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Can I Be Normal?

Intro:

Hi. My name is Aine and I’m from Ireland. Diagnosed with acute IBD about 12 years ago. Im divorced with four adult children and self employed. Definitely blame stress and anxiety for my worst flares. First major flare started just after my marriage broke down. I notice ever since that the minute I feel real anxiety my stomach quite literally clenches tight. I work hard on being calm, take exercise and try to rest. However we cant avoid real life.

Some more about Aine:

My life is generally fun. I work hard, sometimes too long hours, I play golf, as much as I can, I walk and in the Winter I go to the gym and swim a bit. I have two kids working abroad, soon to be three. I visit my daughter in London a couple of times a year and I go to the sun Spain and Portugal twice a year. My joint pains are coming between me and my life at the moment. Im 53 and I feel 90.

Symptoms:

Bad joint pains. BM twice daily and fairly normal. Yipee! Headaches from the sulfazine and some nausea but only on it five days. Cant sleep so spend a lot of the day fighting tiredness.

Can I Be Normal?

In the beginning the blood was the scariest thing. I had cramping, too regular BM and total exhaustion, but this fresh blood leaving my body every time I sat on the toilet really got to me. I’m with the same consultant (GI) from day one. He played it down so much after my first scope that I never saw this last 12 years coming. I have had to learn so much myself. Initially Asacolan worked magically for me. So much so that every year I would give it up and be sympton free for quite a while. Then I would become anxious or stressed over something and before Id know it , bang, right into a flare. None of my doctors ever spoke about diet, although I regularly asked. Just this year my doctor sent me to dietician who specialises in The Fodmap plan. No I actually didn’t go, but after reading all your stories I feel I might.

This past years I’ve been particularly bad. I had an ovarectomy, then cracked my shoulder, got pneumonia and of course the most horrendous flare followed.

Tip for UCers. If your system is struggling with pain , flu, or any other illness, you WILL get a flare. At those times you need to rest up and be kind to yourself to try to avoid the flare. I know this now , but I didn’t.

The pain from my cracked shoulder seems to have started general joint pain. The doctors never informed me that thos pain could be connected to my IBD. I had to figure that out for myself.

Ive been through the mill on medications this year and would love to give Adam’s diet a go. I’m a a bit of a wimp there. Never was much good on diets. I weigh 87kgs and have a BMI of 32. So I need the diet but struggle to be good.

I want the joint pain to stop. I want to not be so tired all the time. I want to stop being terrified every time I get anxious or stressed. I want to be normal!

Medications:

Asacolan was brilliant in the early days
Immuran was horrendous, nausea, sore mouth, sick, headaches.
Sulfazine 1500 mgs per day . Headaches and nausea at the moment. Will it pass? BM best ever since I started.
Hated the enemas, so stopped them.
Mezovant at 2400 mgs fine at 3200 headaches.
Now on 1200 per day

written by Aine L

submitted in the colitis venting area




5 Responses to Can I Be Normal?

  1. Bev August 25, 2014 at 1:50 pm #

    Hello Aine,

    I am thinking about your title to your story…is there antthing about our horrible condition that could be seen as normal??? LOL…I think not!

    Your story is a lot more normal (common) in UC than you think. I have read countless UC stories on this site and have come to realize that everything is ‘normal’ and yet no two stories are exactly the same.

    All of the meds made me ill in one way or another…especially headaches. I wouldf give the eating pkan a go for sure…don’t look at it as a ‘diet’, but as more of an eating plan for UC!!

    Cheers, and welcome to the site.

    P.S. I am female, even tho the name is Bev…in the UK, it is a common male name.

    :)

    • aine August 25, 2014 at 2:04 pm #

      THank you for your encouraging words. its great to be heard.

      Aine

  2. Matt August 25, 2014 at 2:09 pm #

    Hi Aine,

    Just to be the ying to Bev’s yang ;), meds are the only thing that work for me, specifically Infliximab (or Remicade in the US). I’ve tried all the diets and other meds with varying results but the Infliximab sorts me out in 48hrs. I was diagnosed in 2005 and had a horrible first few years, in and out of hospital with no quality of life. The doc then suggested Infliximab (I would have tried anything then) and it was like a miracle. I still have the odd week of urgency or constipation but this is more down to me being an idiot and eating badly (red meat and coffee are my worst enemy). A sensible and balanced died (including alcohol) combined with Infliximab has given me my life back.

    • russell andersen August 27, 2014 at 6:50 am #

      Matt whats up ? what you wrote is identicle to my UC history . Ive tried pretty much all the drugs out there with no success . ( remicade is my one and only miracle drug ! ) has also given my life back . yep ! thank god !

  3. aine August 27, 2014 at 7:04 am #

    Again. Great to hear your comments. Latest is I an just through a 3 week bout of pneumonia. Last time. Straght into a flare up. Im scared to go back to living. Have to work. Did 3 hours today and had to go back to bed. All advice welcome.
    Aine

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