I'm new..and needs help..

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Jesi
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/29/2009 9:01 PM (GMT -7)   
Hello, I'm new to this forum. I was diagnosed with crohn's about a year ago. First it started with me having a huge sinus infection that made my nose and forehead really swollen. Though, I'm not sure if my crohn's had anything to do with that problem. I then got Pancreatitis which was strange because I never drink alcohol, but then I later found out it was CD that caused that one as well. Over the past couple of months I've stopped taking my medicine, I guess you can say I'm in denial about having it. I never like for people to know that I have it since I don't want them to feel sorry for me or to think I'm weak. I know it's a really stupid thing for me to do, especially since I've been told recently that I'm getting too skinny again (I'm 5'6 and before crohn's I was 155Ibs, now I'm somewhere between 133-139Ibs.) I would just like to know if anyone else has felt the same as me. I'd really appreciate some advice on how to get over my denial and work on getting myself healthy again..

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/29/2009 9:22 PM (GMT -7)   
Well, one thing to think about would be that NOT being on your medication will make your illness more prevalent thus, more visible. Then people will know something is wrong regardless.
I know it's pretty difficult to come to terms with, but the best way is to stay on your medication and figure things out in a healthy state of being. There are a lot of wonderful people here who give great advice so do NOT be afraid to ask!!!
I'm sorry you're having a hard time...please, reconsider taking your medication at least for now. You can always think about alternatives later when you're better.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


lechatnoir
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/29/2009 10:48 PM (GMT -7)   
Hey I'm new to this thread too. I was diagnosed about 9 years ago when I was in 6th grade. I guess I am still in denial. I never talk about crohn's unless I am sitting in the doctors office. Growing up with constant blood work and changes in medication made me want to keep that part of my life private. I didn't want people to view me as different or judge me without understanding. I would go from getting an infusion to the soccer field because I didn't want this to change my life. I don't really talk to my family about it because I think my parents feel guilty and they get uncomftorable when i bring it up. I've always had active crohns and I can't seem to find a medication that controls it. I haven't been to the doctor's office in 2 years, since I started college. I recently made an appointment in my college town because 2 years as a full time college student has taught me that this does NOT go away. I've started to think about what my inaction now will do to my body later. haha I feel weird even writing this. I'm used to feeling sick and tired because I've had this since I was 11. I am now just hoping that some kind of medication will work in the future.

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 10/3/2009 6:09 PM (GMT -7)   
Jesi,

I know EXACTLY how you feel. I was there at one time too. I was diagnosed when I was 24 years old and felt like I was on top of the world before being diagnosed. I had a great job, had graduated from one of the best schools in the country, and was a very competitive athlete.

Within a month my entire life changed. I had lost 15 lbs, was pooing blood 15-20 times a day, couldn't eat, etc. After being diagnosed my doctor put me on prednisone, and that is when the love/hate relationship began. I would go into remission on prednisone, gain weight, get the "moon face" and essentially have my life back (though I absolutely despised the weight gain and moon face). After tapering off steroids I would relapse...this vicious cycle repeated for two plus years. It was awful.

During my first year I got so desperate I tried everything. I followed the Makers Diet religiously, bought all the supplements, drank the detoxification clay etc. When that didn't work I tried the Guts and Glory Program, again bought all the supplements, and went through the full thing. That did not work for me either.

Absolutely convinced that I didn't need the meds and that I would heal "naturally" I saw this chiropractor/naturopath doctor that claimed that if I followed her shake mix/supplement mix/etc that she could "heal" me. After four days I collapsed.

I was in denial. I didn't want to take the meds. I especially didn't want to take prednisone because it made me nocturnal, cranky, gain weight, itchy, etc. But I came to the realization that if I was going to have any quality of life I needed to take my meds. I was depressed. I didn't think this should happen to me. I was no longer fast on the bike, my boss didn't really want me at work b/c he could see me withering away and felt like I needed to be at home resting. I wouldn't accept any of it.

It took me about two and a half years to accept the fact that meds were going to be a part of my life. I now gladly get my Remicade Infusions b/c it has allowed me to live "normally" (though it didn't work for me the first year I was on it). I wish I could be in remission without the use of meds, but understand that it is what it is.

What you are feeling is normal. Denial is normal. For me, I needed a quality of life. I saw that the meds helped me ride my bike (though I wasn't as fast as I had once been), they helped me go into remission and not poo myself, they helped me get rid of my anemia, helped me digest food, and kept me from needing multiple surgeries. Ultimately Remicade helped me achieve full remission (it took me over two years to go into full remission without prednisone). I never, EVER fathomed that I would be in remission b/c I was so sick for over two years. But it happened. And it's because of my "normal" life now that I will continue to take my meds.

HUGS to you! You will be OK. It takes time to adjust! Just let it go and accept that you will be on meds. Easier said than done I know, but you will feel like a heavy burden has been lifted off your chest once you accept the fact that you will take the meds b/c that is your new normal. That is what is normal for you. And that is okay!
turboemma.blogspot.com/


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/4/2009 5:58 AM (GMT -7)   
Well I can tell you this is not a disease you can deny. If you don't take your medications the disease will continue to do its damage and you could end up having to a resection or even a bag. This is a chronic and incurable disease. I know for fact the damage that can be done if you don't take your meds because I once enjoyed a very long remission med free. While I was busy getting on with my life, the disease was still in there doing damage on a microscopic level and I ended up having an emergency resection. It was not a pleasant time in my life and it took me years to get back on track. Why go thru that yourself? You need to accept the fact that this is a disease that will be with you for the rest of your life. I am successfully maintained only Asacol, and for me personally, after 34 years of the darn disease, I will NEVER be without maintainence meds again. JMO

Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 10/4/2009 2:17 PM (GMT -7)   
Nanners,

Your post helped me a lot. I was always hoping that I could one day come off Remicade and be "medicine free." Now I understand why my doc has been telling me I will never really come off the meds! I had NO IDEA the disease could still do damage at a microscopic level while in remission.

Thanx for the great info! I wish my doc could have broken it down for me like that!!

Take Care!!! =)
turboemma.blogspot.com/


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 10/4/2009 7:32 PM (GMT -7)   
I'm like Nanners, I quit my meds because I felt okay or I thought I did and because I thought doctors just get paid to push meds, Well needless to say, I paid the price! I had surgery in Feb 09 because of an obstruction that I had in Sept 08. There was signicant scar tissue and narrowing and no meds would fix it. Now I do what the doc says like a good little patient.
I've found that talking about my disease has helped me and also helped the people that I've told. They don't know what this disease is all about and it really wakes them up how serious the DD really is.
Most people see us when we look okay and not when we are suffering.
Denial is normal! Talk to others about it and educate them and yourself.
Please take your meds!!!!!!!!!!!!!!!!!!!!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


TMK
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/4/2009 9:00 PM (GMT -7)   
Im new also but not to crohns remission for yrs came out few months ago,Im on Lialda
tramodol(for pain,arthritis)xanax n started EntocortEc Im finding myself confused/forgetful cannot consentrate n very moody is this nomal?Doing pillcam on tuesday(doc thinks theres narrowing) Im I nuts or is it the meds?Im in college in very frustated! I need answers please.Oh I did gain 3lbs after loosing 35lbs Down to 113Lbs
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