Hello I'm new here!

Hello everyone, not sure how this works exactly, but my name is Elana & I guess this is my story! I started getting sick when I was 14 years old.i would have horrible stomach pains especially in my right side( which has stayed constant to be the source of pain anytime I am flaring) and would vomit up any food or liquid I tried ingesting. I was diagnosed with a completely different disease and given antibiotics every two months to keep my stomach from acting up constantly. I didn't realize then that those antibiotics were used to treat Crohn's disease. At 16 I dropped a lot of weight and wasn't even able to eat at 5'11 I dropped down to 118 pounds . After countless torture,tests,doctors,spinal taps, catscans and so forth( I've blocked most of this from my memory ) I had gotten better with prednisone to only have the same every few month habit of tons of antibiotics being thrown my way when no one knew what was actually wrong with me.

Countless endoscopies showed that I had an overwhelming amount of eosinophils and neutrophils and apparently " one of the worst stomachs they'd ever seen" because the inflammation covered my entire stomach. It would be fire engine red and they believed no food could pass because the inflammation was so great. I'd have a constant battle but last year things got horrible, I dwindled down again to 122 pounds didn't eat for 7 months lived off shakes and liquids and finally threw my old doctor to the curb and was admitted to north shore lij. I wasn't even able to handle water, I was there for weeks on I'V fluid and had so much inflammation in my gut it caused problems with other organs as well and left me very malnourished. The topping on the cake is that I saw a specialist for the disease they claimed I had who said I definitely do not have it and that she believes I have Crohn's disease due to all the inflammation.

I met the most amazing group of doctors and one in particular who saved my life. He brought in specialists who reviewed my slides pictures history etc and they kept stating it not only appears that it is Crohn's but Crohn's only of the stomach. Only 3 to 4 percent of cases have this type apparently, but obviously I had to be the different one. After feeding tubes and more tests they decided to give me remicade and if it worked we know indeed it is that because at that point we had no other choice, they said my organs were gonna start shutting down. Thank god remicade was miracle within that week I started eating again. I have only put back about 4 pds of what I've lost and next to everyone else I am not a big eat but for me, and how I used to eat I think I eat like King Kong now! I love food! I've missed it for so long!

I eat all gluten free now. I have been doing amazing on remicade and i thoroughly believe it has saved my life.unfortenately this last week I have been the sickest I've been since last yr not sure if its something i ate or what.my wonderful dr has been on vacation so I'm waiting for his call so I can hop off the liquid diet train and return back to life! It's crazy how you forget how sick you really are when you're feeling we'll and how easily you remember once you're sick again! Thanks for whoever is reading this and I hope all are doing well, or as we'll as you can be and I am always hear to talk or lend support!

Countless endoscopes **** spellcheck on phone didnt work there

Hey, Welcome to the forum.

You've been through a lot with, especially with being young when going through the worst of it. I know how hard that can be with school / friends and such. I'm glad you got a doctor that knows what they're doing and got put on remicade. Remicade worked great for me too when I was on it.

Anyways I hope you keep feeling good and it only gets better! Welcome to the forums.

(I laughed at that spellcheck hiccup, thought you had some torrets or something going on)

Yeah horrible spellcheck! Unfortenately my doctor has decided to admit me tonight or tomorrow to get hydrated & wants to up the dosage of my remicade to 10, were you up to that? It freaks me out! What are you on now and how are you feeling. Thanks for the response

I think I started at 5mg every 8 weeks but then when it started now working properly, I was moved to 5mg every 6 weeks. I'm currently on Humira, it's a self-injection thing that I took every other week but now i'm on it every week. I'm feeling great now, was feeling not so hot a few weeks ago, but since the upage in dose of Humira im fine.

Hopefully after your admition and 10mg dose you're back to 100%

I hope so too! Have you heard of the 10mg though I'm a little worried that its higher, is your dosage on humira like that as well?

Welcome to the forum...this thing really helps!

Its not like you will notice the higher dosage. I mean you will with your crohns but it's nothing to worry about. Especially since your doc that you like prescribed it. It'll be the same as taking a 5mg dose, injection wise and such.

And im actually not sure what/if there is a higher dose of humira. For now I just take it more frequently rather than upping the dose

Thanks so much usmcjones! And Ethan that's good I was worried about it ruining my I'mmune system more than it already is! And I guess ur right about the dosage with humira too I'm glad it is working for you!

I feel your pain kinda went through the same type of sitch(I am sure you know dat by now).
Just wish we could ave a few days to live without pain. I can na remember what it feels like to be normal anymore. Ave na tried any type of meds for Crohns, keep gettin run round by Canadian doctors. Most of em seem to ave no problems ignoring the pain of native people.
Glad to see someone gettin treatment.

With you'd get treatment you need and deserve!!

I will eventually, long hard road for people with Crohns. My road is a rough one.
I will na give up!

I was recently upped to 10 mg of Remicade every eight weeks, then my doc upped my frequency to every six weeks.... Not sure this was the best move for me. I am experiencing an increase in infections and an inability to heal. I have an appointment with my GI doc next week to discuss. The road to finding the right dosage can be difficult. Hang in there!

Sorry to hear you're having those problems! Do you mean heal any infection or ones specific with Crohn's??

