Is it too soon for me to be doing the happy dance??

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

Lori M
Regular Member


Date Joined Aug 2010
Total Posts : 65
   Posted 8/23/2010 7:17 PM (GMT -7)   
Hey Chrohnies,
 
I am only a little over 3 weeks into my dx for CD.   I went through a pretty rough 3 months prior to my dx with of course the digestive problems, a ton of weight loss and horrible arthritis pain in my knees and ankles, and was so happy to finally know what was wrong and begin treatment.  Upon the dx, my GI put me on 40 mg  Prednisone and 1200 mg Asacol per day.  Almost immediately I felt relief (I'm serious, it was like an hour after my first pred and my legs felt 100% better).  I've been tapering the pred by 10 mg a week, so I'm now at 20 mg per day.  I feel a little achey for a day or two after a taper, but other then that I feel great!  I have really good energy (hello Pred!), and I'm only going once a day, not totally formed, but not totally D either.  I've had some hair loss, not sure if it's from the meds or from just plain stress.  My hair stylist says it's stress because I have a couple of perfectly round bald spots on the back of my head that he says are stress points.  Could be a combination of both, but either way, I'm not bald yet.  My skin and hair are as soft as they can be (maybe the extra Vitamin D?).  I haven't had any acne problems or moon face or weight gain or an urge to kill my husband   wink   which I was worried about with the Pred.  I sweat a lot, but I can deal with that.  I'm eating pretty much anything I want, although I've cut out alcohol, caffeine and anything carbonated.
 
I feel a little guilty about posting this, given that so many of you seem to be hurting so badly and i'm feeling so good.  And half of me thinks I may be jinxing myself for even questioning it.  But my question to you, since so many of you have been dealing with this DD for so long, is am I being overly optimistic in thinking that I'm on the road to remission?  I wonder if the Pred is just masking the symptoms and when I'm totally off it everything will go back to the way it was before (I'll still be taking the Asacol for maintenance).  I worry about that awful arthritis pain more than anything else, especially since I can no longer take my beloved ibuprofen. 
 
What was your experience after your initial diagnosis?
 
Thanks so much - your experiences and advice are so valuable to those of us that are so new to this.
 
Lori
46 years old. Diagnosed with Crohn's August 3, 2010
Started prednisone on 8/4/10 for 4 weeks (40 mg 1st week, 30 mg 2nd week, 20 mg 3rd week and 10 mg final week)
Asacol 1200 mg 3 times a day

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 8/23/2010 7:25 PM (GMT -7)   
You could be on the road to remission, but no one could tell you for sure.   I feel wonderful while I'm on prednisone, but once I'm off I go back to being sick.  When your off the prednisone you should have a better idea of what's going to happen.
Diagnosed at 16, 23 yrs old now.
3 Bowel Resections, gallbladder removed, 3 abscess cleanings, fistula repair
Current Meds: Methorexate, Cimzia, Welchol, Nexium, B12 injections, Opana ER, Oxycodone, Paxil.

Aces High
Regular Member


Date Joined Aug 2010
Total Posts : 95
   Posted 8/23/2010 7:44 PM (GMT -7)   
Hope you're on the road to remission. I just got officially diagnosed today, but I've been on 12 Asacol a day for about 2 weeks and haven't really seen much difference. I have "good" days, and bad days. I don't mind the frequent trips to the bathroom as much as the massive amount of fatigue-it makes work so much harder than it should be, and I fear how I will cope with school coming up. I actually quit 1 of 2 jobs I have because I know I won't have the energy for 2 jobs+school.

Hope all stays well with you!
21 years old, Diagnosed w/ IBD 8/9/10. Dx w/ Crohn's 8/23/10
12 Asacol/day, probiotics

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/23/2010 10:02 PM (GMT -7)   
I definitely wouldn't get your hopes up just yet. Sometimes prednisone makes you feel so good, and yes, it can mask a lot, just like pain medicines can. The true test will be how you feel as you start tapering down from the pred. Then you'll know if you're really doing better, or it was the medicine making you feel that way. Either way, enjoy feeling great!!

