Crohn's Disease

lip

Hi,been ages since I was on.Unfortunately still no bed for me,and getting very annoyed about it now.GP wants me to go to A&E,but I don't really think theres any point.
Pinkyc,I'm with the others about talking to your Mother,she will totally understand and will worry worse if she thinks your'e not being truthful about it.I used to say I'm ok all the time to DH cos sometimes I think I'm constantly moaning,but you can't always hide it.Definately go onto the facebook site,there is people your age on it and its a great comfort to know your'e not the only one.
As for the fatigue,I always explain it as a tiredness slee doesn't get rid of.I could go to bed at 8pm and sleep right through til 10pm and still be exhausted.

Richard,have to say I haven't been psychologically affected TG.Do get p***ed off alright but other than that no.

The_Conductor

Richard Dower wrote: »

How many of you (honestly) have been affected psychologically by Crohn's?...as in repeated exposure to hospitals/medical stuff etc?

It really depends on what you mean by psychologically affected, to be honest.
Many factors can affect people- in my case growing up with Crohn's without a diagnosis- believing I was some sort of a freak in a high achieving household, when I never had any energy and was in constant pain. My parents even sent me to a psychiatrist ffs.

Since I was diagnosed with Crohn's- I've had extremely varied experiences, both of medications, and also of medical staff in general. I've seen the best possible treatment, and also unfortunately, the worst. I've spent 3 days on a trolley in St. James, with a cortisone drip- only to discharge myself in frustration (having been admitted by ambulance when I couldn't even walk)- to excellent understanding and care down in St. Vincents. I've been a patient in almost every hospital in Dublin- and have my own list of hospitals and doctors to avoid at at any cost- along with my list of hospitals and doctors that I try to get appointments with, when I need to.

I don't see that there is any great difference in treatment between the public and private systems- other than in the time it takes to get seen, and the ease of scheduling appointments to times that actually suit you- though it is ridiculous spending thousands for services that you should be given as standard (and don't even get me started on the EUR120 a month med bill).

Actually getting a diagnosis was the biggest psychological boost I ever got in my entire life. To be perfectly honest- there were many long nights while I was growing up- when I'd be in a lot of pain, running a high temperature, leaning against a window to try to cool myself down, listening to the strange creaks and groans of the house in the wee hours, wondering whether life was worth living at all. When you've pondered all these things for years on end- even in the middle of a flare-up when you're in agony- at least you know that after your prednisolone (or whatever medication you're prescribed) kicks in- you'll feel better in a few days- its a whole different situation- to sitting at the window looking at, pleading with the laws of nature to speed up, so the night might end and dawn come, and the sounds of people relieve you of your lonliness.........

kildareash

Hi all,
OH had more surgery on Sunday morning. Another collection had formed and he was in alot of pain and very unwell.
Deteroriated very quickly, so docs decided they had no option but to go back in.
It was a pretty big surgery, again. They removed another piece of his small bowel, they said it was very diseased and inflammed and needed to come out.
He's doing ok, so far. Was released out of icu yesterday. Was well enough to leave it on Monday actually but he was on alot of pain meds and they just wanted to monitor him for another 24 hours.
He's glad to be back on the ward...hated someone sitting beside him, looking at him all the time!
He's a bit down now...I hate these few days, with the effects of the anesthetic and pain meds. But hopefully by the weekend he'll be starting to pick up.
Docs are hopeful that this could be an end to things, this piece was so badly inflammed that it could have been causing the collections. Fingers crossed

Lip, That's appalling. You should have a sit-in protest or something. Going to A&E might get you seen to tho.

geor

Crohn's or Colitis takes over so much of your thoughts. Even if you are well and in remisson you will still think about your bowel 20+ times a day.

I expend so much energy just worrying about ,trips to the loo, medications, probiotics etc etc...

I sometimes think what I would do if I didnt need to worry about it anymore...

still everyone has problems of some sort - we never know whats going on in other peoples heads...

The_Conductor

geor wrote: »

still everyone has problems of some sort - we never know whats going on in other peoples heads...

I keep telling myself that yes, I have a serious illness- but I know about it, I know what I have to do- and when, and I know how it affects me. There are loads of folk out there who have no idea whats wrong with them- no matter how bad my day is- I'm in a far better boat than they. Occasional semi-psychotic thoughts about random things also put me in a good mood

ladybirdirl

Richard, great question & one which I've just recently discussed with those who know me best.

