# On generally being fed up.



## shaunbern2001

Evening All.

I'm only an occasional visitor but I just wanted to say I'm fed up with having Crohn's. I arrived at the conclusion a short while ago that I don't want to have it any more. I think I might give it to someone who deserves it, maybe a politician or a banker.
There. I feel better already!

Diagnosed with 'probable' Crohn's Nov 2012
Current meds: Azathioprene 100mg. (Awaiting MDT review)
Previous meds: Buscapan (a 'helpful' GP); Pentasa ("Why are you taking this? It's useless for your condition"); Prednisolone (joy).
Spent a year on Senna because someone 'forgot' to review my notes.
Waiting for the Humira to begin when the Azathioprene reaches the end of its shelf-life.
Supplements
Probiotics
Multivitamin/multi mineral tabs
Magnesium/Calcium
Cod liver oil
Mega vitamin B


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## FrozenGirl

Lol. I often wish I could bestow my UC on murderers.


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## shaunbern2001

Thanks FrozenGirl
The list starts here. 'I would pass my disease on to...'  You don't even need a 'because'.


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## DJW

I've never understood the line "wouldn't wish this on my worst enemy".  :devil:


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## shaunbern2001

In an abstract, Gary Larson kind of world, imagine if viruses got ill. How would the flu react to having IBD?


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## shaunbern2001

I had a moment during a day recently when I suddenly thought 'I feel ok, normal, how I used to feel'. At first it made me a little sad, thinking how I'd missed just being 'normal', then I decided to try and store that feeling for the times when things get a bit rough. So, after spending a few minutes thinking back on some good times I had & some of the things I was able to do, I saved it in a mental filing cabinet (a bit rusty, with a squeaky middle draw). 

Now I know I can return to that feeling and enjoy it, savour it when I need to. It'll give me comfort and a reason for a small smile when I don't feel so good.


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## shaunbern2001

I think I have a strange relationship with Crohn's. I hate it because of what it's done to me; stomach, diet, fatigue, joints, meds, 'oscopys, blood tests. It's all pretty shit.  

For the last few months I've been walking round like an eighty year old because my knees are a mess. Yet if I sit for too long, they seize up. I can't win. All of my other major joint groups (makes a change from food groups, I suppose) are harmonising with my knees. I just don't like the song they sing. 

I spend most of my waking hours feeling knackered, like a battered old tug boat pulling a liner into port only to find there's nothing on the other end of the rope when I get there. 

And yet, this stupid disease is a part of me now and in having it I've joined a group of people who are brave and thoughtful, clever and witty. I'm in awe of what some of you have been through and am strangely proud to be a part of this 'select' few. I'm ashamed of myself for being so feeble. I'm tired and have sore bones. Big deal. Some of you have enough to do to get out of bed in the morning and face the day. Get on with it, man, and stop moaning.


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## shaunbern2001

Just getting to the end of a flare so am on 9mg Budesondie and 150mg Azathioprine. IBD nurse & I have decided Humira or  Imfliximab are soon to begin. 
Am also about 4kg lighter after 10 days. Back to the flapjack....


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## DanaBanana

Oy! Can I ever relate. This thread made me smile! So much truth. Love it. 

Don't love crohns...or RA....or the ripple effect of additional issues that come along with "treatments". My life is forever changed. 7months ago I was training for another marathon that I would have run yesterday, for my 40Th birthday. Instead, because my hips are the newest of severe issues, I can barely walk so stayed curled up in my recliner and watched my Seattle Seahawks win. Sure it's sad...40 and feeling 80 sucks. But there's always a silver lining...at least I only look 29! Bwhahahha 
Anyhow.....onward to different drugs, more tests, poking and prodding; a walking (okay, more like hobbling) and talking (longwinded, at that) friggen experiment. But, it could always be worse so I remain grateful for the small stuff that I now find feels big. I'm not distracted with the usual life stuff that used to fill my, what felt at the time, generic life. Still wish I could have run that marathon though...oh well, I'm pretty good at running to the bathroom so that's a win! Lmao 
Cheers!


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## HorseAngel

I feel your pain. Finished a nightmare flare 13 days ago and now I'm back to flaring. Headed to the hospital tomorrow because I have no child care tonight. I'm tired of this never ending cycle of sickness! My husband always jokes that it comes with perks like being on a first name basis with the entire hospital staff or great handicap parking whenever we go out or his favorite, that I'm a cheap date because I can't eat when we go to the movies or dinner. Sending kind thoughts and prayers your way


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## shaunbern2001

Morning All,

Thanks for the messages. 

