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Struggling

Hello everyone, I'm Tina! I'm 22 and was diagnosed with Crohn's in early '05. My husband is in the Army and we just moved to Fort Richardson, Alaska from Texas... and apparently this move has been harder on me than I thought. My Crohn's is flaring up... worse than it ever has. And I'm in more pain now than I have ever been. And not being able to get the treatment I need up here just makes it worse. I'm really struggling with all of this, and I am so thankful to have found this site. I have so many questions and I'm becoming depressed. I can talk to my husband, but it's not the same. He doesn't understand what's going on with my body, he just knows it hurts me.

I've been to the ER twice in the past month for stomach pains and pain killers don't help it. The first time they gave me delotted (sp?) and when it went in, my whole body ached terribly. It took the pain away eventually though. Last time they gave me morphine and it just made the pain worse. Percocet don't work and neither does hydrocodone. I know those aren't good for me, but my new GI is actually out of town.... just great huh? I'm scheduled for a colonoscopy, upper GI scope, and a botox injection at the end of this month, but I can't wait that long to get some kind of relief. I have taken Remicade in the past and that was my miracle drug, but I quit getting it because I had no insurance at one time, then I got married. I'm hoping it will still work for me. And hopefully I can get it when my GI gets back in town. Right now I'm on Imuran, Asacol, Prednisone, and some kind of stool softener, but it's doing nothing.

Sorry if this is all kind of random. I'm doped up right now, haha. And I just needed to get this out. I need someone to talk to. So thanks y'all for listening to my rambling. And I look forward to getting to know y'all!
 
Welcome to the forum.

Since you live in Alaska now you may want to try eating plenty of the fresh Salmon and other deep sea fish for the fatty acids. These fish oils are effective against inflammation and you have to eat something anyway.

I am not sure why your doctor did not give you Remicade since you knew it worked, but maybe he will next visit.

Good Luck

D Bergy
 
Welcome. Sorry to hear of all the pain you're in. I'm sure you've tried altering your diet and such, probiotics, soft foods, etc. I'm surprised the painkillers you're taking haven't provided any relief. It sounds like you really need to get in and see your GI and find out what's going on. Hopefully he'll be back soon.

My GI told me that once you start taking Remicade you have to keep taking it in order for it to be effective. He seemed to imply that if you stop, and then start taking it again, it won't work. Don't know exactly why. But if that's the case, you could also talk to your doctor about Humira which is similar to Remicade and is used a lot when/if Remicade stops working.
 
H

HDGirl

Guest
Reply to Tina

Tina, I am new to the forum too. My boyfriend suggested to find a forum for support. I have had Crohn's for many years and feel your pain. My advice may not be much, but I have had a few go round with Crohns and so far I'm still winning!

I do a lot of traveling. Every climate is different and our bodies react differently. For example: I live in IL and every time I have to go to California, I get sick after being there 2 days. Once an attack starts, it's like a ball rolling down hill. The climate change and the stress of moving and having a man in the military helps to weaken your immune system and the ball starts rolling. I wish I could ease your pain, but I can't. I too am having problems and there isn't a perscription I have tried that I'm not allergic too or that helps. This is going to sound extreme and it's really difficult, especially for a person like me who loves food, but consider giving your bowels a rest. Drink protein shakes and only soft foods. Drink plenty of water. Stay away from acid, caffine, red meat, and ruffage (salads). Find some good vitamen suppliments to keep your nutrition up. Give your body a vacation. Try some deep breathing or yoga, this helps me with cramping. I have found when I get upset, it gets worse. When I give in, it takes over. If remicaide works, keep searching for a way to get it. I'm not sure why you can't get it in alaska, but have you contacted your dr in texas?

FYI, it is true that once you start on Remicaide you must continue. Our bodies builds up a resisitance over time and can build up antibodies to Remicaide, which means we reject it and have an allergic reaction. This may be why Sojourn was told once you start remicaide you must stay on it.

Good luck and keep us posted.
 
I

Ilysha

Guest
Hi Tina,

I too had a similar situation where I went off Remicade for a while, but once I went back on it did start working again. It took a little longer to kick in -- about a week or two, but I was able to get relief from it after a break. Now I'm on a regimen of every 2 months and doing well.

In the meantime, have you tried a heating pad or thermacare heat wrap? They can provide relief that might augment the pain killers.
Best of luck to you.
--Ilysha
 

Kev

Senior Member
Hi Tina.. Welcome to the forum. Getting stuff like this out can be a great release. So, go ahead, vent all you want. no one on here will think worse of you for doing so, we all use this site to gripe from time to time. Everyone here understands, we've all been there, done that. One of the many great benefits of this site is we know first hand what its' like to live with crohns... hope things turn around for you, drop in any time you feel like.., and keep us posted as to how things go, OK? Take care...
 
S

skipscrohns

Guest
Hi Tina,

I think once you have the colonoscopy, your Dr. will know or a least have an idea of what's going on in there..I don't get all that much pain, justa few aches now and then. Wait it out until you get the results from the test, and your doctor will go from there...

Alot of these suggestions sound good from the other people, so maybe go with that also....

Hang in there..this is a disease that's got to be one of the worst, so we all need to perseverve.....sounds easy, but we all can do it.....

Skip
 

mikeyarmo

Co-Founder
Welcome Tina!

I (like others) suggest looking into Humira and speaking with CCFA or your doctor to see if they know any ways you can get the drug cheaper/free as you do not have insurance. Also moving towards softer foods/liquid diet is a good idea only as long as you continue to have a sufficient intake of calories and vitamins.
 
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