Flippin crohn's has caused me so much damage which I've only recently seen. I think I was in a flare for about 2 years but kept denying it. I was going up in meds, losing my hair from Imuran, getting daily B12 injections which were doing nothing but I wouldn't give up work then got put on steroids. My weight ballooned.

Then I got put on Humira & taken off Imuran. It took probably 6-8 months & I can honestly say that now I am back to me.

I was a shrew & I really didn't see it. I was exhausted & trying to hide it. I was trying to be normal but would meet my partner & then find an excuse to go home because I was convinced I was smelly. I had awful body issues because the steroids blew me up. My B12 got so bad, I sounded drunk at times because I would slur my words or else I couldn't find the word I wanted. All this time I kept working even though it was madness. I was losing my hair & felt about as desirable as the pilsbury dough boy. I couldn't go out, I didn't dare go on holidays, I made excuses for everything. I did have some other personal stuff going on at the time but even that I didn't deal with properly because I was all consumed by the crohn's. I didn't have a breakdown as such, I was just totally irrational to anyone trying to help & I just couldn't not even form the thought that I was in trouble,it was there & I couldn't verbalise it.

Anyway, got put onto the Humira. I think it probably took 6-8 months but my god it feels like freedom. I now go fishing without checking out where the toilets are & without timing the trip so I can get home if I need to. I don't stumble over words anymore, it feels like my brain is out of a fog. I've taken up singing again which I had to give up. I'm back to engaging in life again.

It's soo so true that crohn's does affect you psychologically, you get so down about living your life around a toilet. :rolleyes:

I sometimes think all us crohn's sufferers need to apologise (well I do) to those who are dear to us for turning into a looney in a flare up. To those who have a crohn's sufferer in their life please remember it's not them, it's this awful disease!!

LB

diskodolly

hi ladybird,
i hear wher your coming from when i have a flare up which im having at the moment, i will usually blame anything but my crohns for the pain, ill be trying to let on im ok, ill say ive period pain backache anything other admitting its my crohns dont want anyone's pity

i am on my 4 course of steroids since 2 weeks before xmas, getting a week at most between courses. i am having a few test to see if im suitable for Humira, chest xray, man 2 test and some blood tests, please god ill be suitable as i hear great things about it so im afraid to get my hopes up a:)

diskodolly

Richard def think you have a good point i think how you think and feel affects crohns, i went to see a homeopath and he helped to see what bothers me deep down inside and to be aware of these things and have the ability to fix my own problems,find my voice and not allow things to eat me up inside!!!!
you can get so down and pi**ed off.

id love love love to be able to just eat and never have to give it a thought like will this drive my tummy crazy, cant eat iceream, mushrooms, potatoes or bananas without nearly ending up in A an E :eek:

ladybirdirl

diskodolly wrote: »

hi ladybird,
i hear wher your coming from when i have a flare up which im having at the moment, i will usually blame anything but my crohns for the pain, ill be trying to let on im ok, ill say ive period pain backache anything other admitting its my crohns dont want anyone's pity

Yup I'm there with ya... I don't know why us girls get this ' I don't want pity' thing going, seems mad doesn't it, I envy guys in that respect, they will usually say, I'm sick I need to stay in bed faster than we will (ok sweeping generalisation there:p)

Have your tests for the humira, most people are suitable. I was very against it, I spent a long time telling everyone I would only take it for 6 months but my word the freedom it has given me. As I said I'm back to being me, I can only hope now I can repair some of the damage I did while I was being irrational!!

I'll keep my fingers crossed for you, let us know how you go

LB

The_Conductor

ladybirdirl wrote: »

Yup I'm there with ya... I don't know why us girls get this ' I don't want pity' thing going, seems mad doesn't it, I envy guys in that respect, they will usually say, I'm sick I need to stay in bed faster than we will (ok sweeping generalisation there:p)

It is a bit of a sweeping generalisation to be honest- I think when you have Crohn's- unless you are almost totally immobile- you do your damndest to try to be out and about. I think most of us probably push ourselves a lot more than is a good idea- I've lost count of the number of places I've collapsed in- or when driving the number of times I've had to pull in just to take off my seat belt and throw up.

One thing I've noticed recently is a craving for things with the highest possible sugar content, when I'm feeling under the weather. I suppose I don't have the capacity to eat as normal- but I'm still pushing myself like normal, and surviving on coffee/caffeine and sugar.......?

I think I've got to explore the Humira option- I've never lost my hair from Imuran- but my white cell counts are at critical levels (to say nothing about my haemoglobin count- but my white cell count is more important).

Is there any secret way to try to boost your iron levels- its annoying having to go back for transfusions every 12-18 months?

S.

degrassinoel

just signing in, completely in the pits with this **** lifestyle, hah i made myself feel worse with my awesome pun lol

but yeah, it has affected my personality even before i was diagnosed 10 years ago. lost all my friends, even fecked up one or two relationships, lost 3 jobs, 1 excellent one, changed career from office to labouring, no difference, just more tired and more sleep, got sacked for being being sick six months later. getting mad skin rashes and eye infections apparently from the crap food i have to eat.
i've a feeling i'm probably suffering from depression or severe cynicism.

To make matters even worse, even my family dont give a rats arse when i say i'm sick or having a flare up anymore, it happens so often its like "..oh he's sick again bigdeal, coronation street is on".

I cannot get a job, and keeping one is near impossible, should i ask the GP/Hospital to put me on disability?
I mean this is getting ridiculous, the disease has taken over my entire life, and the more jobs i lose the harder it is to find new employers, and then explain why i left the last job.. ffs catch22

bah, sorry if this isnt even making any sense, am just in the height of it at the moment and really frustrated with living with this for so long.

diskodolly

who is your doc, what treatment are you on, i know how you feel ive been wher you are in the past and a lot of having crohns is helping yourself even though it should not be this way,
there are good treatments out there, are you on any, im being tried on humira soon i hope as am having a nasty flare up.
i do spend a lot of time feeling sorryfor my sele its hard not to when your suffering its hard to thing positive, you need to make your job at the moment finding how to get help, be a pain in the arse, im only starting to be that way, as for yor family its unfair the way they treat you, they have no idea whats its like,

i really wish you the best,

DD

Richard Dower

It's been said before, by professionals and patients....the #1 factor in Crohn's in stress and psychological factors, stress dosen't create the disease or cause flare ups bu it does effect treatment and how seveare flare ups are.

Unfortunately it's a catch 22, the reason you feel like crap and depressed is because of Crohn's/flare up. I know from personal experience your body reacts to how you feel, you'll physically get more ill when down. Mind and body are 100% linked.....you know what i most fear?

Getting sick again, why?....because when you're going through it you know no better, it's all new and you go through it, but now i have experience and hindsight. I fear i won't be able to handle it becuase i have all these bad experiences and memories, many times when i went back into hospital i got panic attacks, i'd sign myself out or just leave.

For me it was drips and being trapped that triggered it, you're on a bed with drips in arms and noise and machines, it triggers a feeling of being trapped and i can't escape....it's irrational fear and panic. My consultant told me something i never forgot......some people have problems before (Crohn's), some develop problems afterwards....you're somewhere in the middle.

He was 100% right.

degrassinoel

not on any form of treatment, but a few years back, like 6-7 years ago i was on these big brown biscuit-like tablets, pentasa i think, unfortunetly they made me sicker than i'd ever been since i was diagnosed, so the GP took me off them and gave me a 3 week course of enteric steroids

steroids work great but they have terrible side-effects with me.

Anyways, after the pentasa failed, i was offered surgery, and i went for it.. until like you said Richard, the fear set in.
the morning i was to be operated on i told them i wasnt going to sign a consent form unless they could give me a 100% sucess rate, and not a 50% like it said on paper.

I was quite young at the time, (23) but i still feel that same way about having my belly torn open and my guts severed and re-attached. For me, that is NOT an option until steroids or massive doses of drugs fail to work.

Doctors werent impressed, went back to the stephen doyle endo unit in beaumount a few weeks later and they said i'd have to schedule again for surgery.. i said no, they said "thats your only option".
So i stopped going back to the hospital.

