I'm glad I found you guys!

[MacKenzie12]

Hi readers, My name is MacKenzie.I'm an 18 year old in Tyler Texas, and here is my story.

I was diagnosed when I was 16, I got tested because my older brother and my uncle both have pretty badly. I assumed my Crohn's was mild, and it may very well be... but whatever I'm doing now can't be correct. Well, roughly eight months after being diagnosed I had a small bowel resection in my ileum. It's been a year and a half and I'm headed downhill again. I'm getting another colonoscopy next week. I have no appetite, my stomach hurts when I eat just about anything (although I managed just yogurt and crackers last night with no problem). I'm going to talk to my doctor about the Paleo diet to help maybe.
I'm currently a sophomore in College who is taking summer classes and doing an internship, so doing a tedious diet will be difficult to keep up with. Especially because I'm a poor college student. Oh before I forget, the only medication I'm taking are two 50mg Azathioprine.

My doctor in Dallas had the mindset to keep young people on the lowest possible maintenance drug so that if it worsens you have stronger medication, but my new doctor in Tyler thinks that stronger medication is better for young people to prevent problems. Thoughts on that?
He wants to start me on Remicade.

My brother's situation has always been a struggle for me. As my oldest brother, I always look up to him... unfortunately it is difficult for me to now... A few months before my surgery my brother, 21 at the time, had a very similar surgery. He did invasive surgery... which ended up causes spillage (i think) and infections. He was also hospitalized for arthritis like symptoms in his knee? Well, his crohn's has forced him to dropped out of college and he started having depression... which obviously didn't help... I stopped holding an actual job and ended up moving back home into my fathers house. Unfortunately, neither of my step parents like my brother... They fought at my fathers, they sent him to my mothers. He stayed in bed a lot and all my parents thought he was being lazy. Another issues is my brother has to have his hydrocodons rationed.... and he has been caught actually taken a few of mine. After that my parents were fed up with him and sent to live with our grandmother in Mississippi.

I love my brother and miss him very much. If I could help him I would. I would do anything if I could get him back on his feet. It's very hard for me to see him like that. He is 24 and living with our grandmother, and according do her he lives in his room basically. He writes, and makes some money doing online comics and writing dialogue... I just want better for him.

That's my story... Thanks for listening.
If you have advice I would love to hear it.
Especially about the remicade vs. azathioprine and treatments. And the paleo diet. And please, if you have any advice about my brother. I miss him.

Thank you

 

[kllyeve]

Hey and Welcome!!

There are lots of "kids" your age here so I hope some of them will chime in and say Hi as well.

There are 2 main medication approaches to Crohn's Top down and bottom up. Top down says give them the strong stuff right away to put them quickly into remission and once in remission, drop down to a maintenance drug to keep them there. Bottom up says start with the weakest medicines possible, if that doesn't work, then move up to the next strongest until one works to put them into remission. WHich method used depends on the GI, your age, your stage of disease and the severity you first present with.

I am on Remicade and find it to be awesome. I did Imuran and had a bad reaction to it or I would still be on that med. So you could try Imuran and save the Remicade for later if the Imuran doesn't work for you.

I haven't done the Paleo diet. Some people do find symptomatic releif and sometimes remission from dietary changes. My Crohn's went from mod to severe very quickly and I didn't have time to see if diet alone would help. And given how quickly I got from diagnosis in Dec 2009 to Remicade in Dec 2011, I am not sure dietary changes would have been sufficient with such an aggressive disease course.

As for your brother, just keep loving him and stay in touch. You may want better for him, he probably deserves that, but until he wants(and can due to his health) better for himself no outside motivators will really work.

Hugs from the Great White North!!

 

[MacKenzie12]

I've heard great things about Remicade, it's very comforting.
Thank you for your words; I never thought to join a community like this until I actually started reading the threads. It's nice to be able to have communication and connections with other crohnies.

 

[David]

Hi MacKenzie and welcome to the community! It's great to have you here

First off, regarding your brother, everyone's situation is different. One idea would be to have him join the community here and have him share his story. There are a lot of wicked smart people here (as you might be able to tell by kllyeve's response) and we might be able to get him pointed in a positive direction.

As for you, kllyeve covered a lot but I wanted to add one more thing. I'm a fan of the shotgun approach. I love that you're looking at the paleo diet. That, western medicine like your Azathioprine or Remicade, lifestyle changes such as stress reduction, monitoring and proper supplementation of vitamins and minerals, quality exercise, etc is my favored approach. Hit is from all angles

I'd also research and discuss enteral nutrition with your doctor. If it was me, I'd utilize total enteral nutrition and then transition to the paleo diet. But that's just me and there are plenty of other approaches out there as well.

In case you have seen it, we do have a subforum dedicated to Remicade under our Treatment forum if you'd like to connect with others.

Again, welcome! It's great to have you here.

 

[Keepingfaith]

Just wanted to say welcome to the forum :ghug:

I am about your age so if you ever want to talk/vent, feel free to message me! I live in Alabama so I'm not too far from you


If you can stick to Paleo, while being in college, more power to you! A lot of people have had great success. I've been on almost every medication for Crohn's with the exception of the Immunomodulators(6mp/methotrexate/Imuran). I was not on Remicade long because I got drug induced Lupus from it. I deffinately liked Humira/Cimzia a lot better because I could do the injections at home rather than go to an infusion clinic for 5 hours and get pumped up with Benedryl. I felt like complete crap after my Remicade infusions. Everyone is different though and quite a few people have gotten into remission because of it.

I agree with David, if you can get on a good maintenance medication, have a healthy lifestyle and get on a diet like Paleo in the meantime, I'm sure you'll find some success.
As for your brother, has he heard of the CCFA? Have you? The Crohn's & Colitis Foundation of America offers a lot of support groups nationwide as well as other events for the Youth. I am actually going to Georgia next weekend to be a camp counselor at CCFA Camp Oasis, a camp for kids with Crohn's Disease. I have met so many other people my age at CCFA events. It helps to have a support system and know you aren't alone.

 

[MacKenzie12]

Thank you for your answers!
David, is the enteral nutrition painful? I had a tube down my nose and throat in the hospital and I HATED it.... So, I might shy away from that.
As for stress reduce... I don't know how I'll ever achieve that because I get really bad anxiety some days.
Does anybody know if anxiety meds would conflict with Crohn's medication, or anyone else on them. I've contemplated asking about them, but medication that affects your behavior scares me!

And Keepingfaith, thank you for the ideas but I'm not sure how I would get him into that.

Thank you for the support, it is nice to know you're not alone!

 

[David]

You can do elemental nutrition where you're basically drinking shakes

 

[MacKenzie12]

That I might really be interested in!
Thanks David!