It's not just useful being reminded that there are people out there who are in the same boat but also that there are people out there who 'get it': I've been off work for 2 weeks now and I know when I go back there will be some colleagues who look at me and think 'Well he looks OK' and they'll make a small comment to someone else about the time I've had off... again. It's not that big a deal - the people with whom I work closely understand, as does my Deputy who's in charge of attendance. She's pretty cool about it. 

I think what I'm driving at is that with Crohn's you can look normal, without necessarily having any outward manifestations of illness. It's not like the measles or chicken pox ('Oh you poor thing - that must itch like mad'), a broken leg or some stitches ('Oh I bet that hurt - you're so brave'), or even a cold or the flu ('Oh, you look after yourself - lots of fluids, now'). I still just look like me, although I'm a little gaunt at the moment, and it can be hard to get across to people exactly what's going on (to quote Marvin). 

So it's nice knowing I can say 'This has happened' and there are you guys out there to go 'Yeah, got it'. 

Then again, everyone's so busy they have all their own things to worrying about. I can raise a smile thinking that some of my colleagues won't even realise I've not been there! And I'm sure I won't tell them either....


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## DanaBanana

Word! So true...other than looking thin and occasionally dark bags under my eyes, I look fine. People say all the time "you look good"...and you can see them looking like the are trying to see if you're sick. It's the curse of invisible illness. And God forbid I post any smilie pictures of myself on Facebook! I guess sick people aren't allowed to smile. Whatever!


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## shaunbern2001

Egg & banana flour-free pancakes

1ripe banana
2eggs
Coconut oil (or butter,etc)

Heat a non-stick pan with a little coconut oil. 
Mash up a v ripe banana. No lumps!
Mix 2 eggs into the banana (mix 'til it's blended really well). 
Drop into the pan to make small pancakes. 
Cook for +/- 1 minute on each side. 
Eat with choice of spread. 

Saw this on the net & thought it seemed really easy, even if you're feeling below par (or a bit sorry for yourself).


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## fuzzy butterfly

:hug:I find myself sick n tired of saying that " I'm not just tired I'm dead on my feet I can barely lift my eyelids, so no I'm not up for going out". When we say we are tired we mean that kind of tired that has you feeling like a wet dish rag. Not a normal type of tired.  oh they just don't get it at all!!


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## DanaBanana

Thanks for the recipe, Shaun. I've seen it before but haven't tried because I always forget lol. Food isn't easy for me these days...but those could work for me! 

Wet dish rag over here...my brain is always humming but my body is more like, "Nice try Brain, but I'm just gonna laugh at your efforts from this very horizontal position".


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## fuzzy butterfly

Oh yeah I relate to that hun.


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## DanaBanana

I just stripped my bed for washing...felt like trying to arm wrestle an elephant.


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## fuzzy butterfly

Haha ye thats the right description .it really is like that .im bloody knackered when iv done the bed. Dont know how i work all day. Must go to auto pilot or something.


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## ronroush7

Crohn's is the worst thing to happen to me.


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## Lizzie

I tried the banana pancake recipe and it might just be my cooking but it tasted disgusting, like an omelette with banana in.  Didn't cheer me up at all.


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## DanaBanana

Lizzie said:


> I tried the banana pancake recipe and it might just be my cooking but it tasted disgusting, like an omelette with banana in.  Didn't cheer me up at all.


See, that's what I've been thinking they'd taste like. Banana favoured eggs. Im fussy with my Bananas..I eat 2 a day in my protein shakes, but they have to still be slightly green. Ripe bananas make me gag.


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## DanaBanana

ronroush7 said:


> Crohn's is the worst thing to happen to me.


Yah, it's pretty devastating :-(


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## shaunbern2001

Lizzie said:


> I tried the banana pancake recipe and it might just be my cooking but it tasted disgusting, like an omelette with banana in.  Didn't cheer me up at all.


And I was going to try it for my lunch today! Maybe I'll stick with scrambled eggs or a cheese sandwich (as usual).


