Recently diagnosed with Crohn's disease

Hi Usher! Sorry you are suffering right now. Are you on anyedications for your CD? I don't know what the medical system is like in Germany, so I can't comment on whether or not you should leave, but I do think you should start some medication and see how that helps. Many people will start with less powerful meds like 6mp or Pentasa, but it also becoming more common to start with the big gun biologics like Humira or Remicade. All things to discuss wih your dr. Good luck!

Usher

Yes your disease can get better and it can get worse. You are in a flare. The flare could be short in duration or last years. My son has been in a flare for 3.5 years. He s 21 years old and trying to go to college but its a continual struggle. He can't carry a full load and he can't work.

Before this his flares were much more manageable and farther apart in duration. Everyone's disease is different. You could get this flare in control and be fine.

Good luck and keep us posted.

Welcome to Healing Well, Usher! I'm sorry about your diagnosis but am glad you found us. Many, many people with proper medication can lead active normal lives with little problems from Crohn's other than an occasional flare-up. Others unfortunately have a more aggressive form of the disease and seem to have more frequent and severe issues. The location of your CD is where most CD is found.

What medications did the doctor give to you? Some might disagree with me, but I think it is important to take medications to keep the inflammation under control. I have had CD for over 30 years. During that time I moved with my husband and lived in many places in the US and for three years in Germany. We also traveled extensively here in the US and Europe. My CD has not kept me from doing much. However, I have relatively mild CD.

Yes, it is your decision about whether to return to your home country. At this point, since the diagnosis is so new and you are somewhat shocked by the news, I recommend not making any sudden, rash decisions. You might want to see how you respond to the medications and how you feel.

Also, I need you to realize that we have many members here. Many that post here are newly diagnosed or have more severe forms of the disease that cause the most problems. Please do not think you will get all the problems you might read about on these pages. Please feel free to ask any questions that you have.

Hello Ideas,

I have a question. Is diarrhea/vomiting/nausea present only during a flare up or is it present all the time. Does it depend on an individual person? My diarrhea stopped, but I do have some nausea now and then. I'm perfectly fine one day and after two days I again have some nausea, which makes me sick. I'm trying to find out which food causes nausea.

Hello Usher

I wanted to tell you that I completely understand how you feel right now. I was diagnosed with Crohn's about two years ago and I also am living away from family. Even though I do live close to my brother, the rest of my family is in a different country, so I do understand what you are going through. Where do you live and where are you originally from?

Crohn's has been a very hard thing for me to deal with, mostly like you said, because I don't have anyone here. My parents do come down for a few months, so it makes it a whole lot easier, but the other months are pure hell. It's a really difficult disease to deal with, so doing it by yourself is even harder! I have suffered from depression in these past two years and it's been awful, sometimes even worst than the disease itself. But at the end of the time, giving up is useless and we don't really have a choice and need to keep going!

Feel free to message me if you need someone to talk to, I so understand your pain! Also, like others have said, now is not a good time to make a decision. I would also wait until you get your disease under control and see from there :) Good luck and keep your head up high!!

While my family support has been so necessary, I am uninsured and living in the US and facing down tens of thousands of dollars of medical bills, not to mention what is going to come up in a few months when I have a second surgery. I would not be surprised if by the end of it all i'm up near 100K. Follow up care, medications.... ay yi yi.... I WISH I lived in a country like Germany who had a decent healthcare program. I think I'd consider establishing a support system there, or invest money in bringing my family to me in a time of particular hardship. It'd be much cheaper that way!

Hello Ides,

Thanks for the information on GERD. I was diagnosed with acid reflux as well. I got two more complimentary diseases when I was diagnosed. Fissure in rectum and a small inflammation in the colon. I don't have a sour taste in my mouth or burning sensation behind the breastbone. I think I have slight acid reflux, since I have a pressure feeling in the chest area (heat functioning is fine. ECG has been done).

I do keep a food log. I have eliminated some food. I think, my medicines are giving some side effects. I get chills at night, slight fever. I'm completely fine during the day. My nausea has stopped after I cut down on coffee. But, I have slight insomnia. I get up a few times at night and start thinking of going back to my home country. I don't have much diarrhea or abdominal cramps.

I ate a lot of vegetable and fresh food in my home country. But, in Germany I ate a lot of processed food. I'm trying to change my diet. I'll keep you posted with the diet results.

Hi begxforxmercy,

Thanks for your reply. I'm already on medication. I'm taking Mesalamine 1.5g (2 times) and Budesonide 9mg (1 time) a day along with iron supplement tablets.

I think the diet plays an important role in having CD in remission. I keep a food log and I don't eat after 20:00. I allow 2-3 hours after dinner before I go to bed. I have eliminated many food from my diet. I get bloated after having a pizza that has been heated in the microwave oven. That's why I don't use the microwave oven and pizza anymore. I have been eating rice all my life, since I'm a an Asian and vegetarian. I'm not gluten intolerant. However, I get somewhat bloated, if I drink milk. I have almost eliminated it long back. But you also have to keep in mind that the medication gives side effects. In the end you'll notice that It was a waste of time eliminating all the food not knowing that the side effects of your medication were a crook. I unnecessarily eliminated so many good food. I'm back eating them again. I don't have those old problems anymore. I'm going to my doctor next week to talk about the side effects. I have sometimes severe chills, fever, nausea (for a short time at night) and the next day I'm completely fine.

I was also told by my doctor to keep an eye on my nutrition intake. It's because the ability of the intestine to absorb nutrition is reduced considerably. You could instead eat a little when you are not hungry.

I'm not a smoker. I drink alcohol occasionally. I have actually had GI bleeding (3 times in 2 years) after drinking alcohol. After drinking I went to the toilet and passed a lot of blood. I said that to my doctor, but he didn't listen to me, since occasional drinking doesn't cause significant damage. I'm not even going to touch alcohol in my life.

At the moment I'm doing well. I'll try to stick on to my healthy diet and stay in remission.

Post Edited (Usher) : 10/17/2013 1:53:17 PM (GMT-6)

GERD is pretty common, especially when you're taking steroids. You should be taking a proton pump inhibitor like prevacid, or other GERD meds like prilosec. You can follow a GERD-type diet plan (avoiding coffee, chocolate, wine, tomatoes, citrus, small meals, elevate your head when sleeping) to control the symptoms.

Hi,

I started off as a mild case and I go back and forth. Sometimes I get worse and sometimes I feel better. my younger brother was a severe case and he was in the hospital for 6 months straight and he wasn't aloud to get or drink anything (and I mean nothing at all) for at least 4 of those. Now 2 years later his severe case has turn into him feeling great and hardly ever having problems. You would never know he had anything wrong. I on the other had had a mild case and I feel sick or flu like everyday. So every case is different. I agree that you should take a little time to take in everything and see how you react to the medication they put you on.

You could also try small changes in your diet (I'm not going to lie, I'm a sucker when it comes to food even though I'm 105 lbs.) I didn't change mine much but I noticed that certain things would give me pains or upset my stomach so I just cut those out or lessen the amounts like coffee. I still didn't coffee, but it's not everyday. It's like a treat every once in a while.