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Crohn's Disease
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Posted 12/21/2008 2:28 AM (GMT 0)
Hi...I just need a place to vent some among people who understand.

I got my diagnosis two years and went immediatly into full remission. I've never been on steroids or anything. I did a short stint on some mesalamines, and colazol, but I only took that for a couple months. So, it's been two years. I have even thought that maybe the dx was wrong, I felt so good. I felt guilty telling people that I have Crohn's because they always looked at me with such pity and told me of people they know with it and it's so horrible, they are so sorry for me, must be so hard, etc etc. But it wasn't. For me, it was no big deal. I had more trouble with my rotten gallbladder then my CD.

Now here I am. The honeymoon is over. I'm having my first flare and am scared to death. Honestly, reading these boards scares me more!! Seeing how bad off so many people are, how many drugs they are on, how many side effects they have to live with, how much quality of life they have given up, how much pain they live with all the time. Everyone keeping their chin up and being so brave. I don't think I can be that brave. I think I may just want to curl up and cry!

Worse off, I don't have insurance OR a GI. I went to one here where I live a couple times, but he seemed over aggressive to me, and the insurance I had at the time wouldn't pay him and I owe him hundreds of dollars. My husband is disabled and I don't work, so I don't have insurance. What I can afford to pay in insurance isn't worth the paper it's printed on. There's no help for low-income married women as far as government programs goes.

So, I"m plumb afraid right now. Afraid of needing a bunch of tests/procedures I can't afford, afraid of the drugs I need to be on--their side effects and how to even get them, afraid of the idea of another howevermany weeks of the liquid diet I'm on. I can only eat jello and chicken noodle soup right now, and I'm pretty well sick of it!! IT doesn't help that it's Christmas and I am baking for gifts and have to cook meals for my family and I can't eat any of it! I'm afraid that all the red in my stools isn't just food dye (even though I know that it's highly likely). Afraid that I won't know when it's time to go to the hospital, and afraid of what they might do to me if i do go. Afraid that I can't fulfill my duties as a caregiver to my husband and children (whom we homeschool)

I go to see my sweet GP on Monday. I hope she can help me and the answer will be pretty cut and dried. AS I said, I can't afford a bunch of tests and such.

Sorry to be a whiner.....but I bet you all remember the beginning too and can relate to my fears.
Posted 12/21/2008 2:34 AM (GMT 0)
oh Noodlebugs what you need is a "Huggle" my little grand-daughter Sophie gives great ones. They are a cross between a hug and a cuddles.
take care,
Tess
Posted 12/21/2008 3:45 AM (GMT 0)
I have a similar story being diagnosed in 2001 and not on any meds because my disease was so mild. Mild enough that I took it or granted and this past Sept I ended up in the hospital with a bowel obstruction. Now I have to have surgery. I'm scared, but the people on this forum have helped me deal with all of my insecurities.
It really makes me angry that you cannot go to the doctor for the tests that you need. This insurance BS has gotten way out of hand. I have to pay my copay of $1500 for this year,and now with surgery coming in 2009 I'll have to shell out another $1500. I don't know know how I'm going to pay that..
It's a shame that we don't go to the doctor because we worry how much money it is going to cost us. I thought that are good ole Goverment was going to give Health insuranse to everyone!!! What happend to that!!
I'm really sorry for venting, it just makes me angry!
I wish you the best and I hope you feel better real soon...

God Bless!!!
Wolfie
Posted 12/21/2008 4:09 AM (GMT 0)
First of all, calm down and BREATHE! Keep in mind that many people who post on these forums are here precisely because of the severity of their condition. This doesn't mean that you'll experience the same problems. Rather than stress yourself out with the fear of coming down with the same symptoms that many of us have, use our experiences as a way to stay vigilant and remember that each case is different.
Being that you have Crohn's, unfortunately, it's to be expected that you flare up every now and then. During these times it's best to keep a food journal to know what bothers you when you're flaring, what you can tolerate so you can maintain your health, and never hesitate to ask your doctors any questions. There are places like this that you can post and there will always be someone to help, and there are places you can call.
As for your insurance, I can't help too much there, but I do know that there are programs that will help assist people with chronic illnesses that are having difficult in getting health coverage. I know that COBRA is expensive, but I've heard it's helped many people get the assistance and medical treatment that they need.
And the hospital bills...well, that's what our lot gets. I don't know a single person with Crohn's who doesn't owe someone money. I already have three bills gone into collections, and I owe at least $20,000.00. All of this from eight months of being diagnosed and sick at 19 years old!

You just need to sit back and breathe, take care to remember the things that you get done, and work at it slowly.

I understand this is very frightening, but there are many things that can be done to help. I know a lot of us complain, and that's perfectly OKAY because you need to! But I think in the end we're all all right despite our hardships. "What doesn't kill you makes you stronger" has never been more true.

Keep posting!
Posted 12/21/2008 5:27 AM (GMT 0)
I echo what LMills said. I think she has given you some fantastic advice.

I can't advise you on the insurance situation because I'm Australian, but can tell you that we do have some people on this forum who know a lot about the American insurance system, and they may be able to give you some pointers on where you can get some financial help.

Also, I'm not sure if you use the Flylady forums, but you may find them very helpful. There are discussion groups for people who homeschool, who live with illnesses, who care for people with disabilities. Many of the ladies there are dealing with multiple life challenges, and you may find it really encouraging to contribute to their discussions. I especially think that their focus on not panicking, and on tackling huge problems one baby step at a time might really help you just now.

In the mean-time, keep breathing and try not to panic. I know it's hard - flares are horrible and your insurance situation would frighten anyone - but the stress is only going to make you sicker, so please do try and try to worry about tomorrow, tomorrow.

Best wishes,

Ivy.
Posted 12/21/2008 9:40 AM (GMT 0)
Hi I know it seems bad some of the things people go threw here but our strength is in being together and helping each other threw the hard times .Your Dr. will probably be able to prescribe something to help you get over this flare. I used to like eating cream of chicken soup when I was in a flare even mixed with water it was good to help get the appetite going. How old are your little ones? Don't let some bad times get you down usually we come out of these flares and I know it can be hard for a bit but life does get better. Come here and get the support you need now. You might want to get your blood work done too are you on vitties and B-12 as a lot of us have low B-12?

Keep in touch and definitely let us know how your appointment goes Monday.lol gail
Posted 12/21/2008 4:25 PM (GMT 0)
I bet your GP is going to prescribe you Prednisone first. This is a good med to quickly get the inflammation under control, and its CHEAP!!! Yes it does have some side effects, but i think the best thing about it is, it gets you feeling better quickly. You should also try to get on something more longterm as a maintainence medication to keep your Crohns in control. Everyone should always take some type of maintainence med at all times (unless you are allergic, but most arent). I once enjoyed a 20 year remission that ended abruptly with an emergency resection. While I was busy trying to ignore the Crohns and get on with my life, it was still in there ticking away doing its damage. So do also ask about maintainence meds.


Good luck!
Gail *Nanners*
Posted 12/21/2008 10:49 PM (GMT 0)
Hugs Noodlebugs2!

I know how hard it is to NOT worry about things, but if you can try, it will benefit you.  I have a very hard time with this so I know how hard it is.

Nanners is right--prednisone is an inexpensive drug and it works fast and is very effective.  With maintenance meds, I would ask either your GP or if you end up seeing a GI, if they have samples you can take.  My Internist is very good about giving me samples and my mom, who doesn't have insurance or a lot of money, and my Internist basically provides samples so my mom doesn't have to pay for them out of pocket.  When I got started on Pentasa, my GI's office gave me quite a few samples of that. 

Some of the doctors where I live and health clinics offer help to pay for medical costs.  That is another thing you could look into.  I am currently trying to see if I can get assistance with some of my medical bills.

I agree with LMills--every case is different.  Please try not to worry based on what others are going through. 

Take care and please let us know how you are doing and how it goes when you see your doctor.

Hugs!

 

Posted 12/22/2008 2:37 AM (GMT 0)
Thanks so much you guys for your support. I am actually doing much better today and have been able to eat some stuff again! I tried a piece of turkey lunchmeat earlier and that did well, and I even tried some baked fish sticks for dinner and it's doing well too! No pain and I'm excited! I hope I have turned a corner here.

I am still going to go to the GP tomorrow and talk to her. I have something else to discuss with her as well--today I was invited on an all expense paid trip to Costa Rica the end of January!!!! I must must must get better by then. Having something else to think about besides my health, my hunger, and my poops have made a huge difference in my attitude, that's for sure!!

To answer a couple things asked: My children are 9, 7, and 3. I started taking my Colazol again a few days ago, and I do get them from a program with the drug company.

Thanks again, and I'll post tomorrow after the dr appt. Since it is my GP, what would be the standard protocol? Prednisone, how much (I weigh 160) and any certain labs I should expect? I figured a SED, but anything else? Just want to cover all bases as this is a small town and she may not treat many crohn's. She's going to have to treat me though because there is no GI for me here, nor can i afford all the new patient fees etc right now.

Beth
Posted 12/22/2008 3:03 AM (GMT 0)
Hang in there! I am always here 4 you if you want to e-mail me: [email protected] (oops should I not post this on here?) Oh well, maybe it will help someone. What area do you live in? Stay Strong, Breathe, Seek Help and Have Hope... You will be okay! LOVEPINK
Posted 12/22/2008 2:27 PM (GMT 0)
The usual starting dose for Pred is anywhere from 30 to 50 mgs. I usually start about 30 mg and go down about 5 mg per week. I would also ask for a CBC just to check all your blood levels. Good luck!
Posted 12/22/2008 6:20 PM (GMT 0)
Dr Appt outcome:

She actually thinks it may not be my crohn's. She said it sounds like my gallbladder/pancreas to her and ordered a bunch of bloodwork. However, since I am feeling eversomuch better, the labs may not show anything.

I went to get the labs done and it's going to be $400, so I am not getting those done.

Reading up on pancreatitis and it sounds like something that can wait if in fact it's only chronic and not acute. While it may have been acute last week, I am better now, and I'm going to have to back burner all these tests until my next go round with it--which will probably be in a few months based upon how it's gone up to now.


So maybe I am still in remission!! I have never fit the profile for Crohn's--It was only diagnosed on a fluke because of the gallbladder pain, but then the CD dx took the focus off the gb and nothing ever got done to fix it. All my problems were blamed on my CD, and I am positive that it was the GB all along that was causing the pain.

I am enjoying a lunch of real food today.
turn
Posted 12/22/2008 7:45 PM (GMT 0)
Just stay away from fatty and greasy foods, they will aggravate your GB.
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