I made a stupid decision that ultimately paid off, maybe because i got lucky, but more through trial and error.

the following two years i was sick as a parrot for most of the time.
made a chart with all the food i thought was to blame for my flare-ups. cancelled them all off the menu for meself and was left with basiclly no veg, no fruit, most other things are fine.
Since that i found that i can eat most meat and most dairy but i cannot eat ANY veg or any fruit of any kind in any quantity.
best i can do is a dollop of red/brown sauce with my dinner.. ie: sauce and sausos or beefstew with oxtail(no veg), chilli etc..
Rice and Pasta are okay once or twice a week, but i do get those twangs of pain (9.5min intervals) and super-loud gurgling from my guts about an hour afterwards for a few hours. like a busted radiator! lol

I'd commit murder for a single of salt and vinegar spattered chips with onion rings and roast potatoes with mushy peas and carrots.
i sound pregnant dont i? lol

Anyway, the wierd thing is, for a guy that eats a meat and dairy - protein and fat. should have loads of energy right? well i dont, i can barely get up in the morning without 3 alarm clocks trying to wake me, and even then i sometimes manage to sleep through them all, same lethargy all day long too. thats not natural!

oh, and get this! when i told my doctor(local GP) about this he said i'm depressed and i should read "The Secret".
pff.. i actually bought that useless piece of crap and let me tell you, it IS rubbish! i wasnt depressed at all, i broke me heart laughing at that book!

blergh! another long post, sorry.

@Diskodolly - i dont blame my family, i used to feign sickness when i was kid to get out of going to school.. whole other can of worms there.
cried wolf, wolf came and infected me with crohn's..
Thanks for the support though folks, its nice to finally be able to vent some of this crap to people who do actually understand.

speaking of which, when something like this actually does hit home ye really know who yer friends are.

ladybirdirl

smccarrick wrote: »

It is a bit of a sweeping generalisation to be honest- I think when you have Crohn's- unless you are almost totally immobile- you do your damndest to try to be out and about.
S.

Not my intention to be making out that girls suffer longer than boys, just making the point that in all the crohn's sufferes I've met of both sexes, I've always admired the boys for their ability to recognise they are in trouble with a flare & go rest faster than the girls will. Just my experience.

You're totally correct that you do try and stay going for as long as possible.

On the iron thing..can you take liver?

LB

The_Conductor

ladybirdirl wrote: »

Not my intention to be making out that girls suffer longer than boys, just making the point that in all the crohn's sufferes I've met of both sexes, I've always admired the boys for their ability to recognise they are in trouble with a flare & go rest faster than the girls will. Just my experience.

You're totally correct that you do try and stay going for as long as possible.

On the iron thing..can you take liver?

LB

Can't take liver unfortunately. I've an appointment with haematology in St. Vincents on Thursday morning (more to do with my white cell count than low iron) so hopefully it'll get sorted.

Ush1

Hi all,

I was diagnosed with Crohn's Disease yesterday. About a year of cramps, pain and diarrhea I went to a specialist and got the colonscopy. The consultant said my stomach looked normal but my entire bowel was inflamed, particularly bad at the lower part. She prescribed me a steriod starting with a p, pre-something? I have to take 8 of them a day for the first week, and lowering by one each week till finished. I also have to take 1.2mg asacolon twice a day. I think I have that barium test in about 2 weeks, is that unpleasant, do I have to take a laxative? Couldn't stand the klean prep stuff for the colonscopy. She then said I'll get some more blood tests and then see her again and see how I'm doing.

Now I think she said mine was severe but I don't think it's as bad as alot of other peoples on here, certainly my symptoms. I get cramps, bad gas and needing to go toilet alot but have never passed blood or anything like that. Never stopped me from going to work either, although I often feel uncomfortable.

degrassinoel

Hey Ush1, welcome to the boards
and congrats on your diagnosis, i know how much of a relief it can be to find out what it is thats making you sick.
took me about 2 years to get mine done.

The barium meal is pretty easy, you just drink this chalky white liquid that turns your poo white. then they do a scan or x-ray about a half hour after you finish
(been so long i cant remember which) the chalky stuff shows up irregularities within the digestive system.
perosnally it didnt work for me, the colonoscopy was what found evidence of crohns for me.
You shouldnt have to take any laxative(Unless you're told to) and yeah that kleenprep stuff is aweful! You may have to fast before hand, but ask first if you're unsure.
Sounds like it's very mild, thankfully enough but keep up visiting your doctor/hospital, and remember to tell them everything, and ask them everything if your not sure, its your health

diskodolly

ush1,

you should make sure to take a calcium suplment when on a big dose of steriods, not thats is that big but it fecks up your bones. you may get pains in your leg's hips or bones and will want to get up at 3am to eat toasted sandwiches when on steriods. YUM

hope things settle for you soon, hate the barium its so tasteless, i had a n NG put down as knew i wouldnt drink the stuff..:eek:

DD:o

Richard Dower

Ush1 wrote: »

Hi all,

I was diagnosed with Crohn's Disease yesterday. About a year of cramps, pain and diarrhea I went to a specialist and got the colonscopy. The consultant said my stomach looked normal but my entire bowel was inflamed, particularly bad at the lower part. She prescribed me a steriod starting with a p, pre-something? I have to take 8 of them a day for the first week, and lowering by one each week till finished. I also have to take 1.2mg asacolon twice a day. I think I have that barium test in about 2 weeks, is that unpleasant, do I have to take a laxative? Couldn't stand the klean prep stuff for the colonscopy. She then said I'll get some more blood tests and then see her again and see how I'm doing.

Now I think she said mine was severe but I don't think it's as bad as alot of other peoples on here, certainly my symptoms. I get cramps, bad gas and needing to go toilet alot but have never passed blood or anything like that. Never stopped me from going to work either, although I often feel uncomfortable.

Prednisolone, thats an old name for it....they call it Deltacortril nowadays:

http://en.wikipedia.org/wiki/Prednisolone

Ush1

I'm feeling abit more energy now I think and people are saying I've abit more colour back in my cheeks so hopefully the roids are doing there thing.

degrassinoel

Nice one Ush1, they worked fairly fast with me on my last flare-up, 3-4hours and i was feeling better.

did the steroids (for anyone who's been on them) have any strange side effects?

besides being a remorseless eating machine with an unquenchable appetite, i found i was losing my temper with people a lot! may just have been sickness frustration, as i dont normally have such a short fuse.

The_Conductor

My GI consultant forwarded me to a Haematalogist consultant given the state of my recent bloods- and I've been removed from Imuran and all Crohn's medications. Apparently there are 7% of the population who are hyper sensetive to Imuran- and they think I may be in the 7%. A consultation yesterday morning turned into being admitted, having bone marrow taken, whole new blood work up, IV antibiotics for the bacterial chest infection and a booster injection to help my white cells. I suppose its better that I didn't know about it in advance...... By god is taking bone marrow painful......

LucyBliss

smccarrick, you poor thing having to go through that. I hope you can rest up for the weekend.

The_Conductor

LucyBliss wrote: »

smccarrick, you poor thing having to go through that. I hope you can rest up for the weekend.

Yes- I'm taking things easy for the weekend. I've to go in for a transfusion on Tuesday- I should feel a lot better after it, I've been very under the weather lately. I guess its good that I'm getting myself sorted before our baby is due in April!

LucyBliss

I didn't know a baby was on the way! Congrats. How exciting!
I love good news like that, especially when you hear so much bad stuff when you're ill.

The_Conductor

LucyBliss wrote: »

I didn't know a baby was on the way! Congrats. How exciting!
I love good news like that, especially when you hear so much bad stuff when you're ill.

Thanks a mill- Cathy is 30 weeks pregnant, we're expecting a little baby boy. We're both really excited, and exhausted (she is really anaemic too) at the same time. Our little one is so incredibly active- he is constantly kicking her. Its really funny watching. I also love playing tap-tap-tap with baby- he kicks back in response. Lol....

diskodolly

had the bone marrow test done myself pre diagnosis very painfull big needle into the hip, any one here every had a hickman put in while awake now that is PAINFULL !!!

just finished a course of steroids and my heart is racing all the time i would be on the verge of a panic attack it would be going so fast, on a weeks hols now from work cant wait to take it easy!!!!

Richard Dower

I'll see your hickman and raise you a central line! :-)

The_Conductor

diskodolly wrote: »

had the bone marrow test done myself pre diagnosis very painfull big needle into the hip, any one here every had a hickman put in while awake now that is PAINFULL !!!

just finished a course of steroids and my heart is racing all the time i would be on the verge of a panic attack it would be going so fast, on a weeks hols now from work cant wait to take it easy!!!!

Yes, Hickman while awake, and central line too......
The endoscope I have scheduled for the 5th of March seems like a holiday in comparison........