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Odin4
New Member


Date Joined May 2008
Total Posts : 12
   Posted 9/5/2008 8:22 AM (GMT -7)   
Hey everyone, I'm 20 years old and was recently diagnosed with CD this past March. Things started off slow with very little symptoms even though my doctor said it was a very extensive case of CD. I was told my esophagus, small intestine, and large intestine were inflamed in many spots which made sense because I couldn't swallow food and was bleeding when I had movements. I started on prednisone which really helped me alot. I felt better within a week or two. It initially seemed like an easy disease to deal with until a couple months past and I really started to notice changes in my every day life. I all started when I was 2 hours from home at college. When I got back home for summer break, I was excited to be free and have lots of fun. However, they wasn't possible because my symptoms really started acting up. I missed at least 1 day of work a week because I was really embarrassed and didn't want to be running back and forth to the bathroom or dealing with stomach pains in the office. My doctor had me on 6mp for a while until we decided to try an increased dose of 6mp and cipro instead of going the remicade route right away. Things seemed to be improving for a while until things took a terrible turn for no reason. I felt I was doing everything right, staying away from the right foods, etc. This had been going on for a month or so. Now I'm back at college and really don't want to deal with my symptoms during classes and around my friends. It makes me feel very uncomfortable. This past Wednesday I went to see the doctor who asked how things were going and I told him all the details about how many times I run to the bathroom, how many pains I have, where they are, and (worst of all) how many times I've had movements while I was sleeping. We both decided it was time to step up to remicade. I'm curious to hear some positive stories and experiences with this treatment. I need some positive feedback because I'm a little skeptical about it after reading some of the negative things in some forums or in the news. My first treatment is this coming Wednesday. Can you all enlighten me on your experiences to boost my confidence? Thanks!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 9/5/2008 3:17 PM (GMT -7)   
Odin4 - Welcome to Healing Well! I'm sorry that your symptoms are causing you so many problems. Cutting to your desire for feedback - Remicade put my guts into remission about 4 months after starting it. That was in early 2005. My guts remain in remission today. I had to stop Remicade last year because of it no longer helping my ankylosing spondylitis [AS is also treated with Remicade]. I am on Imuran to maintain my gut remission. I had a colonoscopy last year and all areas of previous inflammation were healed.

I hope that Remicade works as well for you as it did for me! Remicade got me off the toilet, out of that house, and enabled me to lead a more normal life style.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 9/5/2008 4:04 PM (GMT -7)   
Hi Odin4 I'm sorry to hear the Cronhn's is giving you grief. I was diagnosed 7 years ago when i was 19 with Crohn's. I started out on the "light" drugs i.e., pentasa, asacol, colazol.rowasa enemas, azulfadine, you name it I was on it. Of course then there's the steroids prednisone and entocort. Been on both. Nothing was working. Then my gi doc put me on 6mp. Felt fine for a couple of months then flared. Went in and out of the hospital many times over the past couple of years. Then we went to remicade. I hated taking the remicade. Hooked up to an iv infusion while they dripped this horrible crap into my body. but you know what it worked for about 4 months then i stopped responding to iy. but for the while it was great. i felt so much better. go for it. if it works for you which i hope it does it's well worth it. don't be afraid. then i went on humira. also worked for a while then i stopped responding to that as well. ended up in the hospital 4 weeks ago with 104 and 105 fever. I ended up needing a temp. ileostomy. the surgeon removed a foot of my small bowel. fortunately my crohn's was only in the terminal ileum and a little bit of inactive crohn's in my rectum. they removed the diseased part and i am disease free right now. don't be afraid to try all the medications to try to get you into remission. i know life feels like a living hell when the crohn's is flaring. just try to stay positive and i hope everything works out well foryou. do the remicade. don't be afraid.

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/5/2008 8:50 PM (GMT -7)   
My crohn's surfaced my senior year of college... I feel for you Odin, I really do.

I started Remicade after piddling around with the normal stuff (6mp, Purinethol, steroids, imuran, etc.). I was one of the lucky ones that felt relief from the Remicade almost immediately. It put me into remission quick, and it kept me there for a little over 2 years.

It's a scary drug, I know. But you have to weigh the fear against your quality of life. Remicade, without a doubt, saved me. And even though it stopped working and I'm starting Humira now - I wouldn't change a thing.

I'm sorry you gotta be here, but I'm glad you found us. :-)
Good luck with everything, and keep us posted!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Tj1
Regular Member


Date Joined Jul 2008
Total Posts : 71
   Posted 9/5/2008 10:24 PM (GMT -7)   
I just had my second Remicade infusion. I had the first one while I was in the hospital one month ago. I was on TPN and very sick. Now I am back to work and feel better than I have in a long time. I'm still weak from being so sick but I feel good. There are some scary things that might happen with this med but losing parts of my insides is scary too.
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 
 allergic to Asacol
 Colazal made it worse
 Prednisone 20mg X2 daily   
 Flagyl 500mg X2 daily
 First Remicade infusion 8-9-08
 
 Toprol XL --  Hypertension
 Insulin   --   Diabetes 


Odin4
New Member


Date Joined May 2008
Total Posts : 12
   Posted 9/6/2008 8:49 AM (GMT -7)   
Thank you very much everyone. I just have to keep positive and realize if it works for me, it's going to make everything so much better. I just want to feel anywhere near 100% again.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 9/6/2008 9:29 AM (GMT -7)   
Hi and Welcome,
I have been on Remicade for 5 years and It has helped me alot. I hope the remicade helps you.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/6/2008 9:56 AM (GMT -7)   
Welcome to HW! This coming Dec. will be my 4 yr. anniversary with remicade! It has given me my life back! Don't be afraid, go in there with a positive attitude! Keep up updated.

