Newly Diagnosed

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missymalou
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/22/2008 2:40 PM (GMT -7)   
Hi everyone, I'm glad to have found your site!
 
4 weeks ago I was diagnosed w/ CD (from CT Scan & Colonoscopy).  I am currently taking 20mg Prednisone (have tapered from 40 mg), and 3600mg Asacol (1200mg 3x day) daily.  I have been pain free for over 2 weeks and had regular, healthy BM's for 9 days now and i'm quite happy to be feeling better!
I'm very anxious to get off the prednisone over the next few weeks, and i'm feeling really optimistic about recovery and remission!
 
I'm hoping to hear from people who have positive stories of long term remission (and how they got there).
 
I have a 14 month old daughter who needs a healthy mommy and a husband who wants a healthy, happy wife. 
 
Is there anyone who has got OFF prednisone for long periods of time?  I'm having a hard time finding any stories with positive outcomes out there!
 
I'm willing to try hypnotherapy, chiropractic & acupuncture as natural healers, has anyone used these techniques and had them work for them?
 
I appreciate any information!  I'm just trying to stay positive and keep my stress level down, and its hard enough when i'm on prednisone and all I read about is horror stories.  
 
Thanks!  

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 3/22/2008 2:46 PM (GMT -7)   
Welcome to the board. I have been on predisone for quite a while slowly tapering back down right now, my issue is that when I get to a certin point it flares back up again. I am starting entocort here in about a week to try to get me off predisone. I wish you the best of luck with predisone. The sooner you get off the better. You have found a great reasource with this board. Don't feel ashamed about anything cause chances are one of us has gone through it one time or another. Welcome.


Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). On HUMIRA it's not working, Prednisone

============================================

Post Edited (FinalMacGyver) : 3/22/2008 4:14:16 PM (GMT-6)


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 3/22/2008 3:20 PM (GMT -7)   
I got off Steroids. I take Remicade have for many years. I absolutely refuse to go back on Steriods. Made me feel horrible, even though they helped. I had about a year of being able to function pretty well and have been in a flare for three months. So there are good times and you cherish every minute. It has made me a better person. I let more things go and love life more!

skyway avee
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/25/2008 4:42 PM (GMT -7)   
I've been on the prednisone for a while and it has worked for me. I was painfree and i could eat pretty much anything. But once i started to come off of it a little i went downhill. But thank god I'm coming off of it now and being put on a different medication. I can't stand that it makes me gain weight.

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/25/2008 7:41 PM (GMT -7)   
I've been in what I consider "long term" remission for almost 2 years (i've only been an official CDer since late 2005, but my diagnosis was "severe" and they were threatening to take parts out. I wouldn't let them!). I get regular remicade infusions, but I take no other "medications". Probiotics and digestive enzymes have helped me immensely. I also receive weekly acupuncture (only $35 a week, and worth every penny!). The acupuncture really seems to help my immune system - I'm no longer getting colds and flu's every other week. And my circulation is much improved - my hands and feet used to always be FREEZING! It's a small strange thing, but one that I REALLY notice. I'm getting married next month, and hope to be pregnant not long after!

I know the happy stories can be hard to find, but they're out there! If anyone else is like me, sometimes when I'm at my best is when I'm most likely to "forget" that I'm a crohnie, and thus I don't think to check in on the other crohnies who are going through trying times. I know I've put some pretty horrific questions up on this forum in the past, but I don't think I've ever posted a "yay! happy!" one. Keep that in mind as you wade through the posts!

With your positive attitude and the strength of your family - you'll do just fine!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

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

~Marianne Williamson


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 3/26/2008 4:55 PM (GMT -7)   
Hello, welcome to HealingWell! And glad to hear you are feeling better. I was on the evil ol' pred for years. It was difficult to get off of, but once I did, I've stayed off it except during my last major flare & periods of CD arthritis. And I feel pretty good being off that witch's potion! LOL.

Sincerely,
Matthew

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 3/26/2008 7:48 PM (GMT -7)   
welcome. I am glad you are doing well. we all know what a shock it is to be newly diagnosed and there are so many new things to learn. you found a good place. my advice is always try to breath and ask lots of questions. remember that you will hear scary stories here, so don't get overwhelmed by that. there are many of us who feel good, and lots of people who have had a rough patch with CD and now have found answers that work for them, so they might not be hanging around here.
to answer your question, I have tried several things you mentioned. accupunture didn't cure anything, but was very relaxing. I teach and practice yoga, which was a good way to keep strong and active even when I was really ill. I have stopped eating gluten, which has helped more than anything. you will see those who have had great help from special diets, and those who haven't found relief there.
as for pred, I was on up to 80 mg and had little problems. no weight gain (but I wasn't really eating, either) and no mood problems. I had problems sleeping and odd rashes, but that is about it.
this is a bumpy, confusing disease. enjoy that baby and come visit us often. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/27/2008 9:44 AM (GMT -7)   
I have lived with Crohns for over 32 years. During my first four years with Crohns I had two pretty good flares that were controlled and cleared up with a course of Prednisone and Azulfidine. After these two flares I enjoyed a 20 year remission where I didn't hardly even think about Crohns and could eat just about anything I wanted. I took no meds for my Crohns either. What did I do to enjoy this remission, I can't tell you. I think its just the type of Crohns I have. I have the more scarring type of Crohns vs the inflammatory, fistulizing types. My remission ended in 2002 with a emergency resection due to a complete blockage. The things I have learned now is to really watch my diet. I live on a low residue diet. I eat no red meat, no veggies unless they have been cooked to mush. Nothing with a seed or peel. I do take Asacol now, but the biggest change I have made is in my diet. I stay strictly on my diet and do not vere from it. 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.


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 3/27/2008 10:07 AM (GMT -7)   
Prednisone will usually induce remission in most patients after diagnosis, but it is not a long term medication. Likely your GI will work with several differnet medications to see what is best in reducing or eliminating symptoms for you in the long term. I doubt seriously if crasking your spine, hypnotizing yuo or water therapy will have any impact on Crohns, which is an autoimmune inflammatory condition of the digestive tract. All medical therapies for Crohns are aimed at reducing and controlling the runaway immune response that is the root of the disease and its symptoms and damage. Response to those therapies varies from patient to patient and from time to time. It's really a trial and error process, and once you are weaned off pred you will have a much better picture of where you are headed.

missymalou
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/27/2008 12:18 PM (GMT -7)   
I appreciate the input that you all have given me. Its's nice to know i'm not alone.
 
I have been dealing with stomach and bathroom issues for about 10 years now, I have just learned to live with it and it hasn't really affected me except every 3-5 years or so.  But now, at 32, with an "official CD diagnosis" (the colonoscopy showed "mild to moderate") I guess I am just scared.  I'm hoping people out there aren't always as frightened on a daily basis as I am right now.
 
I have always been more of an optimist and I find that difficult this last month because I just can't control my future until I get there.
I am someone who never takes meds for anything, not even asprin, so taking all these drugs scares the hell out of me too.   
 
I'm just praying that I can wean of prednisone and be free of CD symptoms for awhile, maybe even years as I have before.  I just want my life back, I feel like this is all I think about and I don't want to take time away from my daughter & husband because I'm feeling depressed.  I know its in my control to keep trying to be positive, so I'll just keep trying, I just wish it was easier.
 
Thanks for listening :)
 

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 3/27/2008 2:38 PM (GMT -7)   
Yes, it is really scary, but you just need to live in the moment and know that many of us end up feeling pretty darn fine. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 3/27/2008 3:27 PM (GMT -7)   
Hi missymalou! Welcome to the board, yet sorry you have to be here. It is very scary at first, but just think/remind yourself; you didn't *just* get this DD. As you said, you've had issues for 10 or more years to one degree or another. I am very much as you described yourself: one who never takes meds for anything (if at all possible), so my son's diagnosis and initial drugs he had to take I think was as difficult for me as it was for him. Through a lot of help from this forum and reading and researching elsewhere, though, I feel we've "gotten a handle on things", so to speak. We hope to completely wean off meds this summer. My son's condition was also labeled "mild to moderate".

Two great books discussing diet: "The Maker's Diet", by Jordan Rubin, and "Breaking the Vicious Cycle" by Elaine Gottschall. (These "diets" are pretty similar.) It's funny. Our GI doesn't believe in dietary changes, but I believe it is what has helped my son the most. Dietary changes and probiotics.

We also go to a chiropractor regularly and I would seek out a naturopath if I thought my son wasn't doing well. I also have a friend who is Reiki certified and she has applied her skills on a couple occasions for me (I believe in prayer/meditation, but not sure I'll get my son to meditate regularly!! confused ) This is the direction we would rather take if at all possible.

Good luck to you! Still be an optimist!!! :-)
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/27/2008 3:43 PM (GMT -7)   
Hello Missymalou, and welcome to HW.

I just wanted to say that this forum can be quite disheartening at times. The people who come here tend to be (or have been) very unwell. We're not a representative sample of the broader Crohn's population.

I hope you fall into the milder, healthier group and can get off the pred!

Ivy.
Co-Moderator Crohn's Forum.


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 3/27/2008 4:14 PM (GMT -7)   

Hello,I have been off of Prednisone for about a year and a half now,doing very well on Imuran and Humira,before Humira I was very inflamed,even though I felt great,after Humira,the inflammation was gone.I hope to stay that way.

 

Good luck :-)

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