Hello, it's me

[Samm]

Rhonda:

That was a great introduction! I loved your story and the pictures are just awesome!
I'm really glad you joined us, I think you'll fit in perfectly.

[Lisa B]

Welcome...very nice pictures of your family!!!
LOVE the tiel one....

Check out
WWW.parrots-at-play.org

for our photo contest and rules....

[puffinp]

Great too have you here Rhonda . Those photos are incredible!!!! Like Too lover said , I'm kinda partial myself.

[Dustin]

Hi!!!!!!!!

[RhondaR]

Originally Posted by Kristi

I've got Crohn's, too. Not fun, but mine's in remission...hope your son's will be soon.

Originally Posted by poi_lover

My hubby has Crohn's disease as well. Thanks to Remicade treatments he is doing pretty good. He has had Crohn's for 31 years (since he was kid) and has yet to have any surgeries. He is lucky to not have severe Crohn's. Just last year, we found out that two other people in his family also have it.

Wow! Two Crohn's people! What do you guys do for it? I have IBS and UC, but my UC is in remission. Keith just had another Remicade infusion, he gets them every 8 weeks and has since Feb. of 2005. He still isn't in remission and it's so frustrating for him to deal with this. He's going to the camp this summer for kids with Crohn's and UC.

If either of you guys can tell me what it was like having it as a kid, I'd appreciate the insight. Keith is part terrible teen, part sick kid who needs his mommy. I want to kill one and hug the other.

Here's a couple recent pictures of him:

[poi_lover]

Originally Posted by RhondaR

Wow! Two Crohn's people! What do you guys do for it? I have IBS and UC, but my UC is in remission. Keith just had another Remicade infusion, he gets them every 8 weeks and has since Feb. of 2005. He still isn't in remission and it's so frustrating for him to deal with this. He's going to the camp this summer for kids with Crohn's and UC.

If either of you guys can tell me what it was like having it as a kid, I'd appreciate the insight. Keith is part terrible teen, part sick kid who needs his mommy. I want to kill one and hug the other.

He is a cutie! He reminds me of a kid I've seen on TV or somewhere...I just can't remember where. He just looks so familiar.

Hubby first got Crohn's when he was 16. He was very sick when he was first diagnosed. They didn't know what he had then...he was actually diagnosed with UC. Of course, they didn't have the technology back then (70s) that they have now, so I guess it was hard to tell. Later in his 20s, he was told he had IBS (wrong!). I think his doctor suspected that because he seemed to think you had to be much "sicker" to have Crohn's. After that, he never really went to the doc regarding it. He would have flares that were pretty awful, but he has never had anything like fistulas. He does have some permanent damage to part of his colon. The last 1/3 part of his colon is scarred and thickened. I'm not sure exactly when that happened.

There were some times as a kid when he got pretty sick. Even to the point where he was running a fever as a result. I still don't understand why during all those years his mother never took him to see a GI doc! He sure wouldn't have been as miserable!

We got married when he was 32 and about 7 years later he had a really bad flare. That is when I made him get it checked out and we found out he had Crohn's. He went into remission after that, had a mild flare in 2000, and then flared up again starting about two years ago and hasn't stopped since. He has *never* flared for that long, but the Remicade keeps it under control until about a week or two away from his next treatment.

In addition to Remicade he is taking Methotrexate. He was also given Colazal, but he won't take it because it just seems to make things worse when the Remicade wears off at the end of the 8 weeks. When Carey's flare gets worse, he also takes Entocort. It is a steroid, however, it is not absorbed into the bloodstream, so you don't get the steroid side effects AT ALL. Most GIs usually prescribe an immuno-suppressive drug like Methotrexate along with the Remicade. This not only helps the Crohn's, but also helps reduce the chance that you will develop antibodies to the Remicade, develop a bad reaction, and no longer be able to take it. That is, in fact, what the manufacturer, Centocor, recommends. I'm probably telling you everything you already know!

The doc recently upped his Remicade because he was having a problem (and still is) with the drug wearing off before 8 weeks. He said if that didn't work, he would move the treatments to every 6 weeks. I think that is what he will end up doing. Right now, the dosage is so strong, his immune system is really lowered after a treatment. You can guarantee that he will get sick about a week after the treatment because he always catches something.

As far as coping with it as a teenager, I can't really tell you a lot about that. He is out of town this week, but I can check with him. I imagine Kristi can probably tell you a lot more.

BTW, is it possible that you actually have Crohn's and not UC? Especially since your son has been diagnosed with Crohn's? As I'm sure you know, it's kinda hard to tell the difference sometimes.

Kristi- Didn't you tell me once that you were taking Remicade every six weeks?

[Monica]

Hmmm.......... does this help???