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## shaunbern2001

mandyk said:


> :hug:I find myself sick n tired of saying that " I'm not just tired I'm dead on my feet I can barely lift my eyelids, so no I'm not up for going out". When we say we are tired we mean that kind of tired that has you feeling like a wet dish rag. Not a normal type of tired.  oh they just don't get it at all!!


I stopped telling people that I feel tired. As you say, they just don't get it. Now I either tell them I'm fatigued, which is a stronger sounding word or I'll explain it thus: 
'You know how you feel when you go to bed? You know how you're tired to the bone and really looking forward to a good sleep? Well that's how I feel when I wake upon the morning. And that's as good as it will get all day'.
It can sound a bit harsh/blunt but it puts things in a way that people can actually relate to.


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## fuzzy butterfly

Ah good tactic. I had tried similar,falls on deaf ears mostly.


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## shaunbern2001

Started Humira today. The loading dose requires 4 injections so all those blood tests ('Just a small sting') have been worth it after all.

I came across this poem by Bukowski back in the summer and it really struck a chord with me. I've looked at some of his other material and it doesn't do a lot for me - apologies to any fans out there but that's just me. Some of his poems deal with the mundane and with everyday life and don't grab me. This one did. It's called The Laughing Heart. Punctuation and grammar are Bukowski's. 

your life is your life
don't let it be clubbed into dank submission.
be on the watch.
there are ways out.
there is a light somewhere.
it may not be much light but
it beats the darkness.
be on the watch.
the gods will offer you chances.
know them.
take them.
you can't beat death but
you can beat death in life, sometimes.
and the more often you learn to do it,
the more light there will be.
your life is your life.
know it while you have it.
you are marvelous
the gods wait to delight
in you.


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## DanaBanana

I feel people are tired of hearing I'm tired lol 
I usually say fatigued or exhausted now. Haha

I start Humira today. How are you feeling Shaun?


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## JaimeM

I guess I've always had a pretty positive attitude about having Crohns. It stinks for sure, and it's made me miss out on a lot, but it's made me gain a great perspective on how important it is to enjoy the good time I have with friends and family. I'm a very busy person and it seems I tend to ignore people around me sometimes. So when I'm flared, its a good time to rest and take the time to talk on the phone with the people I may have not given the proper attention to. Or spend more time reading and etc. So yes, Crohns sucks. But my life doesn't suck. I appreciate the things that I have more because of being sick. So I am kind of thankful for that. A lot of people go through life without ever really thinking about that. Some just are on to the next thing, bigger and better. So it's my blessing and my curse.


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## ronroush7

That is a good attitude.


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## shaunbern2001

DanaBanana said:


> I feel people are tired of hearing I'm tired lol
> I usually say fatigued or exhausted now. Haha
> 
> I start Humira today. How are you feeling Shaun?


Hey. 

Humira started on Thursday. I just had to laugh over the loading dose - four separate injections? C'mon, is there ever going to be a break with this?!

All the literature says side effects are fewer with Humira. Hmmm. Unfortunately, on Friday I felt like I'd been hit by a truck. I was like a party balloon after the event - deflated and somewhat pathetic. Here we are on Sunday and I still am exhausted. No, wrong word. Just knackered, bereft of energy, with nothing in me. As the song says, my get up and go got up and went. I'm hoping it'll improve this week. 

I always try to avoid saying I'm tired because the world and his brother all use it. You're right - fatigued or exhausted are generally much better.

Here's hoping we all have a better week.


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## shaunbern2001

DanaBanana said:


> I feel people are tired of hearing I'm tired lol
> I usually say fatigued or exhausted now. Haha
> 
> I start Humira today. How are you feeling Shaun?


Good luck with the Humira. Hope the jabs go ok & you're lucky with the side effects. Keep us posted.


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## ronroush7

Best of luck with the Humira.


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## DanaBanana

shaunbern2001 said:


> Hey.
> 
> Humira started on Thursday. I just had to laugh over the loading dose - four separate injections? C'mon, is there ever going to be a break with this?!
> 
> All the literature says side effects are fewer with Humira. Hmmm. Unfortunately, on Friday I felt like I'd been hit by a truck. I was like a party balloon after the event - deflated and somewhat pathetic. Here we are on Sunday and I still am exhausted. No, wrong word. Just knackered, bereft of energy, with nothing in me. As the song says, my get up and go got up and went. I'm hoping it'll improve this week.
> 
> I always try to avoid saying I'm tired because the world and his brother all use it. You're right - fatigued or exhausted are generally much better.
> 
> Here's hoping we all have a better week.


