24 With Crohns and One Step at a Time

[Momof2EW]

Good morning everyone!

I'm Elise, 24 years old and a mother of 2 boys. I recently went from a perfectly healthy girl to having to cope with many doctor visits and hospital stays. My long story short of how I became diagoised(sp) with Crohns begins here...
I went to a water park in GA at the end of May 2010, I got sick really bad to my stomach that same night we returned from the park. Ever since that day I have suffered joint pains, going to restroom an overly amount of times (Im sure you all know what I'm talking about), I have horrible leg and arm pains sometimes as well. My first stint in the hospital was in July, this was after seeing about 4 doctors already and just being gave the run around of, "Ma'am you just picked up a bacteria infection at the Water Park jazz". My stint in the hospital in July lasted 9 days and after all that time they could only tell me that all the pains and restroom visits were from something called, reactive arthritis. So, they keep me on a high dose steroid and tell me that if I keep having bowel problems after I am sent home to come back, or if I got another bad flare up to come back. So.... was on my pain meds and steroids up until the 2nd week of September and then BOOM I started in having the mouth ulcers and bad visits to the restroom.

On September 13th, I went back to the hospital and was admitted for 5 days, this time they decided to do the colonscopy and see what was going on inside. They also did one where they put something down my throat, not to sure the name of that procedure. Results came back a few days later and the doctor said it was indeed Crohns disease. I have ulcers from my throat, stomach, all the way to my lower rectum area. He said he wouldnt ever be able to tell me if I picked it up from the water park as a bacteria or not... but now I have it and have to cope with such a crazy disorder in my body.

Today I am very nervous because I start the Humira shots and my appointment is at 1030am. I heard they hurt in the legs but I hope I stay strong. I also am being lowered on my steroids that I take everyday, I have been on 60mg a day and this past week came down slowly to 40. 20 in the am and 20 in the pm.

Anyways, I think I may be rambling now... Im super happy I found this website, I feel so alone and embarrassed because I feel like no one else knows what I'm going through.

Thanks for listening and I hope to make many new friends here!
The new girl,
Elise:lol2:

 

[Crohn's 35]

:welcome: Elise! Glad you found our community with great info from wonderful and caring people who are just like you!

There is a Humira thread it is long but much information there. I was on Humira for 6 months and I used the syringe, most people pick the epi pen and freeze the area needed. The initial shots are 4 of them and then one once a month or depends on your severity.

This disease is hard to control but once you catch it , you can lead a normal life, but diet changes are needed like a low residue diet.

I too had and Endoscope and colonoscopy for my diagnosis ( after a year of tests :yfaint: ) and it usually is the best way in my experience to find Crohns. With the high amount of steroids, please tell me you are on high doses of absorpable Calcium and Vitamin D3. A mistake I made because I wasnt fully aware.

Glad you are here, goodluck with the Humira I hope it works for you.!!

 

[Momof2EW]

:welcome: Elise! Glad you found our community with great info from wonderful and caring people who are just like you!

There is a Humira thread it is long but much information there. I was on Humira for 6 months and I used the syringe, most people pick the epi pen and freeze the area needed. The initial shots are 4 of them and then one once a month or depends on your severity.

This disease is hard to control but once you catch it , you can lead a normal life, but diet changes are needed like a low residue diet.

I too had and Endoscope and colonoscopy for my diagnosis ( after a year of tests :yfaint: ) and it usually is the best way in my experience to find Crohns. With the high amount of steroids, please tell me you are on high doses of absorpable Calcium and Vitamin D3. A mistake I made because I wasnt fully aware.

Glad you are here, goodluck with the Humira I hope it works for you.!!

Tbanks for the reply so fast! Im totally new to this! And I am getting the 4 shots with the epi pen today. I have done some reading on the epi pen and Humira in that thread as well. Its alot to take in forsure. I am on a Vitamin pill and Im not to sure about the Calcium pill, that makes me want to go check my bottles. If not, when I see my doctor this morning I will def bring it up to him. I think today he is starting me on the 6MP and will tell me to taper more on my steroids. I guess I will just have to wait and see. Im so nervous. And does the epi pen shots hurt? 4 shots in one leg just seems like a whole lot

Thanks again!

 

[Manzyb]

Hi Elise! Welcome to the forum!

I am on Humira right now. The needle itself doesn't hurt, but the medication does sting when it goes in. I don't really care for the pen. I use the syringes. The pen makes this loud clicking noise that i don't care for. As for the 4 shots, you can switch legs, you don't have to do all4 in the same leg. A lot of people put the shot in their stomachs too. I couldn't do that! If you have any questions, PM me! I hope that you start to feeling better soon.

