I'm feeling sooo down today

Had an appt with my GI on Friday (3 month follow-up  from my hospital stay)  He says that on paper everything is showing improvement.  My ct scan from last Tuesday showed that the wall thickening I had in my entire colon 3 months ago is now showing only in parts.  He seemed very pleased about that.  He did say the CT scan would not show all the inflammation and that I should have another Colonoscopy in the next month or so.  I still have a lot of pain with every BM.  I have about 5-6 BMs a day, which seams really good to me.  He was telling me that he doesn’t know if the remicade is what is helping me, or if the prednisone helped (I now have been officially off of it for 5 days) or if the imuran has fully kicked in.  I asked him if he knew of any programs that help people who cant afford the remicade.  He said he didn’t.  He says it’s up to me if I want to stop taking remicade.  We really can’t afford it anymore.  He isn’t really sure if that’s what has made me better or if the other drugs did.  My fear is if I stop taking it and it WAS the drug helping me, chances are I can’t start it up again and have it be effective.   I hate the idea of throwing away our financial security and stressing about money if the drug isn’t whats making me better.  But I’m scared to stop.  My doctor also wants me to meet with a surgeon.  He said he has patients less sick than me go that route.  I asked me what meds his sickest patients takes and he tells me I am one of his sickest.  Gee not what I wanted to hear.  Anyway I don’t know what to do.  I’m stressed and tearfull.  My husband has put in for a transfer/promotion in hopes to bring in more money and to move us back to my hometown where we have some family and friends for support in case I get really sick again.  Where we live now and have for the past 8 yrs we have no family close to us.  But I love it here.  It’s been my home and it’s been the only  home my kids have ever known. I feel so guilty we have to change our lives b/c of this darn sickness.   If he gets the job we would move by Jan 1^st.  So now is a terrible time for me to have surgery or for me to have another hospitalizing flare. 

I’m sorry this post is so long,  I’m  feeling soooo down today.  I’ve been hiding my tears from everybody. 

I am sending you all my thoughts and best wishes, I am so sorry you are going through this. My only advice would be to see if the remicade is helping or not, if not then you know and may be easier to make some difficult decisions, but I don't know besides going off of it, how you would know. I don't know what's helping me either. If you are his worst case, I'll give you some advice that I have not followed for myself yet (though bit different scenario) get a second opinion, but w/the insurance not sure how costly that will be.

I wish you all my best, take care.
Beth

Oh, darlin', I feel just awful for you. I can't imagine being a mom and a wife that people depend on and then getting so ill with this disease. Do you not have any insurance? Could you not get some help from the county where you live, some type of emergency medical assistance? Have you contacted some of these groups that help folks get medicines who cannot afford it? Have you contacted directly the manufacturer of Remicade?

I don't know what to tell you. There are pros and cons to all of the decisions you have to make.

(Pro) Perhaps being near family would be more helpful during this time. I know my family is a great source of support to me.
(Con) But moving is very stressful, and with the holidays right around the corner . . . that's a lot to take on.
(Pro) Assuming it's the prednisone and Imuran that's helping you could allow you to stop the Remicade and save the $$$.
(Con) Assuming it's the pred and Imuran and being incorrect could mean Remicade could stop working for you.

One thing that stays with me after finding this site is how I've changed my attitude about the potential for surgery. Hey, it AIN'T the worst thing in the world. The worst thing in the world is being in the middle of a flare and either being unable to afford to treat it or being unable to successfully treat it and get it under control. Of course, cutting out a part of your body is a thought that initially strikes a lot of fear -- even horror?!? -- into your heart. But when I've heard people describe it as cutting out the war that was being waged inside of your body, a bell went off for me and I realized that's exactly what you were doing, cutting out a war, allowing you to find some peace.

You are not purposely being sick, so please don't put additional stress on yourself by feeling guilty about it. The only thing you can control is how you think about and react to this illness. Punishing yourself when you're already down is a foul, so don't do it. Okay?

Hugs,

Mitz

LadyHawk - I'm sorry to hear that you're feeling so down. But I totally understand why you are. We're hear for you!

I would suggest calling Centocor and asking them about assistance for Remi. Perhaps contact your insurance carrier as well. There might be something out there that we don't know about! Also ask them if you are near your out-of-pocket maximum. Maybe you're close to having them pick up the tab! (For the rest of 2007 at least.) Can your doctor right a note about it being important for you to have and get you a better rate? This may take more than one call as some associates may not know. Does your insurance have a nurse assistance hotline? I know for many chronic conditions, insurance carriers will have you consult their nurses to make sure that all is being done for your care.

Would it be possible to stop the Imuran and continue Remi treatments as a way to weed things out? I don't know - and probably should know - about quitting Imuran... Can you go back on once you've been off? Does your body build up a resistance like it does to Remi?

I would suggest consulting with the surgeon. That way you'll know more about choices and options. A consultation doesn't mean you'll have surgery - it's just a time to ask questions and learn :)

Where are you located? Sometimes family isn't your only support. Friends can work wonders as well.

Mitz's advice about not letting yourself feel guilty is right on! I think that's something most of us can use a reminder about :)

Hugs! Hang in there :)

Thank you everyone for your kind words and prayers.  It means a lot.  Everyone is so nice here.  I am so thankful that I found this board.   It feels good to talk to people who are actually are experiencing some of the same things I am. 

I visited livingwithuc.com and signed up for their newsletter.  I think this website is actually run by Centocor the makers of remicade.  Anyways about a week later I received an email from Centocor offering help to those who can’t  afford the out of pocket expense.  I called the number and the program is only for people who haven’t started receiving treatment yet, which seems totally absurd to me.   I already had had 2 infusions at this point. 

I have already met my out of pocket max (5,500) for the remicade treatments, so this month’s treatment will be picked up 100% by my insurance.  So that is some good news!.  But in January it starts all over again. 

I have applied for Social security disability assistance but they tell me it can takes months to get a decision.  And I hear this is very hard to qualify for.

I am still on Imuran 100 mg.  My doctor told me it takes about 3 months for it to start working and I just reached that point.  As soon as my ins. approves it, I’m being tested to make sure that I’m at the optimal dosage for the imruran, to see if it can be increased w/o being toxic.

As far as the surgery consult, I guess it can’t hurt to educate myself a little more on it.  It would probably make me less scared.  I think I might wait to find out if we will be moving or not. 

Thanks again for all your kind words and for helping me work through this.