I relate to everything you described. Had my loading dose Thursday as well. 1 injection in each thigh followed by 1 in each side of my abdomen. Then later that evening my weekly Mtx. I felt drowsy as hell within 25Mins of the Humira. Then nauseated. My daughter dropped me off at home and I went to sleep for an hour. Been EXHAUSTED ever since. And Nauseated off and on. Last night I got itchy and my usual fever hasn't let up. Basically, I'm miserable. I'm soooooo hoping for some improvement tomorrow, cuz this sucks!!!


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## shaunbern2001

I think my training is almost done and I'm ready to issue a challenge to all-comers in a slow race. Pick a distance, any distance. I'll still get there after you. If I go any slower I'll start going backwards.


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## shaunbern2001

DanaBanana said:


> I relate to everything you described. Had my loading dose Thursday as well. 1 injection in each thigh followed by 1 in each side of my abdomen. Then later that evening my weekly Mtx. I felt drowsy as hell within 25Mins of the Humira. Then nauseated. My daughter dropped me off at home and I went to sleep for an hour. Been EXHAUSTED ever since. And Nauseated off and on. Last night I got itchy and my usual fever hasn't let up. Basically, I'm miserable. I'm soooooo hoping for some improvement tomorrow, cuz this sucks!!!


What made me laugh when the nurse was telling me what to do was when she said 'Grab hold of the fatty part of your thigh.'  The fatty part? Are you kidding? I can muster up a handful of flesh with a little muscle underneath....


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## fuzzy butterfly

shaunbern2001 said:


> I think my training is almost done and I'm ready to issue a challenge to all-comers in a slow race. Pick a distance, any distance. I'll still get there after you. If I go any slower I'll start going backwards.


Iv been going backwards for years lol.


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## fuzzy butterfly

Love n hugs to you all.


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## DanaBanana

shaunbern2001 said:


> What made me laugh when the nurse was telling me what to do was when she said 'Grab hold of the fatty part of your thigh.'  The fatty part? Are you kidding? I can muster up a handful of flesh with a little muscle underneath....


 Right!? Hahaha and find FOUR!!!! My nurse actually said "hmmm...." with raised eyebrows while I pathetically tried to pinch up some fat.


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## fuzzy butterfly

Oh tell me about that .. the only spare fat i have is what i pour out of bottle to fry an egg lol


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## DanaBanana

Hahaha I have a little bit to pinch on the outsides of my upper thighs....it's not much, but enough to jab. That's where I inject the mtx. But the Humira nurse was insistent on tops of thighs and abdomen. At least the next round in only 2 spots for that stuff. I'll use my abdomen...had a marginally better go of it there. I honestly didn't like the tops of thighs...felt like I was stabbing myself!


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## fuzzy butterfly

Its hard work trying to find a spot for them needles .. 
When i had to inject myself with an anticoagulant that i cant remember the name of, it was painfull coz id no spare fat/flesh to on my tummy to get a grip of ..ended up bruised with it all. Nightmare!! Bet you are glad there is only 2next time. Hugs


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## Gerbskis

Hey man! I feel that sometimes it is best to vent and just say what is on your mind out-loud. I have many days where I feel this feeling! Just so EFFING over it!!! Some days I find myself punching my mattress or screaming into my pillow in an attempt to let out all the bad feelings inside me. But, one thing that I have learned to do is when I am feeling a bit better and more like myself, I reflect on the bad days that I have had and try to appreciate all the good moments that still show themselves. Staying positive is one of the hardest things to do when suffering from a disease like this, but it is the most important thing in my life and I truly believe it helps the body. Hang tough! You are not alone!!!


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## DanaBanana

Gerbski, that's what I do too...I have such a deeper appreciation for those good moments, hours, a day. Been awhile since I had a good day but I have had many moments. 

Thanks for the reminder. ;-)


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## Lizzie

Some mornings I wake up and the realisation that I have Crohns hits me anew and I groan out loud at the top of my voice.  Luckily I live in a bungalow and no one can hear me!  But then I do struggle hard to be positive and at night I follow some advice I read about remembering three good things that have happened during the day, however minor.  This does help a bit to put life into perspective and find a reason to go on.  For example, today's would be that I actually managed to have a civilised discussion with my GI (unlike the last time), I bought a new TV with a bigger screen as I spend more time at home these days and I went to the cinema with my friend.  Sometimes it can be really hard thinking of three things but I think it is helpful and over time can improve one's mood a little.  Otherwise it's so easy to drown in negativity with this horrible disease.


