20 Years With Ulcerative Colitis – And Currently in a Flare

with one of my sons on the beach

with one of my sons on the beach

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




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6 Responses to 20 Years With Ulcerative Colitis – And Currently in a Flare

  1. Juliet
    Juliet September 9, 2013 at 5:41 am #

    Hey Phil!!

    You live in a beautiful part of the world!

    I think we all reach a point in our lives where having once just accepted what the doctors tell us, we begin to understand that they often do not know exactly what is best for our body.

    It’s good that you have a loving and supportive family. I think you’re on the right track reducing stress. I do not know what your diet is like and quite often what works for one person isn’t necessarily going to do the same for another. Trying an elimination diet is always helpful in identifying trigger foods/drinks.

    For myself, cutting out all processed and refined foods, especially sugars! I’m also caffeine sensitive. Water is the best thing to drink especially if, like me, you’ve a tendency to become constipated.

    Last year, I did a candida cleanse and had great results. My BMs had never been better and I felt amazing. Diet was hard to stick to though. I’m currently trying the SCD, but I think I need to repeat the candida cleanse. I’m also returning to some alternative stress relieving treatments such as massage, acupuncture and chiropractic adjustments. I’m planning on seeing a naturopath very soon too so I’ll let you know what she can bring to the table in terms of treatment.

    Have you tried any probiotics and L-glutamine ? (Excuse my spelling mistakes :) ).
    I wish you a speedy recovery.

  2. Briar September 9, 2013 at 1:36 pm #

    Hi Phil! I’m another Aucklander with UC – actually going into hospital today for my partial bowel removal, since all other options have been exhausted. But I’m ‘lucky’ in that way, in that my UC is really bad in a relatively small area, so they don’t have to take the whole thing out. But I digress…

    I don’t have much advice on the alternative treatments myself, as anything I’ve ever tried has either done nothing or aggravated my symptoms, but thought I would mention that I’m involved with Crohn’s & Colitis Auckland (we do social stuff, support networks and informative evenings and the like – I run the Facebook page (facebook.com/CrohnsColitisAKL) – I know you said that you’re leaving the city next year, but maybe some locals will have some advice in the meantime :) Good luck!

  3. bev September 9, 2013 at 5:58 pm #

    Phil…I have attained remission for 18 months with a GOOD probiotic (namely ULTIMATE FLORA CRITICAL CARE by RENEWLIFE), fermented L-glutamine powder, and a natural anti inflammatory called astaxanthin.

    After have UC for some 17 years now, and being on asacol and various streroid and asa enemas for 15 years straight, I decided to ditch the meds and go natural. Best thing I ever did. I only wish I’d had the courage and foresight to try it a lot sooner. Those meds really weren’t working and the doctor wanted me to go on the stronger stuff…like what you’re on. I thought, NO WAY…I am not going to hurt my body any further!

    This is the first time I have had real remission and it took a good probiotic to do it. Then. I found out that the L-glutamine actually heals the ulcers in the colon! I added that and it stopped the bleeding. The astaxanthin just supposedly helps witth inflammation, another problem we UCers have. Try it! You may be very pleasantly surprised!

    My two cents!!

    Cheers, and welcome to the community. It’s like a big HUG here :)

    Bev

  4. k September 12, 2013 at 7:06 am #

    Phil, I hesitate to say, “this worked for me, so you should consider it” but to read how you have suffered over the years, makes me want to comment.
    Have you looked into surgery?
    I had uc and was in a major flare when it was finally correctly diagnosed on a Wednesday morning and I was hospitalized. Friday evening they told me what surgery they might have to do, the next morning the colon perforated and they took it out that afternoon. and created an ileostomy So in a way I had it easy, the tough decision was made for me. Living with uc was impossible, I have always been grateful for the surgery, which was almost 40 years ago now.

  5. Coralie September 21, 2013 at 4:49 pm #

    Hi Phil

    I’m in Paeroa. Moved here from Tauranga end of April this year. You are right. The small town environment is the way to go. Have you tried the Specific Carbohydrate Diet? I tell you what, I was diagnosed with UC in 2008. My life was hell for 5 years. I was on 45mg Prednisone for a lengthy period and Pentasa 1000mg per day. Then I went on Azithioprine when nothing seemed to be helping. It did the trick for a year but I still felt anxious if I was away from the toilet. Next they taught me how to inject myself once a week with Methatrixate. Very stressful because i had to remember to do it at the same time on the same day of the week! Impossible. After trialling that for 6 months with no effect, I went on a 2 monthly drip of Remicade. I became more and more sensitive to it with each drip and the last one almost sent me into anaphylactic shock which resulted in a night in hospital. The turning point for me was the accident in front of my friend’ s teenage daughter. Amazingly, within the next few days I began the Specific Carbohydrate Diet. Within a week, I was a changed person. This was February this year. I have been on the diet ever since with no symptoms at all. You think you can’t do it but desperation changes all that. After the first fortnight where you feel you will always be hungry your stomach settles down. You learn to eat differently. It’s fine to snack all day long. You find yourself looking for restaurants that will listen and cater to your specific needs. It is becoming more do-able every day as cafes are producing more dairy free, flour free, sugar free cabinet items and chefs are usually pretty good so long as you give them specific instructions. I have no hesitation is suggesting this to you. Google the diet and go to the library to get out ‘Breaking the Vicious Cycle’ by Elaine Gottschall. It’s a piece of cake. Adam’s books are great because he is living testament also that the diet works and his cookbook is full of great recipe ideas. I thought my life was over. Now I’m actually considering allowing a man into my life, something I thought could never happen because of this sick disease. By the way, you don’t have to do dairy free. We can now get lactose free milk, made by anchor, and I recently had a discussion with the Matatoki Cheese Factory and the owner made me some lactose free Quark, with which I made satisfactory bread. I am learning all kinds of tricks to satisfy my need to bite into something that resembles chocolate, my need for something sweet to have with my cup of tea and my need for an interesting and varied diet. I eat better now than I did nine months ago. I feel fantastic and several friends and family members have joined me on the diet because they are noticing that they have similar but less aggressive symptoms. They have seen the results in me and know what I was like. You won’t regret giving it a go. Good luck and God bless.
    Coralie

  6. Coralie September 21, 2013 at 4:54 pm #

    Sorry, I would just like to add, you can start the diet while on the meds but I stopped all meds a months after going on the diet. No problem. Doctors don’t want to know about the diet. It would do them out of a job. Correction. Bowel doctors don’t want to know about it. You can’t do any damage starting the diet. You will be eating natural food that you probably eat anyway, only a lot more of it. I do hope you give it a try today. I can’t wait to read your recovery story!

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