Newly diagnosed and freakin

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mjs2
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/24/2009 3:34 AM (GMT -7)   
I was diagnosed recently with crohns. Good news is I have very mild symptoms but I am so anxious over what lies ahead for me. It seems from reading all your posts that there is no chance of escaping fistulas or surgery or both. Worse, I am a nurse and have seen this firsthand. Is there anyone out there that has be able to avoid these dreadful complications? My disease is limited to my entire colon with no small bowel involvement.
 
1. No discussion of any illegal activity or threats of violence. (ie. illicit drug use or exchange, threats of suicide or self-injury, or threatened or intended physical harm).  Discussions of suicide or self-harm that are deemed negative and therefore potentially injurious to others are also not permitted.

Post Edited By Moderator (Nanners) : 9/24/2009 6:57:38 AM (GMT-6)


damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 9/24/2009 3:54 AM (GMT -7)   
nono  hi you sound like ur in a bad mental state regarding ur chron's?? i know how hard it may be for you but you really need to think more posotive?? you could be really lucky and not even end up having surgery for an ileostomy or colostomy!!! also everything that u do read please dont take it all so seriously as i have been an ostomate for 8yrs now and yes u read bad thing's but believe me it's not all bad and if it gives u back ur quality of life then i say "GO FOR IT" AND NEVER LOOK BACK OK. if u would like to talk further please dont hesitate to contct me. and please dont do anything silly regarding ur suicidal feelings. PROMISE U WILL PICK UP THE TELEPHONE AND TALK TO SOMEONE about HOW U R FEELING, I BEG U!!!!!! take care for now. rose-bud40. smhair
HELLO TO ALL. I HAVE JUST JOINED THIS SITE TODAY AND AM LOOKING FORWARD TO TALKING TO OTHER FELLOW OSTOMATES OUT THERE!!!!!! I HAVE BEEN AN OSTOMATE FOR 8YRS NOW BUT AM STILL HAVING TERRIBLE TROUBLE TRYING TO ACCEPT THIS AND ALSO INTIMACY PROBLEMS!! I ALSO SUFFER FROM CHRONIC DEPPRESSION AND PANIC ATTACKS. IF THERE IS ANYONE OUT THERE THAT CAN GIVE ME SOME ADVISE IN REGARDS TO ANY OF THESE ISSUES IT WOULD BE MUCH APPRECIATED. THX TO ALL. ROSE-BUD40. :)))))))


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 9/24/2009 4:34 AM (GMT -7)   
Every case of Crohns is different and not all patients have the major complications. I have had Crohns for 43 years and never had a fistula, obstruction or surgery. I think you will find that this and other similar boards attract a disproportionate share of those with mroe severe cases, as you would expect, since they are more likely to seek and share a lot of information. As hard as it may seem for some to fathom, there are a lot of things worse than Crohns, which for most people is a pretty managable chronic condition. Suicide? Well, maybe with ALS or pancreatoc cancer, but that is not what you have. I think you really need to talk to your GI about the likely future course of your disease and the many treatment options open to you. The simple fact is that most people with Crohns, most of the time, live full and ordinary lives.

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 9/24/2009 5:03 AM (GMT -7)   
Everyone's case is different, while around 80% of people will require surgery at one point, that surgery usually vastly improves the person's quality of life. If you're having problems coping, it may not be a bad idea to get help. Just don't let Crohn's control your life.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/24/2009 6:03 AM (GMT -7)   
Hi mjs2 and welcome to Healingwell. I am sorry I had to edit your post, but talk of suicide is not allowed on the forum.

I am a longtime Crohnie just like MikeB. I have lived with the disease for nearly 34 years. This disease has not stopped me from continuing to enjoy my life. I am married, now have 3 adult daughters, 5 grandchildren, and have been at the same job for almost 20 years. Life with Crohns is possible. You just have to take good care of yourself, take your meds, and make sure you eat well for YOU. Yes there will be bumps in the road, but I can honestly say that I have had more good days than bad in my 34 years.

