We need to talk...

Okay world, I've had enough. We need to talk. It seems you're all just not getting the idea of Crohn's Disease or Ulcerative Colitis. If one more person jumps up and down shouting that these illnesses are sorted by only changing your diet - your wrong, and you are well on the way to getting hit in the face with the frying pan!

*Warning - I composed this post whilst in a bit of a huff - sorry!*

I get it, its complicated as it effects everyone differently but the main facts are pretty much the same. I know it is not your fault, you've probably never even heard about Crohn's Disease or Ulcerative Colitis. That does not make it any less frustrating to those of us who live with it every single day. Maybe you don't have the illness yourself, I'm not going to exclude you on those grounds. In fact put your feet up and get comfortable because it's time we all had a talk.

WORLD WE NEED TO HAVE A TALK!

Crohn's Disease and Ulcerative Colitis are thought to be down to an abnormal gut reaction or imbalance of bacteria in our guts/colons triggered by an unknown environmental trigger. In the average person there is 'good bacteria' fighting off the 'bad bacteria'. When it comes to those with the illness it means our good bacteria is working over time and trying to fight off an infection (the bad bacteria) which does not even exist. So instead of attacking the bad bacteria, it attacks the wall of our intestines instead. This leads to inflammation and ulcers, cramps and pain. 

Main symptoms just to get you up to speed are vomiting, fatigue, more trips to the loo, loss of appetite, weight-loss, swollen joints and many more. Not to mention all of the secondary symptoms from medications and problems caused by taking these long term. Alongside these there are things like Anemia, anxiety, depression etc!

My friends and family are aware that I have Ulcerative Colitis, I have told them TIME and TIME again. It either doesn't sink in, they FORGET or they don't know anything about it. Which I think is the most frustrating thing about this whole illness. People are keen to chip in with their opinions before even reading up on the illness. 

I have a LIFE LONG INCURABLE ILLNESS. This means I will have Ulcerative Colitis FOR LIFE. (Unless they come up with a miracle cure, in which case we can all look back at this post and you can all prove me wrong.) For the time being, there is no cure. Cutting out a persons colon is a drastic treatment option NOT a cure for Ulcerative Colitis. Nor is it a guaranteed fix as a diagnosis of Ulcerative Colitis could be incorrect and in actual fact the person has Crohn's Disease (believe me, this happens) which means chopping out your colon will be of no benefit to them at all as Crohn's Disease can effect the whole digestive system!

I know you all mean well by sending me well wishes "hope you are well soon" "I can't wait for you to be better" and so forth. I don't have the flu. My illness is NOT GOING ANYWHERE or result in me becoming the 'old me' you once knew. I am now A NEW ME. Maybe this new me is a little more grouchy ha! It is here to stay - lucky me <-- this is sarcasm.

There is NO proven research to suggest that Crohn's Disease or Ulcerative Colitis are fixed by throwing all of your pills and medication in the bin and simply changing your diet. It is not proven so STOP suggesting it's just a diet change. I have read people say they have managed to come off medication because they tried a special diet, well done you. My best guess is that you have succeeded in reaching 'remission' which I imagine to a newly diagnosed patient may seem like their illness has improved...it will return, maybe not next week/month or year but it will be back don't take your eye off the ball. I am glad it has worked in your case. SUGGEST IT TO ME and I will probably compose a rather hostile reply. I am not interested in your magical grown purple carrots from pixie land, I just don't want to know about them.

Crohn's Disease and Ulcerative Colitis are pretty serious illnesses. Many with Crohn's Disease and fewer with Ulcerative Colitis go on to have major surgery to try and correct things. Surgery of any kind, no matter how big or small IS A BIG DEAL.

These illnesses come with HIDDEN dangers like isolation, loneliness, depression, anxiety, sadness. Even though a person does not LOOK sick please do not make the assumption that they are well. "But you don't look sick". Those suffering are super good at putting on a brave face. Through our illness we become driven, suborn, and unstoppable so chances are you will think we are fine. We are NOT fine, we are just super good at hiding it.

If you see me out, don't throw it back in my face. "But you were out the other day", yes and where was I the rest of the month? oh that's right, CONFINED TO MY HOUSE!! Stop making me feel bad on the one day I manage to muster the courage and strength to leave my front door. Stop punishing us for trying to lead a normal existence. Our illness has not magically VANISHED, we are simply ploughing on with life regardless of how sh*tty we feel.

