I'm feeling sooo down today

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LadyHawk701
Regular Member


Date Joined Nov 2007
Total Posts : 49
   Posted 11/11/2007 3:40 PM (GMT -7)   

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 1st.  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. 


Diagnosed with UP in Feb 2005 Developed into UC by Jan 2006
Rowasa, Asacol, Colazal, Entorcort
Hospitalized July-Aug 2007 Pancolitis
Contracted C Diff.
Salumedrol, Flagyl, Remicade, Demerol, Prednisone, Antibiotics
Prednisone tapering currently down to 5mg
Imuran 100mg
Remicade every 8 wks next treatment the week of Thanksgiving:(
Zoloft 100mg
Mama to Katie and Jack
 


happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/11/2007 3:52 PM (GMT -7)   
Hi ladyhawk,

I just wanted to give you a hug and kiss. Good luck and hang in there. What ever you do, do it for you. :)
Mild case of UC~04   Left Side Colitis~ 05-06  Pancolitis~ 07
 
6-mp 50mg ~ 1 pill a day ~~ Mesalamine 4mg ~ 2 a day ~~ Iron 325mg ~ 1 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg ~~ Asacol 400mg ~ 8 pills a day
Bella Alk/PB 16.2mg ~ 8 pills a day ~ Lexapro 20mg ~ 1 a day ~ Birthcontrol ~ 1 a day
 
Doctor Says If This Dosen't Work ~ Remicaid Next ~~~ If That Doesn't Work ~Surgery.  
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/11/2007 4:11 PM (GMT -7)   
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
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 150mg 1xday nightly;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 2xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 11/11/2007 4:30 PM (GMT -7)   
Have you done any research to see if Remicade offers a financial assistance programs. I believe there are some drug companies that help people in situations where they can't afford meds.

I am sorry you are having a tough time. Please hang in there and keep us posted.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/11/2007 5:37 PM (GMT -7)   
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
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


quincy
Elite Member


Date Joined May 2003
Total Posts : 29863
   Posted 11/11/2007 5:52 PM (GMT -7)   
I can see how it would take its toll on you...always 'good' to know you're his sickest..eeks....I agree with the others to seek out an assistance program.

Are you still on the Imuran?

It's good to hear you're improving.

Healing thoughts sent your way.

quincy xx
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 11/11/2007 7:50 PM (GMT -7)   
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 :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/11/2007 8:11 PM (GMT -7)   
my heart & thoughts & prayers go out to you & yours...I'm not nearly as sick as some of you, but have been sick a long time. I know how it feels to be so sick & costing your family money..I feel guilty sometimes too. But know that you're not alone, we all feel soo down at times too. It's so hard to always be on the upside. I know that that's the job I have in my home & when I can't be that person for everyone, I feel like I'm letting them down somehow (not that you feel the same way, that's just my point of view; everyone in my life comes to me to be uplifted). My hubby is always working to cover the bills, etc. So anyway, you're not alone, you are loved & it's ok to be down too. It's not our fault we're sick!
             
 
Diagnosed with UC Aug. 2007
Diagnosed with Degenerative Arthritis, 2006
2 asacol 3x daily  for UC.  Canasa suppositories, also 3x daily, as needed.
1 depacote 3x daily for bipolar disorder
 


LadyHawk701
Regular Member


Date Joined Nov 2007
Total Posts : 49
   Posted 11/12/2007 8:06 AM (GMT -7)   

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.   


Diagnosed with UP in Feb 2005 Developed into UC by Jan 2006
Rowasa, Asacol, Colazal, Entorcort
Hospitalized July-Aug 2007 Pancolitis
Contracted C Diff.
Salumedrol, Flagyl, Remicade, Demerol, Prednisone, Antibiotics
Prednisone tapering currently down to 5mg
Imuran 100mg
Remicade every 8 wks next treatment the week of Thanksgiving:(
Zoloft 100mg
Mama to Katie and Jack
 


sdaless
Veteran Member


Date Joined Jun 2005
Total Posts : 1396
   Posted 11/12/2007 8:28 AM (GMT -7)   
Welcome to the forum. My heart breaks for you and the pain you are in emotionally and physically. I would get a 2nd opinion before I any drastic decisions. Good luck.

Stacy
Current meds are:
 
Asacol 6 pills a day
Lexapro 20 mg once a day
Ativan .5 mg when needed
 
 
 

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