Argh

argh

have had enough!!
my boyfriend doesnt understand at all.

ive only been diagnosed with crohn's a few weeks and since then av been so down. ive had constant tummy aches and been tired. sometimes its like he takes no notice at all.

av bin feeling down and self harmd since i was 13. stoped bout 6 munths ago. but since being diagnosed its made me feel really low to the point where am crying most of the time.

all i want is comfort and support from him but he just tells me to forget about it and to stop getting upset... which is easier said than done.

i dotn think he realises that i need time to adjust and that feeling down cant jsut be switched off at the drop of a hat!!!!

i try and explain how im feeling and he ses im making a too bigger deal about it. i know my crohns isnt as bad as it could be but it doesnt stop me being scared of what could happen!!

i dont know how to make him understand

xx

i had this problem with the majority of my friends when first diagnosed and felt really low. i also still have this problem with my brother. crohns is a really tough disease for people to understand. i mean one minute we can be fine and up for doing anything and others we can feel crappy and want nothing but to curl up in a ball and forget the world. people just dont understand this.

maybe you should get your boyfriend to have a look at this site. does he know you will have up days and down days? i have a very similar problem with my brother. we will be watching tv and i will suddenly get a cramp and start groaning and rolling around on the couch and he will shout at me to "shut up" and "stop faking". i know the feeling you have of a loved one getting annoyed at you for something you just cant help and it is a horrible one.

i think that you should definately explain the disease to your boyfriend again. my friends only started to be alright with me again when i explained it to them and they knew i really needed them at that point. if your boyfriend thinks that crohns isnt a big deal then definately get him on this site! i think he really needs to know how bad this horrible disease is and know how tough you are being.

hope other people can offer you some good advice and hope all goes well best of luck.

aw laura sorry to hear that hun. i know what you mean tho - my ex had a similar attitude to any kind of illness, and that was i was either a hypochondriac, or i just needed to pull myself together. it makes you feel like you're on the outside, and its not a nice feeling.

i dont know what to advise you really - a lot of it depends on how you feel about your relationship, and if you think its worth putting the effort into, to try and educate him about your illness and how it affects you. if he has the right feelings for you and is with you (in his mind) long-term, then that might be a really positive way forward, and would bring you closer together. on the other hand, if you're not secure in the knowledge that your relationship is "the one", then i suppose you have some thinking to do...

either way, please dont take this out on yourself, and try not to go back down the self-harm route honey.

its absolutely natural to be scared when you're first diagnosed with something like this.. and maybe because crohns isnt a visible condition, he doesnt realise exactly how you're feeling physically and emotionally. maybe it just needs time for you both to adjust and accept.

big hugs. you're not alone with this, remember. x


dingbat.

It's bad enough having this disease without this sort of problem on top. I think most of us have had to go through it though. My Girlfriend was a nightmare to start with, eventhough as a nurse she knew something about my problem. Thankfully she is much better now.

As dingbat has said, you're not alone.

Shane

i know i wanna be with him cos i love him. but he thinks im moaning about the littlest thing but i dont think he realises that im not really coping with having it yet. ive seen my friend in agony n av always remembered that n am scared of being the same.

ive tried explaining but he tells me not to worry and to stop getting upset but i cant really help it. my mates dont really understand either. i dont wanna be ill

i suppose its true what people say that you cant really understand unless you have it. i know i didnt understand what my friend was going thru until now.

its really helpful getting support on here though its helped alot.

thank you
x

I'm not going to try to defend anyone, whatever their gender or relationship. That is something each of us has to sort out on our own. I do know, whether it is just a male thing, or the way I was raised.. (nature Vs nurture) that I really dislike the scrutiny of others when I'm in pain. It could be the cave man mentality of going into their cave, retreating rather than admitting weakness, pain, what have you. I dunno. I do know that two of the most embarrassing episodes from my life with this illness was when I had to sit in the waiting room of a clinic waiting to be seen by a doctor while enduring really intense cramps; and then another time when I spent 12 hrs in the ER, waiting to see another Dr.. think the latter was the absolute worst. Pain had become so bad that I no longer had a choice; had to go to the ER. sitting there, racked in pain, in view of everyone else.. After 1st 6 hrs or so, pain got to the point where I no longer cared who saw me; but those hours before that were totally humilating to me.

My point? Think men react to pain, deal with it differently than normal people, at least I do. When it's my pain, I like to go it alone. When it's others pain, it depends. Like, I can not handle seeing my kids in pain, or my better half. The 1st time my ex went into labour with our oldest, 36 hrs of hard labour. you may think its' funny, perhaps atrocious, for a man to claim that it was maybe harder on him than on the woman in labour. I know that I had a terrible time keeping myself under controll. I literally wanted to thrash the living daylights out of the doctors, who sat there so stoically, so un-emotionally, while she suffered so!! I kid you not..., I was virtually borderline psycho in wanting, NO, needing to do... SOMETHING, ANYTHING, to make it stop, to ease her pain, make it all go away!

Now some folks relish their pain, give voice to it, express it so it diminishes. It's a case of 6 of 1, 1/2 dozen of the other. don't know if there's a right or wrong to it... Women seem to share, communicate everything.. maybe even need to.
Us men? Ever watch the way we react when an athlete get's injured? Or one of our 'buddies' takes a tumble? Usually, it's not the way one would expect. I have seen close friends laugh at another's misfortune... or express awe at the nature/extent of an injury... like "Did you see that wipe out? Hilarious!" Or "Man, that's gonna hurt big time tomorrow" Dont' think we males know what to do... or more accurately, what a 'sensitive' person should do, in situations like that. So, when we see pain around us, we either react badly, or overeact in improper ways. Is any of this making sense? Well, it may or may not make any sense, unfortunately it seems to be prevalent amongst the male of species

so, my advice? my humble opinion on this? If a male of your acquaintance is of the habit to scoff at your pain, doesn't mean that 'he' doesn't care about you. If 'he' retreats in the prescence of your pain, doesn't mean he thinks its ingenuine... It's possible that he senses (yah, right) or knows it's all too real. I think it's quite possible (give it the benefit of the doubt) that this reaction is his 'defensive' measures kicking in... presented with an expression of pain that he is totally 'powerless' to fix, correct, make go away. Shunting you out of sight is a fast fix to an insurmountable problem. It's certainly not one of us males more shining moments, but somewhere in our evolutionary past paths, there is/was probably a good reason for it... elst, why would so many of us guys share this?

Or, you can go with the theory that all men are pigs, some just house broken!

OK?

crohns isnt a fair illness for anyone, but its particularly nasty for a child or teenager to discover they have it, (as i well remember), so its not surprising you are taking your time to adjust. it just occurred to me - do you think your boyfriend is also going through an adjustment period too? maybe he's worried about you, what crohns means and how its going to affect you, but cant share his worries because you have your own?

maybe you could both benefit from a heart to heart, and also dont forget its not a lifelong prescription for doom, gloom and pain - crohns symptoms can be helped, and many of us have periods where its not so bad, or even calms down completely.

i know i mentioned it before, but NACC may be of great help to you, or both of you - they might give you a lot of advice and support that would be helpful right now.

i wil try and talk to him.. we seem to be having alot of arguments latley so there isnt much time to talk lo.

he may be adjusting.. and that may be why he is acting the way he is, its other stuff aswel like sex.. im not the same as i used to be lol. (sprry if a shunt say stuff lyk that)

a dont think he udnerstands sometimes.

not all men are pigs.. mind u most are haha but ive got to admit if i see someone trip over in the street i wil laff.. i dont mean to be nasty or anything though

x

it can be a vicious circle - stress & worry can cause arguments, but in turn can make your crohns worse, which in turn gets you more stressed & worried....

i think crohns does change us - when its bad it kinda takes the fun factor out of you, and this has a knock-on effect on friendships, relationships, and yeah sex too. its not surprising, given the way the disease makes us feel sometimes.

i think time will be your biggest friend laura, you still need to adjust to having crohns, and getting your diet and meds sorted so that you can get some quality of life back. also in time your boyfriend will see that, although crohns is here to stay, it doesnt necessarily mean years and years of continual misery and bad health.

the one thing i find difficult to do, is to push myself to "enjoy" things when i am feeling bad and down.. its hard to find the middle ground between knowing when you're really not fit to do something, and knowing that if you just made the effort you'd probably appreciate it and actually have some fun. its still a learning curve (i mistyped and put 'curse' but i wasnt far wrong lol) for me, even tho i've had it years and years now.

and there are some nice men around - they're not all piggies - some just deal with things differently to women.

lol yeh.. i know what you mean about its hard to enjoy things.. ive been feeling really ill the past few days and i dont know whatta do with my self.

im meant to be going wales in may with my friend... problem is she wants toget drunk all of the time and she sounded abit gutted when isaid i wasnt going to be drinking. i want to be more careful of my health from now on and not risk making me worse

its hard being at college aswel cos no one in my class knows i have crohns and anemia.. so when i say i dont feel wel i think they think im skiving or trying to get attention, which im not.

