Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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SCREAMING

JustSimplyMe
JustSimplyMe
I am dealing with so much right now, I don't know how I'm supposed to survive it all. I have Crohn's, I'm anemic, I have osteoporosis, arthritis. I take what seems like a never ending multitude of drugs, and even with them, I can't seem to reach normal. I have lots of issues with pain. All these things I have learned to cope with. But now, now it's getting to be too much. It seems like whenever I adapt to the newest problem thrown my way, another one- or ten- comes along and knock the wind right out of me. My last hospitalization was early January and the doctors seemed concerned with my heart. I didn't really think twice about it, because they have checked my heart before and it's always been fine, but now I am experiencing lots of chest pain and shortness of breath. Along with their concern with my heart, they found cysts on my kidneys. Yay, a new thing to worry about.
I was out of state when I was admitted to the hospital, so my insurance covered NOTHING. I have no job or means of income right now, so I made the doctors discharge me. Now that I am finally back, I have a pile of massive bills I have no idea how I'm going to pay. I can also no longer find excuse to avoid going to the doctor to find out what's going on with my body. I am so tired, and so scared. I am completely overwhelmed. I am only 22, my heart should be fine, so should my colon, my bones, my kidneys, and everything else. With my living situation about as bad as my health, and about as likely to be remedied anytime soon, I find myself just wanting to scream.. and scream and scream. I really need to get out of the house I am living in, but my Crohn's keeps me from working, and my disability case is still pending. My mom thinks I was put on this earth to be her personal slave and someone to yell at whenever she's not in a good mood. She just got a new car and decided it's too nice for me to be allowed to use, so I am feeling more trapped here then ever.
I am not suicidal, but some days I am just SO over it all. Why can't I enjoy my life, instead of constantly having to fight with my body? I am in so much pain, mental and physical. I just want to be healthy and happy. Why is that too much to ask?
I'm sorry to whine and complain to everyone, but I don't have anyone to talk to, and I was beginning to feel as though I was suffocating with my lack of ability to communicate with anyone about these things.
Thanks for listening (reading).
deleted_user
deleted_user
Hey, all I can tell you is that God knows exactly what you are going through. Try talking to him and reading the bible, and built your faith up. God bless.
jn4025
jn4025
I'm so sorry to hear you're dealing with all of this. I know how frustrating it can be when you don't have anyone to talk with, or any place to vent; but everyone on these boards can understand what you're going through. I'm in a similar situation as far as my ability to pay for medical bills (I'm self employed, have insurance that I pay for, but it has a very high deductible, along with high premiums, and my income is quite low). I've found that if you ask to speak to the hospital financial assistance department, you can usually get most of the cost written off, or a good portion of it (after submitting a bunch of paperwork). Also, with medications, I ask my GI for samples all the time, as well as applied directly to the drug manufacturer for a discount on medication. Luckily I was approved for free Lialda for a year, which helps tremendously (as otherwise I was paying $600 a month). You need to get yourself well first, so you can then be able to work, and support yourself, etc. (easier said than done, I know). Maybe you could show your mom some of these sites, and try to explain how overwhelmed you feel. It has taken me years to get my family to try to understand the things I go through and I know that stress makes it harder to recover. Sending hugs to you :)
rmb
rmb
You must vent and you must communicate with people who get this. Otherwise, it will eat you alive.

jn4025 advice is right on. As far as your bills, call every one of your provider's who have billed you and work out a payment plan or deferment. Most will be willing to help you, but you have to be proactive about it. Tell your GI doc about your situation, and see if he is willing to work with you more, particularly with med samples, or directing you to manufacturer of meds who have patient coupons and discount cards.

If you are not well, you won't be able to ever get out of your situation, so seeing a doctor and getting to the bottom of things may be a burden short term, but it will help you long term, so you can find a different place to live. Stress is a very evil trigger with IBD for a lot of people, so if you don't have an outlet for expressing yourself and dealing with this, it can really affect your health. Have you considered seeing a counselor, particularly one who specializes in chronic illness? There are many therapists who have a sliding fee scale or don't charge if you are not financially able to afford it. It can be very helpful in terms of sorting things out, venting and learning about different resources available to you.

In the meantime, vent away. We are all here for you.
deleted_user
deleted_user
I know exactly how you feel. I suffer "breakdowns" every few days, and I find myself saying the same words you are: "Why can't I enjoy my life instead of fighting my body, and why can't I just be happy?"

Please......vent away! It's necessary. We are here to listen and help. I don't know what I'd do without people who understand what it's like.
bart4u
bart4u
That's OK to vent. We have all been there. When I was your age I felt the same way. My Crohns was very bad and I was in and out of the hospital. Just finished college. I was unable to travel to Europe with my friends because I was sick, I could not work, hated living at home and it was hard to date. I felt so trapped and the disease was really messing up my life. There were no computers or support groups back then. My Crohns went into remission and I was able to get on my feet. See if you can get your bills reduced, maybe a therapist can talk with you and your mom. See if there are any therapy groups around you. Hang in there and i hope you start to feel better soon.
Faithfully77
Faithfully77
You may also look to support groups in the area. I know a few hospitals in our area that have different support groups that meet for different health conditions. I prefer these boards due to time constraints, but it may be really nice to have someone in your area that you know is going through the same things. With a local support buddy, y'all could do for each other on your bad days; alternating good days.

I heard something once when my tough times were insurmountable. How do you eat an elephant? One bite at a time. It's the only way. Try not to look at the entirety and tackle only what you can in a day's time.

I do hope things get better for you. I'm sorry it's been so tough. Hang in there and keep venting. It's okay and it is good for you to vent. You're in my prayers and thoughts.
deleted_user
deleted_user
I know that all of us will agree that we are supportive of you and that things will be ok. And I know your thinking that easier said than done. And I agree with you on that also. I remember having to go through the tests, procedures, hospital, etc and everyone was like well it's the right thing to do and everything will be all right. Of course when the bills came like you are experiencing none of those people were anywhere to be found. And after having all the stress of your condition now you have financial stress on top of that. I said all this so you know that all of us here can relate. With that said, we are still here. I personally (and many of my wonderful friends here also) have a personal relationship with Jesus Christ. I'm not a freak Christian just a strong believer. And because of Him I was able to overcome many of the UC obstacles. And I truly believe that God is the giver of wisdom whom He has given to many of the friends here. I will definitely pray for you and trust God to meet your needs. If you ever need to call me feel free to write and I will give you the #.
Guy
ashley906
ashley906
That is a great idea about writing to drug companies- drs get samples and can call their rep to bring in more if they are out. Lialda has a pay no more than $10 a month card and so do a lot of other meds. I would work hard towards getting your meds paid for.
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