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Found out yesterday I have Crohns disease. What to do first????

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Crohn's Disease
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Posted 1/8/2010 11:37 AM (GMT 0)
I have had symptoms of Crohns disease for 5 years and my doctor/specialist couldnt find Crohns using a flex endoscopy anywhere. I found a new specialist who did a Colonoscopy yesterday and found alot of crohns disease. Finally i have been diagnosed but I dont know what happens now??
Posted 1/8/2010 11:53 AM (GMT 0)
well i am real sorry bout the crohns ..did u get put on meds were you not talked to about foods to avoid..did this doc not explain anything at all to you.......you can get plenty of input from members here ...i am glad you did find your way tp hw.....for me its a constant up n down with flares and pain..i cannot eat so many things or i pay dearly..do read thru many of the threads/posts here and it should give you an idea but of course we are not all the same ..again welcome and stay with us...lyn
Posted 1/8/2010 12:34 PM (GMT 0)
Sheep87, the first thing that you should do is breath. I am not mocking you in saying this but just saying to take a deep breath and know that everything is going to be alright. I am not going to lie to you and say that there are not going to be many challenges ahead, but if you do this with a positive attitude and don't panic you will be fine. You are very fortunate to have found this sight so early on and there are many members that will have some very insightful information and experiences to share with you. Remember that there will also be posts that you read on here of extreme cases of the Crohn's disease that may not happen to you. I wish that I had found this site at the same stage as you. Good luck and make sure to use all of the tools, information, and doctors to your advantage. Do not be afraid to ask all the questions that you have to your GI. They work for you and the more you know about your battle the better you will fight it.
Posted 1/8/2010 1:18 PM (GMT 0)
First, keep in mind that you have lived for five years with active Crohns disease -- it did not start when you were just diagnosed, but quite some time ago. Those years went by with no medical treatment for the disease, nothing to stem the inflammation and symptoms, so it can likely only get better from here. Step one is to consult with your GI on medications . . . Crohns meds are of two types, prednisone to reduce the inflammation short term and any of a wide variety of maintenance meds you will take from now on to keep it down. I would suggest some heavy research on the medications available to you. Some GIs opt for a "step up" treatment proticol where they begin with the less potent meds and move up until they find the right one for your individual case that keeps you in something approximating remission. Others prefer to start with the bigger guns up front. In the end this is your decision. One vital thing to remember about this disease is that is cannot be "cured" in the sense of taking ten days or antibiotics for an infection. Not taking maintenance meds will only allow it to work away in there, causing steady damage by constant inflammation and possible leading to more serious comlpications like structures, fistulas and surgeries. The best advice I can offer is to realize that Crohns does not have you, you have it . . . and that the huge majority of people with Crohns live normal, productive lives. It is a darn nuisance, but the disease does not have to become you.

Posted 1/8/2010 1:26 PM (GMT 0)
read posts, change diet, and reduce or eliminate lifestyle stresses.
Posted 1/8/2010 2:28 PM (GMT 0)
I just wanted to pop in and say welcome to healingwell. I'm glad you found it! As you and your doctor come up with a plan, and you have questions and/or concerns, just post, and someone inevitably will be there that can relate. I would say that you have to be more specific in what your question is though. Did your doctor tell you what their plan is? Did they give you much information about Crohn's? Have they started you on medication yet? If you need help dealing with symptoms, let us know what you're going through (and don't be afraid of being embarassed about things here as we understand) and what you need help dealing with.

I'm sorry to hear about your diagnosis, but as tsitodawg said, it's good that they did figure out what's going on with you as some people go SO very long before getting a diagnosis and know what they're up against.

Again, welcome to HW!
Posted 1/8/2010 2:30 PM (GMT 0)
I couldn't have said it any better than MikeB did.
Posted 1/8/2010 4:40 PM (GMT 0)
sorry my question wasnt clear. My specialist is seeing me next thursday to explain all to me. Im just wondering what to expect really. He couldnt say much last night as i was still sedated. Thank you everyone for making me feel welcome
Posted 1/9/2010 1:29 AM (GMT 0)
keep us posted okay...lyn
Posted 1/9/2010 3:23 AM (GMT 0)
Welcome! Your doctor will first of all most likely explain where your disease is located. Crohn's can occur anywhere in your digestive tract from mouth to anus, and the way it is treated cab depend on where it's located, since some of the medications only target certain areas. The most common diseased areas are in your terminal ileum (the last part of your small intestine) and your large intestine. He/she may recommend that you do other tests to see if there's anything else that was missed, such as barium tests and CT scans. Your doctor may decide, as was already mentioned, to start you off on a weak drug and see how you react (such as Asacol or Pentasa, which are basically like aspirin for your intestines), or put you on a steroid such as Entocort or Prednisone right away. With the steroids, it's likely that you'll be feeling a lot better really quickly.

How are you feeling now? What kind of symptoms do you have?

Good luck and let us know what the doctor says on Thursday.
Posted 1/9/2010 3:52 AM (GMT 0)
meds can help in the short term to get symptoms and the pain under control but imho, it is not the best long term solution. you have to take control of it and your life and finding this site is a big first step. since you are just diagnosed, you are a great candidate to test out your response to diet. i wish i did this first, before i tried virtually all the drugs known to man for this disease. do some research and look into both the specific carbohydrate diet and the makers diet. they have worked wonders for many here. they are very difficult to do at first though and it may take a few months to see results, but for some it takes a few days. we are all to unique and individualistic for there to be a magic bullet, be it a drug or dietary changes. i champion lifestyle and dietary changes. i cannot implore you enough to strongly look into it and give it more than its fair chance. read the posts here on it. that is a great resource. so are the individuals here.
Posted 1/9/2010 9:17 AM (GMT 0)
Thanks Valerie and Harry

At the moment I dont really have any symptoms right now other than tight or painful joints (ankles, knee's and feet). My usual symptoms are bleeding heavily when going to the toilet and then needing to go straight away again afterwards. I seem to be able to pretty much eat anything. I dont drink alcohol but can drink milk all day long. Back in 2006 I couldnt eat anything with Tomatoes in.

I think the Barium test is on the cards but I think he might leave all drugs until I have another flair up. My last one was end of November. I was suffering with Erythema Nodosum on my legs and my specialist was going to start me on a 6 week course of Cipro 500mg twice a day, but that was before the Crohns was officially diagnosed. Does anyone know anything about this drug?

My Crohns has effected the whole of my Colon and have Ileitis in the terminal Ileum.

Thank you all for your kind welcome and advise.
Posted 1/9/2010 12:53 PM (GMT 0)
Sorry to hear that you have Crohns. Crohns is not a death sentance and you can lead a normal life provided that you stick with your doctors advise.

Also remember that this forum is here to help as all of us have been where you are today and can help by answering any questions that you have.

I wish you good health.

Posted 1/9/2010 3:07 PM (GMT 0)
Hey Sheep,

First off welcome to HW. One thing that I will advise is that you take some type of maintainence meds at all time. You will need to keep the disease under control always, as you have to remember that this is a chronic and incurable bowel disease. And the best way to keep yourself healthy is one to modify your diet, and two take maintaince meds. You should ALWAYS consider them as complimentary of eachother. Diet alone (IMHO) is not enough. I learned that lesson the hard way, and wouldn't want you to suffer the mistakes I did. Because I just didn't like having to take pills at the time, I didn't. What happened is that I wound up having to have major surgery. So just remember, always take your meds. Hope the docs get you feeling better soon. But remember just because you start feeling better doesn't mean you can stop your meds, okay.

Also, as for the Cipro this is a antibiotic that is prescribed frequently for Crohns infections. I recently did a 10 day course for a small intestine bacterial overgrowth, and it knocked it right out for me. You should also look into Probiotics at your local health food store. These help to keep the bacterial levels in your intestines even. We tend to have a bacterial imbalance in our digestive tracts. I take one called Primadolphilis Reuteri by Nature's Way. You can find it in the refrigerated section at your local healthfood store. I pay about $8-$9 a month for 30 caplets, that you only take 1 a day. Also you might want to get your Vitamin D checked, as we tend to be low. Also see about getting your Vit B12 checked as many of us are low on that too.

I hope this all helps a little and again welcome to HW.

Hugs
Gail*Nanners*
Posted 1/9/2010 4:37 PM (GMT 0)
I'm going to second what Nanners said, I don't think it would be a good idea to only start medication if you flare again, because your next flare will not only likely come sooner, but possibly be more severe. The disease can continue to cause damage while you're not on medication, and I don't think you want that. You said that you don't think diet is an issue for you, I'm the same way. We seem to be in the minority here, almost everyone here is on some sort of diet. My advice to you would be perhaps not to start on one of these restrictive diets right away, but if you do notice a food that bothers you (for me, beer, popcorn and lettuce), cut it out of your diet. You can always try to reintroduce it later on. I will agree that a diet will never hurt, of course, but if you're anything like me, I love food too much to start cutting out so many things. The least restrictive Crohn's diet you could probably go on would be a low-residue diet (like Nanners is on).

Nanners also gave good advice about probiotics, I haven't started on them yet but they are supposed to help a lot. From what I've heard, a lot of people have to play around with the different types of probiotics, but once you find a good one that works for you, they are supposed to really improve things.

As for the Cipro, I am actually on it right now for 3 months in combination with Flagyl. Cipro is usually prescribed alongside Flagyl, because Cipro alone leaves you at risk for antibiotic induced c. difficile. Cipro and Flagyl have actually completely cleared up my pain surprisingly. I got really lucky because I was in the hospital with pain a few weeks ago, and then I got a urinary tract infection when I got out. I took Cipro to cure that up and noticed that my Crohn's seemed to have gotten better too. Then I stopped taking it and got really sick again a couple of days later. Guess it was a blessing in disguise, because I never would've guessed it would've helped me, both me and my doctor were talking about putting me on stronger drugs, even though all of my tests have been improving.

Have you been tested for anemia by the way? There's a good chance that either your B12 or Iron is very low, especially since you said you used to bleed quite heavily. Most of us have to take supplements or get injections of B12/Iron.
Posted 1/10/2010 1:00 AM (GMT 0)
Welcome Sheep 87, I remember when I was first dx'd about 10 years ago...it was soooo overwhelming. So many have given such good advice. I'm so with Nanners on the prevention thing...if I'd taken maintenance meds when I achieved remission, I'd probably be able to work...oh and the thing that I absolutely think helped me achieve remission the first time was suggested by my primary doc...probiotics, even in the form of acidopholus milk and yogurt...much like others have suggested...and, oh yeah, I forgot, like Crazy Harry said...lifestyle change...though stress does not cause this DD (Da**ed Disease), it does exacerbate it...hope to hear more from you...
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