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## DanaBanana

I do that too...3 things...through lately I haven't. There's always at least 3 things, no matter how tragic I feel.  I'm stubborn...I fight through everything. Always have. I rarely allow myself to feel depressed...I shove it away. Sometimes it's because I'm scared to let it out for awhile, as though it won't go away if I let it out. But mostly it's because o don't want my loved ones to see the truth of how I am feeling. I don't want pity, or sympathy...and I especially don't want them to worry more about me than they already do. But dammit, right now I'm quite honestly struggling. I'm making progress though...last week I was angry everyday about all this. This week I feel a deep sadness. I suppose this means I'm closer to acceptance?  Well, that's how I'm choosing to look at it for now. 
I appreciate your reminder of 3 things. I appreciate everyone's sharing..it truly helps me not feel so alone.


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## shaunbern2001

Crohn's must be similar to any chronic illness in that it provokes the full spectrum of emotions in us. I would guess that we all have gone through anger, misery, confusion. Our outlook on joy and happiness is probably different from many people; we might be aware of finding pleasure in small things that would otherwise go unnoticed. And I'm pretty sure we're all finely tuned to the machinations of our bodies. 

There's also the balance between sharing with family and friends so they have an understanding of what's happening and keeping shtum on certain things. I don't want anybody looking at me with pity, making that gesture where the corner of their mouth pulls sideways, their head tilts, and they squeeze me on the upper arm (drama school 101 'concerned look'). No thanks.

While I've been on this flare, an expression which sounds like I should be cool dude surfing a Hawaiian beach ('You should have seen that flare I was on, man. It was radical'), I've journeyed from despair to acceptance with everything in between and in no particular order. Pleasure has come from walking out to get a newspaper and taking in the fresh air and the world around me. Not much in the grand scheme of things but good enough for me. For now.

Yesterday I watched a sparrow struggling to fly against the wind and, at first, I thought 'Why are you bothering? Let the wind take you then lie-up in a bush or a tree until it passes then get going again'. But I realised the little bird had somewhere it needed to be, there was a task to be done, a family to feed, or even a warm nest to sleep in. And no matter how much of a struggle it can be, sometimes you just have to keep going. 
Who knew? Lessons from sparrows.


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## DanaBanana

Good words, Shaun. 

Funny you mentioned the concerned gesture...just had that happen, complete with the mouth corner turned up, head tilt, and the hand on my upper arm squeeze. What was funny is the question asked, "Dana, how are you doing with your condition?" 
A well-meaning question I know, but gosh...I'm left rolling my eyes and wishing I was that sparrow!


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## fuzzy butterfly

Maybe we should reply with .. im having a ball,doing the tango with the toilet,the vienenese waltz with the doctors, the cha cha with the sick bowl,the fan dango with food and the hippy hippy shake with my joints..


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## DanaBanana

mandyk said:


> Maybe we should reply with .. im having a ball,doing the tango with the toilet,the vienenese waltz with the doctors, the cha cha with the sick bowl,the fan dango with food and the hippy hippy shake with my joints..


Bwahahhahahaha oh Mandy, I literally just laughed out loud!!!!


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## fuzzy butterfly

glad to be of service Dana  haha.


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## shaunbern2001

I had my second Humira jabs yesterday and it struck me as funny that there are some things we do with our medicos around that we wouldn't dream of doing in different circumstances. 

My nurse turned up with her manager yesterday and was very thorough in going through every step of the process again; we all get appraised so I played along, being the good patient, even though I was quite impatient to get it done. It was when I just lifted up my shirt in front of these two strange women that the surreal side of it all struck me. 

Here I am showing off my skinny ribs and my surprisingly flat stomach while I stick a needle in my, ahem, 'fatty tissue'. I've met one of these women once for about 40 minutes. The other one has pitched up on my doorstep for the first (and probably last) time. Just imagine if I decided to stand in the middle of the shopping mall and lift my shirt over my head: 'Security on Avenue 3...'. 

