Ulcerative Colitis - My early experience/story

Hi all, new to the forum so bare with me please
My name is Paul I'm from Scotland and I'm a fit and healthy 25 year old or at least I thought I was ! It all started in December of 2013 I started having diarrhoea for few weeks which I thought was just a bug or an after-effect of a late night out/some sort of food. It then followed with pain and blood and I ended up with constant trips to the toilet during the night/morning combined with sickness.
I was meant to go into work the 4th morning of having these however I ended up phoning NHS24 who were very reluctant to get me to hospital and were more concerned in just getting me a hospital appointment for that day which I got with very little feedback but thankfully I got taken in the next morning when I phoned up again.
After 3weeks in hospital and a colonoscopy I was diagnosed with UC and continued a course of prednisolone steroids for 7-8 weeks, zantax, mezavant mesalazine, mesalazine enemas along with paracetemol and calcium tablets at home.
As a result I was off work for 4-6weeks but ended up recovering back to ''normality'' within another few weeks and was back at work eating varied foods, exercising, socialising/drinking alcohol, playing football etc
I took my 4 mesalazine tablets daily and was back to a normal 1,2 BM's per day and was feeling great again, I went 6months taking the 4 tablets daily with no problems whatsoever and was advised by a specialist to drop down to 2tablets following my progress. I had one or two bouts of diarrhoea within that time but nothing really noticeable or distinctive so started taking 4 again.
Then in December of 2014(near enough exactly a year on from the same time as I initially had the problems !) I started a flare-up followed by sickness in the mornings, I'm still at work but finding it hard to function the last week or two, thankfully I work different shifts so I have days off which I am able to relax and rest as I feel weak and tired at times.
So following these symptoms again I went back to the doc's where I was put on a course of prednisolone (same as when I was diagnosed), ranitidine and calcium tablets along with my repeat prescription of mezavant mesalazine 4tablets daily.
I've not drank any fizzy/carbonated drinks and trying to stick to relatively basic food.
I'm not going to the toilet as urgently or going as much during the night thanks to the steroids but my symptoms feel a lot worse and some which I never had initially. A daily day now consists of waking up in a rush in the morning and having diarrhoea followed by sickness/bile I then have another bowel movement which is just all blood etc.
I then take my tablets and have breakfast and feel good for the rest of the day until late afternoon/dinnertime where I start getting the pains on my left side and may have a bowel movement before or after my dinner again followed by pains through the night and sickness feeling/acid rising and a BM before I go to bed.(thankfully Im not up all night any more)
I have fevers/rosy cheeks and my bones feel weaker along with some muscle although I haven't been able to exercise for a month or 2.
I am now down to 4 steroids daily bringing them down weekly after starting with 8.
I seen my consultant last week who has said we will try another 2weeks with the current meds and has gave me omeprazole to help with my daily sickness, along with enema's(which worked a treat initially). If I don't feel I am getting any better I've been advised to go on to azathioprine ?
I've started my omeprazole today and started the enemas 2days ago so fingers crossed but the more it continues I feel I may have to go on to azathioprine.
I am still at work but as I said struggling with the symptoms, how has it affected your work ?
A lot of this you have probably all heard before but thanks for listening and any advice on anything I should try or expect at all would be very much appreciated or any food/drink that help/to avoid as I don't feel there is much information or advice out there bar Crohn's and Colitis UK even from doctors etc the disease all sounds a bit cloudy but I guess everyone has various experiences. This forum has been very helpful when I was diagnosed this time last year and searching different medications and clearly helps thousands of others so keep up the good work. The positivity and hearing everyone's personal experiences keeps me hopeful every day

Post Edited (paulzo89) : 1/13/2015 3:30:22 AM (GMT-7)

Hi Paul, it sounds like you have had a rough ride.

Reading your story I could not help but wonder why your consultant asked you to drop from 4 tablets a day to 2 a day, perhaps that was the tipping point, who knows! Anyway I do hope you start to feel better.

With regards to food I tend to eat what I like, but of course there are a couple of things I will avoid, which I learned over a period of time simply do not agree with me, alcohol is okay, but only a glass a day, its a process, and it takes time to figure out what works for you, but I will say that I think being really strict with yourself over food isn't a good idea, its bad enough having this disease without making yourself even more miserable by stopping your favorite foods because you might have read somewhere that it may not be good for you. I used a food diary for a month, a bore, but it helped me realize what I could and could not eat, now I don't need it, if something doesn't work for me I tend to know it fast..

Work is a problem....I haven't painted for months, I'm an artist, and I am not sure why that is actually....so I figured I would just let things ride for a while and see what this New Year brings.

Best to you.

Has anyone been on Azathioprine ? I'm a bit concerned about the side-effects/possible complications, what has peoples experience been on it has it worked for you ? I'm suffering badly with the pains, sickness, fevers and urgent diarrhoea/bloody bm's so don't think I have much of a choice !
Also I've started doing the enemas the past few days as they helped a lot initially, think they will help any or Im I too late into my flare-up now they wont have much effect ?

paulzo89 said...
Has anyone been on Azathioprine ? I'm a bit concerned about the side-effects/possible complications, what has peoples experience been on it has it worked for you ? I'm suffering badly with the pains, sickness, fevers and urgent diarrhoea/bloody bm's so don't think I have much of a choice !
Also I've started doing the enemas the past few days as they helped a lot initially, think they will help any or Im I too late into my flare-up now they wont have much effect ?

Enemas used nightly can make a big difference no matter where in a flare you are at. Use them nightly until the flareup is gone.

Aza has extremely rare side effects; it isn't prednisone. It's helpful to put the risk into perspective. The most concerning side effect to most is lymphoma. The odds of getting lymphoma do to aza are 4 in 10,000 (Or 0.04%). The odds of the average healthy person on the street getting lymphoma are 2 in 10,000 (or 0.02%). Hardly something to worry about when your odds of dying in a car crash are 1 in 100, or death do to heart related troubles is 1 in 5.

What Aza can due is make you more prone to infections such as UTIs, bronchitis, etc. And should you get those you need to seek your primary care physician as soon as you suspect you have it, rather than waiting it out for another week to get antibiotics. Normal cuts and bruises are fine, and you don't need to become a complete germaphobe or anything lol.

You might get an extra cold per year, and instead of it lasting 1 week, it might last 1.5 weeks and be more severe. Minor things like using hand sanitizers during cold season help.

All that said, I have been on 6mp (similar medication to aza) 2 years and I have not had a single cold or infection, or side effect do to it.

Yes, I'm in remission.

Uc requires medication and just to make sure you aren't stopping your medications without a doctor's permission are you? If you have a bad reaction to a uc medication then others can be substituted.

Yeah, aza takes at least several months to reach therapeutic levels in your body, so you'd need prednisone as a crutch to get you through until then, or something else. Steroid enemas, suppositories, or foams generally have less side effects then prednisone does, and might be worth mentioning to your gastroenterologist.

Good luck,

Docs will often use prednisone to bridge the gap as the Azathioprine will take a while to work. So that you're not left in limbo.

Symptoms got so overwhelming I ended up in hospital for a week...had IV hydrocortosine drips which have totally settled me right down. Two days out of hospital and my toilet is now just diarrhoea so big improvement, on reducing dose of prednisolone steroids again so hopefully does the trick this time round and can return to my Mezavant Mesalazine tablets.
Best of luck all with this battle