Crohns disease is relatively new to me still -- or at least the terminology and diagnosis. I believe I have actually had the illness most of my life though.
If often feels as though I am ill as some form of punishment, but what for? Personally I like to see it as some form of test... to see how strong and positive I can remain. I'm not sure what the aim of this test is for, or why I am being tested in this sort of way. Why have more than one illness, and why ones that will never go away? I'm ill, but there are still many people much worse then me!
I was terrified upon having to have an endoscope, the fear of having a tube down my throat really scared me - what happened if I choked and couldn't breathe? Actually, having the endoscope wasn't that bad as I was heavily sedated - I actually barely remember any of it! According to the notes, I fought the nurse and bit her upon insertion of the tube down my throat --- I don't really recall much of this as I was in and out of sleep. Sorry nurse, but generally things that go in my mouth are to be eaten!!! The worst part actually was taking the drink before hand - 6 litres of Prep-kleen... come on 6 litres, the sheer amount is silly! It didn't taste nice either, drinking 6 litres of something I actually liked would be pretty hard for me! It hurt my belly so much and made it feel like I was on fire internally. I had to keep on drinking and drinking though as it had to be done within a certain amount of time. Mum kept coming to me counting down the minuets and giving me glass after glass. It did the job, but was very violent. I would like to say that this is the last time I'll have to undergo such things, but unfortunately not - I know I'm due another in a years time! Hopefully next time they will give me something not so violent and not 6 litres!!!
The words "life long condition" have stuck clearly in my mind. Knowing that I'll have crohns for the rest of my life and that there is no cure. Nearly all people with crohns disease end up with surgery of some form or another --- which is my current biggest fear. Luckily I have been able to avoid surgery so far. The chances are that next year I will be having surgery though due to the fact I have a stricture (a restriction caused by scarring). They are leaving it for a year though to let the inflammation go down and see how my situation looks after affective medications start to reduce the severity of my condition.
I have always been afraid of needles, mainly because my veins are "hard to find" my record being 19 attempts of re-insertion to find a vein without hitting a valve so they can actually get blood. I like the term which one Pleb used on me --- "You're as generous as a stone, getting blood out of a stone would probably be easier!" So knowing that I would need lots of frequent blood tests and monthly blood tests for the next year and maybe the rest of my life is not something I think highly of! Seriously, why do the vampires need so much of my blood! I'm getting much better with needles and actually am no longer afraid of them!!! I find them a bit painful and I do swear sometimes when nurses wiggle the needle around to try and catch the vein. I'm not scared any more, but my veins still are and try their hardest to hide! Actually floppy veins, that's a side effect of EDS not crohns!
I'm on infliximab, which is an infusion --- which guess what --- means successfully finding a vein!!! 4 hours sat there with a needle in my arm, usually at an odd angle in comparison to everyone else's due to the difficulty they had! For some it is 4 hours of freedom from the kids/home-life -- neither of which I have... but it is 4 hours to enjoy some bonding time with my dad. Dad has purposely booked my infusions off work and sits with me during this time, it is nice to have him there as usually he works in Germany. I enjoy catching up with dad and we sometimes share jokes about the infusion process. He escorts me to the canteen for food which I "Can" eat... and usually we end up doing a little dance to unwind the mess of tangled wires which I have managed to create!
I have had my fair share of "accidents", it is highly embarrassing at times when this happens, especially in public. I have however found a funny side to it, back to nature! We evolved from creatures who go where they like when they need to... it was not natural for us to find a "toilet"... to hide behind a tree, a bush or other form of covering - yes. A friend of mine suggested wearing pads/adult nappies which has also been recommended by an occupational therapist. I couldn't think of anything worse then this! It seems degrading to me, as long as I have a spare change when I'm having a "poorly" day then I'm fine! Luckily accidents don't happen too frequently as it is very rare I am too far away from a toilet. Geocaching an old favourite of mine can leave you miles away from any form of civilisation, but luckily no one is around... so no one can see if you make a sneaky dash behind a tree!
It really annoys me when people look at me or comment when I belch or pass wind; usually females do this. Most guys think it's funny/cool and try to make it into a competition. I just laugh if anyone comments or looks rudely at me. It is part of my condition and something which I can not control, I could beat most guys in a belching contest!
There are many days where I am in a great deal of pain, that doing even the simplest of tasks such as getting out of bed seem impossible. Even on a good day I am suffering from extreme exhaustion and spasms of pain, however on good days, I force myself to do as much as I can -- even if the following day will resort to being extremely ill. I want to make the most of the good days and push myself to the limits; I'm not going to let life pass by me having done nothing. I am exhausted beyond exhaustion, but I try and block this out and push the barriers. Frequently people have said about pacing myself, but this doesn't make any difference as the good days and bad days still occur at the same rate. Whether it is the crohns that causes my exhaustion, or a combination of all of my conditions I shall never know.
Crohns has thrown a number of limitations at me and challenges. Travelling is an issue as it may be an issue finding a toilet on time, not to mention I feel generally ill from travelling. Being in places where I don't know is hard as I don't always know where the nearest toilet is.
However, with limitations also comes challenges and new possibilities.
On diagnosis I found the one thing I needed was someone to talk to so searched on facebook and could only find groups that were non area specific. So I decided to create a UK only group 2 weeks later. This group has been a very good support for myself and for the members in it.
Upon finding myself unable to work or leave the house unsupervised I turned to my creative flare and started to put my skills to use. I started to make cards and felt decorations which I sold and still sell for crohns and colitis uk. (( https://www.facebook.com/groups/wolfiescardsandcrafts ))
I also found myself starting new skills such as stained glass which I have found really challenging and fun!
I found myself new ways to keep myself occupied and ways to manage my life in a way that kept me going, I wasn't going to let this horrible disease beat me and nor shall I in the future.
I feel proud of all of the other fellow crohnies (and collies) who have fitsulas and stomas; personally I don't know how I would manage myself... just the prospect of surgery is scary enough for me.
The phrase "pain in the @rse" is one I hear regularly... seriously, why is it even a phrase... I think the only people who should be allowed to use it is people with an IBD!!!
I've been on a low residue diet for a fair few months now where most of the food I used to enjoy is no longer on my list... I sure do miss my salad in the summer weather!!! I have however found myself trying new foods that I had never eaten before.
It's not easy to find yourself awake several times within a night, whether it is due to needing to go to the toilet, pain or night sweats caused by the medication that is supposed to make you better! Never the less, with lack of energy, us IBDers keep on going!
Some of the strongest, friendliest, funniest people I have ever known are those I have met online with Crohns/Colitis.
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