Help

[MMKIDD]

help

Hi, i am 17 and have been diagnosed with severe chron's for about a year now. since then i have never been off prednisone completely and am now going into my 4th infusion of remicade after 6mp had minimal effects. so far the remicade has worked a little better but nowhere near where i thought it would. i am very frustrated and feel that there is no end to this. currently, my tests show no inflammation markers however i am having pretty frequent pain, bowel movements and no formed stools. there hasnt been any blood in a while now so maybe i am think i am slowly getting better but cannot be sure. is there anyone going through or has gone through the same thing? thanks in advance.....

 

[Grant]

MMKID, hi there. Sorry that you've had an extremely rough time. Inflammation markers aren't always 100% positive, for instance mine say everything is fine but I knew the disease was back & so its proved.
The fact you haven't had any blood recently I would say is good news, it probably means that the remicide & pred is working slowly. Diarrhea is such a feature of Crohns, some people even go back to normal bm's when in remission others its diarrhea all the way even when in remission because of previous surgeries.
The pain is typical of active crohns but has it got better @ all as in not quite so bad?
Also how about asking for something for the diarrhea? If you could decrease the amount of BM's it may just make you feel better.
I'd imagine that your specialist will keep a close eye on you over a period of time to see what progress your making. Its good news that you've had no surgeries by the look of it, if they can get it under control you may go back to normal bm's.
You've found a fantastic support forum & your not alone, hope things improve for you very very soon.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[David]

Greetings and welcome. I'm sorry to hear you're having so much trouble I feel for ya!

As you're on Remicade, you may want to check out our Remicade support forum. If you read through the threads there, I have no doubt you'll find people experiencing very similar issues to you. And you're of course also welcome to post specific questions.

We also have a teen forum just for teens. If you're interested in getting the password, just PM me

Again, welcome

 

[xJillx]

HI MMKID and welcome! I am sorry Remicade isn't giving you the relief you were expecting. Are you taking the 6MP along with Remicade? Sometimes people need a combination of meds to receive the best results.

But it does sound like you are improving being that you no longer have blood. I sure hope you start feeling better soon!