Just diagnosed with crohns need help

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bobby5

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just diagnosed with crohns need help

Ive been sick for about 7 weeks now and just got out of the hospital for a week and they found out it is chronhns. They gave me some steroids through a iv while i was there now im on 100mg of predizone at home. Ive been on it a week and really dont feel any better. The doctor keeps on telling me intestines where so inflammed it will take a while. Its been a week and i really dont feel better and still have diarhiaa all through the night with stomach pain. Does it take a while to get the inflammtion down? What if the predizone doesnt work is there another medicne they can give me?
 
hello and welcome to the forum,sorry you've been having a rough time.There is lots of different treatments avaliable;it's just trial and error unfortunately as not everyone responds to the same treatment,prednisilone that your on is used regularly to calm down the inflamation,but you will probably need to stay on it for longer. Have you had a colonoscopy or small bowel x-ray to determine where in your bowel is affected? this also helps determine treatment, hope this helps and if i can be anymore help feel free to ask, keep your chin up things will get better and good luck,ryan.:voodoo:
 
thanks for the respond i really appreciate it. I had a colonscopy and they said the small intestine was all inflamed. I was passing blood before i went into the hospital that has all cleared up but im still having diarhia especially at night, will i ever get a solid stool back this is getting aggrevating?
 
there is really no such thing as normal as i said before we are all different, keep up your apppointments with your doc and get the best treatment you can,read through the forums on here and with a bit of time hopefully your disease will be brought under control.:voodoo:
 
Hi Bobby5. It seems there are no guarantee's with this disease, some drugs dont work for some people and some do. It's a bit of a lottery when and what happens.
Welcome to the circus. Hope the pred works soon.
 
Hi Bobby5,

Don't be afraid to ask questions! All of us have questions, that's why we're here.

As for a return of solid stools, that's hard to say. You might have to change your diet, or take products/treatments specifically designed for that purpose. Keep open communications with your doctors and other health care professionals.

Good luck and keep us informed of your progress.
 
Is there any meds out there that work better than predizone? I been on predizone for a week and a half and i still have stomach pain and hardcore diarhiaa. I was just wondering what other options are out there since im new to this disease.
 
hiya bobby5, i was just diagnosed 5 weeks ago, started my own thread in the "my story" part of the forum, to explain whats happening to me. im on prednisolone 20mg, omeprazole 20mg, pentasa 2g and infliximab which i start tomorrow. my doctor thinks im steroid resistant, they dont work for everybody apparently. but they do work for 8 in 10 people. id say go back to your doctor.
you dont say where you are, but if your in the uk. infliximab is available on nhs, but only to people with severe crohns or when all other drugs fail. apparently. lol
im learning quick
 
My Aunt had a terrible flare and it took 2months for the Steroids to improve because of the terrible state her bowels had gotten into.

I havnt ever been as bad as that thank goodness and the Prednisolone always seems to help me except this flare where the D just wont go away. It has never done this before and so im at the stage where im thinking that this time I may need surgery.
 
Sorry to have to say welcome to the IBD world, Bobby, but there it is. You're not alone!

Crohn's Disease is one of the autoimmune dirorders---that means your own immune system has for some as yet unknown reason decided that your intestinal lining is a foreign invader and needs to be killed. In other autoimmune disorders, the immune system attacks the joints, pancreas, eyes, skin, etc etc. You have been living with a tiger in your body, your immune system, all your life, but now the tiger has turned against its owner.

Different meds work for different folks, and everyone's disease has its own course. You are only newly diagnosed and presumably the disease is new in you, too, so anything could happen.

Some folks do go back to solid stools, some never do and consider highly successful treatment to be only 3-4 trips to the bathroom/dy. Most CD patients have periods of relative peace & quiet punctuated by flares or not-flares-but-rough-spots. This is a disease you will have for the rest of your life---there will be ups & downs.

It's rough to hear you have such a disease but it is not cancer or some other really nasty stuff, like MS or Lou Gehrig's. Crohn's is very unlikely to kill you. It does make you adopt lifestyle changes.

Prednisone and other steroids are commonly given to the newly diagnosed because their intestines are a mess at the time of diagnosis. They are really an emergency medication, to calm things down, and then you will be started on a long term med. Finding the medication, and the dose of it, that works for your disease will be trial and error.

When you do start on whatever it is, do not be like a lot of people and once you have started to feel better, quit taking it. This is not a disease where that works. The medicine that works for you is likely to be either a topical anti-inflammatory (asacol, pentasa, etc) or an immunosuppressant (such as azathioprine), or both, and they have to be taken every day, always. There is no cure---it is not like having strep throat and taking an antibiotic for ten days, which kills the bacteria and then you are cured.

There is also no moral failing in taking medication every day. There are a lot of newly diagnosed people who want to "get off drugs" and they stop taking their pentasa or whatever. Pentasa, asacol, and other CD meds are not "drugs" like morphine is a drug. If you wind up taking one of the topical anti-inflammatories, it works by releasing its little tiny beads of what is basically aspirin, at the right spot in your intestines. Because your intestines move stuff downstream all day, every day, you have to keep re-applying the anti-inflammatory (It's like poison ivy cream--you have to keep putting it on when it wears off or you will be itching again). You have to be compliant and take your meds as directed, every day, or your immune system will go right back to its new favorite hobby, which is ripping up your guts.

You've only been on the steroids less than 2 weeks so you can't expect wonders quite yet. You need to read up on prednisone & the rest of them. They suppress your immune system. If you are taking a high dose, you can catch flu & things that are going around more easily. Keep your hands clean, etc. Cover cuts with a bandaid after washing them well. Stay out of crowds and nursery schools.

When you do start going off them, make very sure you"taper" the dose down very, very gradually. The high dose of steroid you are getting in the pill makes your adrenal glands stop making your own natural cortisol. You have to let your adrenals know slowly and gently that they need to get back to work. Don't do a "taper" where it's half dose for three days, half that the next 2 days, half that the next & then quit. Make it last much longer and make the increments by which you reduce the dose much smaller. If you have been on a high dose, make the taper last 3 weeks! (Write on a card you tape to the inside of the cabinet door how much to take, and how many times, each day, and check them off as you take them)

Steroids will cause you to retain fluids---so your face will get puffy and a lady will get a beard (shave; it's the easiest way to deal with it). They suck the calcium right out of your bones, so you should be taking Calcium Citrate with magnesium to help replace what you are losing. Take a multvitamin that has boron and silica in it--those are used to make bone. You need to replace the bone your body is losing to the steroid use. (Vitamins with names like "Mature Multi," for older folks, are likely to have the boron & silica -- older people have the osteoporosis problem too). If you are in the States you can find both of these in Sam's Club or the supermarket.

Stay away from salty foods, like chips & such. Steroids also increase your appetite and just about everybody gains weight, some folks quite a lot. You feel like eating everything that won't bite you back! That's great if you have been underweight because of sickness, but if you weren't, you are going to have to drop the extra later on. Make it easy for yourself by not eating junk. It is very hard to stop eating when you are on steroids! It's summer; stock up on fresh fruits if your insides can take them.

If your insides are sore & need gentle foods, go with things that don't have a lot of roughage, or have had the rough cooked out of them--canned peaches, pears, etc are good. The BRAT diet is too---that's bananas, rice, applesauce and toast. You need protein to help heal from inflammation--that is chicken breasts, fish, roast beef, etc. Eggs too. Stay off the beans if they have skins, until your insides get a rest.

If you have been bleeding, you need iron---in beef of course but also in carrots. You can cook them to softness and still get your iron.

I do hope you are doing better soon! You are not alone--there are a lot of us Crohnies around!
 

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