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04-19-2012, 06:15 PM   #1
kd82286
 
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Join Date: Jun 2011
Location: Charleston, South Carolina
So Tired!

I am so tired of this! Crohn's is a TERRIBLE disease. I am 25 years old and I can't even go out to eat or to a movie anymore without dealing with the constant pain in my belly It makes me want to scream sometimes. I just want so desperately to be normal. The Humira, which never did a complete job anyways, has stopped working all together so now I have to have my third colonoscopy in five years the week after I graduate from college with a degree that I cannot even use because I can't seem to avoid getting sick. I want to teach more than anything but because children carry so many germs and I have no immune system to speak of I am currently enjoying the last remnants of a bad case of Mono. My GI informed me yesterday that he was proud of me for graduating but that he felt that it would not be to my benefit to teach as long as I remained so ill. What kind of life is this!?! Another exciting problem is that I turn 26 in August which means that I lose my health insurance with my father. That means no meds!!! I make less than $1000 to much a year to qualify for medicaid but I still fall well below the poverty line! Not to mention I spend most of my extra money on all my meds now! Crohn's disease should be an automatic qualifier for disability but of course not!!! I know that this is just a rambling list of complaints but I really needed to let it out. My family and friends listen but they don't really understand.
Thanks guys!
__________________
Katie




Meds: Asacol HD 800mgx3
Humira every 2 weeks(which is no longer effective)
Bentyl 3x's daily
Tramadol as needed
Prevacid
Zofram
Allegra
B12 injections monthly
And of course the Hated Prednisone during our recurrent flares!
04-19-2012, 07:36 PM   #2
raechel
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It is good to get it all off your chest :-) I know it helps me! I am 24 and dreading turning 26 in a little over a year too... and living with a not so awesome quality of life right now. It's a big bummer that you are in a position right now that you can't use your newly earned degree, but kudos to you for even being able to push through school with this illness and finish! I too wish there were more available for truly sick people like us in regards to assistance. Our system truly is broken. Best of luck to you, and as hard as it is, try to stay positive. Just saying that makes me feel like a hypocrite, lol... but hey, it's worth a shot right?
__________________
Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
04-19-2012, 08:10 PM   #3
Karen!!
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Sorry that you are going through such a hard time now.. Glad you got it off your chest.
04-19-2012, 09:05 PM   #4
kd82286
 
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Location: Charleston, South Carolina
Thanks y'all for lettin me vent. It's incredibly frustrating sometimes living with this disease as I'm sure you both know. I guess I will just have to keep hoping for the best!
04-20-2012, 11:07 AM   #5
wolfem
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I totally know what you mean. I feel like I can't move because then I'll lose tons of weight. Ugh. Can't hardly get anything accomplished. They say my crohn's is in remission. Whatever! I don't digest food and I keep telling my doctor that but he just goes off of images. He doesn't want me on meds but I'm so tired of battling the weight issue and having to eat 12 meals a day. This is crazy. Not only that but stress makes it much worse so I'm on some antianxiety meds.

Its nice being able to talk to others with this disease
__________________
DX: 2010 Crohns (in remission), gastritis/acid reflux, TMJ and goiter
SX: Terminal ilieum resection
Past meds: Prednisone (short term), Pentasa
Current meds: Sertraline, Seroquel, Lorazepam (as needed)

Supplements: Trace min EOD, Fish oil, calcium+D, B12 sublingual + B complex, goat yogurt



04-20-2012, 09:48 PM   #6
kd82286
 
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Location: Charleston, South Carolina
I agree completely. I used to run three miles every morning. Now the thought of getting up and walking to the other room just wears me out. I have forgotten what normal felt like! My Doc is great. He really is trying to give me a better quality of life but I knew before he even said the dirty C word that it was what he wanted to do. I hate the thought of letting go of the Humira because I am terrified of the pain that I was in when they started me on it but he said that I shouldn't be feeling the way I am if it's still working properly. It's just a matter of time before it stops all together. I'm hoping the Cimzia will be a solution for me. Like I said I'm only 25. I don't want to have to live with a bag attached to my side for the rest of my life. I'm so grateful for this forum. It is wonderful to be able to talk to people who know what I'm going through!
04-30-2012, 12:28 PM   #7
Heather_D
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Hi Katie, that's horrible. I would be so upset to have a degree that I didn't think I was going to be able to use. As scary as it is have you thought about surgery? At 25 I would have completely said no (Iím only 29 now), so I completely understand if you are against it. However, I just had surgery about 6 weeks ago and I feel so much better than I have in a long time. I was on Cimizia for about a year and half, but that apparently didn't work. My more detailed story is in the surgery section in the sticky thread. Surgery doesn't mean you'll have a bag, I don't have one and there are a lot of people who have surgery that do not require a bag. They removed the diseased parts of my intestines and then connected what was left. I know it depends on what part of your intestine is affected and how much, however they are coming out with better surgical (and medical) options all the time. I know it's not a great option, but something to think about as you may be able to live more normal after. I am on maintenance meds now, but it's only 4 pills/day (before I was on 8 pills/day plus the Cimizia and occasionally Prednisone). My GI is hoping by putting me on maintenance meds that I will be in remission longer. Good luck!
__________________
-Heather

