A quick update on my visit to both GI and surgeon.

I finally got to see the top man himself- "The Prof"!... I have nervously battled and debated with his colleagues for months about symptoms and side effects and their opinions on everything being a mystery and probably not Crohn's related anyway. So, I must have been positively manic when I finally stepped into his office, because finally I was sitting here, feeling crap. I no longer had to describe things, I could also now show them. It turns out my mystery rash is probably Crohns related, joints being sore too and headaches a side effect. I even found out that my anal leaking is fixable (now whether they'll get around to it or not is another story....). 

My only qualm about talking to this lovely competent doctor was this; he insists I must stay on Infliximab  to really give it a chance (its been almost 6 months now with absolutely no change)- the reason being that my options are limited. The type of Crohns I have has potential to get quite aggressive, and without medication I'm facing more fistulas and surgeries. But despite all this he tells me to remain positive. I left feeling somewhat confused.

My surgeon finally believes me that the Silicone plug surgery has failed, but due to cutbacks in the health dept they can't get me a bed any time soon. I need another scope and I'm on precautionary anti-biotics until further notice. The hippie in me really doesn't like the idea of anti-biotics to prevent infections... but then I'm not the one with the prescription pad.

Lately I do feel like I'm losing a bit of my positivity because all my bloods come back normal, despite diarrhoea  up to six times a day. I have migraines, sore joints, a persistent rash, constant cold, worlds worst healing, fatigue, anal leaking (yuck!) but then to top it all of- a new symptom appears!! I get tremors in my hands. It comes and goes but drinking coffee, or reading a book it's quite noticeable. When it happens, I look like someone who has hit the bottle for many years, and then suddenly stopped. I'm anxious to know why it's happening, but afraid I'm going to get a hypochondriac stamp on the front of my file. I don't want to lose credibility with doctors, yet I don't like suffering in silence. i mentioned this at my visit to the infusion clinic and he ran through a list of possible things, but mostly admitted he has no idea.. this has lead me to think; I felt this hopeless before I got diagnosed with Crohns, maybe there's something else that explains the symptoms that are a mystery. Perhaps they don't fit with Crohns, but together they fit with something else. Either that or I've lost my mind completely..

Invisible Illness Week

I found this on Youtube for Invisible Illness week, it really sums up how I'm sure a lot of people with chronic/invisible illnesses feel. Especially if you are young.
Do you feel it would be better at times if it was visible, or is it better that you can keep it tucked away?
This also ties in with my earlier post on deciding who, and if you should tell.

The vanishing surgeon

Today was my long awaited visit to the surgeon. I have been patiently waiting to see him him since my fistula started leaking, after a silicone plug procedure.

As usual, he left before I was called. The only times I've ever seen this man is in theatre! Its frustrating to be told every time that "Dr A should really take a look at your file as I dont know your history, perhaps next time we will get him to see you".. Perhaps one day we will meet..
Result; the consultant tells me it is likely my surgery has failed, but I'll need to come back in 2-3 weeks to take another look as he's not sure what the next step is. This would also happen to be the one day my fistula shows me up and looks clean. Sigh!

Can't complain much though, Infliximab seems to be giving me a bit more freedom to eat this week! No longer debating whether I can actually make it through the remainder of my college course with all the bathroom breaks and tiredness.

To tell, or not to tell?

I listened to a very moving documentary at the weekend about a young woman on the kidney transplant list. She described the nature of her illness in a way that I really identified with; spending days in pain, but trying so much to be normal. She spoke of kidney disease as a silent illness, and in a sense it was a blessing that everywhere she went, nobody knew she was sick. But it was also a curse- because nobody understood how sick she felt.


One thing I have debated a lot is the decision- to tell, or not to tell...

This decision is a very personal one; it varies from person to person. I have read stories where it is one persons little secret, another person will shout it to the world, unafraid.
Im in between- not ashamed to say it, but not willing to advertise.

You see, telling no-one can be a lonely road- and I found it hard to state 'I don't drink beer', telling one friend that im not going to another friends house (because i worry about the uncleanliness all of a sudden), I had new list of things I would and wouldn't do... To be honest it made me sound grumpy.

 Days after Infliximab; wandering around sleepy and headachey- that kinda sucks when people tell you to pull yourself together and go have some fun (because they think you're depressed, not tired). My friends are all young, only three have settled down like me- so you can imagine their lifestyles' are without the worries of older, or sick people. And diet isn't so great either- or had I just become a snob to refuse 15 cent noodles for dinner... I guess it made me feel better to be honest, if it came up.

It did make some people uncomfortable knowing I had a bowel condition, and others now tell me all about their toilet habits (not that i ask, or tell them).. or ask whats normal (as if I'd know!!)
I'm lucky to have friends, who although will not push the boundaires of what I can and cant do/ they also still see me as me. As I mentioned before, I've always been a sicky person- now it just has a name.

Of course- the decision to be open has its major downsides too- some people cant quite accept it. When i first told my father (perhaps this says more about character than anything, but beware-) he insisted I did this to myself. Thanks dad. Apparently it was all that anorexic business that made me sick. I lost weight because I was sick.

Then theres the overly fascinated, its not their fault- but they can only see you with a giant stamp of IBD on your forehead. After telling someone over lunch once, they asked 'should you be eating that?' every ache and pain nearly had them calling out for a doctor. Everytime I do something I hear "should you be doing that?". If I got pale they would constantly hound me, try supply me with endless cures... but the worst of this was they still werent exactly sure what crohns is. This means I was terminal in their eyes, and it was miracle I was walking around, acting so normal...

I also know a few people who just love having a sick friend- I think it makes them feel good when they spread news about me being poorly and how much they tried to help... desipte their being no heart in the help as I clearly stated I was fine!

It really is an individual descion, and down to who you choose to tell. But there is nothing to be ashamed of, and you need not suffer completely in silence.

I know that its hard for someone who isn't sick to grasp how you feel.
My boyfriend has often rolled his eyes when i announce "I feel like crap"... he'll reply "What's new?"... This can make me feel a bit deflated.
But on the other hand- he's held my hand and put up with my drugged up mood swings everytime I've ended up in hopsital.
And despite being a pretty squeamish person- all this bowel business doesn't make me less attactive, apparently. Most stories I have read about it was women who couldnt stand their partners knowing about fistulas or that they get diarrhea- I think people should accept you the way you are. I have a leaking fistula; it makes me feel far from sexy.. But- it's my battle scar, we all get them; nobody goes through life without ever having a few battles.
I guess there are points where we will be alone with this disease- but how is that different from the life of a healthy person? We are all alone sometimes- thats just a fact of life.
I recommend the spoon theory for explaining to anyone what life is like with a chronic illness.

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?