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Crohn's Disease Forum » Your Story » On generally being fed up.


 
09-27-2014, 03:44 PM   #1
shaunbern2001
 
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On generally being fed up.

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

Last edited by shaunbern2001; 09-15-2015 at 06:38 AM. Reason: Adding notes
09-27-2014, 04:01 PM   #2
FrozenGirl
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Lol. I often wish I could bestow my UC on murderers.
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09-27-2014, 04:17 PM   #3
shaunbern2001
 
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Thanks FrozenGirl
The list starts here. 'I would pass my disease on to...' You don't even need a 'because'.
09-27-2014, 07:19 PM   #4
DJW
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I've never understood the line "wouldn't wish this on my worst enemy".
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09-28-2014, 03:46 AM   #5
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In an abstract, Gary Larson kind of world, imagine if viruses got ill. How would the flu react to having IBD?
03-03-2015, 05:03 AM   #6
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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.
04-04-2015, 10:22 AM   #7
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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.

Last edited by shaunbern2001; 05-17-2015 at 01:57 AM.
01-11-2016, 03:19 AM   #8
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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....
01-11-2016, 04:26 PM   #9
DanaBanana
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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!
01-11-2016, 05:11 PM   #10
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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 💓🙏🌹
01-14-2016, 05:38 AM   #11
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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....
01-16-2016, 01:52 PM   #12
DanaBanana
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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!
01-18-2016, 09:49 AM   #13
shaunbern2001
 
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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).
01-18-2016, 11:29 AM   #14
fuzzy butterfly
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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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01-18-2016, 11:38 AM   #15
DanaBanana
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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". 😴
01-18-2016, 12:13 PM   #16
fuzzy butterfly
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Oh yeah I relate to that hun. 😞
01-18-2016, 12:55 PM   #17
DanaBanana
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I just stripped my bed for washing...felt like trying to arm wrestle an elephant.
01-18-2016, 12:59 PM   #18
fuzzy butterfly
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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. 😕
01-18-2016, 01:50 PM   #19
ronroush7
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Crohn's is the worst thing to happen to me.
01-18-2016, 01:52 PM   #20
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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.
01-18-2016, 02:21 PM   #21
DanaBanana
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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.
01-18-2016, 02:22 PM   #22
DanaBanana
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Crohn's is the worst thing to happen to me.
Yah, it's pretty devastating :-(
01-19-2016, 04:28 AM   #23
shaunbern2001
 
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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).
01-19-2016, 04:41 AM   #24
shaunbern2001
 
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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.
01-19-2016, 09:31 AM   #25
fuzzy butterfly
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Ah good tactic. I had tried similar,falls on deaf ears mostly. 😃
01-28-2016, 08:09 AM   #26
shaunbern2001
 
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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.
01-28-2016, 11:32 AM   #27
DanaBanana
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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?
01-28-2016, 11:37 AM   #28
JaimeM
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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.
01-28-2016, 11:40 AM   #29
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That is a good attitude.

01-31-2016, 11:15 AM   #30
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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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