Diagnosed: Crohns Oct 2006
Prior Meds: Pentesa 4000 mg/daily; Cimzia 400 mg/monthly; Prednisone off and on from Aug 2011 - March 2012
Current Meds: Apriso started 4/14/2012
Surgery: Laparoscopic Ileocolic & Rectosigmoid Resection March 22, 2012
05-04-2012, 01:12 PM   #8
Claire617
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Hi Katie, I had to quit my teaching degree to have open surgery to remove my terminal ileum when I was 18, like you I love working with kids and having that surgery allowed me to have my life back, get a job as a teaching assistant and now a couple of years later I'll be starting the degree again in Sept. So if you've got a good team of docs behind you I'm a total advocate for surgery.

I'm on methatrexate atm so I definitely catch loads of bugs from the kids, about every 3 months I'm hit with the flu for about a week but the school staff are amazing and very understanding which is a major help.

I seriously don't know how you guys cope without free medical care, the stress you guys must be under, I can't even imagine having to cope with that on top of the disease!!

Hope things improve
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Diagnosed Feb 2003
Surgery Apr 2010

http://www.facebook.com/people/Emma-...889?ref=search
05-04-2012, 01:22 PM   #9
yoadrienne
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Location: Indianapolis, Indiana
Hi Katie,

As far as your insurance goes, I am in a similar boat, only I was dropped from my insurance. There should be a state program that you are qualified for because no regular insurance carrier will accept you. It is expensive (mine is $511/month) BUT dependent upon how much your meds are the the risks of what may be coming down the road, it may be worth a shot to look into. It isn't Medicaid, in Indiana it is called ICHIA. I am federally eligible because I have Crohn's and no company will accept me (until Obamacare kicks in in 2014, then they have to accept everyone, no matter of your pre-existing condition) so I assume your state has something similar.

It's definitely not an easy road. It is nice to have a place like this to vent and glean ideas from when we need help or anytime at all.

Blessings to you!
05-04-2012, 02:02 PM   #10
Mia E
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This condition sucks! Love to all of you!

I just had surgery too after a year of pain and vomiting. Only 4 weeks post surgery but for me it is looking good so I would say its a good option. Hope your insurance works out!x
X
__________________
-april 2012-diagnosed crohns- only after surgery (resection terminal ileum,ileocecal valve,appendix & cecum)

for me crohns is not cool
05-11-2012, 05:37 PM   #11
ruthyp
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Join Date: Mar 2011
Location: Colchester, United Kingdom
totally agree, crohns disease feels like it ruins EVERY part of your life. I cry alot from the amount of things it has changed for me, im 23yr old and cant do half the things my friends do. i have to plan in detail whatever i do, for "just incase" situations, simple things arent so simple anymore. My sister has told me its ok to get angry, and she right, because it sucks, its ok to get sad and cry, it doesnt mean we arent strong, we all are!! iv learnt to show exactly what feeling i have at the time, i used to bottle it up as was worried about other peoples feelings, but now i go about it in a different way and feel alot better for it. Venting is a very positive thing to do, VENT AWAY! x
__________________

CD diagnosed '08 however GI recon iv had it since birth.
------------------------------------------
Prednisolone 40mg daily
Mercaptopurine 30mg daily
Tramadol (as much as i can somedays)
05-16-2012, 07:28 PM   #12
Snap
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Hi Katie, I feel your pain. It's sooooo hard dealing with the cost of medicine, procedures, etc. I am married with 2 boys and trying to hold down a job to have medical insurance. Well, our insurance will be cancelled at work, so I am trying to find a new job--ha what a joke. I am a Certified Medical Assistant, so I obviously work in a medical office that will soon drop insurance coverage. Really? I've had Crohn's for 12 years, and am 5 months postop with an ileostomy--and I feel human again. It's bliss. However, I am really nervous about how I'm going to afford ostomy supplies, etc. We are already in ginormous debt from my many, many, many, medical procedures, etc. You know how it is. I have looked and looked for programs, have looked on the Crohns and Colitis Foundation website--and so far nothing. I don't think we have adequate protection in the US. If your interviewer knows you have CD or an ileo, etc.--you are out for sure! Yes we all know it is discrimination--but it happens and it is very difficult to prove. Look at me! I'm venting--and I should be helping you! Misery loves company! Nah--I'm not miserable--but we just need to keep fighting. My next course of action is to send letters to our State Representatives and any other politician that I can think of---they need to know what the "real world" is like when you are faced with this disease! I'm keeping you in my thoughts and hoping that you can feel better, Katie. Snap
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