im on one big rant lol.... ya know when ur jus in one of those moods
x

its so hard isnt it, when you've not told everyone around you what you have, and its effects on you. over the years i have chosen who to tell, some friends i told the whole story, some i just said "i have a stomach condition", as i didnt feel i wanted to go into detail. but it took me a long time before i felt brave enough to do this.. for a long time i tried to act like i was coping and tried to keep up with my previous social life, but in the end it backfired because i got no support or understanding.

telling people is much better, although its hard to do at first, as they actually understand what you're feeling and will (hopefully) accept that sometimes you cant do everything you used to.

i might try that.. although the people in my class are friendly... im not pally pally with them so i dont know if i should or not.. although it would be much better if they knew.

its hard keeping up with how i used to be... i dont think its really sunk in yet that im not really going to be the same again.. so im trying to be as active as i used to be.. but im so tired all the time..although i cant really sleep much

its so annoying
x

yeah crohns is a really tough disease but i think the first couple of months are probably the worst. i think letting people no about the disease is very important. i did what dingbat did and told my close friends all about the disease and told my other friends that i have a stomach condition and will feel down alot of the time. immediately i felt much better knowing the people around me knew a little bit about what was going on with me.

i didnt just go up to people and say "hi ive got crohns which means im tired,in alot of pain, and need the loo every couple of hours" i just gave the minimal amount of info out to friends and eventually the news inevitably spread that i had a stomach problem and may not be myself for a while.

before i told them in class i would put my head in my hands and groan when i got a stomach cramp and people would look at me and think what the hells he doing? but after they knew i was really quite ill they began to respect me and understand that this disease really is a tough bas***d!! this made me feel more comfortable at school and in turn i think this helped me alot. it may not be proven but i certainly believe that stress is a factor of crohns and feeling much more realxed at school and not worrying about people thinking im a freak definately helped.

as for being really tired and not being able to sleep i know EXACTLY how you feel!! it is soooooo frustrating! ive not got any advice for you on this as im pretty much in the same boat at the minute so if anyone out there has any advice id love to hear.

best of luck

you may well get back to having the energy levels you used to have laura. it may well be that once you get diet and meds sorted, and you mentally accept crohns, you could be pleasantly surprised at how like your old self you feel, even if its interspersed with flare-ups.

sleep is a horror when its evasive.. i've tried all kinds of things, like camomile tea before bed, lavendar inside the pillow case - they do help a bit. but if you're worried or stressing about something, things like that dont really help that much.

i remembered something else which prompted me to get brave and tell people i had crohns - i was fed up of being told i looked pale/tired, told to eat more, and in particular having a massive plateful of food plonked in front of me when i was at someone's house because they thought i needed a "good meal". i also hated being watched, as to how much i ate, then all the speculation about how little i'd eaten once i put my knife & fork down. i remember resenting all these comments and attitudes, but really it was my own fault for saying nothing up to that point - they couldnt understand if i hadnt told them. things were a lot better once i'd explained why i looked/ate the way i did.

Babe123 said:

i dont think its really sunk in yet that im not really going to be the same again..
x

Click to expand...

I know the feeling. Even 10 months after diagnosis, sometimes I still feel as if this is all happening to someone else and I'm just an observer. Then something will happen to bring it all home to me with a bang. I don't think this is something I'll ever 'get used to' but, I suppose you've just got to come to terms with it and make the best of a bad situation.

Shane

dya know wat i actually give up..my boyfriend can be so insensitive at times... we were tlking las night about me avin crohns cos im not feeling wel at the moment at he said -

'he wishes he could get things easier cos everyone else seems to have it easy and yet all of his happiness seems to have bad points n he is just after a perfect happiness'

that really really upset me .. i dont know if i am interpreting it wrong but it seems to me that im neva going to make him perfectly happy now ive got crohns

its not like he has got it!!!!!!!!!!!

on a postive note im seeing the specialist tomorow cos my appointent got movedforward yaaaaaaaaaaaay!!!

x

sometimes we men open our mouths, stick our foot in it, then make room for the other. Maybe what he was trying to say was that everyone else seems to live in a state where life is always simple... their road is smooth sailing, his is rough water. That could be immaturity talking, or some form of persecution complex. He may or may not outgrow this. Or, he could be blaming you for your disease. Thats something you need to determine. Then decide what to do, OK?

ok.. thanky ou.

it really upset me when he said that.. he doesnt realise im not coping anyway and that was one of the final straws. made me feel useless and that he will never be perfectly happy now ive got crohns.

MEN!!!!!! haha lol

just letting youknow that i may not be on here for a bit.. im not sure what is going to happen tomorow... they mentioned something about an operation to my mum so im not sure if i am coming home or not.. if i do iwill be straight on here=]
x

Good luck Laura. If we don't hear from you then you'll be in our thoughts.

