Starting Remicade tomorrow wish me luck

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mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/24/2009 12:09 AM (GMT -6)   
I am experiencing the worst flare ever. I think its been 5 or 6 days since I stopped eating. I was in the ER but they couldn't help me. I did get and IV for dehydration and my vitals and blood work came out okay. They checked my stool for infection. I was told by my doc that my stool sample came out negative. Anyway they expedited my Remicade and I am in so much pain I just can't wait. I just pray that it works!!!!
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


dodge08
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 2/24/2009 7:31 AM (GMT -6)   
Good luck, after my first infusion I started to see results....after the second, everything was fine, I've had to postpone my third becasue of a lung infection, but I hope to be able to go for the third soon.
Male 38, diagnoised in 1998, first major flare in November 2008, have had 2 remicade infusions
have used pentesa, safolack pills, and enema's.
currently decreasing predisone, take folic acid, calcium, vitamin D, HMP powder and a multi vitamin


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/24/2009 7:33 AM (GMT -6)   
Thank you dodge08, I really need to hear as many positive things as possible.

I wish you luck with curing your lung infection. What are your doctors giving you to clear it up?
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/24/2009 7:35 AM (GMT -6)   
Are you still on LDN? I thought that you can't be on LDN and Remicade at the same time.
Female, Age 20 (formerly ComedyDork)
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 2/24/2009 10:49 AM (GMT -6)   
mjw, good luck with the infusion. I was as sick as you when I went in for my first infusion, and I cannot believe how heaven sent it was for me. It's truly given my life back, and I hope it does the same for you. Take care, let us know how you are doing.

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/24/2009 11:44 AM (GMT -6)   
Yea!!! I hope it works for you!!! Since your flare is so out of control you may see results that same night! I hope you do!!! I always loved my Remicade days because the day I received it I usually felt revived and normal. : ) I so hope you get the same results if not better!!! Remicade can be such a wonderful treatment.

How have you been other than your horrible flare experiences? How's your baby? I hope you're taking good care of yourself and atleast trying to push the fluids. I ate applesauce and rice based foods when I was in extreme pain. I also stuck with soft foods in general.

I am just so happy for you that you're going to be trying a new treatment! Do try to stay optimistic and it one day at a time. If you need to chat privately please email me!

Good Luck!!!! : )
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/24/2009 11:53 AM (GMT -6)   
Good Luck!!!! : )
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 2/24/2009 11:58 AM (GMT -6)   
Good luck!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/24/2009 7:30 PM (GMT -6)   
Well just got done with my first infusion. Now side effects. I don't feel any different yet but I am optimistic. I would love to eat sometime soon.


I stopped taking the LDN a few days ago when the doctor prescribed 40mg of prednisone. I thought that I changed my signature but I guess it did not take.

Robyn Bird,
My baby is so wonderful. He is 4 and half months he smiles and giggles and moves his head back and forth. Ohh so cute! I am praying this infusion will allow me to spend more quality time with him. More poor husband has had to pull double duty taking care of me and the baby.

So far I am going on day seven no solid food really. I can bearly keep the non-dairy diabetic nutrition drinks in for long. I am up 5 to 10 times per night in the bathroom passing blood. The urgency is severe. I have had tons of accidents and have washed tons of clothes immediately. It is so imbarressing. Some how I have managed to work. My UC seems worse at night. I think due to it building up in my system while I am asleep.

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 2/24/2009 7:55 PM (GMT -6)   
I hope you find relief soon.
31 yr old female
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any meds for now. May be on 6mp soon?


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/24/2009 9:02 PM (GMT -6)   
Hope the Remicade works as well for you as it did for me!  Keep us posted on your progress.

