I'm new to the forum but not to Crohn's!

Hello! You guys may recognize my username from Healingwell. I am just looking for a new forum with more...Mature people. I am 15 & was diagnosed last year in October. Like most of you, it took a while for me to get diagnosed. I have been seeing a GI doctor since I was around 2 years old. I used to go to the ER nonstop for back to back fecal impactions & after a scope at age 4 I was told it was "just constipation from IBS". I have had several "mini flares" since that time but when I got my Gallbladder removed at the age of 13(I was the 2nd youngest in the hospital's history) everything just went crazy. Apparenty I was septic & immediately after surgery I felt like my joints have been ripped apart. I went from doctor to doctor to find out why I was sick & I was told it was 'Mono'. That "flare" went away after 6 months but in February 2011 it all came back & then some. Several scopes & tests later, I got diagnosed with severe Crohn's. I have lost 90 pounds this year & I can't seem to get this never ending flare under control. I was hospitalized for a month in late October & it was miserable to say the least. Hopefully, at my GI appointment soon, we will talk further about meds. My Crohn's affects my mouth, esophogus, stomach, ileum, all of my colon & rectum. My scope in April showed active inflammation in stomach, ileum, all of my colon, & rectum. I am very active in my CCFA chapter & will be a camp counselor at Camp Oasis this Summer If you live in the Southeast United States, you will probably see me at a lot of CCFA events & at the Camp Oasis in Georgia! I look forward to supporting everyone, learning from others & offering advice to those who need it :ghug:

I have tried:
Remicade- I got drug induced Lupus after a few infusions
Asacol- Couldn't digest pills
Apriso- Didn't do much
Canasa Suppositories- Did nothing
Steroid suppositories- I rotate with these every few months
Prednisone- I couldn't digest the pills & only lost more weight. I had to receive the IV prednisone.
Flagyl
Cipro

Currently on:
Humira- weekly
Sulfasalazine
Vitamin D
Fish oil
Zinc
Folic Acid
Vitamin B12
Zantac
Prilosec
Probiotics
Noritriptyline

Welcome beautiful friend! Here I am saying to make sure you do an intro and you've already done it!

Hahaha, thank you gorgeous! I was so worried about how to do it! I guess I put it in the write place then. I guessed there were probably moderators somewhere to move it if I put it in the wrong place.

:ybiggrin:

Welcome. Wow u have been through a lot for such a young lady! I had just started with my what I think is my first flare.

Damn, you've been through alot, I was like you with the major weight loss and not being diagnosed for ahwile and i'm currently flareing trying to find a next step to take with it. But welcome anyways!

Hdllo and welcome to the forum, glad you have decided to join With regards to trying to get your flare under control have you given any thought to trying something like enteral nutrition? It can be just as good as meds like the prednisone with helping getting the tum settled down without having to worry about the side effects, it may also help with getting some weight back on.....

Wishing you all the best.

AB
xx

I am thinking about the EN! I have a GI appointment coming up & I am going to mention to him about the EN or anything simmilar to it. He has mentioned appetite stimulants so we shall see!

Thanks for the support! I tottally understand EthanPSU, I love my Humira because it does give me a lot of relief, it's just short lived. My GI is talking to some of his colleagues about if it would be appropiet to raise the dosage to biweekly, because of my age and history with the drug induced Lupus. I hope you find the right balance for yourself also!

Hi keepingfaith and welcome! Wow, I wish I was 1/10th as articulate as you when I was 15 years old! I could barely tie my shoes much less talk like you're able to. Kudos to you!

As I read your post I had the exact same thought as Angrybird: enteral nutrition. It is such a fantastic treatment option, especially for folks like yourself who are still growing. Another interesting option is low dose naltrexone. Are you familiar with that one?

You mentioned that you had DILE from Remicade. Would you mind sharing specifically what symptoms you got when you had that? And did they diagnose it based upon clinical presentation or did they run some tests?

It's really great to have you here and I hope to see you around more often

I did have a positive ANA(before any of this Crohn's happened) along with other positive tests that pointed twords Lupus. I had a lot of the symptoms but chose not to receive treatment because the Rhurmatologist said it could be Mono and I just "chose" that diagnosis, so to speak, rather than believe I had something incurale like Lupus.

When I got on Remicade all of the "Lupus like" symptoms came back & then some. I am still batteling some of the symptoms. My fingers turn purple when I'm cold(which is most of the time. My average temperature is 96 degrees), I had a facial palsy that was very simmilar to the Bell's palsy I had when I was 10, when I got up from sitting down my eyes would twitch, I couldn't speak, & I couldn't move. My GI doctor freaked out when he visited me when I was admitted in the hospital for a month. I got up to hug him before he left, and when I did, I couldn't move. I could hear fine but I couldn't speak, my vision was glossy, and after a few minutes, I managed to slowly start getting function in my body to move. I could hear my doctor & mom screaming at me & asking what was wrong but I couldn't talk or move. It was very scary.
I was then taken off Remicade & my GI doctor ordered me to have gloves on my hands at all time, and to cover most of my body with clothes(as opposed to sleeping in a tank top and PJ shorts) when I slept so I cold maintain a stable body temperature. Most of my symptoms are gone but I still have the Raynaud's & the extreme muscle aches.
I have heard of EN & LDN. I honestly am not interested in LDN at all. I have had many Crohnies(that I actually know, as opposed to believing everything a person says online)say they have used LDN & it has done nothing for them but put them in greater debt, medication wise.

Thanks for the support & a lot of people say they enjoy knowing a teenager that has decent grammar and is mature. I guess when you have all these medical problems, you grow up faster than you need to

I really admire you kiddo! (and yes, I know you're mature but you're a 'kiddo' to me given you're the same age as my kids ;-p so there lol)

ps: Blair has raynauds too!