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

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New Member

Date Joined Jun 2009
Total Posts : 1
   Posted 6/27/2009 7:54 AM (GMT -6)   

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:


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)

Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 6/27/2009 8:11 AM (GMT -6)   
Hux, diet is a very individiual thing with every Crohnie. Different things effect each person differently. Experiment on your own to see what bothers you and what doesn't. It can be frustrating because when your in a flair it can seem like everything bothers your gut. I checked out your art work. Wow, your sculpting is awesome. I'd love to have the pharoah for myself. Very cool. Best wishes, Tony
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 10 months ago. Was on Remicade but just recently switched to Humira because remicade stopped working, B-12 injections and iron.
God Bless. Tony

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/27/2009 8:26 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.

Gail *Nanners*

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 6/27/2009 8:27 AM (GMT -6)   
Actually, like yellowfin said, it is all individual. You'll be stuck like the rest of us in a perpetual trial and error method of finding out what you can and cannot eat.
Many of us have found it effective to cut certain things out of our diet like sugar e.g. sucrose but not honey, gluten, high lactose dairy (milk but some of us build tolerance or already tolerate certain kinds of yogurt), and junky foods in general like those you pick up off the shelf. Preservatives and additives just aren't worth it...I follow the SCD as sort of loose guidelines myself and have noticed a tremendous difference. You might check it out either by its website and/or book.

Also, I would really recommend seeing an actual GI and getting more definitive testing done. I went to the ER for similar reasons and was misdiagnosed with IBS, sent home on the same diet, and prescribed medicine that ended up with difficulty breathing and hallucinations.

As for how to test your food? Keep a food diary or at least try (I forget a lot of days) and write down how you feel at different periods. Some foods you will know pretty soon after. Since you're on liquids right now it could be a good opportunity to start that since you will be gradually adding different foods to your diet. It's hard at first, but you do get the hang of it.

And like Nanners said, probiotics are a good way to go.

Nice art, by the way. The sculpting reminds me a little bit of Froud..not sure why. Maybe the lines in the Pharaoh's face. Froud always had a way of putting them in his subjects as well that added a lot of depth and character and I think you've definitely accomplished that as well.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."

Regular Member

Date Joined Jun 2009
Total Posts : 86
   Posted 6/27/2009 10:04 AM (GMT -6)   
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)
diagnosed with crohn's 6-15-09 at age 23.

asacol: 400mg. 3 3X a day
prednisone: 10mg. 3 in the morning

multivitamin, cal/mag, probiotic, digestive enzymes, rice protein. looking into l-glutamine next

Regular Member

Date Joined Jun 2009
Total Posts : 86
   Posted 6/27/2009 10:19 AM (GMT -6)   
i just got a for sure answer a week ago myself. i have bin having a flair for 3 months'ish. remember your never by yourself. i spend so much time on this site just learning and asking Q's. deff go see a GI, the hospital and my doc both told me i had a stomach virus.... i started some meds a week ago and for the first time in 3 months i was able to do something social. i went to a party and saw some fire works. no worries about curling up into a ball and dieing!!!!

anyways im babbling. i hope for you its not crohn's but if it is its now the end of the world. the meds seam to help me so far. also someone on here gave me a guideline "if you could mush it with a spoon, you should be able to digest it" i found not eating starches and protein together help alot.

best of luck bud.

diagnosed with crohn's 6-15-09 at age 23.

asacol: 400mg. 3 3X a day
prednisone: 10mg. 3 in the morning

multivitamin, cal/mag, probiotic, digestive enzymes, rice protein. looking into l-glutamine next

Veteran Member

Date Joined May 2003
Total Posts : 1671
   Posted 6/27/2009 12:06 PM (GMT -6)   
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.

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 6/27/2009 8:41 PM (GMT -6)   

I just wanted to drop you a line... I read your post, and I know how isolated this disease can make you feel.
I'm in Fort Collins, but if you ever want to grab a cup of coffee or something I'm sure we could meet somewhere in between.
my email is my handle, patientspiders, at yahoo.com. you can probably use it to find my myspace page too.

I wish I had time to type more, but I wanted you to know that I'm here. I know it's a whirlwind right now, but you'll get through it. This place is priceless, and the people are wonderful, so hang in there. I know you feel like it, but you're not alone.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!

Regular Member

Date Joined May 2009
Total Posts : 250
   Posted 6/28/2009 12:37 PM (GMT -6)   
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.

Just finished prednisone taper of 40mg in 6 weeks.  We'll see if it works.

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 6/28/2009 2:20 PM (GMT -6)   
Zofran is supposed to be good stuff, not supposed to make you drowsy, and from your post I see that it is now available in generic. It used to not be, and it was very expensive. I am going to try it out, phenergen which is similiar to zofran, will put you to sleep, and is what I have been using.

Welcome to the forums, I hope you find this to be a great place, and good job with your post, it is so hard telling a group of strangers your most intimate worries, fears, and outlook on life, I think you did great.

CD dx @ 13 (1987)
Prednisone 20mg every other day
Phenergen PRN
Zantac 150 - Twice Day
Pain Meds

Regular Member

Date Joined Feb 2006
Total Posts : 53
   Posted 6/28/2009 2:42 PM (GMT -6)   


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

Imuran 125mg, remicade every 6 weeks, folic acid,

New Member

Date Joined Jun 2009
Total Posts : 3
   Posted 6/28/2009 4:49 PM (GMT -6)   
smhair  Hi Hux, I also just joined. I have had crohns for 18 years now it took doctors 7 long years to diagnose my problem. Until recently mine has been in my ilium, but as of 1 month ago mine has moved into the last few feet of my rectum. CT scan also showed that my intestinal tract was swollen shut, put me on a crap load of steroids and antibiotics and of coarse a liquid diet. Much pain and swelling in my gut. Even though I have lived with crohns a long time this is probably the worst I have felt from it. Mostly I have lived as though I didnt have a problem I refused all meds and lived as normal as possible, but now I know its bigger than even I can cover up. Dont let it takeover your every thought because it causes stress and stress causes symptoms to be worse. Food you will have to figure out what bothers you sometimes I can eat and drink anything and other times I cant stan even the simplest things. Its a roll of the dice, but you can get through it and live a normal life if you focus on whats important to you. Dont let it consume you or take over your life because it can and will if you let it. Keep on with the art and concentrate on the positive.

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 6/28/2009 5:29 PM (GMT -6)   
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
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.

Regular Member

Date Joined Aug 2008
Total Posts : 467
   Posted 6/28/2009 8:14 PM (GMT -6)   
Wow Hux, its a pleasure to meet you and see your great work.
  Never go faster than your guardian angel can fly! I get by with a lotta help from my friends!Be Patient And Tough, Someday This Pain Will Be Useful To You.     
 Crohn's DG 2003 , symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Followed SCD Strictly 2003-06, then modified by adding new things 10-12 days apart to avoid delayed reactions in the form of arthritis symptoms. Scope on 2-5-09 was great! Doc says no symptoms,No scope for 10 years!!!

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 6/29/2009 6:50 PM (GMT -6)   
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!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

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