Normal pain, nobody knows!

[Pawleyj]

I was out with my boyfriend at my mates house the other night and I don't know about anyone else but my pain is worse in the evenings, I was sat there chilling holding my stomach trying not to wince in pain. Obvs not hiding it well as my mate said are you alright, and did the usual it's normal speech, and my boyfriend turnt around and said are you in pain (he was sat next to me). I said yea I'm always in pain at this time of night (looking at him as if to say are you taking the mick!!!).

He was generally surprised and didn't know that I get pain all day everyday but worse in the evenings. In his favour that is the first time I have been out after 8pm ( since this all started) as it was her birthday, usually I'm in my jammys in bed curled up. But seriously we live together!!!!

Just need to rant!!!

 

[afidz]

I was the same way when I was flaring. I would try to hide it, but some times my face gave it away. And then I would say I was fine just cramping, and it was like there whole world had to stop until I was ok again. It got annoying. I got batter at hiding it
I wonder why you feel worse at night. Do you think its your diet?

 

[Cross-stitch gal]

Yeah, I too can cover pretty well. The only ones who can usually tell if I'm in pain are those who know me well. I work in a store so, covering is a must around customers...

Hope you feel better soon. :hug:

 

[Pawleyj]

Yea probably is my diet I have been told not to cut anything out as yet, but I have stopped eating certain things. I'm still learning so am not really sure what I can and can't eat. I think it's low fibre, low sugar, low meat. But I don't really know, my mum is gonna set up an appointment with a diatrician for me.

 

[natbtc]

I was just thinking the exact same thing last night - I've been with my noyfriend for 4 years and am in pain every day (I don't complain about it but don't hide it either) and he seemed surprised to learn that I'm in pain!

My pain gets worse at night, especially when I'm lying on my side. It's horrible trying to hide it when you're in a public place and you don't want to have to explain to people why you're in pain!

 

[Pawleyj]

Mine is worse when I lie on my left side as apposed to my right, he thinks I just say that to get cuddles lol but it's actually true.

My mates were all drinking and were asking me if I wanted water & paracetamol I was like thanks but if paracetamol stopped the pain then Crohns wouldn't exist! They were only trying to help but kept asking if I was ok?? Is it just me or does that question start to grate on you after a while.

 

[natbtc]

I know it sounds strange but my stomach pain seems to go away more quickly if my boyfriend presses his hand into the area where it hurts (he has really hot hands) and it seems to alleviate some of the pain!

I got asked last night if I wanted paracetamol as well, I was like I really don't think that's gunna help otherwise we would have sorted this out years ago! It is hard when people try to help but I hate that if I am in pain all the attention focuses on me and I find a lot of the time my family seems to become experts on the matter and gives me all this irrelevant advice that isn't really helping when I'm in pain!

I suppose it's something you have to get used to though and I just try and hide the smaller pains so as not to attract attention to it.

 

[Pawleyj]

I can't have his hand or any weight what so ever on my belly, hurts to much from the pressure. He either has his thumb in my waist band to hold off the pressure from my jammys or cuddles me around my shoulders

I know what you mean, it's like ok I'm different enough do you have to point it out! My mum sits there talking to my aunties about it as if I'm not there. Talking about my toilet runs (pardon the pun) I'm like mum lets talk about your poop over a coffee shall we!! Seriously! Lol

 

[natbtc]

Haha I know it's so inappropriate!

At least he's able to help you with some relief. I compain about him a lot but he stopped with me when I first got Crohn's (a very smelly time! lol) and only left me to go to work so maybe he's just used to me being in pain and that's why he doesn't notice it so much anymore! It's just hard when everyone else seems to go on as normal and doesn't seem to get that it's a full time thing and not just when it 'flares up'.

 

[Pawleyj]

Yea I'm the same, I can be quite selfish with it I guess but I forget it must be hard for him. He gets the backlash of my moods from the prednisone, and he dosent argue or shout back at me, he just takes it then come gives me a cuddle when I've calmed down.

I can't drive atm either and we live in the middle of nowhere so he goes to work and still comes home and does everything for me as I've been signed off work since October. Despite everything he's more annoyed that he's put on weight as he eats his food and then whatever I don't eat (which is a lot lol) bless him!!!

 

[natbtc]

I'm exactly the same, I was in quite a lot of pain the other day and he wasn;t feeling very well either and I was annoyed that he was ill and he wasn't being the strong one like he usually is! I feel incredibly selfish sometimes! It sounds like we've both got pretty good, understanding boyfriends though who know how to put up with moody women!

Do you manage to get to the doctors ok? I have a one year old as well so sometimes I don't have time to worry about the pain so it does sometimes help because it takes the focus off it. I've always got this worry in the back of my mind that he's going to develop it though, even though I'm the only one in my family who has it and it seems like it's only the pill that's originally caused it.

I'm worried that I'm at the start of another flare up though and he doesn't seem to grasp why I'm so worried about it and worried about maybe having an operation, I think he just thinks it's there and causes a little bit of pain but not much else is actually happening inside me.

 

[StaceyQ]

u are so lucky to have understanding bo0yfriends x

 

[Pawleyj]

Lol completely agree, very understanding boyfriends.

Well we had to move back to my mums house in November as I was signed off (still am) and couldn't afford rent as we were private. So between my mum, step dad & Joe (bf) they have done all my appointments. My mum got made redundant last week anyway and is gonna wait to go back to work until I'm out of this flare. I've been very lucky with all the friends and family support really, shouldn't complain, but I do!

I had symtoms for the last 4 years then in April 2011 I had an eptopic pregnancy (didn't know I was pregnant until I miscarried, was about 6-8 weeks) and everything escalated from there. I thought I was the only one in my family and there's a lot of us, but I was talking to my mum & nan last week and turns out my nans mum could of had crohns.

My nan was saying what symtoms she used to have and I was like that's what I get, and my mum was saying she would get blood in stools, stomach pains, various other symtoms and she used to eat "weird food", but if she did have it she never got diagnosed so I don't know.

Congrats on the little one, it must be a worry, I'm sure I'd be the same when I have my own. Did you flare after little on was born? Aparantly that's quite common?

Jess x
22years old

 

[Ya noy]

Could the reason you experience most pain at night be because that's when the food you ate during the day is making it's way though your intestinal system?

 

[Pawleyj]

I think it contributes the pain is quite bad for the first 3-4 hours in the morning aswel!

 

[Beach bum]

Maybe try smaller meals more frequently ?
Do you eat a larger meal in the evening?

 

[Pawleyj]

Not really, I always have dinner at6pm and the pain gets really bad about 8pm and last all night!

 

[Beach bum]

I believe it takes at least 2 hours for food to pass through the stomach into the small intestines - if you have inflammation in your small bowel that might be why you are suffering a couple of hours after a big meal as it begins to make its way through.

Could be worth playing around with food times/amounts just to see if anything changes ?

 

[Pawleyj]

I had my appointment with my gastro doc today and found out from my capsule camera that there is a 10-15cm area in my badly ulcerated in my small bowel near the illenium (I think that's what it's called!) and there's also more higher up, but they have started me on azathioprine before they consider operating. As my symtoms have got a lot better on the pred but still not well enough to work.

Thanks for your advice

 

[DougUte]

I am so sorry. The terminal ileum is the normal spot. But you have more inflammation higher up in the bowel. That is not a good thing.