Amanda

 

[Crohn's 35]

Try not to worry..I know the unknown scares you but... If I recall my four shots were 2 in the belly and 1 shot each leg and then rotate... but that could change. Does anyone still do the shots in the belly...hurt me way less.

 

[gringo43]

Welcome Elise

Sounds like you've been through the ringer lately! The good news is you have a disgnosis and appears your docs have decided on course of action for you. I hope you get good results with the new meds and start feeling better soon!

Here's a thread with lots of info on Humira

http://www.crohnsforum.com/showthread.php?t=6500&highlight=humira

-Jerry

 

[Nancy Lee]

Hello Elise,

Just popping in to welcome you to the forum.
You'll find lots of information here and make a lot of friends
who understand what you are going through.

Hang in there.
Hugs~Nancy

 

[Entchen]

Hi, and welcome to the forum!

 

[Astra]

Hi Elise
and welcome

You'll get all your answers in the Humira Club thread!
Just a thought, but why take 20mg of Pred in the morning and 20mg at night? We usually take it all first thing in the morning after breakfast to ward of insomnia.

here's a linky on it
http://www.patient.co.uk/medicine/[wiki2="Prednisolone"]Prednisolone[/wiki2].htm

glad you found us, you're no longer alone with this, lots of friends for you
lotsa luv
Joan xxx

 

[seaofdreams]

Welcome Elise!
Just popping in to say hi and to wish you good luck with Humira

 

[Manzyb]

How did it go for you today??

 

[Lucy]

Welcome to the forum. I've been on Humira for almost 2 years. I have the injections not the pen. I had the pen but insurance changed that. I never give it in the leg it hurts me way worse. I inject in the abdomen and rotate every week. I hope the humirs helps. It has helped me, but after 2 years not as well as it use to. My doc may add something like methotrexate soon. I also take a multi-vit without iron and calcium citrate. Good luck.

 

[Nilan]

Hi Elise, and welcome to the forum!

Just as Pen stated, you have the initial 4 shots (I had all of them in my belly) and then 1 every month or so (I think it really depends on you're severity). I had the pen injections, and had them for just over a year, till I had an obstruction (narrowing of the bowel) and went to surgery. They sting a bit (the pen method) but its only once a month, and the amount of relief it gives is very much worth it.

Best of luck!

 

[Momof2EW]

Hi Elise! Welcome to the forum!

I am on Humira right now. The needle itself doesn't hurt, but the medication does sting when it goes in. I don't really care for the pen. I use the syringes. The pen makes this loud clicking noise that i don't care for. As for the 4 shots, you can switch legs, you don't have to do all4 in the same leg. A lot of people put the shot in their stomachs too. I couldn't do that! If you have any questions, PM me! I hope that you start to feeling better soon.

Amanda

Hi Amanda! And thanks for the reply! Yes, the clicking sound was annoying and I jumped the first 2 times, but I cant decide if I want to keep trying the epi-pen or switch. I guess I will get used to the pen. The burn is almost like a bee stinging you real bad for 10 seconds, I hated it. But, I guess I will get used to it. I would be super worried having to do it in my stomach. ugh.

 

[Momof2EW]

Thanks for all the support from you all! I am learning a little at a time as well as taking in so much I didnt know about my illness through this site.

:smile:

 

[Momof2EW]

Hi Elise
and welcome

You'll get all your answers in the Humira Club thread!
Just a thought, but why take 20mg of Pred in the morning and 20mg at night? We usually take it all first thing in the morning after breakfast to ward of insomnia.

here's a linky on it


glad you found us, you're no longer alone with this, lots of friends for you
lotsa luv
Joan xxx

Hi!
You know Im not to sure why he has it spaced out like that with me taking it in the am and the pm.... It was the am, lunch, and then dinner time. But, now that he has me down to 40mg, he said to do 20 and 20. My next appt is Oct.8th, I hope to figure out how he is going to handle my taper and all when I see him.
Thanks for the support.

 

[Momof2EW]

How did it go for you today??

It was okay.... I guess about what I expected. It felt like a bee stinging the heck out of me for about 10 seconds. I did 2 shots in each leg, I wish I would of took the little cold pack to lay on there afterwards. But, I am glad I got the 4 of them over with.


Thanks for asking

 

[Momof2EW]

Thanks to you all again! @Gringo43, Nancy Lee, Kelly, Nilan, Lucy Its so nice that there are others out there going through something that I thought I was alone on!