PLEASE DO NOT nag, coax or persuade us to join in an activity if we have politely declined. CHRONIC FATIGUE comes along with our happy little illness. Think of your worst hangover, now imagine that staying with you day after day. I'm not talking 'sleepy' I'm talking "I can't think because it feels like my eyeballs are falling out of my head" kind of tired. Therefore, NO amount of nagging, pleading or begging will get us to show up to an event if we have thrown our hands up and admitted defeat due to tiredness.

Don't look to me for sympathy when you have the sniffles. I know you're feeling a little bleh but it is NOTHING compared to what I have been feeling like for YEARS. There is NO OFF SWITCH. There is never a break from Crohn's Disease or Ulcerative Colitis. It is with you 24/7 and is on your mind even when you dream! It's just there. Never leaves.

IBD (Inflammatory Bowel Disease) is NOT the same thing as IBS (Irritable Bowel Syndrome) TOTALLY not the same. It is like black and white - not the same. Neither is it like "I had food poising once, I felt rough" or "I had colitis once". No - not the same, not even close.

I CAN'T make plans with you because chances are I will spend the few days leading up to our big day out stressing and worrying if I will be well enough. Which means by the time the big day comes around I will be feeling poorly, have a HUGE knot in my tummy and will have to let you down. Please know that this IS NOT MY FAULT. I am not trying to be awkward by simply not showing up - I'm sick.

Both Crohn's Disease and Ulcerative Colitis will be with us FOREVER AND A DAY unless some super duper genius comes up with a CURE in which case I will quite happily get down and kiss his/her shoes!! Until then I would very much appreciate it if you would refrain from insulting us by thinking you know best when A) you have never heard of the illnesses, B) never read up on it or C) you don't have the illness yourself but think you know all the answers.

Please know that I AM TIRED. I do my best to 'blend in' and be as close to the OLD ME that you once knew. The truth is I am tired, I can't do all of the things I was once capable of doing. I don't have the strength to fight you as well as my illness. I have come to the stage where I DON'T CARE what you think of me, either accept me the way I am - with all of my stupid NEW quirks or bugger the heck off!

What I want most is for people to be EDUCATED about these illnesses so that we can stop sprouting silly things without even thinking. We have enough going on and to deal with, without the added pressure of people and their silly opinions. There are loads more but I have kept you here long enough.

There - rant over! I'm off for a lay down :D

Are you feeling alone?

I am SO fed up of hearing people say they are feeling alone. I hear people say they feel like they have no one to talk to. They feel like they are the only ones going through illness. It shouldn't be like this! In a world so advanced where technology and information is everywhere, why are people still being made to feel so alone?!
I want you to know....

I AM HERE FOR YOU! YOU ARE NOT ALONE!!

I am angered that people are made to feel so isolated. There are so many of us facing battles with illness that we need not have to feel isolated on top of our every day troubles. More should be done to eliminate the feeling of loneliness. You often hear the elderly say that they feel secluded, well I have come to learn that people facing illnesses can feel an awful burden of loneliness at times too. Whether this is because you are unable to leave the house or that you choose to stay at home as this is your 'safe place' you should not feel alone.

How simple is it to send someone a little 'hello?' or give them five minutes of your time? Why are illnesses kept to yourself when there are others suffering the exact same fate as you, feeling just as sad and alone. Whether you have Anxiety, mental health issues or an illness you don't feel comfortable talking about, you are not alone. There are others out there facing the exact same troubles, trials and tribulations as you.

The more I talk about my chronic, life long condition 'Ulcerative Colitis' the more I have come to find how sad and unhappy everyone is. The more I talk about the silly things I do because of my illness the more people I hear from saying 'yeah me too, I thought I was the only one who did that'. Truth is your not! You can bring comfort to others by simply talking about your condition, educating others and helping others to have an understanding of what you face each and every day. Illness is hard, there is no rest-bite. It at times can make you sad, angry, upset, disappointed, frustrated, beaten. Why on top of all of those things should you be made to feel alone?

We all need someone to talk to. Many find comfort with family and loved ones though I know first hand how much of a difference speaking with someone who has a the same illness as you can make. If you keep your illness to yourself then that makes two people who don't speak up and there for making two people lonely, instead of coming together to talk about things. Although talking does not answer or 'fix' things, it does lighten the burden. Conversation can bring a smile to your day.

Therefore here is my smile to you - you are not alone, I am here.

Are you tempted?

A very apt way to begin my post about temptation. I am of course refering to 'trigger foods.' For the benefit of my followers that don't have Crohn's, Ulcerative Colitis or IBD, there are foods which we should avoid as it is believed to make our symptoms worse. For example, if your not meant to eat a whole bag of nuts and you eat a sack full of them...your going to feel really horrible the next day.