Shane

thnk you.. im hoping they will just suggest a diet or something..will probably freak out if i have to have an op... although hospitals use n op as a last resort dont they?
x

I would think that they'd only do one if they had to. I expect you'll be given other options.

Good luck

Shane

all the very best for tomorrow laura - will be thinking of you.

i would imagine they'd give you notice if surgery was on the cards.. try not to worry too much, i reckon they havent exhausted meds treatment on you yet.

and re your man troubles, i think kev is spot on - this may just be immaturity, or he might be struggling to accept your condition. i hope things turn around and he comes round to giving you the support & understanding you need.

thank you.. he'd better start understanding or im goin end up loosin ma rag with him lol.

ye...i asked ma mum about it and she said that although they were talking about an op cos my little intstine is narrowed... they would probably try changing my food etc first...which im slightly happy about =]

wel.. i had blood tests done, ive got to have a barium meal and i might have to have a colonoscopy (i think that is what it is called)

xx

They are standard tests/investigations. Have you had any of these done before? If not... Don't worry, most people here (including myself) have had both of these done and, although perhaps not the most pleasent things to have, they aren't too bad at all really. You'll be sedated during the Colonoscopy (they don't put us to sleep over here like they seem to in N.America) and given pain relief. With the barium meal, I had a tube put into my bowel (via my nose) and they then put barium through it and took x-rays. Very straight forward.

If you have had them done... Sorry for telling you what you already know.

Shane

yep, i would echo what shane's said. these diagnostic tests are just some of the lovely extra bonuses we get along with our crohns disease lol

on the plus side, the actual procedures dont tend to take very long, and are always easier if you relax. and yep, they can give you things to relax you as well, and increase it if you're very anxious.

i've found the best policy is to be really truthful about you feel, directly before and during the procedure... the staff are usually really attentive and concerned about your comfort.

they said i would have to drink the stuff for a barium meal. am abit worried about the colonoscopy lol... ive had an endoscopy with sedation but apparently i was moving around lo... dont relli know how cos i was asleep for ages.. cant really remember much.

thanks for the information

x

Before you can be in a serious relationship with someone, you really need to love yourself. You mentioned you stopped self-harming 6 months ago. This suggests to me that you've only recently begun to heal/recover from an underlying issue. That task in itself is hard enough. Then, to find out you have crohn's on top of that!?!? You've got a really full plate right now.

As someone who's been in relationship after relationship where I was convinced I LOVED my boyfriend and they were the key to my happiness, even though they were incapable of truly loving me, I would say LOSE him! If he is unwilling to give you his unyielding support through the bad times, he isn't going to change. Believe me! I've been there. I can totally see myself in the words you wrote in your post. Letting him go now will allow you to get off the emotional roller coaster of "hoping/expecting/anticipating" his supportive love and affection, only to be dissappointed when he doesn't deliver. You don't need that right now given everything you're already going through. Find comfort in friends and family who want to offer you love and support, instead for now.

There IS someone out there for you! Who knows? Maybe you can hook up with someone from this site who can appreciate and relate to what you're going through! But before you do, heal yourself: mind, body, and soul, first. Then you can truly begin to have the capacity to love and be loved by the perfect soulmate for you.

There's plenty of fish in the sea!

* Note: Sorry, I didn't see all the latest posts about tests, etc, until I placed my post (a respone to your initial post on this thread. I'm glad to see you are making progress and getting necessary tests, etc....The worst part about the colonoscopy is the prep. You won't remember a THING about the actual procedure! Hope everything turns out well- with both the testing and your boyfriend.

They tell me each time, that I probably won't remember much about the procedure due to the sedative. But, I always remember everything about it. I suppose I'm one of the unlucky few.

I normally find that in the days leading upto it I'm anxious about having it done. Then when it's over I wonder what I was bothered about in the first place. Hmmm, maybe the sedative does cause amnesia......

I think drinking that Picolax is the worst thing about it. uke_r:

Shane

Shane,

I couldn't agree with you more on drinking the prep. AG! Sorry to hear the sedatives didn't work out as promised.

