I'm in so much pain...

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KKubin
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/5/2008 5:24 PM (GMT -7)   
I'm in so much pain physically and emotionally. I was diagnosed with UC a year ago, but after being diagnosed I know that I have been suffering from for a lot longer. I just always thought that i had a "sensitive stomach", but after the birth of my daughter two years ago, my symptoms got too bad to ignore. I also suffer from colitis induced arthritis which, at times, is debilitating! I'm having a flare up right now, the arthritis is miserable, I'm constantly exhausted and I feel like no one understands! I feel like my family thinks I make my pain out to be way worse than it really is, I feel like they do not take my illness seriously, and none of them have taken the time to educate themselves about the disease...it's frustrating! I don't want to be a negative, brat who whines all the time, I just want them to understand. I want to feel better! I want to not be in pain all the time! None of my meds have seemed to work, my doctor wants to try Remicade now, which from my understanding is a fairly new way to treat UC. Hopefully it will give me some relief. I can't help but feeling extremely depressed, I'm 26...I should be running around with my 2 year old, not in constant pain! Ugh! Please God, tell me you guys know what I'm going through!

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 3/5/2008 5:49 PM (GMT -7)   
I know I'm not the only one who understands.

Right now even though I'm tapering off of prednisone.. I still have a lil urgency and right now I cant figure out what's doing it, but IM EXHAUSTED alllllllllll the time. I even get enough sleep and I want to just collapse. It's like someone just zapped the energy from me. I get shaky .. dunno if that's low blood sugar or what.

I wish I could make you feel better... I've never taken Remicade... what it specifically for?
Kara, 20
Diagnosed with Ulcerative Colitis March, 07
-Left sided all the way up
-Was on Colazal..it didn't do anything for me. Had horrible flare up...been on lialda and pred since. Seems to be working!
Medications: Colazal 3 pills 3x a day
                  Prednisone - 5mg to 7.5mg alternating in the morning w/ food.
                  Lialda - 2 pills in the morning w/ food.


KKubin
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/5/2008 5:56 PM (GMT -7)   
You know, I haven't researched it that much, but I think (and i could be wrong) it's a heavy duty anti-inflammatory used to treat rheumatoid arthritis, but I think they have just starting using it to treat UC as well. I'll let you know when I find out more about it...If anyone else is taking Remicade let me know.

TeresaMartin
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 3/5/2008 6:43 PM (GMT -7)   
KKubin said...
I'm in so much pain physically and emotionally. I was diagnosed with UC a year ago, but after being diagnosed I know that I have been suffering from for a lot longer. I just always thought that i had a "sensitive stomach", but after the birth of my daughter two years ago, my symptoms got too bad to ignore. I also suffer from colitis induced arthritis which, at times, is debilitating! I'm having a flare up right now, the arthritis is miserable, I'm constantly exhausted and I feel like no one understands! I feel like my family thinks I make my pain out to be way worse than it really is, I feel like they do not take my illness seriously, and none of them have taken the time to educate themselves about the disease...it's frustrating! I don't want to be a negative, brat who whines all the time, I just want them to understand. I want to feel better! I want to not be in pain all the time! None of my meds have seemed to work, my doctor wants to try Remicade now, which from my understanding is a fairly new way to treat UC. Hopefully it will give me some relief. I can't help but feeling extremely depressed, I'm 26...I should be running around with my 2 year old, not in constant pain! Ugh! Please God, tell me you guys know what I'm going through!
My name is Teresa and I have been diagnosed with UC 8 months ago. I was 32 weeks pregnant when we found out . I was also diagnosed with Thrombocytopenia which is a disease that effects my platelet counts which remain extremely low. My UC was out of control I did'nt even know I had it and just thought I was having an awful pregnancy. My symptoms were so severe I had an emergency C-section at 32 weeks and gave birth to my son Colin . He only weighed 3 lbs 8oz. I never had been so scared in my entire life. My platelet counts were so low I just knew I was going to bleed out and die. My UC put my baby in distress and we both made it fine. We were both in the hospital for over a month. They put me on high doses of Prednisone that made me crazy. I was readmitted to the hospital 2 more times before I started Remicaide. The results have really made my life so much better . I am about to have my 4th treatment in April and I currently have been symptom free for several weeks. Your right the pain is awful, the arthritis was debilitating and I also feel my family does'nt really know what I am going thru. It is hard enough being normal taking care or a newborn , try to get them to understand when you real sick and taking care of a 6month old and a 7 year old (who has ADHD) I am very thankful that Remicade is out there. It has been used to treat Rheumatoid Arthritis, Chrones and UC for over 10 years. I know that there is not a cure for UC but I am glad this drug can make me feel like a normal person again. Now I am starting to enjoy my children. I don't think I will be going back to work any time soon . I am not quite ready. The Prednisone and the other meds have made me look like someone else. I'm 39 married to a wonderful man of 25. The anti-inflamitory drug they had me on (Anasol) mad me loose tons of hair. Its already bad enough going to the Bathroom 100 times a day, having a moon face and a huge hump in your back from the Prednisone, but to also loose your hair.....It was just about all I could take . I am almost back to normal my hair is starting to grow back and I am near my pre-pregnancy weight and feeling good. If you have'nt started the Remicade talk to your doc it has done wonders for me and my family. Take care and have fun with your baby......Teresa:) PS my son is normal and weighs 17lbs beautiful boy.......BYE