I'm not even going to begin listing the 'naughty' foods because we will be here all day. It seems somebody will have an opinion on any/ all kinds of food to avoid. I avoid many of these suggested foods and sometimes feel like it would be easier to just live on a diet of water. *Disclaimer* You should not live on water alone as that is silly and in turn you will die, and I will have one less reader, so let's maybe just not do that!

My temptation food is ... white bread. Huge white fluffy squishy doughy white bread. Oh how I miss you terribly! I would post a photo of a huge sandwich but I would not like to temp any fellow IBD'ers so simply close your eyes and imagine it mm mm!

I have been pretty well restrained when it comes to the all mighty white loaf. Though the cracks will show when MOTHER <-- ragh!, when mother brings home a gorgeous squishy plump loaf for her to eat. She unknowingly whisks it past my nose and leaves it out on the counter top. I gaze at it in amazement, I could well be dribbling by this point. I would give anything to devour the whole lot... but I cant. Well technically I can but it would be a really bad idea and I would feel horrible the next few days.

So for now I shall just gaze in wonder at this plump squishy white loaf until my mother decides to devour it ... without me! *tear*

Goodbye white bread loaf, you have played such a vital role in my upbringing. We have shared some great times together and you have made me so happy over the years. But it is time we broke up! There is another in my life now, they are called 'gluten free', yes they don't bring me the same joy but I simply cant do it anymore. You are no longer good for me. Yes there are times when you are in my dreams but I know this is not my reality. I'm sorry, but It's for the best!

White squishy bread loaf 1988 - 2009

Let me know what 'trigger foods' you have parted ways with that you wish you could still devour. Let me know in the comments box who you are missing in your life. Hopefully this wont turn into a food frenzy HA!.

New beginnings, part 2 - Your thoughts.

If you are following my blog then here is part two of my post on 'new beginnings' giving advice to those newly diagnosed with Crohn's, Ulcerative Colitis and IBD. If you haven't read the first installment then scroll down to my next post and get yourselves up to speed or this post may not make much sense.

So in my first post I asked a few of those diagnosed with or who have family members suffering with these illnesses this following question:

*What do you wish you were told when first diagnosed?*

As always you were so supportive with your feedback and comments. Here are the wonderful thoughts and feelings of those who have already been through/tackled the very tricky first tentative steps with getting to know/ understanding a new illness. Let's get started:

* Stephen's diagnosis with Crohn's Disease came about in the form of a world-wind! Unconventionally he ended up having surgery to try and relieve his symptoms back in 1997, first thought to be due to his appendix. When asked the above question he replied:

"I wish I had been told the answer to the following four questions:
What happened during surgery? What precisely is Crohn's Disease? What do I need to know about living with Crohn's Disease? Are their any support groups/systems that I should know about?"

"I was released from hospital with almost no information, no planned follow-up, no access to additional support and absolutely no clue about how/what I should or should not be doing as someone who has Crohn's Disease, not a great position for anyone to be in. The medical protocols surrounding IBD have definitely improved since my operation and diagnosis in 1997". - Stephen Dempster

I think Stephen had a great point, there should be some kind of 'information pack' handed to those newly diagnosed to give tips, tricks and suggestions on what may help ease symptoms.

* Michael has had surgery following his diagnosis with Ulcerative Colitis. He makes a great point here about wishing he knew all the facts:

"I wish I was told there was a real chance of me having surgery. They told my father and I, to our faces that it's so rare and I won't need it... that medication would easily fix it. Obviously it didn't. What I wish about IBD doctors is that they'd be more upfront about things and not be afraif to tell the good the bad AND the ugly" - Michael Wyatt

* Like Michael, John talks about wanting to know the whole story not only part of the picture. Diagnosed back in 1976 with Crohn's he has since developed many secondary complications as a result. I've chosen not to include them here as the list is extensive and I don't want to worry/frighten anyone  newly diagnosed so let's just say there are a few.

"New sufferers need to get provided with better and more substancial information regarding Crohn's or Ulcerative Colitis. I do understand that the physicians are so reluctant to divulge all the potential secondary problems, I think they are correct in doing so. I wouldn't want to have to take on board having the illness and then be given more possible conditions to worry about. I think it needs a secondary adviser to help with the potential complexitis, working alongside consultants, would be the ideal way of handling the issue." - John Ingamells

* Similar to the above statement here is Kelsie with her thoughts on not wanting to know everything and how life with Crohn's and Ulcerative Colitis goes on regardless, rainbows and all ...

