CROHNS DISEASE

HI EVERYONE,

I JUST BECAME A MAMBER. I HAVE BEEN LIVING WITH CROHNS DISEASE FOR FIVE YEARS NOW AND IT SUCKS. I WAS DIAGNOSED WHEN I WAS 17. NOW I AM 22. I HAD SURGERY about 2 YEARS AGO ON MY INTESTINE WHICH THEY TOOK OUT about A FOOT OUT AND MY APPENDIX. I FELT GOOD BUT THEN about FIVE MONTHS AFTER I HAD THE SAME SYMPTONS. I AM ALWAYS IN PAIN AND DISCOMFORT TO WHERE I CANNOT SIT STILL FOR LONGER THEN 10 MINUTES. MY DOCTOR TOLD ME AFTER SURGEY I SHOULD NOT HAVE ANY SYMPTONS FOR AT LEAST 3 YEARS BUT MY SYMPTONS STARTED 3 MONTHS LATER. I AM ON ENTOCORT(STEROIDS) 3 PILLS A DAY WHICH DOES HELP WITH THE PAIN AND DISCOMFORT TO A CERTAIN LEVEL. I AM ALSO ON 6MP BUT HAVE NOT FELT ANY RESULTS. I AM WONDERING IF ANY KNOWS ANYTHING ELSE I CAN TRY TO HELP WITH THE PAIN AND DISCOMFORT?

ALSO LATELY I HAVE BEEN GETTING PAIN IN MY CHEST. WHICH GOES AWAY AFETR A COUPLE OF MINUTES. ALSO WHEN EATING I START TO GET ALOT OF SALIVA IN MY MOUTH WHICH LAST FOR A WHILE I DONT WHAT IT IS BUT I KEEP ON SPITTING.

MY MAIN CONCERN IS MY WEIGHT. I HAVE BEEN STRUGGLING TO GET MY WEIGHT UP FOR YEARS NOW BUT CANNOT. ITS LIKE I DONT HAVE AN APPATITE. I ONLY EAT about TWO MEALS A DAY. WHICH IS NOT TOO BAD CONCIDERING I DRINK ENSURE(NUTRITION DRINK) about 2 A DAY.

 

Hi Monkey!

I'm sorry you've been in so much pain! Have you ever been on prednisone? I was on both entocort and 6-MP and neither really worked for me. Unfortunately my doc had to put me back on prednisone. To date I have been on asacol, prednisone, 6-MP, entocort, and now I'm on remicade in conjunction w/ prednisone. Unfortunately prednisone is the only medication that actually keeps me in remission (I just got put back on my full dosage this morning due to a recent awful flare...arg). We are going to give one more remicade infusion a try for me, and if it doesn't work my doc is going to put me on Humira.

I would ask your doc to switch up your meds if you feel like the entocort or 6-MP is not working for you. Neither worked for me. Crohn's sucks b/c it is basically a guessing game until you find out what meds work, what meds don't work, what foods work, what foods don't work, etc etc Trust me, we all feel your pain! Talk to you doc about getting different meds =)

Prednisone has been the miracle drug for me, but the side effects have been brutal. I've been on and off of prednisone for the past two years and it always kicks me into remission but has caused osteopenia in my spine (I know take Fosomax for it). I would still rather risk bone thinning then be in awful pain with flare ups.

Definitely talk to him about prednisone! I'm surprised he hasn't used it on you yet. That's so strange! Keep me updated!

Welcome to HealingWell, but I'm sorry you must be here..

Sincerely,
Matthew

I dont eat vegetables, spicy foods or drink. but i can eat fruit that has no effect on me. i also dont drink soda because the caffeine does bother me.

i heard of peole that cannot eat dairy products because it bothers there stomach, but then again everybody different.

My son has Crohns Disease. He has had it for a little over a year now. He often wakes up feeling sick in the morning. Do most people feel that way in the morning?

Hi - I am new here.  My story-  I started having D and gas pains that felt like a contraction after my son was born 11 yrs ago this June.  I ignored it until 2 years ago I started getting this pain in my lower right abdomen and I could not walk after a couple days of this I went to the ER and was admitted for an absces on my illeum that had burst.  They kept me there for a week doing tests than diagnosed me with Crohns I had to have a drain put in my stomach and I was on flagyl and another antibiotic.  When that cleared up and the drain was removed I developed a fistula at the wound site. I was on Prednisone and flagyl until that cleared up than I was put on Asacol and Remicaide. I still had the same D but alot less gas pains. about a year ago I developed the same kind of chest pain you just mentioned.  My primary dr sent me to a cardioligist and for a chest xray my gastro dr sent me for an endoscope nobody found anything but it kills especially when I have a bra on. about 4 mos ago I asked to switch to Humira becuase I was sick of using all my vacation time to get the REmicaide.  The Dr. switched me and the Humira gave me hives all over my face that lasted for weeks not just when I gave myself the treatment.  So I called the Dr after about a month of this.  He told me I had to get off the Humira so I said can I stay on just Asacol for a while to see how that works he said if I schedule a colonoscopy.  My colonoscopy was scheduled for last Thurs about a week before I started having terrible pain in my stomach and chest.  I called the dr and he put me back on prednisone.  After the colonscopy my dr said my colon was extremely swollen.  So I am back on REmicaide and still on the prednisone and my asacol.  I had my first treatment yesterday and am feeling better.  But to me I swear things were better when I did not know and did not have to go thru all these tests and all this medicine and treatments.  Sorry this post is so long but this is the first I am able to tell this all to people who understand. 

Thank you monkey.  Currently I am on 10 mg Prednisone, 6 Asacol a day and the Remicaide every 8 weeks.  I am actually feeling pretty well since the treatment last week.  Remicaide works well for me I just hate using all my vacation time to go get treatments.   

 

I have some Dizziness that day and a headache but feel better by the next day.