I find that sticking to a liquid diet(which is really hard to do) is the best for me right now. Eating any solid food seems to make me feel pain more, especially at night/morning time.
Wish I could relax and stay asleep more than I do.
How are you feeling? Hope you are feelin better Lani5.

Hello!
It sounds like you really went through a lot before getting diagnosed! Its a good thing you switched doctors, who knows where you would be if you hadn't. I am glad that the Remicade is working so well for you! I hioe you start feeling better soon! are yoiu still in the hospital?

Hi guys! Yes thankgod i got new drs because I don't know if id still be here I I hadn't! I just got released today from hospital thankfully so far the 10mg remicade seems to be working! I'm in alot of pain still but at least can eat a little and not vomiting so hoping it continues and I don't have to switch anythig anytime soon! So good to be home! I know what you mean native sometimes liquids are alot easier , try mushy foods as well if you can like puréed I hope you get some answers soon! And thanks afidz! How are you doing? In remission I see congratulations!!! How is that going

Elana-
I have been in remission for over 3 years and still going strong! I started getting some pains where I had a perforation in 2008, going to be making an appointment with my GI hopefully next week. Are you only on Remicade? Its great that you are feeling well enough to eat a little bit. It may seem like nothing to other people, but thats a great step for you! I know you said you started getting sick when you were 14, but when were you actually diagnosed with Crohn's? What were you originally diagnosed with?

I hope that you are feeling better now that you have increased your Remicade. I understand your concerns about increasing your dose of the medicine. but, you have to balance those fears with the reality that without the medicine you are really quite ill. There are risks to the medicines, and everyone has to weigh those risks themselves. But, from what I have read, you were so ill that the Remicade has been a life saver. I hope it continue to help!!
-Lisa

Hope you are OK , it has been a while. I am the same...sigh.
Appointment on friday, hope that goes well.
Wishing your feeling well.

Lani5 I hope you are out of the hospital and feeling better soon!

Hello lisa and laura and Hi guys! Sorry I haven't responded thankfully I am out of hospital and doing better I can eat some light meals but still in alot of pain and alot of indigestion and can't eat anything heavier than breakfast type foods. They said hopefully next week it kicks in meow or I may need to wait till the next infusion to rly be " better" hoping this subsides soon because being in bed is boring with a heating pad all the time! Also does anyone experience joint pains and what do you do for them? Also afidz I was diagnosed last February with Crohn's and before they thought I had eosinophilic gastritis, congrats again for remission!!

welcome! I have just joined in oct 2012 and have had lots of help and talked with great people. You will love it here.

Lani, I think my grandma has that, it has been very debilitating to her, I feel really bad for her all the time.
I am glad to hear that you are out of the hospital!
Remicade usually helps ease joint pain, but I have not been on it personally so I am unsure. You can take things like Tylenol and see if that helps at all, if the joint pain gets unbearable or worsens, call your GI to see if they can prescribe you something or suggest something over the counter to control the inflammation and ease the pain. Unfortunately its winter, the cold temps and change in barometric pressure really don't do anything but make our joints hurt. I hope you feel better soon!

My doc wants to put me on Humira and I am really nervous about this...have you guys had any side effects with this??

Welcome!

Thanks so much afidz and Jenna and Joji I believe Ethan is on humira!

For humira, I starting having an allergic reaction to it after about 9 months. But when it was working I had none, it worked well for me.

How are you lately Lani5? Hope you are in a good place.
I finally found some relief with a HP PAK. That is for stomach infection , is it na?
I am scared to think what YEARS of that did to my stomach.
I am eating and the pain is gone though, I am soo happy for that. It was there for too long driving me totally crazy.
Hoping you find some releif also, everyone really.

Lani5?
Hope you are all right, I prey for it.

Hello native! Did not see threads till now! I'm so glad you have gotten some relief thank god! My remicade kicked in 3 weeks after eating it! Slow recovery but Definitly a huge step. So wonderful to eat and not be doubled over or vomiting. I'm hoping it stays this way for some time! Endoscopy at end of month and remicade again. How r u feeling? So glad again they have ur stomach what it needs finally!

I feel like the pain has been cut down, I still ave issues. Who does na really.
I need a proton Pump, I am only on a HP PAK. I take a llil Lax a Day.

But this is hard, I am meeting more like me. My uncle just came over crying! He confided in me that this was happening to him for the longest time. Same situation. Pain in stomach in joints, can na eat,and no no doctor can figure it out?!
I feel like I am the Doctor,I am the ONE telling everyone this is what has ravaged my people for soo long.
He cried saying he wants to die, wants to kill himself.
I held em in my arms and said" the Creator has brought you ere. I know what it is, I know what you need. No one else will tell you.
But I love you uncle,no one should ave to go this what we are going through. It will get better. Together"

I will lead my people through this, it is my mission. No one else will.
We Louis Bull Cree are dying and our numbers are small(jus over a 1000).
I refuse to accept the government plan for my people. I will not let em be ignored any longer!

Lani5?
I am preying for you.

Hello sorry my phone has not gotten my threads I am alright good times and bad you know how it is. Always dealing with something but can't complain hope you're Doing we'll as staying strong!

I wish you well.
I am actually feeling better. You know...really just learning how to deal with this everyday is a struggle. I upped my dose of Iron, now I feel more energy. Really just issues of pain now. I really believe the Iron and foods I am eating are the reasons.