20 Years With Ulcerative Colitis – And Currently in a Flare

Introduction:

Hi,
My name is Phil I’m a 39 year old from Auckland New Zealand
I am married and have a wonderfull wife and have two great young boys of 2yrs & 5 yrs old . I was diagnosed with U C when I was 19 I have had many “flares” over the years to many yo count ,some worse than others lasting from a few weeks to at the worse 4 months . Had my lasts colonoscopy Feb last year .

Some more about me:

I am a fairly active person I enjoy mountain biking , walking , fishing and being in the outdoors .
I am a hard working full of energy ( most of the time ) kind of person , and enjoy fine foods which can have there curse! I enjoy socializing with friends and family and the odd glass of wine .

Symptoms:

Currently in a flare up with the usual symptoms .
Blood in stool’s , severe constipation , uncontrolled twitches ,feeling bloated , rectal bleeding and rushed bathroom trips .
Feeling concerned as I have a trade show to attend next week and just hope I can make it through with out incident!

20 Years With Ulcerative Colitis – Father with Two Boys

I have suffered this disease for 20 years now and have had limited success with remission.

The longest being 30 months, with some great highs and incredible low’s.  And at times hit rock bottom with this disease it has been a emotional roller coaster. One of the worse feelings to have had is the all to familiar tell tale sign of blood on the paper which seems to be a harbinger of what’s to come…
and being reduced to tears at the sight of it!

But at other times the joys of just being able to go to the bathroom normally .

I have never been one previously to question a Doctors recommendation on treatments and always just taken for gospel their points of view .

For most of my adult life I have experienced joint pain , insomnia , irritability problems at times headaches & severe back pain . When I was in my twenties yeah I read the side effects of the pentasa, azathioprine & prednisone but never really took much notice . I just assumed it was normal …the doctor down played these side effects of course . It wasn’t until I was in my mid thirties and having severe back pain issues and joint problems did I start to wonder what was going on .Yes I was naive and should have taken notice of what I was putting in my body!
I then started too.

This disease has change my life in many ways from restriction in diet ( at times) to physical ability and emotional stresses. To being more aware of my body’s signs and signals . And it will continue to change it and recently for the more positive ( more on that later)

My last flare was followed with a colonoscopy in Feb last year and I remember at the time researching the web for info on UC and stumbled upon some great sites including self healing , drug info and support groups .

I read hours upon hours of blogs and story’s and suddenly started to see myself in these pages/words and story’s that resonated with me .there were other people who suffered the same side effects as me and we’re talking about them ! Not only that they were discussing treatment options and diet changes wow!
I felt so much relief and drew courage and help from them . I said to myself after this flare I will contact one of those sites but never had the courage to share!

So my apologies I am ready to share now but…. It’s Taken another flare to to it !

I just saw the Gastro Dr this afternoon. Still have not got used to the examination ! More Prednisone 40 mg a day plus upping my current dose of azathioprine to 200mg a day . This dosage of Pred has previously worked so fingers crossed . This is the first time a flare has occurred during me actively taking my current meds of azathioprine ! ( I have tried the no drug option in the past but this usually leads to a flare)
So time will tell .

I am concerned about long term use on azathioprine and over the sore joints And back pain etc… Side effects .
Thankfully I have a supportive wife and family we are in the process of moving house in the next year away from the largest city in NZ to a smaller town which should help relieve some stresses with work etc..

If anyone out there can offer advice on alternative treatments or supplements that can help I would be very appreciative :)

Thank you everyone

Medications & Supplements:

Prednisone seems to work but is pretty nasty too!
The azathioprine had been working up until this recent flare up .
The pentasa didn’t work for me and neither did colifoam spray .
And as far as suppository meds go no joy there either .
I currently take usana essential multi vitamins and tried kiwi fruit juice .

written by Phil C