Likewise, we're chatting about how my flare seems to have almost completely subsided (fingers crossed) and how my bowel movements have normalised. Imagine I'm at the mall having a coffee when I lean over to the two strangers at the next table and enquire about their BM: 'Security code red at Costa Coffee...'.

Everything is context. It's a funny old world.


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## ronroush7

mandyk said:


> :hug:I find myself sick n tired of saying that " I'm not just tired I'm dead on my feet I can barely lift my eyelids, so no I'm not up for going out". When we say we are tired we mean that kind of tired that has you feeling like a wet dish rag. Not a normal type of tired.  oh they just don't get it at all!!


Amem


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## DanaBanana

For me, I'm amazed at the irony. I am a pretty liberal person but when it comes to things like bowel movements and gas, I've always been very conservative. I'm a lady in that way....very private...never one to pass gas or burp around another human being, let alone talk about it in great detail. Lol ugh it was mortifying to me.


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## ronroush7

You  too


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## ronroush7

Yoiu too.


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## shaunbern2001

DanaBanana said:


> I feel people are tired of hearing I'm tired lol
> I usually say fatigued or exhausted now. Haha
> 
> I start Humira today. How are you feeling Shaun?


Reckon you must have had your second dose by now. How goes it?


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## DanaBanana

I did....last Thursday. So was two injections. I chose left and right side of my abdomen. Despite letting it come to room temperature, it's still stung like crazy and my abdomen hurt for the rest of the afternoon and evening. Icepack helped. No nausea this time, just the extreme fatigue still. 
No changes so far. Gi specialist says by my third dose I should feel a some improvement. We shall see....he said that about everything before this. 
Thanks for asking.


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## fuzzy butterfly

Hi Dana glad it wasnt as bad this time hun. Fingers crossed he is right this time n you feel better very soon. 
Love n hugs Mandy


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## DanaBanana

Thanks Mandy. I'm annoyed that I picked up the Humira from the pharmacy for this week's upcoming injection and when I got home realized it was auto injector pens. I hate them. Ugh. Oh well...not worth the hassle to get it switched. 
Feeling wretched yesterday and today. Sat was an okay day however, so I'm grateful for that. Haven't had an okay day in ages!!! 
How's you???


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## fuzzy butterfly

Aw no hun,hope you only having to use them for round of injections. So sorry youve been having a rough time. Hope things improve very soon for you. 
Im ok at the mo,thanks..joints are being a pain lol. 
Iv just had 9days of work and back in tomorrow. So im off to bed soon.
Sending get well hugs, take care hun


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## shaunbern2001

Last Thursday morning I had my first 'normal' dose of Humira - one 40mg shot - and it completely wiped me out in the evening; it seemed to take a few hours to work it's way through my system and I had that kind of fatigue where it's really irritating and you're sort of restless but listless at the same time. It worked its way right into my bones.

I was a bit worried on Friday morning and definitely didn't want to get out of my bed! However, I was more or less alright, so much so that I was able to do half a day at work (although that absolutely was enough).

I feel as though I've been gradually sinking this week, slowly getting more tired, which is a shame as I was quite positive over the weekend and felt that I was on an upward trend. Maybe I'm trying too hard and expecting too much. I still have it in my head that a week is a long time to be unwell and (miraculously) I should be better. Maybe this points towards a good work ethic or maybe I'm just delusional, especially as my flare began on December 31st.

I feel as if the Humira is working and I really want it to work. I just wish I wasn't so tired.  Here's hoping.


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## fuzzy butterfly

Hi sorry you are feeling so ropey just now.. bear with it im sure it will get better. These meds can take a while to get going properly. 
Best wishes Mandy


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## ronroush7

shaunbern2001 said:


> Last Thursday morning I had my first 'normal' dose of Humira - one 40mg shot - and it completely wiped me out in the evening; it seemed to take a few hours to work it's way through my system and I had that kind of fatigue where it's really irritating and you're sort of restless but listless at the same time. It worked its way right into my bones.
> 
> I was a bit worried on Friday morning and definitely didn't want to get out of my bed! However, I was more or less alright, so much so that I was able to do half a day at work (although that absolutely was enough).
> 
> I feel as though I've been gradually sinking this week, slowly getting more tired, which is a shame as I was quite positive over the weekend and felt that I was on an upward trend. Maybe I'm trying too hard and expecting too much. I still have it in my head that a week is a long time to be unwell and (miraculously) I should be better. Maybe this points towards a good work ethic or maybe I'm just delusional, especially as my flare began on December 31st.
> 
> I feel as if the Humira is working and I really want it to work. I just wish I wasn't so tired.  Here's hoping.


