My Story

[Justice]

Hey, I'm pretty new to all of this but here goes nothing.

My name is Justice. I'm a 19 year old male and i was diagnosed with crohn's disease 10 months ago. My first presentation was a 5 day long hospital stay in which i was constantly on morphine to stop the pain from causing me to either vomit uncontrollably or losing consciousness. After i was finally discharged i was set of a assortment of antibiotics to ensure that i did not develope an infection in the site of my flare up. Along with the antibiotics i was prescribed 40mg of prednisone a day. After 2 weeks my doctor then added 20mg of imuran to my daily regiment. Still these drugs had little to no effect on the constant cramps and nausea that followed my unwanted hospital stay. After the failure of both of these drugs my doctor then booked me in for a colonoscopy which ended with me being signed up for remicade. I've now finished my initial 3 doses of remicade and i have yet to feel any better. I don't know what to do anymore. I've lost a lot of my will to continue fighting for what seems like a meager existence of pain and humiliation. I've tried finding things to do that I enjoy but it just seems like everything I ever do is just tainted with my constant pain.

Anyway thanks for reading, writing all that actually kinda help

 

[afidz]

Welcome to the forum Justice :hug:
A lot of times with Crohn's meds it takes a little while for the meds to build up and be effective. If you haven't already, take a look in the Remicade forum, there is also a Remicade Support group. I will copy the link for you. If you are concerned that the Remicade is not working like it is supposed after a while to talk to your doctor, there may be other options Are you still on Prednisone?

here is the link to the Remicade Support Group
http://www.crohnsforum.com/showthread.php?t=4544

 

[Justice]

My doctor took me off the Prednisone when it was apparent that it wasn't doing much for me and the side effects weren't really worth the continued usage. And unfortunately the last thing left after Remicade is surgery which scares the crap out of me. I know the statistics of people with Crohn's who need surgery is relatively high but it doesn't really stop that sinking feeling that this surgery is gonna make my life a lot worse. I have talked to my doctor about my reaction to the Remicade and all he has offered up is surgery as the last option.

 

[lizbeth]

Hi Justice welcome to the forum,

You have come to the right place, lots of friendly people who want to support you I like you am new to the forum was diagnosed last December and have found the forum invaluable. I know it seems like a banging your head against a brick wall at the minute but hang in there, my sister had a difficult battle with UC but once the right meds for her were sorted she went into remission and has been drug free for about 8 years now. This thought keeps me going in the darker moments, my GI is talking about surgery too.

Keep your chin up and take care. :ghug:

 

[araceli]

Hi Justice. Welcome to the forum. For some people it takes 4 or 5 infusions to feel a difference. I have not read about taking remicade by itself. Usually is a combination of meds. I may be wrong. You may want to check the remicade forum. If remicade does not work there is also Humira. A lot of people don't need surgery ever. and the ones that do, I have read they do great. Everybody is different, keep trying. I am sure something is going to work for you. Best wishes.

 

[sickofcrohns]

Hi Justice,

Are you still on Imuran? If you are, talk to your doctor. Imuran can cause pancreatitis (=tenderness, pain, nausea, etc.) I got those symptoms when I tried it. It might be that if you're still on imuran, some of the nasty stuff you are going through may be side effects of the medicine and not the Crohn's itself.

+1 on what the other posters said about disease progression and reactions to medications being very individualistic with Crohn's. I hope you feel better soon!

 

[Justice]

Thanks everyone for all the info.
I've been off of the Imuran for about 4 months now so unfortunately it can't be whats causing the discomfort.

 

[Karen]

 

[Jim (POPS)]

Justice, I saw you in the chatroom, keep coming there, we will support you and you will find that this fourm is a good place to be.

 

[Luckystar715]

Hey Justice,
Did the dr mention where you had the most inflammation? Like many have said, it takes a little while for remicade to kick in, so don't give up just yet. In the event remicade doesn't work, your doctor may choose for you to try humira before surgery. But don't be scared of surgery. When I was 21, I had surgery to where the small meets large intestine ( after remicade failed at the time due to extensive amounts of inflammation I had). It was the best decision for myself (no bag needed). I was in remission for about 5 yrs! Sending thoughts and prayers your way! Stay strong!

 

[Tesscorm]

Hey Justice,

Sorry you're having so much trouble with your crohns! :ymad: My son is 18 and just had his second remicade infusion.

As has been said above, it does sometimes take some time to find the right med or combination of meds that will work for you, and it also takes sometimes takes some time for meds to begin to have effect. Where is your crohns located?

There are other meds to try - methotrexate is another immunosuppressant (similar to imuran) and humira is another biologic (similar to remicade). And there are many people who use both an immunosuppressant AND biologic.

My son used exclusive Enteral Nutrition (EN), a liquid diet, to induce remission. 'Exclusive' refers to ingesting the formula only for six weeks - no other food - this allows bowel rest, has anti-inflammatory and mucosal healing properties. He then continued with 'partial/supplemental' enteral nutrition as a maintenance treatment (same formula but at half dose, 5 times/week - but with a regular diet). He had quite a bit of success with this but as it didn't eliminate all inflammation, he just began the remicade (but, for now is continuing with the EN). I know of, at least, one other member who found remicade wasn't enough on it's own, did six weeks of EEN with the remicade and it seemed to be what it took to induce remission and has been on only remicade since. There are absolutely no negative side effects to trying EEN (other that the challenge of foregoing food for six weeks! ) My son gained 30 lbs in the first three months! You can either drink shakes throughout the day or you can ingest the formula through an NG tube overnight (as my son does - he inserts the tube in seconds at night and removes it in the morning). If you want more info, just ask! Also, under the treatment section there is an Enteral Nutrition subforum.

Low Dose Naltrexone (LDN) is another treatment option. There have only been 3 small studies done on LDN so most GIs don't believe there is enough data to try it but it has shown some success. The treatment section also has a subforum for LDN.

Also, don't rule out surgery...:ack: I completely understand wanting to avoid going down that road BUT I have read of many members who have had surgery and had great results!! So, if the meds don't take you into remission, surgery may certainly help!!

Good luck!!! :ghug:

 

[Justice]

Thanks everyone for all the support.
I talked to my doctor and he has decided that its time for my first surgery so I get to see a surgeon next week to see when he can fit me in. Because of the surgery i will be skipping my next dose of remicade but post surgery I will be back on schedule for my appointments.

 

[Cross-stitch gal]

Been a few days since we talked and have been wondering how you've been doing. Headed for bed now, but after tomorrow will be on days off. Might talk with you then to see how you're doing. In the meantime, take care.

 

[Tesscorm]

Glad to hear you have a plan to go forward! I hope all goes well! I've heard of lots of successful stories after surgery! :thumright:

I've included a link for you to the Surgery subforum - I'm sure there's lots of info for you there.

http://www.crohnsforum.com/forumdisplay.php?f=71

Let us know how things are going for you!