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Regular Member

Date Joined Jul 2007
Total Posts : 56
   Posted 10/4/2007 1:11 PM (GMT -7)   
Today is a bad day. I don't know if I am going to scream, cry or curl up. I am feeling all of these things and I think that my friends and family are tired of hearing about it.
I was finally off of Prednisone only to be put right back on it again because I am still flaring. Now I am back up to 20MG per day and feeling all of the anxiety, shakiness, and sleepliness that I thought that I was rid of. A few weeks ago I was feeling OK and now I realize it was only the Prednisone keeping me there. My GI has not determined the next treatment yet so I am in a holding pattern for now. I am so scared that I am going to end up back in the hospital again.
I know I was in denial that I would complete the course, taper off and go on my merry way steriod-free. This is my first big set back (I was only dx 4 months ago) and I feel like a failure. I know many of you have lived with this DD for years and have it much worse than I. How do you handle it?
Dx with Crohn's Colitis July 2007
37 yr old working Mom with two beautiful little girls (2 and 4)
Prednisone (back up to 20mg), Asacol, Vicadin, Imitrix and Ambien as needed
Other stuff: probiotics and folic acid

Regular Member

Date Joined Jun 2007
Total Posts : 86
   Posted 10/4/2007 3:21 PM (GMT -7)   
I'm sorry you are having such a hard time. As for how I handle it, well, I'm not really the person to offer good advice, lol. But I can tell you that most of us here have gone through or are currently going through your struggle.

Take care, (((hugs)))

Bipolar disorder
Appendectomy Nov '01
Dx Chron's summer '05
Yay Humira!, Vicodin as needed, Neurontin, Wellbutrin XL, Asacol 12pills/day, Ambien, Multivitamin

The most exciting phrase to hear in science, the one that heralds new
discoveries, is not "Eureka!" (I found it!) but "That's funny ..."
-- Isaac Asimov

Veteran Member

Date Joined Feb 2005
Total Posts : 1146
   Posted 10/4/2007 3:28 PM (GMT -7)   
Hi SanFran~
It's okay to have a bad day.  We have all been there many times over.  As to how we handle it, I guess that we just eventually adjust our lives to be able to live with it.  A least I know that I have.  It sounds to me like you have yet to find the right treatment for you.  Hopefully that will come soon and you can start to feel somewhat "normal" again.
Feeling like a failure..... I can certainly identify with that feeling too.  I used to be the one who took care of everything.  The kids, the house, the bills, the shopping....  I have had to learn how to ask for help, and that people actually are willing to help.  Most of the time they just don't know what they can do for you.  If you don't tell them, they don't know.
Co-Moderator Crohn's Disease Forum
Co-Moderator Ulcerative Colitis Forum
Asacol 6/day, Prevacid 2/day, Acidophilus Complex Probiotics, Green Tea Extract, Flax Oil
Help support Healingwell!!!

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 10/4/2007 4:01 PM (GMT -7)   
Has your doctor talked to you about entocort? It has a lot less side effects than Pred and depending on where the disease is, can be very effective!
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!

Regular Member

Date Joined Jul 2007
Total Posts : 56
   Posted 10/4/2007 5:50 PM (GMT -7)   
Thanks all for your words of encouragement and advice. I will talk to my doctor AND my friends and family. It really is hard asking for help and figuring how my life is going to have to change. Everyone was really helpful when I was first diagnosed but now that it has been a few months, I am starting to feel like a broken record. I guess I'm not used to the "chronic" thing.

Thanks to everyone who participates in this forum. It's really comforting to be able to connect with other people that "get it"
Dx with Crohn's Colitis July 2007
37 yr old working Mom with two beautiful little girls (2 and 4)
Prednisone (back up to 20mg), Asacol, Vicadin, Imitrix and Ambien as needed
Other stuff: probiotics and folic acid

Regular Member

Date Joined Aug 2007
Total Posts : 277
   Posted 10/4/2007 6:00 PM (GMT -7)   
I am soo sorry that you are going through this. Yeah being a newbie is hard because everyone is so used to people getting better that they don't know how to handle when it's more longer term. And us as patients we don't know how this pans out so it's frustrating.

I feel like a broken record too. AND because some of us don't look sickly cause its in the inside, they think we're just vying for attention. Sometimes I want to lash out at them and tell them I would LOVE to give this up and have THEM be the ones that I am saying "sorry that you're sick" to. But I know that's mean and serves no purpose.

There are good people on here and they've been through what we are going through now and they've survived. Use this place as your sounding board.

Take Care.

