Chrons disease

[rosie]

chrons disease

Hi.
Been diagnosed wth something called chrons disease 3 week ago.
HUH???
Am i ill?
Whats Chrons disease?? I dont feel ill been giving some tablets and have to be on steroids for a while. Dont feel ill at all. i dont think anyway. Steroids.... What are ppls side affects on steroids??? Im so hungry all the time on them i cant stop eating. put on 3 stone in 3 weeks. Not sure y im on steroids either. Is Chrons bad? or is it all ok once am off steriods and am just taking the tablets iv been told am gonna be on for life??!!
So confuuuuused with it all.

 

[merrywidow]

how can the doctors diagonse crohns if you aint ill? if you had a flare of crohns you would know about it. what tests did you have and what tablets did the doctor put you on except for steroids, what doseage? regards sharon x

 

[rosie]

I was ill yes a flare i had thats y my partner took me in else i wouldnt have gone. but on steroids i just feel fine. i had fingers and a cam up my bum and an xray for tests and blood tests. They came back to me with chrons after 2 weeks in hosp. i dont know wot tablets im on. 3 red long ones in the morning and night a white long one a pink and white plus 6 steroid tablets. i dont know the dosage either. Seriously docs have told me nothing and i cant understand him very well in all fairness. the names of my tablets are on the boxes but my partner does my tablets n there in a safe place outta kids way. so sry my reply is funy.

 

[soupdragon69]

Hi Rosie,

Welcome to the forum! Hunt out your med boxes and put the names up here and some of us should be able to give you an idea of what they are intended to do.

Steroids overall only work in the short term. They can cause increased appetite as a side effect and also sleep deprivation too even though you might feel full of energy and tired at the same time (kinda hard to explain). They will decrease inflammation/irritation in your gut and so the pain should decrease but folk find once they stop the steroids the problem tends to return again. Your other meds will probably be to prevent this from happening and the steroids to try and ease your problems immediately in the meantime if that makes sense?

None of us are medically trained here but we will try to support and answer any questions you have ok?

Perhaps you could tell us a bit more about yourself on the Introduction threads?

Keep posting and asking we all understand the confusion of first diagnosis and getting your head around things. What I would say to you is everyone is different. Different foods affect different folk, different meds help one person and not the next. Its about finding what works for YOU, resting when you need to and eating well when you can to supply your body with the nutrition it needs to cope day to day both when you are well and when you are not.

Well done to your partner for helping you get sorted out too! He can read and post here too as we have some couples posting along with partners of those who have crohns or other bowel problems.

Hope my thoughts have helped Rosie. Welcome again. Hang in there things will improve honey. Thinking of you ((hugs))

 

[rosie]

Ah thank you for the welcome. To be honest thats why im here. i dont understand the doctors terms and theyve sent me away not telling me anything and just confused. Im being monitered at the minute and i keep sayin im fine i dont feel ill and all they say is i am ill stop thinking like that but how can ya see ur self as not well when you think u are. Gets me mad. all chrons is to me is tablets and an unusual amount of toilet trips with a tummy ache now and then. yes thats how i feel on steroids it is hard to explain. Thank you for replying. Its helping alot hearing what others say because unless you have chrons its hard to talk and feel like im just drowning on to ppl and makes it hard to evalute if its chrons im feeling or if iv just got a regular bug lol i just dont get what iv got and while on steroids i dont think i feel ill at all. so i was thinking this is how its gonna be until im hearing remission and surgery and flare ups and tummy aches and things :S thanks for letting my partner in too hes trying his best bless him. all new to us. introduction threads?? what are those? think iv worked out how to fill in my profile but thats as far as iv gotten.
right the pills im on are : omeprazole, asacol, prednisone,ciproflaxin and calci chews lol

Thank you very much nice to meet you x

 

[Colt]

None of us are medically trained here but we will try to support and answer any questions you have ok?

Well, there's me and I thought we had a nurse around too. No GIs though.

Anyway, Rosie, crohn's disease is an incurable problem where your own immune system attacks your digestive tract for no apparent reason. Other parts of your body are affected by your out-of-control immune system (such as joint pain) but the main focus is your digestive tract (usually the colon, A.K.A. large intestine) which means anywhere from your lips to your anus. You'll have this for the rest of your life. It will be better some times, and worse some times, and it's extremely difficult to predict how sick you're going to be at any given period of time.

Some of the effects of the disease are:

* Inflammation (swelling to put it simply) which can cause you pain, temporarily block your absorption of food and water as well as digestive fluids (what it blocks depends on where it is and it can occur anywhere in your digestive tract), swell shut your intestines causing them to back up like a clogged drain, etc.

* Ulcers which are little holes that develop on the surface of your digestive tract. These can cause pain when your food passes over them, they can bleed, cause scaring that permanently blocks absorption or permanently blocks your intestines requiring surgery to remove part of your intestines, etc.

* Fistulas (not everyone gets these) which are like ulcers but they burrow deep holes that can lead off to anywhere in the body and even connect your digestive tract with other organs (such as leaking feces into your bladder, lungs, or even out into the open air through your skin).

The drugs you are currently on are:

* Omeprazole is just a stomach acid reducer. Maybe you were having stomach ulcers which would be helped by reducing further eating-away of your stomach lining by reducing your stomach acid.

* Asacol is an anti-inflammatory drug for the intestines. Pretty simple, it helps that symptom. The ulcers and fistulas are a result of the inflammation as well so reduction in inflammation means a reduction in the other two problems.

* Prednisone is a steroid. Steroids are very powerful anti-inflammatory drugs. Again, the main action of this disease is to inflame your digestive tract. Because prednisone is so powerful it is not good for long-term use. This will likely only be used to help you get through really bad periods. You may feel much better on Prednisone but you will have to come off of it eventually wither you like it or not.

* Ciprofloxacin is a strong general antibiotic. Typically Flagyl is the antibiotic of choice for crohn's because it is especially focused on the intestines. I don't know why they decided on Cipro for you. Why antibiotics sometimes help with crohn's disease isn't really known. My take on it is that it helps to heal the ulcers which are usually going to be infected due to the environment of your intestines.

* Calcium supplements are there probably because you had a calcium deficiency. Vitamin deficiencies are to be expected with inflammation and/or scaring block parts of your intestines from absorbing those vitamins. Each part of your intestines absorbs something different so if the part of your intestines that absorbs calcium is being affected by your crohn's disease the supplement will help. It's also possible that it's a preventative measure associated with your steroid use. Calcium helps strengthen your bones. Prednisone will weaken your bones.

It's important for you to understand that just because you feel well now does not mean you won't be in the operating room in 6 months. They kind of threw you on the heavy hitters right at the beginning. That's probably not going to last. They'll have to take you off some of that medication eventually and then you'll likely start to feel bad again. The interesting thing with crohn's though is that it can go into remission. Sometimes because of medication, other times for no apparent reason at all. Some people (rarely) even end up with remissions that last 10 years.

Read up on our experiences and you can get a good feel for how things could be for you in the future. It's important to know though that there is an extreme amount of variety in how crohn's affects each person though. Depending on how bad the crohn's is and where you can have entirely different symptoms from someone else with the same disease.

I'll be happy to supply you with more information as your little adventure on our forum continues but this should be a good starting point for you. Feel free to ask questions. We love to answer them.

 

[rosie]

THANK YOU VERY MUCH colt. !!!!!!!! my heads been like an untuned tv for the past 3 weeks!! I have ulcers?! hmm What do ulcers do are they ok being there? so i am being naieve by thinking that once am off steroids everythings fine! how cruel to put me on steroids!! operating room :/ why if its incurable? my doctor says just cos u feel well doesnt mean u are. which made me mad and thinking but how can u be ill if u dont feel ill. Yes being registered here is helping me alot. Its hard when no one round u understands and al ya get is ah stop playing on it or tryin not to sound constantly a drone about chrons. likely start to feel bad again? any point to taking the tablets? do u know what feeling bad means?? i seriously thought i was all fixed!! just came in to talk to another chrones suffer to put my mind at rest by sayin ha yeh i got it too its all good!

 

[rosie]

y u angry colt?

 

[soupdragon69]

Hey Colt,

Am not being smart here but my reference to none of us being medically trained meant that none of us are DOCTORS.

You are very right there is a nurse on the forum and an experienced one at that ;-)

Rosie glad you are starting to get some answers. A website prepared by the medical staff at my hospital is found here www.crohns.org.uk

You will find info about Crohns, diet, medications etc in an easy to understand format and I know others on this forum have found it of use including me. Just click on any topic on the top of the page on that site ok?

On the not feeling ill aspect not everyone has pain and I would say to you not everyone realises how tired or what level of pain they had to begin with until they get actual relief. Ask your partner what he thought - remember he took you to get sorted out as he didnt want you suffering any more. Something to think about eh?

Feel free to private message me if I can help in any way ok?

On the intro threads - if you look at the original listing when you log into the site you will find an area at almost the top where folk talk about how they found out they had crohns. You will find some fought for years for a diagnosis and others found out quite quickly like yourself and it came as a total shock.

Keep posting honey.

 

[GoJohnnyGo]

Rosie:

I think you can still strive for an optimistic outlook. Right now you are probably facing information overload (in which case worst-case scenarios play havoc with your mind).

Take a deep breath, and try to gather the facts as best you can. Nobody here is trying to scare you. In time, you'll settle in to your particular level of the disease and the coping skills you'll need.

We're all here to help each other.

 

[rosie]

yes u see from what i was im not ill anymore.. evrything has gone. ( not realising it could actually be the steroids) but then i came to thinking oh well steroids are making it go to normal and the chrons tablets will keep me feeling how i am :S evidently not! thanks go johnny, i think so maybe too. i dont know i just dont know. Maybe i just have to wait 9 weeks till im off the steroids and check in see if my symptons are the same.. think im just panicking!! its jsut crap not really knowing or what to expect.

 

[GoJohnnyGo]

You have every right to feel panicked. It's one hell of a thing to try to wrap your brain around when you are first diagnosed.

Panic is perfectly natural reaction. I think, though, that anxiety is ultimately unproductive as it produces stress in and of itself. What is the old saying? "The only thing we have to fear is Fear itself."

 

[soupdragon69]

Rosie check out the website I gave you in my last post. It will probably help sort out any concerns. There are VERY mild versions of Crohns and you could well fall into that category.

Take it one step at a time honey. I had to go over things many times to get my head round it too. Johnny is very right in what he said.

 

[Colt]

I get abused by nurses too much to let one get away with saying I'm not medically trained. :ytongue:

Rosie, when people have a serious illness like this they inevitably go through some grief. You lose a lot of things when you're so sick for so long. In the psychological study of grief various ways of coping with the grief are identified. One of those is anger. Generally it's kind of weird for someone to acknowledge their coping mechanism, and especially in a public way, but I'm a weird person and spending time on this forum and thinking about it has really helped me figure out why I'm always so grumpy. I'm simply mad at the disease for making me suffer and ruining my dreams, and I'm mad at the world for not being fair and helping to right the injustice. Like all of us, you're going to have to come to terms with the disease and that's going to involve some grief and you'll go through your own assortment of coping mechanisms. Here's more information on the stages of grief: http://en.wikipedia.org/wiki/Kübler-Ross_model

Ulcers are a bad thing to have. They are open wounds and considering your intestines contain the same matter that fills your regular sewer system they tend to become infected wounds. These can be in your intestines regardless of if you're having pain or not.

Here's a tongue ulcer for example (crohn's disease can cause these):

When you go off of the Prednisone you may be okay for a while. That's the thing, it's very difficult to say. Prednisone can help you go into remission. Remission with crohn's isn't like remission with cancer though. It will end eventually. You may also have reduced severity. It's also possible that you could be as bad or worse than you were before the Prednisone (though it's not really the Prednisone's fault).

Regardless while on the Prednisone you're feeling better and it gives your body a break so that it can do some healing. It's like sprinting. Try to sprint a kilometer and you're going to do worse and worse as your exhaustion compounds on itself. You'll take forever. Sprint 200 meters, stop the clock and rest for a while, then do another 200 meters, stop the clock and rest for a while, and so on, and you're going to have a much better time.

Surgery for crohn's is usually to remove a section of your intestines that are so badly diseased that it's immediately life-threatening or completely debilitating. With that part of the intestines gone you'll continue to live, and you'll probably feel a lot better until the disease builds up damage elsewhere in your digestive tract.

Honestly, you're going to learn with time to be happy with 20% better. You can't be all or nothing with crohn's. Anything that helps at all is good. 100% better would be awesome but it's not something that you should be demanding, because it's very unlikely to happen.

You'll find that one of the hardest things about crohn's disease is that it's not very visible to other people. People can't handle that very well and they refuse to believe that you're sick. It's a constant struggle but that's the best thing about this forum. It helps so much it's hard to explain. Being able to talk to other people who truly understand what you're describing is invaluable.

I really am so sorry that you came here and found out such dreadful things. We've all felt like you do at some point. It's really overwhelming to suddenly realize that the rest of your life is going to be different from everyone else's. But, that's why we're all here. We're all normal again when we're here among others like ourselves. There are dozens of people here ready to bend over backward to assure that you feel supported and to help you as much as we possibly can. Just ask.

And like everyone's said, not everyone's a worst case scenario. In fact, most of us are not. I was diagnosed 8 years ago, have been having symptoms for at least 10, and I've never had a surgery nor do I expect to have any time in the next 5 years.

 

[rosie]

hmmm. acknowledged!! bit peeved at the mo i think. Such a damn shame iv got this!! to busy for chrons!!!!!! ah thanks for putting the surgery bit in. Im not intending going back to hospital. 2 weeks was first and last and long enough for me! Yes cos no one else knows bout it and ya cant see it ppl are forgetting or saying that im playing on it and also with me not feeling ill i thought well yes maybe.. just so frustrating. Sorry if i came across as bragging or anything i think i know that i am ill deep down im just i dont know.. i also think im lying to self a little bit like pretending. i get tummy ache at least once a day that im not saying about and even on steroids i can go to the loo like ten times a day. these damn steroids tho. symptons?? what are ur symptons whats ur normal on this? cos im putting evrything down just to wind or a 24 hour bug or something ya know? hard for me slightly cos dont want to play on it so keep it to myself. i get a really hard tummy and a sharp pain in my tummy when i breathe out in the mornings that the symptons of chrones :s

BASICALLY all i know i was ill, i had real bad cramps couldnt eat was throwing up 20 + trips to the loo and constantly tired. Got forced to hospital stayed there 2 weeks, got told id had chrons that its incurable got given tablets and sent on my way. now i feel fine. im constantly hungry put on 3 stone go to the loo like 5 daily and only have a tummy ache for a while sometimes. so i gather that chrones is something thats eating at my intestines u get tummy ache and just go the loo more times than non chrons sufferes. didnt think there was anything else to it. was just waiting for steroids to stop so i could lose my weight be aware of where toilets are and just take the "chrons tablets" done. :S:S:S:s hence why im a little flabbergasted now! Thanks for your help all. Guess nothing i can really do till im off the steroids.

Ulcers look nasty!!!! maybe i dont have any good job ya dont know if ya have em or not

 

[GoJohnnyGo]

Rosie dear....

To be quite honest, it's probably better to err on the side of being labelled a hypochondriac than trying to be a hero. To deny your symptoms only hurts yourself and ultimately your loved ones. I know this from personal experience.

 

[rosie]

just sick of things having to result in blood tests already or surgery!!!! or anything to make me go back in hosp. Me too kind of, if i went in like a year ago id only have IBD or colitis and not the disease apparently its jsut crap. Just want it to go away already!!! how u ppl have put up with it for so long i dont know. like years :s and the ones who have surgery. I really dont want it :'( Im scared. we are actually ill for sure arnt we :S

IM GUTTED :'( kinda feel like crying but its all gonna be good. just overwhelming. big wimp im being :S

 

[GoJohnnyGo]

Well Rosie, as much as it all sucks and there's nothing good to say AT ALL about having the disease, there are some things you can take going forward.

First off, prioritizing personal issues (living and eating right whenever possible has positives). Secondly, appreciating that which you do have. Cultivating a wide support network is rewarding in and of itself.

Learning what is truly important in life is a voyage of discovery. Sounds like a bunch of claptrap sometimes, but there's some truth to it.

Take care!

 

[soupdragon69]

Colt I cant even be bothered to answer you any more than I just have now other than life is too short to be too smart for your own good eh? ;-)

 

[Colt]

Rosie, you don't get crohn's disease because of your own actions. It's not your fault just because you didn't go to the hospital earlier. It's a genetic disease. You were born with it and it was going to become active eventually.

IBD (Inflammatory Bowel Disease) is the category of diseases that crohn's disease belongs to. It's not something different. Colitis (Inflammation of the colon) is a subset of crohn's. Crohn's colitis would mean that your crohn's disease is affecting your colon.

When people talk about lowering stress and eating well they don't mean that you're causing the disease. Think of having a cut in your mouth. On it's own it's annoying but tolerable. If you toss a handful of salt in your mouth it becomes extremely painful. It's like that with crohn's. The inflamed intestines are one thing, but if you chow down on a coconut all that fiber is going to run the risk of clogging you up and inflamed tissue is very tender and it's going to scratch that tissue really bad causing a lot of pain.

Stress increases your immune response. In crohn's disease increasing your immune response means increasing the crohn's severity. That's why many of us are on immune system weakeners.

 

[teeny5]

Rosie, you don't get crohn's disease because of your own actions. It's not your fault just because you didn't go to the hospital earlier. It's a genetic disease. You were born with it and it was going to become active eventually.

IBD (Inflammatory Bowel Disease) is the category of diseases that crohn's disease belongs to. It's not something different. Colitis (Inflammation of the colon) is a subset of crohn's. Crohn's colitis would mean that your crohn's disease is affecting your colon.

When people talk about lowering stress and eating well they don't mean that you're causing the disease. Think of having a cut in your mouth. On it's own it's annoying but tolerable. If you toss a handful of salt in your mouth it becomes extremely painful. It's like that with crohn's. The inflamed intestines are one thing, but if you chow down on a coconut all that fiber is going to run the risk of clogging you up and inflamed tissue is very tender and it's going to scratch that tissue really bad causing a lot of pain.

Stress increases your immune response. In crohn's disease increasing your immune response means increasing the crohn's severity. That's why many of us are on immune system weakeners.

Well put Colt.