Community Forum

 Reply posted for templeugirl32.

Sorry for all of the troubles you are going through. I also live around the Philly area, my GI is at Jefferson, not sure which hospital you go to, but I would highly recommend the department there. I had my surgery there as well about 11 years ago and the team of doctors and nurses made the process/recovery that much better.

Since there surgery and up until 6 months ago, I was on Imuran and Pentassa, when I had a flair up, went to the ER (Jefferson) where my Dr recommended Remicade. Started my first dose right then and there and immediately began to heal. However, I am now feeling some side effects, headaches, sinus infections, etc. however, still better then a Crohn's flair.

Hope you feel better soom

Hello!

First of all, I am so sorry that you have to deal with this! Crohns is a physically and emotionally draining condition to deal with. Originally, I was exactly like you. I was on pentasa and countless other drugs, which didn't work, so they kept uping my dosages. After failing to get my crohns under control my doctors eventually  recommended Remicade. It took a while to get it approved through my insurance, but it got approved none the less. During the process my parents and I were informed that the insurance would only cover the costs if the infusion was done  at an infusion clinic of their choice. I am assuming this is how most insurance companies will handle this. After the first Remicade infusion I felt a difference. It was the most normal I had felt in years. I highly recommend looking into this treatment. And if your insurance doesnt cover the costs of the Remicade I would look into getting approved for Humira. They are both biological "drugs" that target the same immune cells that cause the inflammation. Since the two drugs are so similar I had no problem whatsoever switching from the Remicade to the Humira (I switched because I started college and didn't have the time to travel for the Remicade infusions). Before starting these biological drugs I was hospitalized multiple times and even had a portion of my bowels removed. I am now in remission (going on a year and a half) and would recommend this course of treatment to anyone. Hope this helps!!! 

 Reply posted for templeugirl32.

Hi. I am so sorry to hear all that you are going through, I'm 19 and recently just transferred colleges to come home so that I can take care of myself better. I have been on both Remicade and Humira and i recommend to deff give one of them a try. Although everyone is different, both medications have worked well for many many people. I wish you the best of luck!

 Reply posted for templeugirl32.

Hey I hope you have started to feel better. Im 25 and I know exactly how you feel as I just recently graduated college and had alot of flare ups and issues throughout undergrad. I have a blog where I talk about all this crap and how difficult being in college and having Crohns really is. People dont understand crohns and i know it can be super tough to open up and try and explain it to them.

check out the blog maybe something in there may help you, ive been through all the treatments almost and can relate. FEEL BETTER! KEEP YOUR HEAD UP. 

www.crohnspatient2patient.wordpress.com

 Reply posted for caitwith9lives.

Reply for caitwith9lives
 

How long were you on Remicade? Also, you said you looking to get back on it, so when did you stop taking it?
I have been on it for almost 6 years and am kind of wanting to stop treatment but am nervous what will happen if I do stop. Did you have any problems after stopping Remicade?

 Reply posted for geekyra.


Great reply about yoga.  It's not for the disease itself, but all the stress which can certainly be an issue from all the college students I've heard of with IBD.  I don't do it myself, but they say not just the breathing and stress reduction, but some of the movements also help with IBD.

I wanted to add if the movements are too tough or you want to start with something less strenuous you can also do Tai Chi.  There were some introductory classes near me that were just great in getting started and I thought that was just the perfect thing that literally anyone can do.

I've done meditation for many years since a kid for headaches and that's another alternative.  It just makes your mind concentrate on something else and you don't worry at all about anything else.  Really helps for the stress level, and I found the meditation was a good fit together with the Tai Chi with really slow, careful movement.

 Reply posted for templeugirl32.

Hi, I can't help but see the similarities between our conditions.  
I am a college junior and was diagnosed this past February with Crohn's disease.  I was on steroids and Imuran at the beginning and then was switched to Humira in May which worked for the first few months and then stopped working.  I am now lined up to start Remicade treatments and meet with a surgeon for a probable surgery to remove the scar tissue in my small intestine.  It's a very emotional disease and is even harder to be at school away from family having to deal with it.  It's also taking a toll on my relationships.  
A few fixes that helped me earlier this summer were a dairy free, gluten free, wheat free and low fiber diet.  My doctor makes sure I have lots of protein such as eggs and grilled chicken.  I also take daily vitamins and acid reflux medicine to try to help the heartburn and reduce vomiting.  
I'd love for people to just be able to understand.  Thank you for this post and mentioning that you see a therapist.  I think i might do that too.

 Reply posted for templeugirl32.

Hi,

I've been through it all since I was diagnosed when I was 6 and I'm 22. I've had plenty of surgeries and I've been on both Remicade and Humira. Remicade was a god send for me I had my longest remission on it and am looking to go back on it. I'd be happy to talk to you about anything you want even if it's just to talk about your depression or advice. Just let me know and I'll give you my email!

Caitlin

I was facing surgery Sophmore year of college. Luckily things took a better turn before it became necessary but I still remember the nauseating mix of fear, anxiety and stress from the disease on top of the usual stress a college student endures from classes, relationships, jobs, etc. 

Yoga... that is my advice. It's not all downward facing dog, headstands and pretzel twists. Mostly it's just breathing. Yoga helped me mentally and physically proving to be a turning point in how I viewed myself, my disease and my ability to endure. I have a blog/ website I've been working on that addresses the philosophy of yoga and talks a bit about my experience with Crohn's and how yoga has helped me find my feet after 5 years of being in and out of hospitals, working my way through available medication options, and just that entire period of learning self-management and disease-management. It's a work in progress that is very reliant upon how i'm feeling/ doing; here's the URL: http://journeyintoayurveda.wordpress.com/

Yoga doesn't fix all. It will not heal or cure your disease. But, i've found it helps give me resilience when life gets beyond my control.