diagnosed w. Crohn's today

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confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 12/30/2008 8:29 PM (GMT -7)   
Hello everyone.

I knew the past few months something was wrong with me. I would get diarrhea about 3 to 4 times every day. Sometimes I had chills and fever with it. I thought it was just the flu or maybe irritable bowel syndrome. I thought I was lactose intolerant as well. Well today I had a colonoscopy done, and my doctor diagnosed me with Crohn's. He said I probably had it for a few years. I'm supposed to talk to a specialist on Friday to discuss medications. I'm really scared. I also am being treated for an anxiety disorder. Do I have to change my whole diet? I love Diet Coke and Diet Pepsi. I love Starbucks. I need caffeine to stay awake to study because I'm in professional school. Do I have to eliminate all types of caffeine? What about alcohol? I'm scared to take the medicines too. I'm scared about their side effects. I also hope there isn't a huge risk of developing colon cancer. If anyone can answer some or all of my questions I'd appreciate it. I know I'll get the answers on Friday but I was wondering if I could get some before then. Thank you!

Post Edited (confusedgirl22) : 12/30/2008 8:32:30 PM (GMT-7)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/30/2008 9:03 PM (GMT -7)   
First of all, breathe! Yes, you will have to eliminate many things from your diet to help keep symptoms at bay. Caffeinated, sugary drinks are not good for your system at all. I used to think I couldn't get through the day without my normal three or four coffees and or espresso and the additional sodas, but here I am even more productive than I was before. The bottom line is that they are not good for you regardless of whether or not you have Crohn's, and getting them out of your system is a step in the right direction.
As for the side effects, don't worry too much. You will encounter some, but the important thing is to keep a close watch on the effects your medication/s have on you and speak with your doctor when there is a genuine concern for your health and safety. I have been on quite a few, and while there some times I was displeased with some of the side effects, the benefits of the medicine itself far outweighed that.
And yes, there is an increased risk of developing colon cancer but that increase does not equate to a guarantee. All you need to worry about is getting routine colonoscopies done to monitor what is going on inside your body to prevent anything serious from developing.

I know it's scary, and there will be times where you want to give up believe me, but it's not the end of the world. Keep posting and know that rants and raves are always welcome. This is a great place to find support, advice, and general information so I hope you keep posting or reading at least!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 12/31/2008 2:40 AM (GMT -7)   
was this diagnosis done by a patholigic exam of biopsies taken during the colonoscopy? or by the dr looking and saying you have crohn's.? dont sweat the small stuff. take things as they come, dont worry about stuff that has not come to pass yet. diet alone has not really much to do with the disease process. yes, some are bothered by certain things that do not bother others. a healthfull diet is always best whether sick or not. as long as you practice moderation you should be fine. if something really bothers you everytime you eat or drink it, try cutting it out for a couple weeks to see. try keeping a small food diary for a while so you can keep track . the medications are not that horrible. just like food, some are bothered by medications that others are not. most adverse affects go away once your done taking the medication. these are all questions you should ask your dr. write them down, take someone with you to your appointment and dont leave untll you have been clearly told what your treatment options are. its a bit overwhelming at first, but you will get used to it in time.. good luck.
randynoguts 



     http://www.geocities.com/randynogutsweb/


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/31/2008 3:02 AM (GMT -7)   
Hi and Welcome. Another thing you might want to think about is a vitamin alot of us have low B-12 and take a shot once a month. There is lots of help and support here. I know it is scary at first and takes some time to adjust some people have mid ,moderate or severe crohn's so we are not all the same here but being aware of some problems helps us know what might be going on with us. Did your Dr, say if you have mild ? I stay off pop most of the time but do drink perked coffee .I also follow low resiue diet my crohn's was diagnosed as severe. Keep in touch and let us know how things are going. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/31/2008 5:04 AM (GMT -7)   
I drink 2-3 cups of coffee, if I drink anymore i get the "D".
Also Cafe Mochas hit me really hard and I don't drink those anymore.
I used to drink soda everyday, now I may have soda once a month.
Crohns isn't a death sentance. you just need to work around it and with an occasional flare. You'll be fine!! Take it one day at a time.