Have you had blood work recently?  Hope you feel better soon..


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## shaunbern2001

So about ten days ago my knee started playing up - sore, aching, stiffening up. It got worse & for about a week I've been lurching round like a sailor on a square-rigger in a force 10 gale (with language to match; didn't know I knew some of those words).

Dr, bless her, has given me a tube of Ibuprofen gel. Sigh. I'll use it but in the knowledge it'll start to mess with Mr Crohn's soon enough. She meant well & if it gives me a few days relief from my knee pain it'll be a blessing.

This morning, in all innocence, a colleague said to me 'Are you limping? Is something wrong with your leg?'. Sometimes you just got to smile....


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## Scipio

If the ibuprofen gel is topical rather than oral it theoretically should not mess with your Crohn's since it does not come in contact with the gut.  Less ibuprofen gets into the blood with topical gels, since that route is less efficient, but irritation to the gut should be prevented.

Let us know whether it does in fact fire up your Crohn's.


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## fuzzy butterfly

Hi i use the gel for my joint pain. Iv been in remission for just over two years and its not caused me any trouble over the last year or so iv used it.
Hope it doesnt cause you any either, it shouldnt as it is as scipio said. Best wishes


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## shaunbern2001

School term finished just over a week ago, which was a massive relief as I'd become so fatigued I was becoming delirious. I was becoming manic just to try and prove (to myself) that I could keep going and keep up. Ever decreasing circles. But then, if I sat down for too long everything started to ache from within. I could have wept.
It's still there but has eased back to 'normal' levels. I'm sure you all know about 'normal' levels.

On a happier note, my knees are also back to their old selves; generally aching and sore but nowhere near how they were in May and June. The Ibuprofen gel seemed to help but I didn't use it for very long - about a week, morning and night. I read up on all the gen about it being topical and, therefore, less of a threat but I was still a bit paranoid about it. I also tried something called Flexiseq, which may or may not have had an effect.  All in the mind, you know....


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## shaunbern2001

I've had a cold for the last week, which is unusual - it's the first one I've had since being diagnosed. My microscopic little friend, Mr C, has ensured that the passage of this cold has been entertaining. It all started with a really dry sore throat that started, it seemed, with the flick of a switch; one minute I was fine, rehearsing with the band, the next I was impersonating Lee Marvin. Initially I just put it down to the rehearsal and being tired. Next day my throat was still as dry as a three day old French stick and I was feverishly hot. Over the weekend and into Tuesday I went through a dripping-tap nose to a blocked nose to a delightful, phlegmy nose and throat. All accompanied by much sneezing. I went into work yesterday and lasted about an hour before being told to go home and rest (in no uncertain terms - tough love, indeed). Within the space of twelve hours I'd developed three cold sores. 

Along with the constantly aching joints I can't think of another symptom of the common cold. So I say 'thank you' to Mr C for reminding me of all the little things he can do, away from the big stuff. 

And now back to 'Wandering Star'....


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## ronroush7

shaunbern2001 said:


> I've had a cold for the last week, which is unusual - it's the first one I've had since being diagnosed. My microscopic little friend, Mr C, has ensured that the passage of this cold has been entertaining. It all started with a really dry sore throat that started, it seemed, with the flick of a switch; one minute I was fine, rehearsing with the band, the next I was impersonating Lee Marvin. Initially I just put it down to the rehearsal and being tired. Next day my throat was still as dry as a three day old French stick and I was feverishly hot. Over the weekend and into Tuesday I went through a dripping-tap nose to a blocked nose to a delightful, phlegmy nose and throat. All accompanied by much sneezing. I went into work yesterday and lasted about an hour before being told to go home and rest (in no uncertain terms - tough love, indeed). Within the space of twelve hours I'd developed three cold sores.
> 
> Along with the constantly aching joints I can't think of another symptom of the common cold. So I say 'thank you' to Mr C for reminding me of all the little things he can do, away from the big stuff.
> 
> And now back to 'Wandering Star'....


Hope you are better soon.


