CD Treatment

I am newly diagnosed with CD. Been bad for several years but not diagnosed. Treated with Cipro and Flagyl for several years until it got where I had to just live on those drugs. Got a GI doc now - Seems really good - took him a week to diagnose. Started with 9mg of Budesonide. That allowed me to get off the antibiotics which is certainly a step forward. But that is mostly all it did, no antibiotics and I am not bad sick. Moved this week to Uceris - which is name brand form of Budesonide and added Apriso. I am in to this for three days now. Docs say that I should know something in a week. Humira is being discussed. Can anyone educate me a little? Is Humira the best next step? What should I expect? #1 QUESTION FOR REAL....If I get in control, will I get my bubbly energetic self back that I have missed the past 4 years?? Thanks.

This has been going on a long time - 20 years. I have had numerous colonoscopies over this time. I am 60 now, the first was when I was 40. Over the past 4 or 5 years it has really started to develop. The past 6 months or so my GP has had me on repeated Cipro and Flagyl. The first week of Feb I spent another week in the hospital - 2nd time in a year - and got a GI doc. He and the surgeon that has done a colon resection on me 10 years ago, and followed up with colonoscopies over the time conferred. The GI doc sent some blood to the lab, did an upper GI - drink the barium or whatever it was - The upper GI came out ok. Upon my return to the GI doc, he tells me that there is a positive marker in the blood work for crohn's. So with that we start the steroids. Those have kept me from getting sick without taking antibiotics for the first time in months. However, I am just staying in a flair mode - lots of symptoms. So when I see him next week I suspect he is going to move me to Humira. The diagnosis makes a lot of things that have been going on for the past 5 years make sense.

That is a little more data - I know I hit around on a lot, ask for more detail where you need.

You should definitely make the logical next step to Humira. Actually, I think Remicade should be the first choice, but either one would be good for you. Your last sentence says it all. At 60 years of age, you won't be taking anti-TNF's long enough to worry about life long effects. Hope it works out for you.

Ok. Thanks - that all makes me feel a little better. Remicade? should I ask my GI about this? The only thing they have mentioned is Humira. Or should I just go with them. I see them this coming Wednesday. So far, this crohn's thing seems like it is going to be disabling. The only thing I can do is to lower my stress level (that is what I read). I work a very high stress job - management. I might consider retiring. Anyone got thoughts about the Remicade versus Humira and getting out of the high stress environment?

My insurance pays for the Humira. It will cost me $30/month. I am blessed with that for sure. I go see my GI next Wednesday. Here is my thought... I am 60 yrs old. I have worked all my life for only two employers. I have avascular necrosis which has already got me a hip replacement this past December. CD and joint problems seem to be a marriage made in heaven to be disabling. My job has a very good LTD which I am going to discuss with my doc. Right now, I am too the point that I do not have the energy to do much of anything, my focus, thinking and ability is compromised. So, I guess my question is..... if we get the right meds in the right doses, will I be ok? or should I try to get out of this high stress environment and attempt to save myself?? That is my question for this forum..

Thank you for comments. Yes the GI has to be the signee so to speak. If I decide to go that way, either he will sign off, or I will find one that will. HERE IS MY REAL QUESTION........

If they get me on the right meds, at the right dose, will I regain my energetic bubbly happy self????

If that happens, then the picture changes you see. If not, then it is what it is. Two different pictures and I have not been able to get much guidance on that. I would like to know what others have experienced.

NCOT is so right. Even with all of the medications we have available today, there is no guarantee you will be your old self again. Crohns is very much an individual disease to treat. I had good results when I was on Humira. In your situation it may be your ticket to getting your life back. It may take a bit to fully kick in so do not expect immediate results. Never give up on thinking you will not get better. A positive attitude can go a long ways.

Take care.

Erm, I don't know anything. I just thought there might be a time limit in which you can claim LTD (long term disability?). I'm not American, so I don't know how the system for claiming disability works. Basically, if you can go on disability at any time, then I would try the Humira first, as you don't really have a lot to lose by trying it for a few months. The biologics (of which Humira is one) are pretty effective meds for Crohn's, but as with all meds, there is a subset for whom they don't work. Most biologics usually begin working between the second and third dose, and Humira is no exception to that.

It does sound like with your symptoms that you are flaring, so I really hope that Humira does help you.

Ok,,, went to my GI this afternoon. He understands that what we are doing right now is not working. He has moved me to Prednisone starting immediately and scheduled me for a colonoscopy this coming Friday.. Oh what fun.. lol.. Just had one this past December, but he wants to personally do it and says he will know a lot afterwards. Like what direction to go. We discussed all that is going on, I actually took Thursday and Friday off on vacation because I feel so bad, tired and just awful. That works with the scope this Friday. We talked about LTD and what my company has said, which is that it is available, which is nice. His response is, would it not be better if I get you back to your good old strong self. Yes was my answer. He is of the opinion that he can get me back. I am excited and hopeful. So tired of being sick... weak... tired... no fun... etc.

OK... here is what I need to hear. I understand that we are all different and what works for one is different for another. I got that. But every piece I get helps me understand better. You say after the loading doses... I think I understand that. It took a couple of doses for you to feel a little better. You could tell a difference. Tell me more, I know this is your experience, and not mine, I will share mine, your experience gives me a little to go on sort of. How many doses? How long? What was the difference you felt? OMG, I know I am asking for so much subjective stuff, but at this moment, this blog is the best information, data I got going on. Thanks for you all sharing the pieces. I will fit in somewhere in all this... You are helping. Thanks..

Billx, that is really not enough info that I can comment on. It's like an incomplete sentence, lol. However, when your dr gets the biopsy report back that is when you will receive your diagnosis. Be sure to obtain a copy of your biopsy report, you are entitled to a copy. I would trust what he is telling you about the infection & the decision to take you off of prednisone. Pred is a drug that you want to avoid as much as possible. Yes, there are times we need it, but strictly for short term use only. It sounds like you have found a good dr & this is so much better than the GP that has been treating you. A GP in this situation is not the dr that should be treating you.

Keep us posted & in the mean time, try not to stress over the waiting. I am not very good at waiting either, I don't most of us are in this situation.

Billx, ask this gi to order stool testing when you see him Monday!! I would insist that he order the stool testing. While you are there be sure to ask for a copy of the colonoscopy & biopsy report. You should always get copies of all testing for your own personal file.