I was diagnosed with Crohn's Disease yesterday - some brief questions (also sharing some of my art)

Hi,

I'm a 20 year old male from Denver, CO. For three days I suffered from debilitating abdominal pain and intense diarrhea as well as vomiting. I went to the ER yesterday and got a CAT scan and was told my Ileum was remarkably swollen. They're currently running stool samples and blood tests and will let me know on Monday (in the event that it's simply an infection), but Chrohn's affected my aunt a few months ago and she had a major portion of her intestines removed. All of my symptoms thus far fit the description nearly exactly so I'm relatively certain of the diagnosis.

It's been very hard for me to cope so far. The nausea and pain comes and goes but it is really having a noticeable effect on my life. The doctor has me on a diet of clear liquids and easily digestible foods like broth and soft popsicles. I'm told I can move to crackers and bread eventually and later on to eggs and such. I hear a lot of conflicting stories when it comes to diet - people simultaneously suggest and warn about food like yogurt so I'm really not sure what the most accurate information is (might ultimately boil down to each individual's personal tolerance).

I decided to join this forum and post my story because I feel very alone in this condition, few people seem to understand the severity of the problem. I try very hard to stay positive and not get too down on myself about this but when the wave of pain and sickness rolls through, it's difficult. I understand that this is a lifelong disease which can be symptomatically treated, but I feel moderately hopeless knowing there is no cure. I've been prescribed a generic 4mg Zofran anti-nausea pill which I have yet to try
As for testing which food tends to set me off, what's the best way to go about this? If I do end up eating a food which irritates me, how should I deal with the consequent nausea and/or pain? How much food is required to get a reaction?

I'm also an art student and I'd love to share some of my work with you guys, have a look at the link below:

www.flickr.com/photos/30021309@N04/

Thank you for your time and for reading my stuff, I'd really appreciate any sort of information or suggestions anyone could provide. It's only been a day but it's like a rollercoaster of pain and emotion right now.

*Please review the rules, no posts are allowed discussing mm, so I have edited your post*

Post Edited By Moderator (Nanners) : 6/27/2009 7:17:47 AM (GMT-6)

Hi Hux and welcome to Healingwell, you will find alot of wonderful folks here always trying to live with this dd (darn disease) too. I think when a person is first diagnosed it is the hardest time for most Crohnies. It takes time to find the right medication to control your disease. As for diet, you are right, it is an individual thing for most. Some have gotten success using the SCD or Maker's Diet. These are very strict diets and you must adhere to them religiously, and not all have success with them. For myself, I live on a low residue diet all the time and I happen to be in remission at the moment. But that is what my body seems to tolerate. It is an easy to chew, easy to digest type of diet. You might want to google it and get some ideas of what to eat.

Another thing I would suggest is probiotics. Many think Crohns has something to do with a imbalance of bacteria in your system. The Probiotics help to balance out the good and bad bacterias. I take a basic lactobacillus and that helps me alot. As for your nausea, I would suggest you take the Zofran. I take it myself and it works well for the nausea without making you loopy. I did unfortunately have to edit your post because it is against forum rules to discuss MM on here, I hope you will understand.

Again welcome to Healingwell and I look forward to hearing more from you. I am sure in the coming days you will have many more questions, ask away thats what we are here for. Your artwork is awesome, you are a very talented young man.  Thanks for sharing it with us.

Hugs
Gail *Nanners*

pharaoh2 do you still have this????? i am very intrested in this piece. could/would you part with it? let me know i can get you my contact info!

now i will go and read your post (im like a kid, need to look at the pics first)

Welcome, but sorry you have to be here. It was scary for me at first because of everything I read that could potentially happen to me because of CD. It helped when I was able to put things in perspective. Yes, I needed to educate myself. But I needed to remember that not everything that could happen, will happen. Reading everyone's stories here helped me to realize there are a lot of us who have it much worse, and if they can do it, so can I. I focus on today and what my symptoms are right now, and what I am going to be able to accomplish. If it's a bad day, then I hope the next one, or the next week will be better. I've had it long enough to know that my CD doesn't normally ruin my life, but it is a force to be reckoned with. This is my new normal. Currently, I'm flaring, due to an unbelievable amount of stress in my life over a long period of time. Do everything you can to reduce stress. Maybe your art, which is wonderful, congrats on all that talent...will be a stress-reducer for you. Also, because of financial problems, I am not eating as well as I used to. I wasn't "religious" about following the Maker's Diet, but I did learn a lot and was able to make better choices that seemed to help me. It's trial and error to find what foods you can tolerate, and there are a lot of differences for each of us. Keep a food journal if that's helpful. My gi explained it to me this way: if you sprain your ankle it will feel good when you rest it, but hurt when you use it. Same for the intestine. So when flaring, avoid foods that scrape or are difficult to digest. Tougher cuts of meat, fatty foods etc. Obviously fiber. Dairy is a problem for a lot of us. I used to be able to tolerate coffee, but this year I have had to cut that out entirely to avoid cramping. It makes me sad because I loved it. When I am in remission, I can tolerate almost anything. I've not had any trouble with vomiting, so I feel for you on that.

This group is awesome. There's nothing like being able to talk to others who understand. Hopefully you will also have supportive "live" people in your life. It may be up to you to educate them so they can give you the support you need. I can't even get hubby to read info on CD, so I try to make sure he has some inkling of what this is about in case I ever end up unconscious and he has to make medical decisions for me.

My 20 year old daughter just started having some symptoms and I am worrying for her. There is a genetic link so with an aunt having it, that may be yours. My daughter takes a lot of ibuprofen for chronic headaches and if no one has told you yet, nsaids are usually a no-no with CD. She also smokes and that is not good for CD either. I hear it can be helpful for ulcerative colitis though. Weird. Some can tolerate alcohol and others can't. I avoid it when flaring and use it cautiously when not.

Hang in there, and hopefully your docs will get you to a happier place than you are right now. We are here to help.

Hi HuxtibleJones!

I am also newly diagnosed so I feel your pain. Also checked out your artwork, thats pretty impressive!
I would be hesitant to accept that diagnosis after one CT scan. I have had multiple tests done (2 Cts, 2 colonoscopies, etc) and had multiple diagnosis. Its very tricky diagnosing this disease. I would get a specialist, follow through till they come up with a diagnosis. And repeat if necessary. Like shampoo right? Different drs. told me different things. From infectious colitis to UC to IBS to CD. Finally resulted with Crohns with a C diff infection. So, all those drs. were wrong. And its no wonder that none of the meds worked. Just be careful. Keep your head up it will get better.

Stef

Hi!

Sorry you are having to go through all of this. What hospital and doctor in Denver? I live in Gunnison and use the University of Colorado and Dr. Levine for my GI, and Dr. Deane for my Rheumy. Your art is awesome! You are really talented! I have used Zofran before, it does warn that it can cause a killer headache.....and trust me, it does. So the choice is feel like puking or a bad headache......Welcome

like your art man...specially "times in Japan". My best art is made in that "mode" too and I have no skills whatsoever :)


It will take you a while to figure foods and meds out so don't get frustrated and when you do..."times in Japan" is my favorite remedy :) Take care

Welcome! You are in the right place, everyone here is very helpful and caring. The people her are like my second family. Just try and stay positive and do the trial and error thing with the food and you shouldbe feeling better in no time.
Best wishes!
Wolfie