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 9/6/2008 3:52 PM (GMT -7)   
The remicade has been wonderful for me! I was steroid dependant and nothing else would work...now I'm off the prednisone and the best I've been in ages. "GO 'CADE GO"!!!

Good luck to you and welcome!

Bev

oldcronny
New Member


Date Joined Aug 2008
Total Posts : 14
   Posted 9/8/2008 4:52 PM (GMT -7)   

Odin4, my niece is in her second year at university and has been on remicade for both of them.  She is doing fantastic.  In fact about a week before she is due for her next infusion, you can see it in her.  She is dragging.  After her treatment she looks great.She takes her treatment with benadryl first so she doesn't have a reaction to it. She sleeps for the rest of the day afterwards and then she is raring to go.

 Also, i am not sure if this is available at you school, but she is registered with thier " disability program"  All it means is that she has the oportunity if she isn't feeling well to alter her classes & her exams can be done privately with a bathroom nearby just for her.  She  would not take advantage of these things last year because she wanted to "fit in" but she assures me, she will this year.

I wish you luck with both school and remicade.


Odin4
New Member


Date Joined May 2008
Total Posts : 12
   Posted 9/11/2008 3:13 PM (GMT -7)   
Well I just got my first infusion yesterday and so far I've been feeling better. I have alot more energy than I used to and am not having any problems after I eat. Stomach cramp here or there but nothing compared to what I was experiencing. I've been eating alot today, almost as if I hadn't eaten in weeks. I didn't expect to see this type of improvement on the first day after the infusion but I'm not complaining one bit. One thing I'm also hoping for is a large amount of weight gain now that I'm taking this medication. I've read articles on unexplained weight gain and, honestly, I hope it happens to me because I'm pretty darn skinny. Has anyone experienced weight gain when they transitioned to this medication? If so, how long was it before you noticed the difference?

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/11/2008 5:52 PM (GMT -7)   
Hi By the sounds of things you will probably gain soon. So glad to hear you are feeling better. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 9/11/2008 6:49 PM (GMT -7)   
lol this thread makes me wanna try remicide,i only ever gained weight when had my eliostomy put on tons of weight it was great! once you get you crohns undercontol you should start putting on weight,im still waiting to get better enuf to put on weight
dx 17 aug 2007
21 yrs old
23 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/11/2008 7:56 PM (GMT -7)   
That's great news Odin. Keep eating and keep us posted!
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/11/2008 9:38 PM (GMT -7)   
Starting college is tough on Crohn's for several reasons. First is the stress. The known causes of relapse include - gut infection, stress, NSAIDS (aspirin, ibuprofen), alcohol and antacids. The diet connection is also harder to control unless you are cooking all your own food - you just don't know what they put into the food that is made by food services, restaurants and so on. There is also the tendency to eat more sugar and starch which can cause trouble. Given that controlling all those factors is well-nigh impossible at college, what choice do you really have?

Odin4
New Member


Date Joined May 2008
Total Posts : 12
   Posted 9/11/2008 9:51 PM (GMT -7)   
Exactly the predicament I'm in right now. I'm a junior in college now and was used to eating whatever looked good to me. Now, I have to be careful about what I eat in the cafeteria or at the places around campus. I have to be very cautious about what I eat. Lately I've been making more trips to the grocery stores to get foods I know that my stomach can handle. Unfortunately that's going to cost me more money considering my meal plan is already paid for. I know people say that once you get things under control you will gain the weight again, but I'm only about 15 lbs less than what I was before i started having trouble. I'm wondering if this medication will have the same effect that the prednisone had on me. I'm normally about 157 lbs. When I was on prednisone I went made it up to 170 lbs and I like it besides the chubby cheeks. Right now I weight 142 lbs. Being a 6'1 male, I'm pretty skinny and always had trouble gaining weight because of an extremely high metabolism.

As far as the effects of the medication, I feel great after this first day. I've been able to eat without feeling sick or having stomach pains. The fact that I didn't have any reactions during the infusion and haven't gotten any sudden side effects makes me feel great about continuing it. I feel so much better than I used to and it's a great boost of my spirit. I had read a lot of posts where people said it brought their life back, and after this first day, I'm almost confident that I will be saying that down the road. I see good things and I'm very excited to see what happens in the next few weeks.

eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 9/12/2008 3:58 AM (GMT -7)   
hate how with crohns you have to be very careful what you eat.people think your anonrexic like b4 my surgery i wld haf half a ham sandwhich and tke the crusts off when i use to go out for lunch with my mum,and ppl wld stare at me,had the iron infusion nurse trying to fatten me up by asking constanly if i was hungry,i got dwn to 105 pounds when i was real sick and now im 119pounds,how long have you been sick with crohns?
dx 17 aug 2007
21 yrs old
23 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Odin4
New Member


Date Joined May 2008
Total Posts : 12
   Posted 9/12/2008 7:29 AM (GMT -7)   
i was diagnosed in march of this year. Just after my spring break. I've always tried to gain weight since I was in high school but it seemed almost impossible. Now that I seem to have a enormous appetite I'm hoping I'll gain. It's no fun getting stared at when you're eating or getting comments about eating more. I know how you feel. I could barely finish half a sandwich when for a couple months this summer. I normally eat alot of food and people would be surprised when I'd turn down food that I normally love because I was scared if I ate it I'd feel worse.
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