Crohn's and ankylosing spondylitis

Hi all,

I normally hang out at the ostomy forum, but I have a question for you. Our 21-year-old son was diagnosed in 2004 with severe Crohn's disease. He currently takes Asacol, 6MP, and adds Prednisone and/or Rowasa enemas during flare ups. He was in the hospital for a week and had eight units of blood when this first started.

He has been doing pretty well with occasional flare ups. My husband is HLA B27 positive and has ankylosing spondylitis and psoriatic arthritis. Our son with the Crohn's is also HLA B27 positive and we knew that the possibility of AS was possible but not probable. Well, it happened. Right now he's dealing with bilateral sacroiliitis and he's starting to fuse. There is also something going on with his bone marrow, so we're going to have more tests from that - it's possible that it's Crohn's related.

My question is, we're most likely going to be offered Humira, Remicade, or Enbrel as a start for treatment. What route would you take?

I have no experience with Embrel or Humira. I have been on Remicade for about 3 years now. I seldom use my cane now and even ride my Harley. I still can not sit or stand for long periods and it is painful when I have to bend down to the floor or move in a way that is unusual such as reaching into the back of a cabinet. I know we are all different but Remicade has done wonders for me. What ever path your son takes I hope he gets relief soon...

Neon

Thanks for the reply! My son is taking this pretty good; blaming it on his dad. LOL  Luckily my husband doesn't have Crohn's. There were concerns about it long before my boys were born, but nothing ever came out of it. He does have Barrett's though. Now for an even stranger bit of information, my 82-year-old mother is being worked up for it! Strange huh? Thanks for the link!

Sniper

Thanks for the good wishes. The way my hubby explained it was that during his fusing process, that was the worst part, and then it wasn't as bad. He continues to work but has started having shoulder pain that he needs to get checked out. He has lost the use of most of his fingers due to fusing and a couple of his toes are in the same condition. He of course can't bend over but has figured out creative ways to tie his shoes.

Broomhilda

I remember when my husband was diagnosed with it that they gave him a bunch of different exercises to do. I'm assuming that they'll do the same for my son. I'm just having flashbacks to how bad it got with my husband when he was fusing, and I don't want our son to go through that. Whenever my husband has certain x-rays they always ask him when he had the 'back surgery'.

I started with Remicade for my AS and Crohn's. Prior to starting the Remicade, I had to use a walker to get around, needed help on and off the toilet and a chair, I could not bend. I was scheduled for hip replacement surgery because of severe hip pain. After my third infusion [at 6 weeks], I no longer needed the walker, assistance getting up or down and could squat down for the first time in 2 years. My hip pain completely went away - and I canceled the hip replacement. In addition, my gut symptoms completely went away.

The Remicade worked great for 2.5 years. Then it slowly started losing effectiveness. I was switched to Humira. It seemed to work okay though not as well as the Remicade. That could be due to the fact that after 2 1/2 months I had a severe reaction to the Humira. I am no longer on any biologics.

I hope that your son gets great relief from whatever medication he chooses. I will add that Enbrel is not known for controlling Crohn's as well as Remicade and Humira.

Sugarmarie

I was thinking that it might have something to do with the 6MP since it suppresses it. Thanks for the info!

Ides

That's great that you got some relief with the Remicade. Our main decision is whether to go with Enbrel which would just be for the AS since it's not indicated for Crohn's, or go with Remicade or Humira which would be good for both diseases. Luckily I work at a doctor's office so I can get a lot of information, but it's always nice to hear from someone that has actually taken it.

Blonde

Yes, the HLA B27 is checked though a blood test. The AS can be diagnosed by an MRI scan or by an x-ray of the SI joints. It's pretty sad at this point. He can't even get out of bed to go to the bathroom; we have to help him. Not too many 21-year-olds would have to ask someone to help them to the bathroom. I can even remember my husband crawling on his hands and knees to the bathroom when he was dealing with this.

You're right about the exercising. That's the first thing they told my husband to do. It helps by strengthening the back muscles. My husbands takes methotrexate for his AS and PA. Most of his joints are pretty shot though.