If you find you are becoming anxious I would suggest talking to your family doctor about medications to help calm you. I developed some anxiety related to my Crohns, and thru therapy and the occasional Xanax I am now able to stop the anxiety in its tracks. Hope that helps.

Rose-bud40, may I suggest you start a post of your own, so that you can get more responses. Also we have a wonderful ostomies forum you might want to check out too.

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

MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 9/24/2009 6:53 AM (GMT -7)   
MikeB - Thank you SO MUCH for your post! smilewinkgrin    I have been freaking out alot lately too, about my daughter's future with Crohn's.  She's only 9 and doesn't have a clue as to the full implications of this disease.  My husband patiently reminded me the other day that while reading and researching on the internet is helpful, supportive, informative, etc., you often read the worst case scenarios much more than the best. I will try to keep this in mind more often, but posts like yours really help.
 
MJS2 - This is not always SO bad.  Here's just one example that I hang on to myself:  After my daughter's diagnosis, my husband mentioned it to a few of his patients.  One of them I happened to go to high school with (way back when). She said to him "Oh I have Crohn's too, since I was a child."  She told him that she takes her meds and has been completely fine.  Mind you she is now in her 40s, married, employed, beautiful home, 2 beautiful children.  The fact that you were told you have a mild case is great news for you.  Follow your doctors advice, consider dietary changes to prevent flares (gluten/casein free and/or SCD mabye), and TRY to look on the positive side of things.  I have a child with autism, he cannot speak, read, write.  That aside, he's gorgeous and the love of my life (along with my daughter). When I feel down, I look around at other people's lives...everyone has issues.  Maybe not MY issues, but issues nonetheless.  Life's not perfect for anyone, but it can be good if you can find the positives.
 
Also, maybe you'd want to consider exercise if you haven't already?  It can really make you feel better and in charge of yourself.
 
 
Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months

Then continued with:

  • Pentasa, 3 blue horse-sized capsules, 3 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega
  • Calcium
  • VSL#3, 2 x day
  • Custom Probiotics: 6-Strain Blend, 1 x day
  • Culturelle, 1 x day


mjs2
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/24/2009 12:27 PM (GMT -7)   
Thanks for the support and especially from Mike. Nice to hear a positive story.

BrandyWine
New Member


Date Joined Sep 2009
Total Posts : 16
   Posted 9/24/2009 3:46 PM (GMT -7)   
I had a really rough time when I was first diagnosed with Crohn's. I was 52, and the doctors weren't checking for it, because I was "too old to get Crohn's" .. well, obviously I wasn't, but I nearly died before they finally found the Crohn's and started treatment for it.
My case is not as severe as some here. As a matter of fact, I've been very grateful that mine seems to be pretty mild. I did have an abcess, which was drained, but that actually caused scar tissue to grow, which created a knot that had to be removed surgically. That was 3 years ago, right before I started on the Remicade, and I have been in remission since then. Crohn's is a nasty disease and affects people differently, but it's not a death sentence - I live a very normal life and am pain free most of the time. Hang in there!
This disease will NOT defeat me!

Diagnosed with Crohn's in December, 2004, at the ripe old age of 52. Currently on Remicade and in remission.


chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/24/2009 4:56 PM (GMT -7)   
I was dx 6 years ago and suffered from severe depression after the diagnosis. I thought life as I knew it was over. But I talked to my doc and got on anti-depressants. Also, I went into remission within 6 months and was completely 'normal' for 5 years. I just recently flared back up, but it's mild and I got on meds within a few weeks of it starting and it's not so bad.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission from 11/2003 to 7/2009
omeprazole 40mg, zoloft 100mg, apriso 1500mg, dicyclomine 3/day
dx with bipolar II 8/2009, re-diagnosed with bipolar I 9/09
Apparently allergic to lamictal...waiting on next rx

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