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Crohn's newcomer
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 10/25/2007 7:17 PM (GMT -7)   
Hi,I was just dx 10/23/07 with Crohn's.It is only very lowest part of my colon next to my rectum.Does anybody know if it stays in one area or does it move all over.I hear of all the horrible thing like bloody diarrea ,severe pain,.The most I get is I am very tired all the time.I get some belly pain and lower back pain.I go to the bathroom 2 or three times a day.Are all these horror stories what I have to look forward to.My doctor tells me it's a mild case but I am scared.This is supposed to be a uncommon desease and it seems that everybody I talk to seems to know somebody with it.Is this disease a death sentence.What is the fatality rate on this disease.my doctor kind of laughed at me when I ask how long do I have to live.He told me that it rarely kills people.Is this true?I am on prednisone and sulfasalazine.I am 38 years old male.I am very scared.Please respond.Thanks

rkilcher25
Regular Member


Date Joined Jul 2006
Total Posts : 144
   Posted 10/25/2007 8:51 PM (GMT -7)   
Sorry to hear that you have crohn's.  Its actually not that uncommon, i think about 1 million americans have ibd, split between ulcertive coltis and crohn's, people just don't talk about it that much and i think that's why it's not well known.  I know it can be scary at first to find out you have a diease but your doc is right.  It rare that people die from crohn's so you shouldn't worry to much about that.  in response for your other question, crohn's can affect you anywhere from your mouth to your anus, and yes you can have crohn's pop up in various places. I have it in my rectum, ileum and stomach.  But every person is different, some people have alot of problems and some don't.  Every persons story is different and how it affects someone else it may not affect you the same way.  Your best bet is to get yourself educated.  This website is good for support and ccfa.org (i think that's right) is also a good web site to check out.  Keep up on your meds and doc appointments and try to stay positive!!! 
26 years old
dx with crohn's at 23
Fistula seton surgery 2006
Advancment Rectal Flap surgery 2007
Fisula seton surgery 2007
 
 


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 10/25/2007 9:31 PM (GMT -7)   
Welcome! Good advice from rkilcher, every case is different. I have been a nurse for a long time, and the only person I knew that died from crohn's complications, wanted to die. That was 20 yrs ago, before a lot of these new meds, and not a whole lot of options as far as surgery went.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 10/26/2007 12:13 AM (GMT -7)   
Welcome to the forum!!!!!  You don't die from Crohn's disease.  It's more likely that we die from a car accident, or by crossing the street, than dying from this disease.  When you drive your car or cross the street do you honestly think that there is a chance you could die?  No.  Otherwise you wouldn't do it.  Keep your chin up, watch your diet and take your meds as prescribed, and keep living your life to the fullest.  Nobody knows what tomorrow may bring.  There are people in this forum who have had the disease for over 30 years, and are still working and raising families.  Plus keep in mind that new medicines are always popping up.  Yes, Crohn's is a debilitating disease sometimes, but there are much worse illnesses than this one.
 
I have been living with this for the last 9 years, I work full time, I haven't missed a day off work because of this, and I also have two small children to take care of.  Of course I have my ups and downs, but please don't be afraid of all those horror stories you read.  There are millions of people with Crohn's who lead a normal life.
 
Christina tongue

Crohn's newcomer
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 10/26/2007 5:11 AM (GMT -7)   
Thankyou for all the post.They really help.I guess you will get to over time.This is a great place to start meeting others with my problem.I guess I am part of the family know.You know the thing is I was tired all the time but I didn't have the stomach issues that I do now.Ever since I found out my stomach just burns.I wonder if it's my nerves getting to me?I think that I have had this for quite some time.When I was 24 years old I had stomach problems which I had diarrea for 4 weeks.They did test and didn't find anything.When I was 30 I had routine blood work done and I was anemic.I wen't through many test and found out I had psoriatic arthritis.My colonoscopy showed I had a polup removed.Everything else was ok.Then about 5 years ago I was having issues with mucous and diarrea again so he did another colonoscopy and found I had imflammation in my colon but test came back neg.He said it was ibs.I have been looking things up and ibs doesn't include imflammation.Now here I am .How do you know when it is time to go to the emergency room or wait for a doctors visit?In the last 10 weeks I have been 6 times to the er.My first cat scan showed thickening in my colon.Which is why I had my recent colonoscopy,It took 8 weeks to get in.A week before I had it done I had another cat scan done with the same barium and dye and everything was completely normal.I go get my scope and there it is.I guess I could write forever,it takes the anxiety away.One other question is does prednsone make your stomach hurt?And is it good for flare ups.How do you know if it is a flareup.I get some mucous diarrea but thats about it.What about the severe bloody stuff I here about?Once again thanks for all your feedback.Your friend Joe