Keith


vs

Francis Capra off of Kazaam/Free Willy 2 (among so many more!)

[Kristi]

Cute kid!! Very handsome...

Unfortunately, I can't comment on how it was to have Crohn's as a kid...I was diagnosed on my 25th birthday (that one really sucked), but I had been really sick for a couple of years before that. I know that as hard as it is for an adult to have Crohn's that it must be terrible as a teenager. The drugs make you nuts and being sick makes you nuts...throw in some hormones and peer pressure and I can't begin to imagine how hard it must be on him.

If he's taking prednisone you can really expect him to go nuts. That's a bad, evil drug. I'm allergic to it now and can't take any kind of steroids anymore. I've not had any reactions to Remicade (every 6 weeks), but it took me a while to adjust to Imuran. I also take phenergan (for nausea) as needed and I also take NuLev and Donnatal if needed. I've got a running script for Lortab, but I won't get those filled. If my doc finds out that I've taken any paid meds she will admit me to the hospital and I refuse to go. I've taken just about every drug imaginable for Crohn's at one time or another and I've still had two surgeries for it. The first time, I had 18 inches of small intestine removed and about 6 inches and scar tissue the second time, which was a couple of years ago.

Your UC very well could be Crohn's. My dad was diagnosed with UC as a teenager, but we're positive that it was actually Crohn's now. But he's not had any problems in years. It might be worth checking out as it does seem to be transmitted male to female (and vice versa) in families.

Just be real supportive of your son and watch his diet. Too much broccoli, lettuce, etc. really hurts and can aggravate things. What works for me is when I start to flare, I go straight to clear liquids for a day or two to give my belly a rest. That really helps. And no ibuprofen...tylenol only.

Let us know how he's doing.

[RhondaR]

Thanks Ladies,

In the beginning, when Keith was at his worst (down to a very thin 91 pounds and wouldn't stop dropping)



his doctor started him at 40mg of Prednisone a day. This was on top of the 2g (thats 2000mg) of Pentasa, 20mg Prilosec, 50 mg Methotrexate, 500 mg Flagyll, 14mg zinc, multivitamins, and probiotics every day. He was the angriest teenager on the planet. Rounded Pred face for sure. We have Phenergan here for when he needs it. Although every 6 weeks Keith starts to have lots of exhaustion, joint and abdominal pain, his doctor wants to keep him at 8 weeks. We haven't used the Entocort, it sounds like it may be something to look into. Keith also drinks 6 cans of Peptamen Jr. a day. Not yummy, not cheap.. but if he doesn't drink it, he gets to tube feed it at night. He prefers drinking it.

This winter Keith and I had Mono and Pneumonia... Keith had to one up me and had Hepatitis. So, back to the hospital we went... and stayed. Five days later they sent him home, but it took almost a month before his labs looked decent. They took him off of the Methotrexate then, it can be hard on the liver and is an immunosuppressant so it wasn't helping the Hepatitis or the Mono. Keith hasn't been on it since. The doc also finally took him off of Flagyll. Keith's Remicade dosage just got raised too. We're hoping that helps him make it the 8 weeks easier. Gads.. the stories are all so similar it's sad.

I know sometimes surgeries are necessary for any hope of remission or if there's a blockage. He hasn't had one yet. Cross your fingers for him.

Why no Ibuprofen? Tylenol is hard on his liver... super...

I actually DO think I have Crohn's, I'm just not diagnosed with it because I haven't been in a flare and having a colonoscopy at the same time, YKWIM? I'm not wishing for it to flare again either. I like remission thank you. I've had upper GI issues for 2 decades...

[poi_lover]

Carey has also been in the hospital before because of the high liver enzymes due to the meds. He had a bad reaction to Imuran that also landed him in the hospital. BTW, Pentasa makes him flare even worse if he is already having problems. In remission it's probably OK, but any of that ASA stuff during a flare just seems to give him more problems. I don't know if it's a problem for your son, but Pentasa is one of the ones most likely to do that. Carey has sworn off all of them for right now. He still hasn't had the guts to tell his doc he is not taking it!

Carey gets the joint pain as well when he is having a bad flare. The last time he was in the hospital (Johns Hopkins...which of course is a teaching hospital) every couple hours someone would come in and ask, "Can I press on your stomach?" Carey was sore and eventually got to the point where he was like, "NO WAY!!! DON'T TOUCH MY STOMACH!!! @#$%&!!" He is usually pretty quite and mellow and doesn't get upset easy, but that day he had totally had it!

By hepatitis, you mean liver inflammation as a result of the drugs, correct? That's what they called it when Carey was in the hospital just because it means liver inflammation. I was like, "Hepatitis? He doesn't have hepatitis!" LOL! I got to learn the true meaning of that term.