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Posted 2/13/2008 5:34 PM (GMT 0)
Hi All,
I apologize in advance for any run-on sentences. I'm notorious for them.
I'm very new to this, and I'm just looking for some support and information where I can find it. Let me start off with telling you guys a little about myself.
I'm 23 and I was diagnosed in December, right after Christmas. I took a trip to the emergency room since I wasn't feeling well for a while, and they told me it looked like I had colitis. Went to see a GI the next day and was prescribed Pentasa. A few weeks after that got a colonoscopy a little while later, and found out that it's Crohn's. I'm current taking 2g of Pentasa a day (2 500mg pills, 4 times a day) a daily vitamin and Flora Q. I am feeling much better than I was when I was diagnosed, though not yet 100%.

I just had a few questions I'd like to ask the Crohn's veterans if I may.

Is there really anything that you have eaten that makes it seem like it makes your condition worse when you're having a flare up? At it's worst, it seemed like it didn't matter what I ate. If it was going to hurt me, it was just going to hurt me.

I made the mistake of using wikipedia to look up this disease at one point, and was... taken aback by all of the potential complications including.. fistulas(sp?) Has anyone had this? Are there factors that lead up to that? Is there anything that can be done to prevent this from happening?

I read a few topics here about this subject, but does it make it "harder" to have children, as a woman? Not saying I want to try to get pregnant in the near future, but is there anything I should do for this?

What is the ratio of people who've had to have surgery to those who haven't?

I've got a doctor's appointment on Friday, and I'll post some of these questions to him then, but I'm a little afraid and nervous right now about the "what-ifs."

I would greatly appreciate anyones experience, whether it's to allay fears or tell me what to expect.

Shannon
Posted 2/13/2008 6:38 PM (GMT 0)
Hi Shannon and Welcome!

The following link goes to the Crohn's and Colitis Foundation web site, which can answer a lot of your questions:

http://www.ccfa.org/info/?LMI=3

The link below from Johns Hopkins is pretty good, too:

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=6&disease=21&lang_id=1

Posted 2/13/2008 6:46 PM (GMT 0)
Best bet is to not compare your case with the literature or anyone else's. If there's one constant about Crohns it is that there is no constane -- every case differes. Keep reading and you'll learn a lot.

Posted 2/13/2008 7:32 PM (GMT 0)

Shannon,

Sorry to hear of your diagnosis.  My Daughter is 25 and was diagnosed at age 17, so I know how many questions a new IBDer has!  Lots of good info on this Board.  Great place to ask all of your questions.

You can receive FREE a copy of 100 Questions & Answers about Crohn's Disease and Ulcerative Colitis: A Lahey Clinic Guide  at:

https://www.crohnsonline.com/Register.aspx

An excellent guide.  Covers IBD and Pregnancy also.

Posted 2/13/2008 8:50 PM (GMT 0)

Shannon, get the book it is very helpful.

            

Posted 2/13/2008 8:57 PM (GMT 0)
I've already filled out the form for it.
Posted 2/13/2008 9:21 PM (GMT 0)
Welcome aboard, I too am a new member.  I must say, you have came to the right place for answers.  This group is fantastic!  I can't be of much help but surely would love to help however I can.  My daughter had surgery in Nov for abcesses/fistulas.(I believe they are similar or the same?)  There wasn't much warning just came on pretty sudden with severe rectal pain.  To the best of my knowledge, it is a complication of the disease and is caused from inflamation, tunnels can form in the intestinal walls, allowing bacteria to back up.  Can't imagine a preventative measure.  I hope I'm not far off on that?!  The surgery didn't take long and she was feeling better within a few days.  She said the relief of pressure was immediate but obviously she had new pain from the procedure.  Soaking in the bath was helpful for her.  Good luck with your condition and your search for answers.  I will keep you in prayer!

Posted 2/13/2008 9:25 PM (GMT 0)
Hi Shannon,
Eveyone is right in telling you- each crohns patient is different. I have had crohns for 7 years now. I consider myself to be in remission- with occasional flare ups- I did want to tell you my experience with food. In the beginning when I was first diagnosed and very ill. It seemed that everything I ate hurt. However, I began to notice what I could tollerate better. For instance- instant oatmeal was great- mashed potatoes were a life saver, and turkey. I ate what appeared to be thanksgiving every day for about 3- 4 months. I ate every possible kind of potato, and rice was good to. I will tell you to this day even if I am feeling great- One day I can eat cesear salad and be just fine and the next day I could eat the same cesear salad and be doubled over in pain- Some times it makes no sense at all- But I have learned that if I am having a bad day then I don't drink alcohol, or eat spicy foods, or even salads, I try to go to my potato diet, and that works for me. As time goes on you will learn what foods work and what foods don't - keep a log it helps.
Rikki
Posted 2/13/2008 9:26 PM (GMT 0)
I love the book written by Jill Sklar entitled "The First Year: Crohn's Disease and Ulcerative Colitis." She has CD and writes from a patient perspective. She addresses all the things that you would need to know for the newly diagnosed. Even better, she puts it in terms that WE can understand. Doctors have their own language that is so hard to decifer. I bought it on Amazon and you can get it for cheap. Hope this helps
Posted 2/13/2008 9:43 PM (GMT 0)
As far as foods and such go, you cannot go wrong by avoiding caffeine. Its a bowel irritant even to people without crohn's... so you can imagine what it does to a crohnie. Aside from that, each case is different... though one food that bothers me pretty consistently is milk (and other dairy)... and ive heard a lot of other crohnies have problems with it. honestly though, the only way to figure out what bothers you is to keep an eye on what you eat and when you get a flare. And yeah, when i hit rock bottom in a flare, it doesnt matter what i eat. its all going to irritate my crohns, so at that point i eat whatever i can keep down. when i feel kinda gray or close to normal, though, i try to avoid things i know will bother me.

I can't answer your questions about complications or fertility, though I'm sure there are others here who can.
Posted 2/13/2008 10:12 PM (GMT 0)

Welcome to HealingWell. This is a great site. I look forward to getting to know you better. I am Kitt.
You have received some excelent advise and I just received the book "100 Questions  & Answers "  absolutely free and it is great.  It covers all those basic questions you have so I highly recommend this book.
Also if you start reading the threads you will find tons of info but I agree remember each person's disease process is individual so keep posting and we will be here to support you.

Again a warm welcome
Kitt

Posted 2/14/2008 1:58 AM (GMT 0)
Every one's situation is different. I was diagnosed at 14. Fistulas in my case weren't pre empted. I just woke up one day and started getting abcesses...killer pain, but they can b treated. I dont want to tell you any horror stories because they are not always the case. As far as the child bearing is concerned. Statistics iv read state that the crohns itself doesnt seem to cause problems with conceiving as much as if you have fistulas or abcesses they may cause sexual intercourse to be painful (my situation again). When i was diagnosed, there werent nearly as many medications and treatments as there are now, and that was only like 10 years ago, so i'm thinking we must b close to a cure! So what if its wishful thinking
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