"The things I find I would have wanted to know when I was first diagnosed are also the things I'm glad I didn't know back then. If someone had told me, I would have been so sad at what my life would be like from that moment onwards. Learning them along the way has also made me appreciate all that I've learnt and now they don't seem as depressing because it's my life.
Learning about the symptoms such as fatigue, pain and all the interesting places doctors like to stick things. How society doesn't understand being 'sick' and that when we see 'sick' we assume there will be a time when we are not sick. Lastly how utterly awkward people are around sick people.
I wouldn't change anything. I would tell those newly diagnosed: it most certainly will not feel like it and you will struggle but you are about to learn the beauty in life if you just keep looking for the rainbow." - Kelsie Linfoot

* Tracy is advising us on behalf of her young daughter who has Crohn's. She says:

"I wish we were told it will take a while to find the right treatment and not to be discouraged that it might take a year or two to find what works for my daughter. I also wish I was given information on where to go for mental support in my area with like minded kids/parents with Crohn's" - Tracy Jackson

I completely agree with Tracy, there is no quick fix especially to those newly diagnosed. There is a long long road ahead one which is made a little easier by the wonderful and essential support we get from friends and family.

* This is echoed in the advice Christina has for the newbies:

"I think I would have liked to have been told that it can be a long journey for some patients to achieve remission and that it may take trying more than one medication. Every time my Crohn's fails to respond to a drug, it's pretty devastating. Maybe some proper management of my expectations on my GI's part would have better prepared me for the long journey I've found myself on" - Christina Matthies

I believe support and the management of expectations would benefit many as at times we can get a little ahead of ourselves. It's a long road with no quick fix.

* To round up everyone's great advice here are Kelly's positive thoughts on accepting life with Crohn's and Ulcerative Colitis and not letting it define you:

"Learning how your body attacks itself is hard, no one will understand it, including you. Instead of sulking and seeking other ways to ignore the pain, accept it. Life becomes so much easier when you accept it. You wont be as bitter and your focus in life becomes crystal clear. If there is one thing I wishes all of the Google searches I'd done then would have told me, it would be 'expect the unexpected'" - Kelly Crabb

*Sorry if I have got anyone's stories wrong, I'm super tired and have pajama brain! (let me know so I can edit it). I also had to cut down your answers as I wanted to include you all. :D Said with the kindest of heart. x

I hope this post will help any of those newly diagnosed with Crohn's, Ulcerative Colitis or IBD in knowing what to expect, what lays ahead. I hope it will relinquish some of the worries and fears you may have. The biggest thing I would like you to know that there is a huge support system for you out there and that you do not have to face this alone! What I have learnt from this post is that my fellow IBD'ers talk too much haha I'm teasing! Forever to hand with awesome support and advice!

If anyone wants to email me for a chat/support you can at greek92goddess@gmail.com (all other email addresses were taken ha!)
I'm here for you all as I know you all have been for me x

New beginnings...

When I was first diagnosed with Ulcerative Colitis it is fair to say it took a little while to sink in. In all honesty I had never heard of it before nor did I have any idea what it meant. I had no thoughts on what the future would hold as I didn't understand the chronic illness. Four, almost five years on and I am still learning new things every single day. It's a tricky condition to learn about as it effects everyone differently. The same rule also applies with Crohn's Disease which is closely liked and falls under the umbrella term of IBD. I hope this post will be a small guide for those who are newly diagnosed and looking for a little advice...            

My experience:

To bring you up to speed with my story even though I want to focus on my diagnosis.
Once upon a time, when I first started getting symptoms of Ulcerative Colitis I didn't have a clue it was all part of the bigger picture. I started nipping back and forth from the bathroom which without me realizing gradually over time took over my life. I had been to see a local GP about it and she was keen to refer me to have tests done (a camera on the inside) but like any young adult I was reluctant to go! I simple put it off, made my excuses and firmly shoved my head in the sand! *plonk*

I stupidly ignored the fact I was really really unwell and should have seen someone about it. I can't believe I let myself gradually get worse over the space of a whole year!!
I couldn't take the pain or bathroom trips any longer so against my own wishes I checked myself into hospital! I know the medical staff are trained on the skeletal form but I can't imagine what they must have thought when they saw me at only 6 stone walking in through those hospital doors.
The hospital staff were amazing, it took a little time for them to believe that I did not have an eating disorder but we got there in the end. I had a bundle of tests done and they did a marvelous job of fattening me back up. Which brings me onto my post topic.

