
How wrong I was! The steroid course finished in January this year, & within a week of ending the course, the symptoms were back. I had suffered a viral throat infection over New Year, & put it down to that. But, after 2 weeks with no change, I thought “I’m NOT going through this again!” & took myself to A&E. I was kept in for 2 days, one of which was my 32nd birthday. Not the best I’ve ever had!
Tests showed that my inflammation was borderline, but constipation was causing my symptoms. I couldn’t believe it!!! I was ‘going’ all the time – how could I be constipated???
So, I was sent home with Movicol & a shorter course of gastro-resistant Pred, And the ever present Mesalazine.
And here we are. That brings us to right now. And how am I?
F*@~^ing ill, is the answer. And VERY p@**ed off. I mean, can these docs ever get anything right???? The steroids were on a gradual lowered dose, so upon reaching 20mg of Pred a day, I started to bleed. HEAVILY. I mean, I can’t even see the bottom of the pan as the water is deep red. And this is every time I ‘go’. I’m currently visiting the ‘old porcelain friend’ up to 20 times in 24 hours. I’ve been off work for a week, & am finding it hard to do the basic household tasks.
I’ve been feeling so ill & so alone, I’m sure some of you will understand that feeling. I have a consultant appointment in 6 days, but I have no hope.
Can anybody offer any advice?
P.S If anybody reads this, thanks for being patient. It was a loooong story, but it has felt so good to get it off my chest ;)
-This Story Submitted by “Kelli”
Mesalazine 1,600mg per day – very minimal benefits
Prednisolone Gastro resistant tablets 15mg per day – only beneficial at doses of 25mg or higher
Movicol powder sachets 6 per day – giving me major cramps for minimal results.