I hope things continue to get better for you!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/24/2010 1:42 AM (GMT -7)   
There is nothing wrong with celebrating a good day or period of time. It is way too soon to say you are in remission and like a previous poster mentioned, you will find out if you are in remission when you are off of prednisone all together. Part of having this disease is realizing that you are going to be on a rollercoaster of ups and downs with this disease. The thing tha you pray for is to have more and longer ups than downs. Always be optimistic and grateful for the good days because they are going to carry you through the bad ones. For some of us we have never had true remission since before diagnosis and I have learned to now be grateful if I have a few good hours in a day. Some people go 20 years between flares and I think most of us are pretty envious but I am still grateful for my good days. Since 2003 when I was officially diagnosed, I have thought so many times that I was in remission and pushed myself too hard. What I was not being realistic about is that there is no cure for this disease and it has to be treated not only when I am feeling sick but also when I am feeling good. Diet, exercise, and maintenance medications should now be part of your normal life and it was something that took me a long time to accept and at a great cost physically and emotionally. I ended up having surgeries and hospitalizations because I felt good and didn't think I needed medication any longer. I was in complete denial that I had Crohn's disease.
I am not trying to rain on your parade and I challenge you to continue the positive energy. Always be optimistic but be a realist at the same time. 3 weeks is not a long time to have this disease and there are still a lot of good things to learn. Utilize this website and learn from the veterans here so that you don't make the same mistakes that we made in the past. Learn everything good and bad about this disease and make your knowledge your number 1 tool in your combat. As for the happy dance, dance away anytime that you are feeling good. You deserve to have fun in life.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/24/2010 7:20 AM (GMT -7)   
I have had Crohns for nearly 35 years and most of the time my Crohns has been considered mild. So while yes the Pred could be helping, sometimes there are some of us who are just luckier and can be maintained with the lesser meds such as Asacol. I myself am maintained solely with Asacol. Both the Pred and Asacol can cause some hair shedding. I would recommend adding some Folic Acid and if you can stomach it Biotin also helps with the hair shedding. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

medicate
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/24/2010 5:14 PM (GMT -7)   
I've been on several courses of pred over the past 6 years. They were all short. I also went through methotrexate and azathioprine which did nothing and infliximab which was again short lived. But 3 fistula ops. whenever my doc asked how are you? I always started I'm ok before describing the misery. Staying optimistic is vital. I final started on Humira last year and since I've a few acute incidence but otherwise I've scuba diving, cycling and camping(toilets 5minute walk away). So year you could fine after or worse maybe waiting. co keep positive and enjoy the good days. Only very occasionally I worry about the bad days coming back but it makes me appreciative of how I feel now.
Crohns diagnosed 7 years. On Humira, pentasa and nexium. Maintain healthy blood count for 15 months without iron yey! Age: 29

Post Edited (medicate) : 8/24/2010 6:22:51 PM (GMT-6)


medicate
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/24/2010 5:20 PM (GMT -7)   
Also in the sickness time I qualified and became a teacher. I got married and divorced. I am doing a part time MA, I bought a flat, got promoted twice. I have now been with the best guy ever for two years. So don't give up your life fit good things in and deal with bad.
Crohns diagnosed 7 years. On Humira, pentasa and nexium. Maintain healthy blood count for 15 months without iron yey! Age: 29

Lori M
Regular Member


Date Joined Aug 2010
Total Posts : 65
   Posted 8/24/2010 5:42 PM (GMT -7)   
Thanks you guys for all your input. I guess I needed a bit of a reality check! I know in the back of my mind that maybe I'm counting my chickens before they hatch, so to speak, and that once I'm completely off the pred I'll have a better idea of where I'm at. It just feels so good to feel good after all those months of sickness, I just can't help but be a bit overly optimistic. Oh and Nanners, I stopped tonight on the way home and got some folic acid for the hair loss, along with a probiotic, which I notice a lot of the members take. I eat Activia every morning, but couldn't hurt to supplement, right? I wasn't sure what to get - I ended up with Finest Natural 10 Billion CFU. Is that in the neighborhood of what I should be taking?
46 years old. Diagnosed with Crohn's August 3, 2010
Started prednisone on 8/4/10 for 4 weeks (40 mg 1st week, 30 mg 2nd week, 20 mg 3rd week and 10 mg final week)
Asacol 1200 mg 3 times a day

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8561
   Posted 8/24/2010 8:53 PM (GMT -7)   
Tbh, I'm glad to see somebody is happy and, above all, hopeful.

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/25/2010 5:02 AM (GMT -7)   
It sounds like the pred is doing what it is supposed to. The next step is to work with your GI to select the right long term maintenance med that works for you. I would suspect he may recommend 6mp or imuran which have a long and proven record of sustaining remissions. I am not sure asacol is strong enough for long term maintenance use, although some use it. If you go with asacol after the pred ends, I would be very wary of returning symptoms and act quickly to step up to something stouter.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 8/25/2010 5:16 AM (GMT -7)   
Folic acid supplementation should be in the range of 800 mcg to 1000 mcg (or 1 mg).
 
The probiotic looks good - it has only Lactobacillus, which is recommended by the author of the book, "Breaking the Vicious Cycle." She warns against using other probiotics, particularly Bifidus. More info here: http://www.breakingtheviciouscycle.info/knowledge_base/kb/bifidus.htm
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 1:02 AM (GMT -7)
There are a total of 2,734,543 posts in 301,224 threads.
View Active Threads


Who's Online
This forum has 151337 registered members. Please welcome our newest member, hellokd10.
161 Guest(s), 3 Registered Member(s) are currently online.  Details
Laceymyaalayah, Girlie, celebrate life


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

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

Advertise | Privacy Policy & Disclaimer