 

[Jennjenn]

Welcome

I was on Humira for a short period of time. I wish I would have known that there was an option to switch to the syringe! The first time I got the 4 shots my doctor told me I will do two then you can if you want. He told me if I still was not able to give myself the shots that I could go back to him and he would continue to give them to me if I wanted. When he said ready for the first one I said ok....then the tears came to my eyeseven though I had a semi smile on with a worried look! And all he kept saying was I'm sorry, I'm sorry! It did sting...I never got stung by a bee before and if that is how it feels I will avoid them even more now lol

I hope the Humira works well for you and that you start to feel well again soon

 

[Momof2EW]

Welcome

I was on Humira for a short period of time. I wish I would have known that there was an option to switch to the syringe! The first time I got the 4 shots my doctor told me I will do two then you can if you want. He told me if I still was not able to give myself the shots that I could go back to him and he would continue to give them to me if I wanted. When he said ready for the first one I said ok....then the tears came to my eyeseven though I had a semi smile on with a worried look! And all he kept saying was I'm sorry, I'm sorry! It did sting...I never got stung by a bee before and if that is how it feels I will avoid them even more now lol

I hope the Humira works well for you and that you start to feel well again soon

Thanks for your reply! I was wondering what may be worse the pen or syringe one? I really disliked the clicking of the pen. Maybe that id something me and the doctor can discuss when i go back to see him next Friday. I hope the medicine works for me as well. Sorry you had to go through so much pain with yours at first. I hope its all working well for you now

 

[DustyKat]

Hi Elise and :welcome:

I'm glad you found your way here. Sorry I'm no help at all as far as Humira goes and probably heaps of other things as well! :lol:

There's loads of support and info on the forum so please stay around as we would love to have you here. Good luck and welcome aboard!

Take care,
Dusty

 

[Dexky]

Hi Elise, welcome!! I have a daughter named Elise!! You started 6mp and Humira on the same day?? We were told 6mp would take 6 months to fully integrate into my son's system. I wonder if your doc intends to keep you on both or take you off one or the other when they get in your system. Good luck and stick around!!

 

[rottengut91]

Hey Elise
Welcome to the forum.

 

[Momof2EW]

DustyKat & Rottengut91: Thanks for the welcome in! I plan to hang around a bit

Dexky, thanks as well and i only ended up doing just the 4 injections yesterday, i see the doctor next Friday and i think that's my big medicine swap up day. Iknow he wants me tapering off these steroids so i can only take just the 6MP from then on. I guess its a waiting game toto see how he will switch them up. I can't wait to get off the prediesone though!

 

[My Butt Hurts]

Hi EW! Glad you found us!
I was going to also suggest taking the prednisone all in one dose, but check with your doc first of course. if you'r enot having sleep problems with it, then I guess it doesn't really matter though.

I never did Humira shots in my belly, but I have read that a lot of people on here have, and they preferred it to their legs. Ha! The directions said to not inject into stretch marks and I could barely find a spot on my belly without them. When I was in Humira remission I remember saying "I don't care how this shot feels, it if keeps me in remission it is soooo worth it!"

I hope it gives you relief, good luck!
MBH

 

[Momof2EW]

Hi Elise, welcome!! I have a daughter named Elise!! You started 6mp and Humira on the same day?? We were told 6mp would take 6 months to fully integrate into my son's system. I wonder if your doc intends to keep you on both or take you off one or the other when they get in your system. Good luck and stick around!!

Im so slow to just now seeing this! ha! The name Elise is awesome! Shes a lucky girl! I love my name and get tons of compliments on it still at 24!

 

[Momof2EW]

Hey Elise
Welcome to the forum.

Thanks!

BTW... Love your name "Rotton Gut" :stinks:

 

[Momof2EW]

Hi EW! Glad you found us!
I was going to also suggest taking the prednisone all in one dose, but check with your doc first of course. if you'r enot having sleep problems with it, then I guess it doesn't really matter though.

I never did Humira shots in my belly, but I have read that a lot of people on here have, and they preferred it to their legs. Ha! The directions said to not inject into stretch marks and I could barely find a spot on my belly without them. When I was in Humira remission I remember saying "I don't care how this shot feels, it if keeps me in remission it is soooo worth it!"

I hope it gives you relief, good luck!
MBH

Hi! :biggrin:

And you sound just like me with the strech mark deal! ha! The legs arent that bad, but then again thats all I have done so far. Im hoping since its just 2 shots next time... I will get used to it. Thanks for your reply and I hope for you to stay in remission as well!

Good luck :thumright: