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It’s All About PMA (Positive Mental Attitude -in the end!)

recent picture of Erika!

recent picture of Erika!

Intro:

Hi my names Erika, I’m 48, single with three kids, 15, 12 and 10. I have a job working with owls which I love, am very active, constantly at the gym and have completed a couple of Tough Guy Challenges.
I don’t get ill….EVER!

Some more background info:

In September I started symptoms of bloody poo, went to the doc he ordered a colonoscopy. After I was sent home with a diagnosis of resolving proctitis. I had no idea what that was or what to do about it. A week later I called my GP, the secretary looked at my notes, said I’d been diagnosed and didn’t need to see the doctor again! I broke down in tears on the phone, told her I was pooing blood and had no idea what to do about it!!! Eventually saw GP who referred me back to hospital, my appointment came through for three months time.
Obviously couldn’t wait this long so went privately, saw doc at hospital within the week, he said take these steroids and you’ll be fine in a couple of days, I wasn’t!

Had another colonoscopy where Dr Bray told me I was unlucky and it had spread and now I had colitis. I was sent away with a foam, some Azathioprine and Mesalazine, I thought I was cured.

First couple of weeks fine but no change, then lots of changes.

Toilet issues resolving from one end but…..!

Sick constantly, stomach cramps leaving me unable to do anything, I stopped taking them on 29/12/14, felt instantly better.

Expecting my bloody poo back but no I seemed a lot better and was happy.

Symptoms Right Now:

So my next follow up appointment 7/01/15, I went in with a bounce in my step as I felt so much better after ditching the Azathioprine.

Told doc how I felt, he said my liver function test had been abnormal and I had no choice but to come off the med but now I was a prime candidate for surgery!

More tears!

Upset, angry and determined not to ever have surgery I left the hospital, next day had a flare, due I’m sure to the stress of seeing him!

It’s All About PMA (Positive Mental Attitude -in the end!)

Now I’m under a dietician (even though doc said diet was “bollox”)

And hoping to see results, I have a hospital appointment in 4 months and am determined to go in there and show him that diet can help and that he should never have written me off!!

My diet proving difficult and a little contradictory to what I read about colitis so have ordered Adam’s books and am waiting to download (when my laptop repaired!)

My diet at the moment consists of sheep’s yogurt, coconut milk, herbal tea, sweet potato ( no skin) turkey (I’m not allowed chicken) and spelt bread. No chocolate, ordinary bread, sugar, pork products, mainly gluten free products and I’m completely confused!!

She did say however that I am allowed vodka, in moderation, I don’t generally do moderation!!!! Vodka with cranberry juice and soda water is the only way I’m allowed to take it but hey it’s lovely ;-)

So having colitis has had a massive effect only life, I’ve gone from a single, carefree, lairy, happy 48 year old woman in August, to a depressed hermit, crying herself to sleep in October, back to an ‘i’ll show you’ determined to beat mainly the doctor if I’m honest but also obviously the disease woman in January.

He may not have known it but by writing me off as surgery material this doc has pushed me back to the old determined, never give up Elz that I was when I ran in sub zero temps across muddy fields and through obstacles getting electric shocks! It was fun believe me!

A little annoyed at the treatment really, how can you be told when you’re on your own, within five minutes of seeing the doc that you’re going to have to have a pouch? I mean surely he should have been a little more concerned about my emotional health as well as anything else?!

I have friends around me but they think I should have the operation, I’m single and feel I’d always be single if I went down that route. I’m proud of what I achieve in the gym and am proud of my flat stomach, I still love a bikini and sorry but really don’t want the operation.

Can anyone understand!?

At the moment I’m taking Octasa and herbal supplements Turmeric and Milk Thistle along with L-Glutamine and probiotics.

Really would love to hear from anyone who understands. Especially in the uk.

I’m a glass half kinda person and know we can show the docs that they don’t know absolutely everything, it’s all about PMA and mine is back big stylee! Rollin the rest of the year xxxx

written by Erika E

submitted in the colitis venting area




attitude, UK

5 Responses to It’s All About PMA (Positive Mental Attitude -in the end!)

  1. Kelly January 25, 2015 at 1:58 pm #

    I’m not from the UK, so I don’t know the opinion of a yank will suffice. ;) No one can make you have surgery if you don’t want it. Friends are great to have, but unless they have UC or Crohn’s they have absolutely no idea what you have been through and are going through. You sound very independent and strong-willed, which can serve you well as you advocate for yourself.

    If your symptoms are being controlled enough to suit you, by making diet changes, then it seems you should stay the course with that method, tweeking as needed. It can take a very long time to find what works and what doesn’t. Some people are able zero in a suitable diet more quickly than others, and some will find that they are unable to ever meet that goal. Only you can decide when/if you will try more drugs or have surgery. Stick to your guns and fight it out. That’s what we all must do. I wish you good luck.

  2. Bev January 25, 2015 at 4:30 pm #

    I can understand Erika! Totally. I also do not want to have surgery, and I truly believe that surgery does NOT have to always be the only option.

    I do not want to wear and take care of a bag. I have been exercising for 30 years and do not want to look after a bag in relation to that either. I do not want a stoma. I like my flat belly just the way it is. Call me vain…I don’t care. I am also happily married and do not want to look any different than I do now!

    Just so you know…meds can actually exacerbate UC, and what’s even worse, your body may reject them. Mine did. My body does not like pharmaceuticals…

    I have been in remission and totally med free for about 5 years. Instead of going into my regimen…you can read all of my posts. It’s all about probiotics for me, because after all, ‘they’ are finding that UC is caused by our guts being stripped of the good bacteria.

    You DO NOT have to have surgery. You are the boss!

    Cheers

  3. Betty January 25, 2015 at 9:04 pm #

    My son was diagnosed in 2012 and I have seen him through ups and downs. Everyone comes to their own decision regarding surgery but it seems there are too many things for you to try before your doc jumps to surgery. I can tell you that when my son first became ill I read about surgery that day and found it so distressing. Three years later I can see that if it comes to this it isn’t the end of the world and can change life for the better. I have however seen my son go from feeling really crappy to normal over a period of weeks or a couple of months making it seem very worthwhile to work on conservative treatment. Someday surgery may be needed if it is life will still be good. As I understand it most ucers who have surgery only use a bag for a short time and go on to a j pouch so take comfort in that. Read Adams website there are so many possibilities for treatment. I hope you find treatment that works for you. It sounds like you aren’t ready to make the decision for surgery and that you are not presently facing a medical emergency so explore your options. All the best to you.

  4. Tom
    Tom January 26, 2015 at 3:02 am #

    Erika

    Like the things you said, surgery is also about PMA aswel.

    I was 23 when i decided to go ahead with surgery and 24 when i decided that i didn’t want a Jpouch and was fine living with a bag for the rest of my life.

    If you can get into remission fine, but if you are struggling to live a normal life surgery may be your only option in the future. To be quite frank, your children will not care whether you have a flat stomach anymore as you will be healthy and ultimately happy.

    As far as gym stuff goes, check this out http://www.dailymail.co.uk/health/article-2710549/Bodybuilder-forced-career-devastating-bowel-disease-fitness-model-colostomy-bag.html

    All the best

  5. Graham from England
    Graham January 26, 2015 at 3:10 am #

    Hi Erika,

    Though we have a free at the point of use health care service in the UK I have been constantly frustrated and let down by it IMO. Taking control of my own health has without doubt produced the greatest improvements in my UC.

    This is very difficult with all the conflicting messages about what foods are good or otherwise. This will take time and is a slow and frustrating process. As you probably know, what works for some does not work for others. Most people here seem to be on probiotics but they just blocked me up. I have been slowly working through some of the main food groups that can cause health and digestive issues. Trans fats, sugar, vegetable oils, processed foods and excess alcohol seem to be a no no for everyone. Beyond that it becomes personal, wrongly restricting foods you can tolerate is also bad as we are generally nutrient deficient.

    I did well on lactose free milk but even better on A2 milk, A2 milk protein is well tolerated. Limiting coffee (sulphates) and eggs has also helped.

    A few simple things are very important.. A good night’s sleep, reduce stress, relax etc. You could also consider putting yourself 1st now, I never did but now see that if my health is not good my dependents will suffer.

    Exercise is important but i’ve read many times that overdoing it is counter productive for those who are not well.

    As you are in the UK I strongly recommend taking Extra Virgin Olive Oil (15ml) 3 times per day. Every 8hrs before food. M+S have a superb oil, Italian “fruity with a peppery finish”. It is important to get the correct one and this alone has provided me with very long periods of remission. It is also extremely healthy, anti inflammatory, anti bacterial/viral, anti platelet and balances the fats in your body.

    Best of luck and keep up the positive attitude, you can and will get there!

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