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 10/26/2007 5:17 AM (GMT -7)   
You will find that many peolpe who post here have pretty severe Crohn's with lots of complications. That's not the norm. Most folks who have fairly mild disease don't come here, or if they do they aren't likely to have a lot to talk about. There are many people with Crohn's who live with it for decades with no serious complications, no surgeries and a pretty good lifestyle. Your doctor's assessment of your disease as "mild" is encouraging . . . and the fact that you have probably had it for 15 years or mroe prior to your diagnosis bodes well. If you've had no major complications in those 15 years, you are not likely to start having them now, especially if you get on appropriate meds and diet. You'll need regular screening colonoscopies to check for colon cancer (you said you had a polyp I think) but should do well. There's no reason to anticipate running to the ER on a regular basis. Just find the meds that work for you, eat sensibly and live. And if any problems come up in the future, deal with them then.

athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 10/26/2007 5:47 AM (GMT -7)   
Please try not to be so anxious.  Having Crohn's doesn't mean you will be hanging around the ER often.  Maybe you will never need to.  I have only been hospitalised one in those 9 years with an obstruction, and that was because I wasn't on any meds, and the situation got out of control.
 
Prednisone may have some bad side effects, but it really helps when you are flaring.  It didn't make my stomach hurt, but it really helped me within 4-5 days (stopped the diarrea and my stomach cramps).
 
For me I know I'm flaring when my stomach hurts and I keep running to the bathroom, I have nausea etc., but everyone is different.  Now that I'm on meds, my flares last only 2-3 days and then I'm fine again. 
 
Mucus in the stool maybe a sign of inflammation, but also normal people get mucus once in a while.  What meds are you on? 
 
Christina

Crohn's newcomer
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 10/26/2007 7:00 AM (GMT -7)   
Hi nice to meet you.I am just taking predisone and sulfasalazine.I have been on sulfasalazine for some time for my arthritis.I don't know if the steroids are helping.Do you ever get lower back pain with crohn's?

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 10/26/2007 7:43 AM (GMT -7)   
Welcome to HealingWell! Sorry you must be here..
Actually, you sound like you might be fortunate. Your CD sounds limited & mild ( compared to many here..). But as said predicting CD is much harder than predicting weather. Some of us mild people end up with a ton of complications ( Moi, for instance!). Some have 1 or two flares & it goes away or at least stays inactive. Hopefully, you'll be in that category!
In the past IBD use to have about a 33% mortality rate, some complications are severe and life threatening. That doesn't happen anymore fortunately..

Sincerely,
Matthew

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/26/2007 9:18 AM (GMT -7)   
Hi and Welcome to HW we are here for each other and now you will get some support with your DX and it is great to be able to share with each other .Mine is severe or was in Jan. it is goood you are finding out about CD and that makes a difference it is good to know what things effect our body. Diet helps alot too with pain and stuff. Each of us seem to have certain areas where we have problems .I am on pred. too and it can cause night sweats which some of us have a little problems with how are you doing on it ? Keep in touch. lol gail

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 10/26/2007 12:41 PM (GMT -7)   
Newcomer, you mentioned your stomach has been burning since you found out. Prednisone can cause that for some people, so if you started prednisone after finding out you have Crohn's, it might be the prednisone causing your stomach to burn. Tell your GI about this and he/she can prescribe a stomach acid-blocker for you. If you don't see your GI for a while and can't wait, you can get over the counter (OTC) acid blockers nowadays, such as Prilosec OTC, or Zantac or Pepcid - ask the pharmacy, and try one for a few days and see if it helps your stomach.

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/26/2007 1:41 PM (GMT -7)   
welcome aboard! you poor thing, i guess all of us go through the initial freak out stage. i am newly diagnosed and felt i had a grim life ahead of me but i've really come around with all the research i do and help from this lovely board. just remember to breath, things will get better.

take lots of care & hope you feel better real soon!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 30mg prednisone, 4000mg pentasa daily & vicodin for pain


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 10/27/2007 8:14 PM (GMT -7)   
Yeah, Prednisone & Bentyl both give/gave me unbelievable reflux. Once wook up in 93 with a mouthful of acid. One of the less pleasing side-effects of our favorite drug!

Matthew
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