Newly diagnosed

[Don]

newly diagnosed

Hello everyone:
I have just recently been diagnosed with Crohn's after a short period suffering symptoms. I have a couple of questions -
1st - I think I'm a little unique in that I am being diagnosed in my mid fifties - I understand that Crohn's normally manifests itself in 20-30s. Is there anyone else out there in the same situation?

Also, the doctor wants to start me on Humira - would like some feedback on how others were able to handle drug, and did it help?

Thanks

 

[Crohn's 35]

Welcome Don glad you found a place to get feedback and information about the disease. As a general rule most Crohns are diagnosed in the mid 20's and the next bout at 40 and then 50ish. They are only guidelines, for statics of persons having the disease. Sometimes you can have the disease for a long period of time, I had symptoms of D all the time from age 15 but my Crohns manifested at 32 and up and down since and 2 resections.

I have been on Humira, it did work for a period of about 4 months but not steady. Most people are started on Remicade. I guess the biologics are the way to go nowadays, right off the bat.

Where is your Crohns and how long have you been diagnosed? Hopefully Humira is just what you need to calm your symptoms. ARE you on any drugs now?

Lots of advice headed your way, people here are helpful and have a chuckle or two to get through some of the rough spots.

 

[pain in the butt]

Welcome Don, Glad you joined can't help much with Humira has you doctor talked about any other med. Hope your doing good today, keep us posted.

 

[imisspopcorn]

:welcome: Don.....I think there is an increase rate of diagnosis again (after 20-30 years of age) usually aged 60 and over......This disease is just plan strange in how it manifests itself in different people....Check out the Humira club thread in the treatment section. There is a lot of and personal info and experiences there.

 

[Don]

My Crohn's was only diagnosed a couple of weeks ago - after a sudden flareup with obstruction and stint in the hospital. It is located in my terminal ileum.
I originally was put on Predinose (60mg /day) and gradually have been reducing to 20mg but acute symtoms are now returning.

Having some problems understanding the disease - the acute flareups vs the remissions etc. Used to taking my medicine and putting it behind me.
Again, probably unique no symptoms until my mid-fifties.

 

[Crohn's 35]

Yeah Prednisone works great in the beginning and then when you taper it comes back. It is a mask to me...my doc is trying to get me back on it, but I dont want to, been too many times, I had my bone density yesterday and I guess that is to prove to me I can still be on it. Entocort for now. I have a CT scan Monday and see the Gi on the 18th. Deciding then what is next.

Obstructions are not fun! We understand that one. Hope the Humira works for you, do you know when you will start? I believe you have to have a chest xray first.

 

[imisspopcorn]

It may take some time to have remission......always let your GI know when you are feeling sicker....You may need a longer Prednisone taper and another med in conjuction. My disease is in the terminal ileum as well....Keep asking questions, we are here to help.

 

[kenny]

Hi Don. I had minor troubles for about a decade or so that went undiagnosed until the age of 42. We seem pretty close in symptoms and age. I had a frustrating battle accepting the situation because I felt powerless at first. There seemed like nothing I could do to fight this thing. But I found ways to combat the sucker and am feeling like I got ahead of it now.

That first Big Flair that gets us so sick we get diagnosed is nasty for sure. Everything else in my life came to a compete standstill. For six solid months my life completely revolved around the hospital and my couch at home. But I am finally moving past that and on my way back to the real world.

 

[Don]

I currently am on both Prednisone and Asacol, and B12 injections. Not exactly sure when I'll start the Humira - have to have a PPD and Hepatitis B lab work, etc..

 

[alexandros8]

Hi Don,

The thing I've had the hardest time understanding is that you've got to treat Crohn's with something. I personally hate meds, but I've had to deal with them since diagnosis. I specifically wanted to avoid getting on the biologics, but after a long talk with my GI and a second opinion at Emory, it makes the most sense for an aggressive case. While the 9 months I've had of biologics couldn't reverse my condition, I do feel better.

Make sure you investigate all your biologics options. I went with Cimzia because its an easy self-injection once a month. It gets delivered to my house and I dont have to wait anywhere to get it done.

Good luck!!

Alex

 

[GoJohnnyGo]

Howdy Don,

I'm close to your age too. I was diagnosed 20 years ago. I've been lucky for the most part in that surgery bought me over a decade of drug-free remission.

I too am about to go on Humira, although in my case it's to address Crohn's-related arthritis.

Nobody has exactly the same experiences with the disease, but we can all understand how it impacts.

You're with good people here. We all come from different walks of life, but we are all stuck in the same foxhole.