Prior to my tests, I had repeatedly made it clear to my docs that I needed HEAVY sedation. I think they complied! I will say, I do recall during my first procedure waking up and seeing the moniter they were viewing with a blurry image on it....I overheard the doc saying to amp up my drugs, then instantly went back to "la-la" land....However, I never felt any pain, or embarrassment, etc that you anticipate prior to having a colonoscopy done..Thanks to the drugs. *wink*

I find that they never give me enough pain relief or sedation really. On one hand it's cool as I can watch the screen and see the horror that is my colon whilst asking the Doctor endless questions. (I'm suprised they don't ramp up the dosage just to shut me up). On the other hand, it bloody hurts! I know I could ask for more drugs (had to for pain last time) but, I don't really mind being aware of whats going. I feel the sedation come over me in a nice 'wave' but, then I just feel normal again. I don't really get embarrased during it either.

Shane

I've heard from a number of UK posters that the practice there is not to knock out the patient. Here in Canada, and I 'believe' in the US, standard practice is that it's totally lights out for anyone having a colonoscopy. Which necessitates the patient be escorted, else they won't be released, after the anesthetized proceedure. That can be a problem, arranging for someone to either accompany you, or pick you up afterwards. My 1st few times, I thought it was overkill, the post procedure process seemed mild.. I felt like I could drive myself home. Last time, I had blackouts... carried on conversations, insisted on going shopping, a whole lot of things out of character for me... which I had zero memory of. That convinced me (which is why I'm passing it along) that anyone in N.A. who is in for a colonoscopy NEEDS to have someone there to pick them up/escort them home.

They tell us the same over here, as although not knocked out, we're still sedated. Even though I tell them I'm fine and the sedative hasn't effected me much, they still won't let me leave alone.

22wendylou, i know what you mean... evrything is getting on top of me and stressing me out. think i will talk to my boyfriend about it and see what happens. he can be supportive at times.. jus not all the time when i need support.

what do you have to drink for the prep?
x

I hope everything works out between the two of you.

About the prep for the colonoscopy....I live in America and mine were done a few years back now. I don't recall the exact name of the prep that I drank, but it came in powder form from the pharmacy. They supplied me with a gallon (or so) sized container. I had to mix the powder with water in the container. Then drink, drink, drink, drink, drink....I actually had a schedule for how much to drink and how fast...I think it was like 8 ounces every 5 minutes or so...All I can say, and I hope this doesn't offend anyone....Well, it tasted like male (ahem....fluids). So, it wasn't fun to drink that huge amount in such a short time...): Not to mention, about 1/2way through, I began to experience absolutely uncontollable BM's....I mean I would feel a sudden muscle spasm and that would be IT! I knew I better be on the toilet PRONTO!

However, the second time I had to drink a prep for a colonoscopy, I only had to drink a bottle (I think about a liter) of this super strong (lemon-lime-ish) sugary tasting solution. It tasted pretty bad, but not nearly as bad as the first. I think it was over-the-counter...Much MUCH more tolerable. Other people that I know who've had colonoscopies have told me their preps were bad, but described them more like the 2nd one I mentioned....

I don't recall having to sprint to the toilet for that 2nd one, either. But the prep is really to prepare (empty) your colon so they can see what's really going on in there....So, I guess it's gotta be done.

The last colonoscopy I had I was deliriously ill and was admitted to the hopital for an emergency colonoscopy. I got an enema for that one which was COMPLETELY embarrassing, but a necessary evil....In truth, when all was said and done, I decided this route might be better than having to drink the awful solutions, next time. It'd be nice if I could be in the privacy of my own home, instead of having a 19 year old super-model-looking nurse do it....

Obviously, I lived through it and millions of people do....So, I'm sure if you need to have a colonosopy, you'll be FINE! Hope this doesn't scare you. I wish I would've known what to expect beforehand. So I only mean to help you out....

Good Luck!

Well, Wendy... You've expressed yourself tactfully, and picturesquely, but I have to say... having lived a relatively sheltered life as an old, straight male, I never made the connection... the connotation, to the taste of scope prep. Now, having read the analogy you used; and having it indelibly seared into my brain.. my next prep will require that I not only take the gallon of prep into the bathroom with me, but also someone to hold a gun to my head. Thanks a lot!!

(Kidding).. I had to say something, just because whenever bon mots like that excreted themselves from my fingertips to the printed word on here, hoards of folks have ganged up on me and beaten me silly with rubber baseball bats. So, turn about is fair play. No, I shouldnt' say that, most of the time I deserved it!

Kev said:

(Kidding).. I had to say something, just because whenever bon mots like that excreted themselves from my fingertips to the printed word on here, hoards of folks have ganged up on me and beaten me silly with rubber baseball bats. So, turn about is fair play. No, I shouldnt' say that, most of the time I deserved it!

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Oops! Well, I'll await my beating! :blush:

I hope I haven't scarred you, or any other unsuspecting reader, for life....

Definitely going to be the pills next time. Thanks for helping me decide.

Dan Bergman