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/24/2009 10:48 PM (GMT -6)   
I went into for my first infusion. The clinic was a rhuemtoid arthritis clinic.They know nothing about UC. They kept trying to get me to eat snacks. It was funny. Anyway I slept through the whole infusion. I had no side effects I don't feel anything really major yet but I am holding my child without running to the toilet constantly. That is wonderful and new! Thank God. Maybe I will be able to eat tomorrow!!!!! I am keeping my fingers crossed.
Female, Left-sided colitis diagnosed at age 28 in 2001
Currently, I am in a terrible flare after taking Augmentin (antibiotic)
Trying to drink Glucerna for nourishment but even that upsets my stomach sometimes.
All my meds are approved by the doc. for breastfeeding but they still make me nervous.
3.5mg Low Dose Naltrexone (Stopped taking, didn't have time to wait for it to work), Prednisone 40mg, Zoloft, Asocal (but they are going straight through), enemas=hydrocortisone, Meselamine, vitamin E suppositories (I can bearly hold enemas in and they irritate). Prenatal vitamins, Juice Plus, Expecta DHA,Emergen C, VSL $$$$$ ( (Not taking all of my supplements right now they hurt too badly) Starting 1st Remicade infusion as of 2/24/09.


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/25/2009 11:12 AM (GMT -6)   
I know exactly how you feel. I also had bathroom breaks every 30-45 minutes at night, and sleep was something I never experienced. I also know exactly how you feel with your baby and the time you spend away b/c of how you're feeling and the runs to the bathroom. I actually keep the Dreft stain remover in the bathroom (I think it works the best) and a Clorox stain pen.

It's just so unbelievable how familiar our situations are. What you're going through is almost identical to where I was starting last summer. I also continued with work and started grad school. It's unbelievable how we continue trucking with our struggles, but at the same time suffer to horribly. My best friend just told me today that she was amazed how well I used to hide my illness b/c she never knew how sick I was most of the time. : ) I'm a good actress. : )

I guess that I'm just so used to withstanding pain and discomfort and go on with daily duties, it is so hard for me to just lay low and not do much since my surgery. I want to do dishes, make meals, pick up my son...but I can't. I over did it my first week and a half home and am now stuck in bed hoping the pain in my stoma goes away. Grrr. I'm also asking for help and starting to communicate my needs b/c of my pain. Do you know hard it is to tell someone that I hurt?! IT'S HARD!!!!!!!!!!!!!

Anyway...I so hope you find comfort with your new treatments. I am so routing for you!!!
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/25/2009 10:50 PM (GMT -6)   
Hi Robyn,
I agree our situations are very similar. I am laying her right now trying to decide should I work tomorrow or not? I have a great sub who can go in for me without me having to do sub plans. I also talked to my Doc today. He said that he felt I should go to the hospital and be admitted if I don't see a change. Actually I think he would have preferred that I went today but I am trying to give the Remicade a little longer to do something. I also talked to my HR about medical leave so I will fax the paperwork to my doctor tomorrow if I am not doing any better. So today I went to the bathroom twice with no blood in site yeah. So I thought that I would try and eat something. I had some white rice with beef broth. I ate a little and now I am bleeding again so I guess that was not a good idea. I think I will stick with the nutritional drinks for now. Less irritation hopefully. I have been drinking Glucerna which is normally for diabetics but I like it because it is gluten and lactose free. I am not big on gluten and lactose free diet but for now I think it is important to make my system process as little as possible. If my issues are not resolved by my summer vacation from work I plan on talking to a surgeon. This disease is absolutely ridiculous. Robyn when do you and your husband plan on trying for another baby?
Female, Left-sided colitis diagnosed at age 28 in 2001
Currently, I am in a terrible flare after taking Augmentin (antibiotic)
Trying to drink Glucerna for nourishment but even that upsets my stomach sometimes.
All my meds are approved by the doc. for breastfeeding but they still make me nervous.
3.5mg Low Dose Naltrexone (Stopped taking, didn't have time to wait for it to work), Prednisone 40mg, Zoloft, Asocal (but they are going straight through), enemas=hydrocortisone, Meselamine, vitamin E suppositories (I can bearly hold enemas in and they irritate). Prenatal vitamins, Juice Plus, Expecta DHA,Emergen C, VSL $$$$$ ( (Not taking all of my supplements right now they hurt too badly) Starting 1st Remicade infusion as of 2/24/09.

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