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 12/31/2008 5:46 AM (GMT -7)   
Alcohol? Definite no-no... Not only is it poison for ordinary people, but it's even worse for people who have Crohn's disease. Besides, if you're in professional school (err... is that college? Or graduate school??? A vocational school of some kind???) you don't need to drink alcohol, anyway... Going to class inebriated does not make a good impression on the professors... :P

As for changing your diet... you're going to have to go through a long trial-and-error method... start keeping a food diary, so you can figure out which foods bother you... And if you find a food consistently bothers you, well... whether its your favorite or not, it'll have to be eliminated from your diet if you want to stop suffering...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 12/31/2008 6:08 AM (GMT -7)   
Hi. Thank you all for your responses.

Professional school is doctorate school. I'm in optometry school. I want to be an eye doctor.

My doctor diagnosed me with Crohn's just by looking at the pictures from the colonoscopy. They also took some tissue samples for the biopsy. I should know the results soon. I should also know if it's mild, moderate, or severe on Friday.

I usually just drink 2-3 drinks every two weeks when I'm done with exams. We have exams every Monday.

Thank you for the advice. I will start to keep a food journal. :-)

HanooN
Regular Member


Date Joined Dec 2008
Total Posts : 63
   Posted 12/31/2008 10:03 AM (GMT -7)   
You are not alone,

be always positive and have a good faith and hope.
you need to watch what you eat, drink. Always keep dairy so you can track what irritate your tommy.
no gain without pain. most of traditional Medications have side effect, but look at them from the positive side which it can control you Symptoms.

best of luck

lets us know what is going to happen after you see your doctor :-)
Age:28
Diagnosed with CD in JAN, 2008.
Meds: Prednisone(20mg), Pentasa (2000mg) Remicade/monthly, Entracort, prilosec, Multivitamins
Surgeries : NONE


confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 12/31/2008 2:33 PM (GMT -7)   
Thank you for the replies.

For those of you who have had Crohn's for awhile now, do the medicines work? I will start taking mine on Friday when I speak with my doctor. I hope the medicines relieve the diarrhea. That is my worst problem. When I'm intimate with my partner, sometimes I feel like I'm going to have a bowel movement. Once I actually did and was really embarassed. I hope this never happens again and I'm glad now I know what's wrong with me. I hope the medicines do work. Please let me know! Thanks!

sulleysullivan
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 12/31/2008 3:17 PM (GMT -7)   
so far my meds help a little not much with the D tho i go back for blood work i was just diagnosed as well and dont have much advice i have noticed tho that since cutting out soda and not eating at fast food joints i feel alot better i think its the grease ha ha as for the accident while getting intimate it happened to me too ha ha it was aweful i cried so your definitely not alone! hope things go better for you!!! :)
"I feel infinite." -the perks of being a wallflower


confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 12/31/2008 3:21 PM (GMT -7)   
Hi sulleysullivan. I feel for you. I cried when it happened to me too. I hope it never happens again. It was the first and hopefully the last time.

Has anyone else noticed the meds helping with the D? Also if I go into remission there's a good chance I'll never have to get a bag in the future right?

Post Edited (confusedgirl22) : 12/31/2008 3:27:26 PM (GMT-7)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/31/2008 3:46 PM (GMT -7)   
The medication generally does work, but it takes a couple of months to really kick in sometimes so be patient :) The pentasa has worked well for me...and I am on and off prednisone all the time.
Imodium will help with the D if used as needed, bentyl is a good anti-spasmodic, and staying away from high fat and/or sugary foods helps as well since they can make inflammation worse.
As for getting a bag, you just need to be careful with your diet, stress levels, amount you exercise, etc. or basically just most common sense things that go along with Crohn's. Someone else at my fiance's work had to get a colostomy bag, BUT he decided he would eat whatever he wanted still after being diagnosed with Crohn's. Simply, he didn't care, wasn't careful, and ended up with the bag.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


HanooN
Regular Member


Date Joined Dec 2008
Total Posts : 63
   Posted 12/31/2008 8:44 PM (GMT -7)   
you are not alone, do not get upset over it. It is not your fault.