<virtual hug>
Newbie - 35 yrs old Diagnosed: 08/03/07
Meds Asacol 3x day

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 10/4/2007 6:03 PM (GMT -7)   
So sorry you have to go back on the evil Pred.  Fitzy had a good idea, maybe you can talk to the doc about Entocort.  It really is much easier side effects wise, but can take a little longer to kick in.  As for how we handle it, my personal way is to just take one day at a time, and do what I can that day.  You learn to adjust and just take things as they come.  Some days its a little easier than others, but some days just plain suck!  I am amazed how I have learned to just push thru sometimes when I just want my heating pad and bed.  But somedays, I just have to give in to my disease.  One day you will get there too.  Sure hope the doc can get things figured out for you.  Maybe its time for something a little stronger like Imuran or 6mp.  These meds take a few months to kick in, but alot of folks have had success getting things to quiet down with them.  God Bless and Good Luck!

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.

Regular Member

Date Joined Sep 2007
Total Posts : 330
   Posted 10/4/2007 6:15 PM (GMT -7)   
Sanfran --
I'm newly diagnosed too and having the exact same reaction to the idea of something "chronic" vs. "acute." Even though I've had symptoms before, I always had the assumption that it was just a bad day or a bad week. Now, it's hard to wonder how this is all going to play out. I feel pretty discouraged that I don't feel MUCH better after about a month of illness. And, I'm in the middle of tapering Prednisone, but getting symptoms back so my GI is talking about upping the dose. I know just how you feel. I hate the Prednisone, too.

Hang in there! People do seem to figure it all out, and it sounds like you've got some good advice to discuss with your doctor. One day at a time!
44 years old, newly diagnosed after an 8-day hospitalization in September 2007 but symptoms for several years before that.
Taking Pentasa, Prednisone (tapering), Cipro, Prilosec, probiotics, calcium and a multi-vitamin -- also Levoxyl for hypothyroid (Dx 2004)
Gall bladder surgery in 1997.
Single working mom to three wonderful kids, ages 9 to 15.

So appreciative to have this forum -- it's all new to me!

Regular Member

Date Joined Sep 2007
Total Posts : 246
   Posted 10/4/2007 10:02 PM (GMT -7)   
i haf only been recently diagnosed too,thought i was going gud but 2 weeks ago involved me ging in ad out of a&e my infalmation is @ 44 andit was @ 24 wen i got diagnosed if those numbers mean nething???? im just taking it things day by day atm.Its hard wen u dnt look sick thats wat i find difficult ppl only really believe u if u puke on their shoe. oh well, take each day as it comes,and try not to worry about the wat if's. im on 20mg of pred aswell was tapering ok i only had a few days of tapering and then i got put back up to 20mg,i look like jubba the hut,dam moon face,also crazy mood swings to boot. anyway gud luck !!!!

Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 10/4/2007 10:16 PM (GMT -7)   
Well we are all here for each other and I do believe that we all........ if not most have been through the same. No matter what it is HARD, very hard! We get through it BUT one day @ a time. Trust me, you will get stronger and stronger and you may actually surprise yourself. You ask how we do it!!!??? Well the answer is WE JUST DO!! So keep your head up. I will be more than happy to help you get through this HuMp! And will give you my e mail address if that will help. Let me know. I am almost 27 and have had CD for about 7 years. It is hard as heck and the disease itself has not gotten easier to deal with BUT living with it and life in general has. Attitude is Everything!!!

* Find a good Dr. Don't feel bad getting 3 opinions OR until you find a good Dr.
* Find a good support group (face to face) and of course take advantage of this Forum. Fabulous people on here!
* Don't ever be shy about anything. CD is hard to talk about...... and trust me you will get over that very quickly!
* Take Vitamins, probiotic, and take care of yourself the best you can!!

Let me know how I can help!!

Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 10/4/2007 11:49 PM (GMT -7)   
Dear are not a failure! I know it is easy to feel this way when you think you've beaten it for now and lo and behold It's back .....and chronic. Chronic disease is so hard to learn to deal with. It's good to have family and friends that understand.....but they too will become weary, from not knowing how to help, or from knowing there is nothing they can do to make this go away for you. Family and friends often feel guilty too.
Lovepink has a very necessary and practical suggestion: try to find a face to face support group. You can unload, cry , complain what you need to do do to get through this next bout without feeling llike you are burdening your family or that they don't really get it. Venting is wonderful but only to someone who can empathize not just sympathize. Of course you have Healing well. This family is a God-send. Come to us often. We are always here to listen. to offer support and advice. I know healing well has made a big difference in my life.
Accepting this disease as being a part of your life is a process and as all processes go, there are ups and downs and twists and turns is a journey....not one you have chosen but one you must travel nonetheless.Some good will come of it, I promise.
For now, Take things one day at a time....or an hour at a time if you have to. Let us know how you are doing O.K.
Love and prayers
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.

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