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

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     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

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!

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.

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.

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?

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.