I have a bad tummy

Welcome to Luxury loo roll :)
As far back as I can remember, I've always had a "bad tummy".
I was on special milk as a baby. As a child and teen I used to call it my "nervy tummy". My "nervy tummy" didn't really set off much, but under periods of stress I got dreadful cramps and diarrhea. I got so many infections, abscesses and bugs that doctors and hospitals no longer phased me. In fact, I had a hard time when at 15, when I realised that most people barely ever went to hospital. Friends joked about me being the "sicky" one.

Nowadays, every doctor I meet comments "such a big chart for a young lady"
At 19 when I fell pregnant, I used to foolishly brag that constipation (a common affliction in pregnancy) didn't affect me. I spent a lot of time running to the toilet, and I saw it as normal. In the following three years, I put all those pains, aches and toilet rips back down to my nervy tummy and moods. My family doctor was sure it was a mental thing too.
It was only when life began to improve that I begun to suspect that something wasn't right... How could I sleep so long and still be tired? Where had my appetite gone? I compensated by eating really healthy foods. The cramps kept on coming; I even had scans of my uterus done to make sure there were no complications after birth. My doctor still insisted Post Traumatic Stress Syndrome, that I should urge myself to eat and put on more weight.

Then July 2010 I find a lump between my lady bits and my bum. I weighed just 7 and a half stone, was deficient, despite my diet and vitamins. The hospital sent me home claiming antibiotics ought to fix me.
In September my GP rushed me to hospital. Under anesthetic, doctors found an abscess "the size of a golf ball". Both the doctors and I had suspected a tumor; I cant express how relived I was. The abscess was difficult to deal with, needing morphine to change dressings, not being able to sit or get around. But, I was delighted that I could now be healthy again. It wasn't the first time I'd ever dealt with something like this, so I just wasn't worried. I had two ops for abscesses on my ear drum, and one removal of cysts from my ovaries.
When my health didn't improve, I just suspected I was in for a long recovery, as usual. The stomach problems could be due to all the anti-biotics and pain-killers. Yet, in November I was still feeling friendly with my toilet. And the site where i had an abscess was leaking. This time I went back to hospital, and explained that my gut is telling me there's something up. An MRI revealed a large fistula on my anal sphincter muscle (meaning it was in-operable). They suspected IBD, finally seeing that I did in fact eat (even dreadful hospital food), and not have an eating disorder. They advised me against all the foods I'd been eating for so long- Nuts, grains, granola, high fibre cereals, and an abundance of fruit. Who knew my healthy diet could cause me to feel so sick!

It was Feb 2011 before I received the results of my bi-opsy. Each time I was sick, I would admit I might have IBD; all other times I was in denial. I went along that day with so many questions about my fistula, and how we might get rid of it. Just days before my 23rd birthday, the surgeon asked about my plans, wished me a happy birthday... and told me I had Crohns Disease. The ton of bricks analogy describes it accurately. I had no idea what to do with my life, if I would even enjoy it. Worse still, would I end up alone? How could I cope parenting my little boy alone, and now with chronic illness added to the mix?
The next few months were spent just waiting to hear from a GI. I was fearful every-time I felt sick that something would happen. After I met the GI, it all became real... And they didn't seem to be listening to me..
So, I went back to my denial. I have no idea why, I guess maybe it was easier to take the approach of ignore it and hope for the best. I grew tired of fighting doctors to listen, and didn't like my GIs refusal to let me change my diet. I hated the idea of drugs, and side effects.  I stopped eating things I knew didnt help (but still hung on to things i really dint want to give up)- but took no extra care of myself. I left all that to my future self, I'd worry when things got bad.

August 2011, I started Infliximab- hating the idea. the risks worried me (still do), and the side effects sounded downright nasty! despite fatigue and migraines- life seemed colorful again. My good days became really good, and I accepted my illness. I even fantasised about remission!

In September, I stood my ground with my surgeon and was put forward for a silicone plug implant- to heal my fistula.
Except recently the fistula started leaking again, with pain. And the Infliximab seemed to stop working. (all i seem to be getting now are side effects- skin rashes, fevers, sinus problems, infections) The doctors advised maybe I should go on a stronger dose. The last infusion (just over a week ago) hasn't given me any relief. So I've had over a month of feeling unable to cope, pain, diarrhea, and just being fed up of it all. But at least I'm now dealing with it.
Its been tough, because those close to me glaze over when I express how hard I'm finding it during this flare. I've decided to take responsibility for my ilness, start caring for myself- ie Sleep better, eat better, and stand my ground in the doctors office. Anything to seek out the healthy days!
I'm ready to accept my journey, and try to find the positives. I can say I'm no longer quick to judge people (who knows what they have to deal with) and I'm not ashamed of being a Crohnie.

I plan to write my honest account, finding the lighter and funny side at times too. Hey, how serious can you be when you watch others fighting about the fart you just let off?