TeresaMartin
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 3/5/2008 6:53 PM (GMT -7)   
This is Teresa. I just wanted to let you all now that I am taking Remicade. It is a biological drug and is given thru and IV every 6 - 8 weeks. It takes 2 hrs for it to go in. I am about to get my 4th dose in April and I am almost symptom free. I am on my way to being in remission and have not had a real flare up since the end of December which was when I started Remicade. I urge anyone with UC to talk to your doctor about taking it. My doctor is about to take me off my other meds because othe Remicade is working so well. Good Luck .

KKubin
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/5/2008 6:56 PM (GMT -7)   
I'm so glad to hear from a new mom! Thanks so much for sharing your story, it has really made me feel better! Have you noticed that the Remicade helps with both your UC symptoms as well as your arthritis???

KKubin
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/5/2008 7:01 PM (GMT -7)   
Hey Teresa...If you don't mind me asking....how does it work out paying for the remicade? do you pay for an office visit? I'm confused about how all that works.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/5/2008 7:13 PM (GMT -7)   
I've been on Remicade for two years now. Remicade is one of a new group of drugs called biologicals. Specifically, it's a TNF inhibitor. TNF is tumor necrosing factor, a substance that is found in high quantities in people with certain auto-immune diseases such as RA and UC. Remicade works by interfering with the TNF and preventing it from doing its dirty work.

When I get my Remicade, I go to the infusion center my GI's practice operates. I pay a $35 co-pay and the insurance pays the rest. The medication itself is very expensive, between $5000 and $10000 depending on your weight. How it's charged out depends on your doctor's set up. I'd suggest you talk to someone at the doctor's office to see how they do it.

The Remicade doesn't directly influence my arthritis-like pain, but it does keep my UC in remission, which then decreases my arthritis symptoms.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 3/5/2008 7:15 PM (GMT -7)   
Lots of us are taking Remicade, mostly with amazing results. I've been on it for a year and a half and feel like my old self again. I even reopened my landscape installation company.
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/10/2008 4:44 PM (GMT -7)   
KKubin, I had a bad bout of inflammatory arthritis which kept me off my feet for a while. My advice is take pain meds when dr tells u to, as u can't catch that train after it passes! High dose pred (60 mg) tapered off for 6 months worked for me ?d got me back on my feet in 3 weeks. I have a great rheumatologist who works with my gastro dr to come up with a game plan for treatment. Keep an eye out for shooting pain in back and legs, sores in your mouth, and lumps in ankles. They are signs of inflammatory arthritis.
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 3/10/2008 5:40 PM (GMT -7)   
does anybody have a secret for getting rid of the arthritis pain? Celebrex did a number on me, Ibuprofen works well but causes problems. Tylenol doesn't seem to touch the pain...........
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission
 
asacol 400 mg 3 tabs 3x a day, didn't work
was on prednisone, doc took me off.  Asacol didn't help.
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid,mesalamine enema every other night, Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....

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