Meds do work but it take some times. watch what you eat and stay away from stress, reduce sugar, and Carbs

best of luck cool
Age:28
Diagnosed with CD in JAN, 2008.
Meds: Prednisone(20mg), Pentasa (2*4) Remicade/monthly, Hydrocodone, prilosec, Multivitamins
Surgeries : NONE


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 1/1/2009 8:36 AM (GMT -7)   
I have been on Remicade for 5 years and it keep me out of the hospital for that long. So there are drugs that help. Like everyone says you are not alone. Welcome to the forums any questions, just asked, these people on here are great, they will answer and help anyway they can. yeah
Crohns for 13 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


HanooN
Regular Member


Date Joined Dec 2008
Total Posts : 63
   Posted 1/1/2009 8:59 AM (GMT -7)   
Erik45,

I see that you are or were on Imuran. Are you talking Imuran with Ramacide? if so can you tell me please how it works for you?

thanks
Age:28
Diagnosed with CD in JAN, 2008.
Meds: Prednisone(20mg), Pentasa (2*4) Remicade/monthly, Hydrocodone, prilosec, Multivitamins
Surgeries : NONE


confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 1/1/2009 11:43 AM (GMT -7)   
Happy New Year everyone!

So I'm going to see my specialist tomorrow. I have so many questions to ask him. Just wondering.. if I watch what I eat and take my medication I shouldn't have anymore problems with the D and having any embarassing situations during sex like I did once right?

kam#7
Regular Member


Date Joined Jun 2008
Total Posts : 125
   Posted 1/1/2009 11:49 AM (GMT -7)   
Welcome to healing well. I am sorry that you have been diagnosed with crohn's, but please know that every case is different. Some cases are much more severe than others. The most important thing right now is to get a good GI doc - one that specializes in Crohn's. He or she can work with you on meds and diet.

I still drink my coffee every morning and I enjoy most foods. The key to this disease is figuring out your own body. What works for one person might not work for another.

Just take one thing at a time. If you are anything like me, you will find yourself amazed at your own strength. I also have anxiety with my crohn's so I understand your fears. I just take things day by day and TRY not to over think everything. I know, easier said than done :-)

Hang in there and keep us posted. You have found a great site to share and learn about this disease.
35 year old female (newly married) - Diagnosed w/Crohn's 2002 - Surgery 2004

Currently taking: Pentasa, Entocort, Imuran, Zoloft, Seroquel & Ativan as needed


Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 1/1/2009 1:44 PM (GMT -7)   
Also note some people find relief in dietary modification. Lutz ("Life Without Bread") suggests as many as 85-90% of dieters can put themselves into remission on carbohydrate restriction; at least two other researchers have come to the same conclusion independently. Gottschall ("Breaking the Vicious Cycle") suggests that some may be put into a remission that is indistinguishable from a cure, but that requires strict dietary modification for 2-3 years. Recent work by Ebringer in the UK has noted that removing all starch from the diet (amylopectin is the problem, not so much the amylose) is the problem.

I've been off my meds for 11 months on the Gottschall diet, and my blood values have normalized. I'm in remission and on a daily basis, I feel fantastic.

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 1/1/2009 4:02 PM (GMT -7)   
Welcome, Sorry to hear your one of us too, but this is a good place for information. Don't worry about changing everything right away. Everyone is different. I drink coffee in the morning and love a diet pepsi or coke too. I am on the Southbeach Diet and am Lactose Intollerant. For me the meds are a blessing to keep my crohn's at bay. The diet thing, well for me I have learned what foods make me ill. May I suggest a food diary. That way you can pin point over time what you can and can't have. You won't be depriving yourself of everything. Take care of yourself and I hope the best for you!

confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 1/2/2009 2:24 PM (GMT -7)   
Thank you! I was actually diagnosed with UC today. They told me after looking at everything it was UC and not Crohn's. My doctor put me on medication.
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