My diagnosis:

I was in the hospital a total of two weeks, they were pretty clear from a few days of being there that they knew what my condition was. From what I can remember I don't think my consultant told me outright what they were treating me for, he only said I needed to have tests so that he knew he was treating me for the right thing. I am aware that many of those with Crohn's and Ulcerative Colitis can go for many years without having a proper, clear-cut diagnosis. I suppose because I had left things get so bad that my symptoms may have been glaringly obvious.

So the grand day comes when my consultant walks into my hospital cubical, pronounces that I have an illness called Ulcerative Colitis to which he then produced a leaflet with a bleak/ basic explanation. Before turning on his heels and leaving he throws in a little 'oh and you could be at higher risk of developing colon cancer one day'. Jeez thanks a bunch! In all honesty I read the leaflets but was no closer to having a real understanding. I certainly had no understanding of the severity, the seriousness of IBD or the profound impact it would have on my life.

Since then I have done my own research, mostly online and some through books. My mother is forever pointing out articles she stumbles across which mention the illness 'ww look at this'. Ha thanks mam. Please be wary that you can read many horror stories on the internet, I have stumbled across my fair share. I don't think you ever stop learning. You can learn from other peoples experiences though everyone has their own tales/ journey with the conditions. I wish someone would have sat down and spent more time with me when I was first diagnosed. It would have saved a lot of worry.

With this in mind I have asked a handful of people who suffer from Crohn's, Ulcerative Colitis, IBD and those indirectly effected by these conditions about their thoughts on the following question:

*What do you wish you were told when first diagnosed?* 

Myself? I wish I was told about the emotional mind-field that lays ahead. Dealing with the physical side of a chronic illness can ware on you but I had no warning of the avalanche of emotions that would come along with such a disease. I had no idea Anxiety was common among those dealing with such an illness. It beats you down, makes you tired and sad. Though it does bring its happy times too. It is such an overwhelming roller-coaster of emotions that tests even the strongest of characters!

I hope that by sharing the thoughts and opinions of those who have already been through the early days of diagnosis we can help the newbies. Those who are newly diagnosed and have no idea what to expect .
I'll include everyone's replies in a follow up post as the response I've received is way better than I could have ever imagined and far too many to include in this post.

**For part 2 - 'Your thoughts' Simply CLICK HERE**
ww how exciting ha.

Pajama day turned into pajama week...

When pajama day turned into pajama week. Ok so I told a bit of a lie, pajama day actually turned into a bit of a pajama month. Whoopsie!

Many will be able to relate to those days when you just fancy staying in your pajamas because getting dressed seems like too much of a hassle. Well living with a chronic illness often comes hand in hand with chronic fatigue. Think about those naps you take on the sofa after a hard days work...well we tend to nap before even getting to work. There are days when you have a bit of a wash muster the strength to put your socks on ... and wish to crawl back into bed! There is nothing more irritating that having a super long list of jobs you want to get done but you have the strength of a slug and move at a snails pace.

Which is how pajama day turned into pajama month. It started off with a bit of 'oh ill just take it easy today, spend a bit of time on the sofa'. That soon turned into 'I'm soooo sleeeeepy, I'll have a little nap at dinner time'. Before you know it there are days when you sleep all through the night (pretty uncommon with Crohn's Disease, Ulcerative Colitis & IBD but I have somehow mastered that one yay me!) and I open my eyes and feel like a bus has ran me over. How is it possible to still be so sleepy after 9 hours of sleep.

I'm not talking about your tired brain that fails to function at super sonic speed in the mornings until you reach for that much needed super strength cup of tea/coffee. I'm talking about the horrible hangover feeling you get after a wild night out drinking (Again something those with this illness do in moderation if even at all). To give you an idea of chronic fatigue, its like the hangover that never goes away.

It is far too easy to sit around in your pajamas all day ... every day?! Whoops ha. Don't get me wrong I am a person with a very active brain so sitting around doing a whole load of nothing is unimaginable. I forever have a good book on the go or am left to sort all of the house bills. My brain is forever planning, organizing and getting jobs done... even if I am sat flat on my behind :D I'm not lazy, I AM TIRED!! Like WAY tired.

Today however I have mustered the strength to get out of my pj's and am heading to the local shop. Don't get overly excited for me I am only going to pick myself up a magazine or two. Not much of a big deal but to those suffering with chronic fatigue it is one big victory to me!

There for, a little post to say that yes you will feel tired and worn out, in the case of IBD'ers it is perfectly normal to have pajama brain! Just be careful that your one sneaky pajama day does not turn into a pajama week or month! Let me know if your guilty of a pajama marathon, confess your sins in the comment box. :)

*Disclaimer* those are not my sexy legs nor are those my awesome slippers. *note to self - buy better slippers!