Hello Everyone

[Bethanywrenboyer]

My name is Bethany, I am 22 years old and I was diagnosed with Crohn's disease when I was 11. I have been on Remicade since I was 13 years old, and what used to work extremely effectively is now starting to not work as well. "yfrown: They are testing me for antibodies to the medication and I guess we will see what happens from there. Now I am in full blown flare up mode, and I am honestly (even though I am ashamed to admit it) feeling sorry for myself and angry. Usually I handle my disease very well, but lately I have just felt so frustrated with it. Sometimes I just wish that I could be normal and carefree and not weighed down with this disease. I see a ton of other people my age having a blast, eating and doing what they want, not worrying about insurance, and right now I wish that was me. On top of that my Dr.'s office has the most unhelpful staff ever. I call and call for test results and they NEVER call back until I say I will come down there. I go to the doctor again on Monday and hopefully I will be able to get some medicine I figured I would try and reach out for support from others going through the same thing to make me feel better and put this disease back into perspective.

 

[AuntieEm]

Bethany,
Hugs to you. I'm not dealing well with this flare up well either and that is NOT me. In, My Head,, heart those around me and physically. Really throwing me for a loop. I'm glad I had the laptop to go to to find others for a bit. I'm not proud of my actions and I'm not saying I'm using others going through the same to make it OK to act that way but that I can battle it together.

 

[Ckt]

Hi Bethany and I'm so glad you found this amazing forum of the most loving and supportive people who know what you're going through!i know this illness can't be easy to deal with at your age and to have been dealing with it since you were a tadpole! I'm so sorry! I was about your age when I had a ruptured appendix but wasn't diagnosed until I was 40..11 years ago. I know how it is though being in your early 20s and feeling that you have already faced more than most have to in their lifetime.
Hang on Bethany! Come here often and know you aren't alone! Could you talk to your doctor about how unhelpful the staff is in getting back to you?thats just not on, frankly. There's enough anxiety that goes with this illness without having added worries when you can't get the news you need.
I just wanted to say I'm thinking of you and sending you a big hug!!:hug:

 

[EthanPSU]

Hey Bethany,

I know somewhat what you're going through with being young and wanting to go out and such, im in the same boat. Anyways, I was the same with remicade, was on it for about 2 years but then it just stopped working so I had to get off of it, currently on Humira which is working well.

Anyways, I hope you get feeling better soon!

 

[Bethanywrenboyer]

Thanks I really appreciate it. Auntie Em, I think that it does become hard to be around others sometimes in a flare. You are in pain and exhausted, and it can be hard to even function. That makes it a good bit harder to function with other people, especially people who don't understand what you are going through. I hope you get better soon and that you can get back to being yourself. Hopefully I can get back to myself soon too.

Ckt, Thanks for welcoming me to the group. I really think that coming here and talking to other people will help me a lot. I already feel better. I am sure that after this flare I will be able to get back to my usual carefree happy self and not feel so aggravated. I have tried to talk to the doctor about his staff, and I know a lot of other people who feel the same way that I do about them. I love my doctor and really do not want to leave, but I really can't stand the nurse or the people at the front desk. The recently messed up my lab work and didn't run a test that is vital to me being treated, and they didn't tell me the test wasn't run for two weeks of me calling constantly to try and find the results. Hopefully I will be able to find something on Monday when i go to the doctors office.

Thanks for the support again

 

[Bethanywrenboyer]

EthanPSU, I hope that Humira continues to work for you. Remicade usually stops working or becomes less effective after 10 years and I am almost at my 10 year mark and that is where I am right now. Hopefully I will get lucky and find another TNF-Alpha blocker that works for just as long. Thanks for the support.

 

[Ckt]

Bethany that's just so not cool! I can't believe the staff at your doctor not only doesn't report test results to you but actually OMITS the tests you so need for treatment! It's a real dilemma since you have such a great relationship with the doctor. I hope you get good news tomorrow at your appointment.

 

[beccalynn3]

There is nothing wrong with feeling sorry for yourself sometimes. You don't have to be strong all of the time. This disease is very frustrating and when we have flare ups, our activites are limited. I too sometimes think what did I ever do to deserve this. As long as you don't give up the fight, be deteremed to beat this disease and give yourself a break. I wish you luck.:hug:

 

[Bethanywrenboyer]

I got somewhat good news from the doctor. They are starting me back on Remicade next week. I am glad that I will be able to take it again, but i am nervous about it working. In the past year Remicade has been losing a lot of its effeciveness for me. I used t get it and feel instant relief. Now when i get it I feel tierd and it takes longer for the effects to kick in. If it stops working I am going to have to switch meds. Remicade has been the only medicine that has ever worked for me, and i am nervous about switching it up. Thanks for all of the support.

 

[AuntieEm]

emotional 24 hours here. i've been a wreck. called my hometown gp to get some help in dealing with the hospitalist on duty which has helped a little with this anxiety amidst the pain. then found out the gi is on vacation till thur. and didn't actually leave anyone specific to be watching what's going on other than the hospitalist who didn't know he'd left town either.... i've been very upset, amongst other feeling i've not had in a long time.

 

[Ckt]

AuntieEm..I'm so sorry that youre going through it right now!:rosette2:It's frustrating enough to deal with feeling badly and then to find out your doctor left without having proper coverage is adding fuel to the fire!i just wanted to send you s big hug and let you know you aren't alone!I hope the hospitalist can give you some treatment while you wait for your regular doctor to return..love love ..cindy

 

[Jessie_76]

Bethanywrenboyer,

Keep your Chin up and keep hoping for the day they find the cure/ I had my twenty year anniversary with Crohn's this year I spent my 16th birthday in the hospital being diagnosed. I haven't let a flare get me down until this year. I think had to do with holdy CRAP it's been 20 years and still.....well I am sure you get the point. Crohns's is ugly and a thief, but in all it's ugliness and thievery, I find it's a blessing. My 13 year has grown up compassionate towards illness and sick people, I have learned to appreciate the tiniest moments, and treasure every single moment of my life with a certain zest and gusto. I have recently learned that the Crohn's has spread throughout my small bowel, and well...i simply smiled at the Doc and said well that explains why I am not getting better, and said okay what do you think about.....my Doc and I combine our ides to create a treatment plan new when needed, this has been our relatiohsip over 15 years plus. read as much as you can about alternative therapies, don't jump into anything with out your DOC,
use traditional modern medicine, and listen to your guts, don't let it get you down allow it to enrich your life, in other ways. What doesn't kill us makes us stronger!!!!!! As far as I am concerned those of us living with Crohn's are on a level of cancer survivor's......We are the strong survivor's of Crohn's and survivor's are never beaten. HUGS

 

[AuntieEm]

iv steroids & pain meds mainly at this point... of course now they are wanting me to stop the iv pain meds and I would if I could pass stool. The dr wants me to eat a soft diet (which is backing up and painful) to try and "make" it go through but of course the iv meds slow the tract (even though it's not working right now anyway). I'd rather just total rest it. Trying to follow instructions but having "mini me breakdowns" as I go. Hosp. is 1.25 hours (more depending) on traffic from family so alone most of the time. DH stayed and fought them with me yesterday. Sorry I'm not typing very good between the pain and using this unfamiliar laptop. but so glad I can vent and try and stay sane.