Not so sure now.

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rosie

rosie

Joined
Sep 14, 2008
Messages
111
not so sure now.

Been dying to try and find chrons sufferers ever since being diagnosed but now im reading posts of what i have im not so sure. i was really ill b4 i got diagnosed spent 2 weeks in hospital. Got given loads of tablets and sent on my way thinkin that once off steroids that its just fine. feeling lucky that its only chrons disease iv got and not something life threatening. Feeling im being a little naieve??
 
why are you unsure? Ask all the questions you want here. We will all try to help you. Many here know a lot about the disease and we all try to share our experiences too.

Welcome!
 
Well... here's that funny thing about Crohn's Disease (or not so funny) everybody's disease is different. Some people have it very severely, some people don't have very may flares at all and when they do, they are quite mild.

Taking medicine will help with flares, but they do not cure you. Basically with this disease you are always on watch. The ultimate goal is to get into a state of remission. Once you are in remission, there's no telling how long it will last- could be a week, could be a month, could be 10 years, no one knows. So when you get another flare, you have to get back on the meds or change up your regimen.

The best ways to maintain remission are through stress-control, low residue diets, vitamins, and maintenance drugs. Sometimes complications can occur such as obstructions or strictures... generally these require surgery to remove part of your intestines. If you end up having to have too much of your intestines removed, you will have to have a colostomy bag. I don't want to scare you, but I just want to stress the fact that when you are flaring, you NEED to take care of it ASAP.


I hope this helps.
 
Because i thought i was all fixed and stuff with the tablets. Not sure i want to know or wether i want to pretend i dont have it. Just wanted to talk to someone with chrons too to say its all good nothing to worry bout. feeling that once im off steroids that im going to be unwell somedays? or be back in hospital? Quite glad iv found this site then. Thank you for the welcome. nice to meet you.
 
I think you can't forget that you have the disease...like katiesue said you have to take care of yourself to try to prevent the need for surgery. The more inflammation in your intestines the more scaring you could have and that can lead to strictures and surgery. Best advice I can give is avoid the foods that cause trouble and try to stay as healthy as possible. Keep your stress down and try to get on with your life. I know when I am sick that is all I can think about, but when I feel better I try my hardest to not let the disease take over my life.
 
i know im flared up now. But how do i know when im flaring then? or when to ring in?? how do ya look after yourself on it? flaring? whats flaring? mind u iv never been in remission yet. i suffered with a flare for a year b4 i got diagnosed but the pain got to much. and now i feel fine on the tablets, so i gather a flare up then is how i was?? i still get tummy aches but noty the cramps which i havent been telling the doctor about any relevance? but its a wierd tight bloated belly ache dont think nothing of it. just dont know id rather just ignore ya see. never going back to hosp, reason why i left it so long. Then i was dragged there.
 
oh great. so you can prevent surgery. ( not sure i quite expected surgery being in the equation tho) yes iv completely stopped drinking fizzy things and coleslaw my 2 fave things. :'( its stupidly unfair!!!! how long does it take to get into a remission??? and what is remission?? just no belly aches and one toilet trip a day?
 
Well just forgetting about Crohn's Disease will land you in the hospital and you will end up with a colostomy bag in the future. You have to make sure you watch what you are feeling. You have to understand that your doctor can't help you if he doesn't know what you're feeling, and hiding feelings or pains or any effects that you are having will just prolong everything. When you have Crohn's Disease (or any disease really) you have to step up and assume a higher responsibility for your body. Before I was diagnosed I was a happy 18 yr old girl and as long as I had a shower, clean clothes, and some form of food, I was happy and healthy. Now I have to worry about diet and stress levels. I have to watch what I'm feeling and what foods cause pain. Its just a different level of responsibility.
 
oh right i see. yes me too i was a happy mother of 3. I dont have the time to be ill or take time out for me. But with what u said there i get it.. we shouldnt have belly aches and i must stop the aches right. foods causes belly aches and ur saying stress too?? do we just take paracetamols for the tummy ache and chill out. the nurse keeps saying tho any tummy aches ring in but dont want to be ringing in every 2 minutes.
 
For some remission is the complete absence of all symptoms. Others their symptoms just get so mild that they are easier to live with. I thought I was doomed to be in pain forever until they changed my meds. Now I have had my symptoms go away. Though I still avoid greasy fried foods, beef, soda, and caffeine. Don't want to make my intestines angry. Remission is unpredictable and could take a while to get to. No one knows how long it will last when you are there either. I think for the doctors remission is counted as when your inflammation has gone down and when most or all symptoms have gone away.

Some may need surgery no matter what they do, others may never need surgery. I just believe that if taking care of yourself can help avoid it then better safe than sorry.

I would tell your doctor everything that is happening to you. You never know what could clue them into something. There are many things that can happen outside the intestines with this disease. I have had everything from hives, to dry skin, to my hair thinning out, night sweats, and body aches. It could be meds it could be the disease. In any case I tell my doc everything.
 
I don't call the doc unless I get different aches or if they get worse. Yes stress causes distress on the digestive track in anyone so for us it can cause a lot of chaos.
 
ahh hives, is that cos of chrones?? i thought i was going thru my menopause early. its all just chrones???!! uv helped me out wonders there!!! i also have hives i keep having night sweats and hot flushes. thought it was because of my weight increase. Right think i will start being honest bout it then. iv only mild symptoms now so maybe im in the beginning of remissioning. and flare ups then are when were in pain again?? how can ya be in pain or a flare on the tablets isnt that the point on being on the tablets? :S sigh.....
 
im a mother of 3 young ones my life is a complete maniac ball of stress!! really cant afford this haha.. can we still have kids on chrons??
 
i started thread about having children, its called "can i try for another baby? there is somegod answers in there. regards sharon x
 
Crohn's disease will not affect your fertility but to be frank, for most people with crohn's it's difficult to be healthy enough to care properly for one child. We have a lot of people here who talk very often about how it's an overwhelming situation. 4+ seems like an incredible challenge. But, if you're lucky and your crohn's is really mild for a long time maybe it could work. If you've been hospitalized like that though, I have my doubts about your crohn's being as mild as you would like to think. But, it really all depends on if you think the additional strain of child care is worth another child.

Medication isn't a cure. Actually, from the experience of people on this forum pretty much all of the medications available seem to have a finite amount of time that they work. We've had a lot of people brag about feeling all better only to come back posting 3 months later about how whatever drug they've been on is suddenly not working anymore.

Crohn's disease is unpredictable really. It comes and goes as it pleases and that makes it difficult to even know if the medication is doing anything. There's no way to know how you would be feeling at the moment without the medication. Also the medication is only going to reduce the crohn's disease to a point. Your current medication may be strong enough to manage your current severity of crohn's disease. Come next week your crohn's disease could be twice as strong while the medication isn't any stronger than it was this week.
 
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oh dear. It really is quite bad chrons then.. think i have been a little bit naeive. rigth to think that chrons is gonna suck!!?? thanks for posting back to me!! you are most helpful!!!!!!!! didnt think id like hearing bout chrons with a few of ppls posts. was right. although i dont like what am hearing and that i may actually be unwell feeling very stupid for being so naieve! Im glad that it wont affect my fertility was a big worry. wanting to try for another in a year or two. I dont like the way that its so unpredictable either! alot to take in today, more today than in the 3 weeks of being diagnosed!
 
Please don't feel stupid.

It's quite normal to take time to "digest" all the information. It can be all very confusing. It's a complicated disease that stumps even the experts.
 
Thank you. Ur all so nice in here and all so very helpful!! Glad that i dont feel on my own no more!
 
GoJohnnyGo said:
Please don't feel stupid.

It's quite normal to take time to "digest" all the information. It can be all very confusing. It's a complicated disease that stumps even the experts.
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No kidding. There's practically been a bar room brawl going on among scientists for decades on what's causing it and even what the mechanism is that results in the damage. Treatments are all just happy accidents where the drug was designed for something else like rheumatoid arthritis and woohoo it works for crohn's too. I'd be overjoyed to hear someone actually working on a drug specifically for crohn's disease.
 
They should cos i really dont want this stupid thing no more!!!!!!!!! CANT BELIVE ITS UNCUREABLE!! thought that was just aids and cancer!!!
 
I was floored when I found out too. Couldn't believe I had an incurable disease. I had been so healthy all my life. Just learn as much as you can and listen to your body. Often the docs don't have all the answers so the more you know can only help.
 
oh no!! :( do u have chrons bad then?? thats how im thinking right now. i dont want it dont feel ill havent got it :s im just in a positive denial at the minute but this si just steroids i think. 2 surgeries maybe a 3rd :'( hoping to be in remission. good grief pen yes iv had some great support off here and learnt alot more then i have in the 3 weeks of knowing bout chrons. Yes grimsby is Uk.
 
rosie said:
They should cos i really dont want this stupid thing no more!!!!!!!!! CANT BELIVE ITS UNCUREABLE!! thought that was just aids and cancer!!!
Click to expand...
are you for real? cancer is cureable, if caught early. and hiv/aids like crohns is treatable with medication, we can live a normal life. regards sharon x
 
merrywidow said:
are you for real? cancer is cureable, if caught early. and hiv/aids like crohns is treatable with medication, we can live a normal life. regards sharon x
Click to expand...

I was under the impression that once HIV had progressed to AIDS, you were on borrowed time.
 
as with crohns you can live many years, and many of them will be "normal". many years ago the story featured in eastenders mark had it and was normal for a long time. i dont know what happened to him though as i gave up watching the soap.
i did have a friend who had HIV and only told a selected few people about his illness, for various reasons, he didnt die of aids he died in a car crash. regardssharon x
 
Current anti-viral drugs have turned HIV/AIDs into nothing special in the disease world. The problem is those drugs cost insane amounts and the 90% of people with HIV/AIDS living in poor countries are without help.

Cancer is basically cured except for a few forms. It's not 100% but most forms of cancers are hard to call fatal diseases anymore. You have to really let it go for a long time or have some complication to die from it. The benefits of unending research money are great. The only sad thing is that it's been at the expense of all other forms of disease research for the last 20 years. Breast cancer for example just doesn't need any more money. People should be shifting that funding towards things like ALS and muscular dystrophy that remain definitely fatal problems coming after years of terrible suffering.

There are thousands of incurable diseases though. They just aren't very famous for some reason. They're largely autoimmune diseases and genetic defects. Here's a small list to get you started: http://en.wikipedia.org/wiki/List_of_incurable_diseases
 
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I'd like to figure out a way to cure Parkinson's Disease... for my dad.

If I could, I'd forfeit a cure for Crohn's in lieu of one for Parkinson's
 
Aww thanks... it was just so weird... I was diagnosed with Crohn's in Oct 2006 and he was diagnosed with Parkinsons in July 2007... a bad two years.
 
He was on a patch-type drug, but they didn't work and he also tried some RLS drugs (I think Lexapro is one), but now he's back on the Levodopa. I know a crucial part or his treatment includes antidepressants. Mostly because he gets so down on himself about not being able to do everything he once could. But the antidepressants have helped a lot. I just get nervous when the time comes that he can't care for himself, and when he can't drive himself to work. His reaction times are already impaired a bit... so I'm afraid he'll get into wrecks or something.

Another key to his treatment is exercise. He HAS to stay in motion, they say if you don't use it, you lose it... its true in his case.
 
not absoultuty sure, but i thhink the "cure" is linked to stem cells of umbilical cord. i think they tranfer the stam cells into the patient. rrgards sharon x
 
There have been leaps and bounds in research, but there isn't a real "cure" yet for cancer. It may be TREATABLE, but that doesn't mean it's cured. (believe me, we've spent a lot of time recently with my mom's oncologist, we've gotten this lecture a few times). One thing to remember though, people aren't statistics, and just because there may be a bad prognosis, it doesn't mean that you wont do better than that.
 

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