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## shaunbern2001

And here we are in March with another run through of every symptom of the common cold. This time it started about 3 weeks ago with the sniffles. Now it's morphed the other way round & my throat's both sore and phlegmy. Lovely.

I've also got trouble with my eyes, which I'm hoping (!) is only conjunctivitis & not anything worse.  

On the bright side there are a couple of threads on this site that are laugh-out-loud funny:  'Officially official funny pictures' and 'You know you've got Crohn's when...'. Nice to have a bit of light relief.


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## DanaBanana

shaunbern2001 said:


> And here we are in March with another run through of every symptom of the common cold. This time it started about 3 weeks ago with the sniffles. Now it's morphed the other way round & my throat's both sore and phlegmy. Lovely.
> 
> I've also got trouble with my eyes, which I'm hoping (!) is only conjunctivitis & not anything worse.
> 
> On the bright side there are a couple of threads on this site that are laugh-out-loud funny:  'Officially official funny pictures' and 'You know you've got Crohn's when...'. Nice to have a bit of light relief.


Thankful for comic relief!!! I washed my car yesterday as it was warm and sunny. Today it snowed. *grumble *

Just getting over a cold that kicked my ass and pushed me into a flare. Not impressed. Anyhow, I feel ya. 
Hugs


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## shaunbern2001

And the joy never stops.... I reckon it was about two weeks ago that I finally felt as if I was over the cold that started in February. Great. Now to knuckle down and get some weeks racked up at work; nothing to put me back on the attendance monitoring radar. Social life back in the swing. Hurrah.

Hmmm. What's that old saw about making plans?

On Monday this week my lips started swelling. Not great but I thought maybe a cold sore or two - I've just got over one that caused no problems. I also noticed a few red spots here & there. Again, not a problem as I'd done some gardening on Saturday and had been bitten a couple of times. However, on Tuesday, I was looking a bit too much like Mick Jagger for comfort and the few red spots had multiplied. When the nurse at my local GP looked at me (cautiously and from a distance) she very quickly concluded I had chickenpox. Joy. There goes my good attendance for the next year. And here comes an unspecified amount of misery. 

I would probably be coping better if my mouth wasn't so bad. It's the 'aphthous ulceration' that gets you every time. Oh well. Back to counting spots. One hundred and seventy four, one hundred and seventy five....


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## ronroush7

shaunbern2001 said:


> And the joy never stops.... I reckon it was about two weeks ago that I finally felt as if I was over the cold that started in February. Great. Now to knuckle down and get some weeks racked up at work; nothing to put me back on the attendance monitoring radar. Social life back in the swing. Hurrah.
> 
> Hmmm. What's that old saw about making plans?
> 
> On Monday this week my lips started swelling. Not great but I thought maybe a cold sore or two - I've just got over one that caused no problems. I also noticed a few red spots here & there. Again, not a problem as I'd done some gardening on Saturday and had been bitten a couple of times. However, on Tuesday, I was looking a bit too much like Mick Jagger for comfort and the few red spots had multiplied. When the nurse at my local GP looked at me (cautiously and from a distance) she very quickly concluded I had chickenpox. Joy. There goes my good attendance for the next year. And here comes an unspecified amount of misery.
> 
> I would probably be coping better if my mouth wasn't so bad. It's the 'aphthous ulceration' that gets you every time. Oh well. Back to counting spots. One hundred and seventy four, one hundred and seventy five....


Hope you  feel better soon.


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## shaunbern2001

Just a quick one. In the end last year I had chicken pox four times. I know that sounds bizarre but believe me it's true. Suddenly, everyone's an expert on chickenpox:
 'It's impossible to catch it 4 times' and 'If you had it as a child, you can't get it again!' and 'Are you sure it isn't shingles?' You've gotta laugh. 

Surprisingly, it did wonders for my attendance at work & I spent the best part of six months with a final attendance warning hanging over my head like a type-written paper sword of Damocles. Anyhoo, I'm back on track now having learnt how to struggle through some tricky situations. Amazing how the genuine threat of redundancy can motivate a person to go beyond what seems humaly possible. 
For revenge, I steal and hoard the toilet paper from the bathroom used by management....


Just kidding!


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## luca2019

Same here so fed up...keep having loads test and still no diagnosed with Crohns, my IBD doctor thinks it is Crohns, been going on 5 years now coming a beyond a joke, non stop flare up in and out of hospitals  always tired stomach is killing


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