What to look forward to??

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Sep 2008
Total Posts : 11
   Posted 9/4/2008 10:29 AM (GMT -6)   
I was just recently diagnosed with Crohns (May of this year). I have only landed in the hospital once overnight ( right after the colonoscopy) and have only have one flare up that lasted a little over a month. I keep reading testimonies about surgury and people who are unable to leave the house. Is this what I have to look forward to? Will my disease keep progressing until I can't function? It's a depressing thought.
Diagnosed with Crohns May of 2008. Still in the experimental stage of drugs. Currently on Lialda and hopefull.

Veteran Member

Date Joined Oct 2007
Total Posts : 1184
   Posted 9/4/2008 10:37 AM (GMT -6)   
The vast majority of patients lead normal lives with the odd flair up. Some go into remission for 30 to 40 years and it never comes back. I think only 10% of people have recurring flairs but not sure of that figure - it's what my doctor said.

If you want to worry and scare yourself though you have come to the right place! I have to say I am petrified since I came here and read how some wonderful people on here have suffered. But that is not the norm for everyone, especially for the many who don't come on here.

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 9/4/2008 10:41 AM (GMT -6)   
I have had Crohns for almost 33 years. Yes I have had 2 resections, but I still work fulltime and have a pretty good life. I am definetly not stuck in my house, thats for sure. I have had mild Crohns most of my life and still do. Hope that helps.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 9/4/2008 10:54 AM (GMT -6)   

Please don't scare yourself silly.  The best thing you can do for yourself is educate yourself, but realize that we are all individuals.  There is a vast range within this disease from mild to severe and you may fall anywhere within that.  My Mom had CD and I have CD, so I have basically "lived" with this my whole life, and you can have a relatively normal life.  I have been married for 23 years, I have 2 daughters, I have always worked, I have traveled, done outdoor activities, volunteer work, belong to clubs, and yes, I have had 3 resections and have had to spend some time in the hospital from time to time.  The one thing I have learned is that if there is something I want to do, I will find a way to do it.  I may have to make adjustments, but I will do it.  Maybe I didn't volunteer to be the chaperone for the hike in the woods, because there was no bathroom, but I was the parent charperone for the museum trip instead.  Instead of being PTA President I was Co-president so that if I did get sick there was back up.  Its all about adjustments and thinking things through.

You just have to plan a little more than the average person, and be a little more aware of your surroundings.  But you can have a normal life.


CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Regular Member

Date Joined Aug 2008
Total Posts : 47
   Posted 9/4/2008 11:21 AM (GMT -6)   
This place has been such a blessing to me. You can choose to be scared, be prepared, be informed, be encouraged, get wisodm, get suggestions, learn something new quite often, or find someone to encourage. smilewinkgrin
My husband was diagnosed around June '06, so we are new to this. No family history (he's adopted and not in my family) so we had never even heard of UC nor CD.
His first flare we  researched what the disease was, and what it did, and what to "expect" could be possible outcomes. We obeyed the doctor to the T, and took everything they prescribed etc.
Since then, we have learned there are other options and doctors that have more (or less) wisdom.
The most important thing I learned was that this is INDIVIDUAL. What works for Sue, John and Sally, may not be what is best for Sam, Jake and Bev. BUT Sue may have suggested something to John that his doctor never even thought of and now John is feeling better.
That is what we have gotten from here.
I have been encouraged and since I am doing most of the research for my husband, I am learning about things that may make big improvements for him.
I found that dairy seemed to be a common irritation for quite a few, so he stopped drinking milk - seems to have worked. Cheese and of course yogurt have been okay.
Fiber during a flare isn't good, which seems like a no brainer, but he likes shredded wheat! I said "hey, lets not and see if it helps" cutting out wheat products for the moment, seems to have helped.
Reading about medications others have tried or are on, also gave us insight on whether we want to try that route.
Keep your chin up, be encouraged, and learn what you can.
Hope that helps.

Veteran Member

Date Joined Aug 2003
Total Posts : 1017
   Posted 9/4/2008 1:21 PM (GMT -6)   
I understand how this site can be scary to someone new to CD, but something my doc said helps me to keep all things in perspective. The majority of the people who are here or on other support sites are very sick and really do need the support. If people are not sick or in a flare they tend to just go about their business. Remember that if someone feels good they do not want to be reminded of what is wrong with them.

Please do not get me wrong. I am in a good place and I still come here on a daily basis. I lurke more than I post, but I feel very strongly about these good people and it helps me to remember that even when I feel good there are others who need my support till they feel good.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 9/4/2008 4:21 PM (GMT -6)   
LinJade - I don't know how old your are, but I was diagnosed with crohn's as a senior in college... I went through a really rough phase where I just kept thinking "This is when my life is supposed to START, not go downhill!. Since I educated myself, became pro-active with my medical treatment (what my docs would call obnoxious, probably), and have been living with the disease for several years now - I would NEVER think what I used to about becoming a home-bound curmudgeon. I live my life, and I love my life. I just might have a few more "speed bumps" than people without crohn's, but hey... everybody seems to have SOMETHING these days. I've come to terms with this.

I agree 100% with what RedAdmin said... I've gone 3 or 4 months before without checking this forum because sometimes when you feel good you really DON'T want to be reminded of the disease and all the terrible things it can do to people. The bottom line is, though, that I'm 26 - married - happy - and functional...even though I'm flaring and have been through HELL in the last month - life is still pretty darn good. I know this rough patch will end. And this forum, whether I'm doing well or not, is a great support network that I don't know what I would have done without over the years.

Just find a GOOD doc, that you TRUST, and that will work with you and what YOU are comfortable with. This disease can be tricky enough without stupid inattentive doctors adding to your troubles when they do arise. It took me a long time to figure that out. Get a good doc, stay attentive to your body, be healthy in as many aspects of your life as you can. You have whatever you desire to look forward to in your life!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 9/4/2008 7:51 PM (GMT -6)   
Hi Some good wisdom given here and remember that it is your body and you gotta love it .Who knows what our lives will be like but don't be worried we all handle things when they arise and the good days are good. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 9/4/2008 8:53 PM (GMT -6)   
I wanted to chime in that I am one with mild crohns that works and goes to school full time and I am hoping to be a trial lawyer, poopy pants or not. I come here for lots of reasons. I love to be educated and I learn more here than from my doctors. I love to give others advice and suggestions. And this sounds bad but I by no way wish bad things on others, but it really helps put things in perspective to read about people who have the disease worse. You seem to be reading it scared thinking oh no this could be me. I, like most am surrounded by healthy people all day. It is easy to get depressed about the medications and the diet and the bathroom mapping. But then I come here and read about people on IV drugs, who can barely get to work, and I think, ok Fitzy, you don't have it that bad at all. Suck it up and get to work! I hope I worded that right. Oh and the people here are the most loyal friends you will ever find. So please, I hope you choose to stay. And when you get nervous, search for some of the old posts where we all talk about what we do for work. Then read the sigs. And realize that people that are way worse than you are still living a normal life and you can too, no matter what!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, October 25, 2016 4:11 PM (GMT -6)
There are a total of 2,711,905 posts in 299,033 threads.
View Active Threads

Who's Online
This forum has 153620 registered members. Please welcome our newest member, nanno2nd2.
346 Guest(s), 14 Registered Member(s) are currently online.  Details
alephnull, lynbrez, RUSS504, woodpecker43, imagardener2, Scaredy Cat, reminder, GingerGirl, blksteeda, ks1905, Boon1, kliend, Tall Allen, ozmadman

Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer