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Starbelly

Starbelly

Joined
Oct 19, 2006
Messages
59
Hello everyone, hope you are all asysmptomatic : ) I was diagnosed with UC about 10 years ago... I am one of the 20% or so that officially are diagnosed with UC and have Crohns like issues as well (kidney stones, skin problems) Fortunately, my disease is only in the large intestine. Unfortunately, I just spent 11 days in the hospital. My doctor told me that I had a dangerously low hemoglobin number and would need blood soon, I didn't listen and waited a few days, hoping that massive doses of Prednisone would halt the flare up (it always had before) On Oct. 2 I was rushed to the hospital, unable to move and in the worst pain imaginable. Morphine and dilaudid did absolutely nothing to stop it either : ( I received 4 units of blood, solumedrol, IV antibiotics, Iron and who knows what else. Next morning I was offered the options of immediate colectomy, or try Remicade infusions and hope that it would heal my ulcerations which started immediately at the end of my small intestine and continued through my ascending, transverse, and descending colon. I opted for the Remicade, not wanting to lose any parts of my body just yet. I'm thinking/hoping that it is working... my pain has subsided substantially, but unfortunately, I am still sick. If any of you have had success with Remicade I would appreciate your input or advice. I had my second infusion on Tuesday and will have my third on Nov. 14
 
Aloha starbelly & welcome to the club that none of us ever wanted to join. No experience with remicade here either, but others who have had it will be in shortly to share their stories and help you get a handle on expectations from their viewpoints. Hope it does the trick for you & that you're soon feeling much better!

:welcome:
 
thanks Jeff... cool endo... oddly enough I used to compete in BMX freestyle as a kid ... Had the full Haro factory ride... I was actually looking into getting another bike when I get better... although I think I lost all my balance when I turned 30 LOL
 
11360003.jpg


Starbelly ... I'm KAREN & so I'd like to take this time to say WELCOME ABOARD & I am sure that you will have a great time. I wanted to share with you that MY LOVING HUSBAND is the one with CROHN'S and he had his share of REMICADE TREATMENTS & went through ... 6 of them from December - July and so each time he had it he felt a wee bit better ... but when he saw the DOCTOR in September he told him that he does not have to have the treatments any more ... so I am praying that we are done with them. So, if your wanting a friend to talk with I am just a click away. Take care and once again let me tell you WELCOME ABOARD !!
 
I've only had one dose of remicade so far and it worked wonders.It took a couple of days but in no time I was able to eat again and slow down my bathroom visits like you wouldnt believe.
 
Hi starbelly
i dont know anything about remicide but wanted to say hi and :welcome:
 
Thanks again everyone and Hi back. Well, the tummy is feeling much better, but the anemia and skin lesions are not resolving... the derm says the skin probs wont go away until my iron is back up. Hemoglobin on Nov 2 was a 7, got blood and was back up to 10, lost blood in the hospital and took some more b- got me back up to a 10.5 but as of the 16th dropped back down to 8.5 and now the doc says if I can make it through the weekend, we'll test and see if I need blood again on Monday... fingers are crossed. Everyone I have talked to says remicade is a miracle drug and are in complete remission as long as they are on it... so that's very very good news
 
Hi Starbelly, Welcome..nice to meet you. I unfortunately cannot help with the Remicade question either, but I am glad to hear you are feeling a little bit better, good luck with the second infusion...do keep us posted.
 
I know how you feel..........

Starbelly said:
Hello everyone, hope you are all asysmptomatic : ) I was diagnosed with UC about 10 years ago... I am one of the 20% or so that officially are diagnosed with UC and have Crohns like issues as well (kidney stones, skin problems) Fortunately, my disease is only in the large intestine. Unfortunately, I just spent 11 days in the hospital. My doctor told me that I had a dangerously low hemoglobin number and would need blood soon, I didn't listen and waited a few days, hoping that massive doses of Prednisone would halt the flare up (it always had before) On Oct. 2 I was rushed to the hospital, unable to move and in the worst pain imaginable. Morphine and dilaudid did absolutely nothing to stop it either : ( I received 4 units of blood, solumedrol, IV antibiotics, Iron and who knows what else. Next morning I was offered the options of immediate colectomy, or try Remicade infusions and hope that it would heal my ulcerations which started immediately at the end of my small intestine and continued through my ascending, transverse, and descending colon. I opted for the Remicade, not wanting to lose any parts of my body just yet. I'm thinking/hoping that it is working... my pain has subsided substantially, but unfortunately, I am still sick. If any of you have had success with Remicade I would appreciate your input or advice. I had my second infusion on Tuesday and will have my third on Nov. 14
Click to expand...

I'm new to this site also and your story sounds so much like mine. I was diagnosed in March of 2005, in the hospital for 11 days also. There were so many doctors there and I was so overwelmed. I don't like going to doctors unless it's a life or death emergency.....well which it was but I was sick for 7 weeks until I was just about on my death bed and finally went 3 times in 2 days. One of the doctors wanted to do surgery on me also. I have it all thru ascending transvers, and descending colon also. When the doctor mentioned surgery to me looking at me laying in the hospital bed? I said NOWAY, I don't want that! Are you crazy!! I was in shock of what all the doctors were telling me. I just couldn't believe that I was so sick. He tried to change my mind but I wouldn't budge. Before leaving the hospital I had my first remicade infusion. I've been on it ever since. Remicade has been the only medication that has really helped me to physically deal with this. I had recently made the mistake of skipping 2 infusions because well, sometimes I get mad and don't want to take it anymore because I'm stubborn and still in denial somewhat, but the pain all over inside and out took me back to the doctor and he immediately put me back on the remicade. I had moved and didn't give them my change of address or my new phone number and they had been trying to reach me to give me my medicine. I'm a stubborn redhead! But I got my sensed back about myself due to the fact that I started regressing and now I'm finally feeling better again. So......I hope that the remicade works as well for you as it has for me........God bless and nice to meet you!
 
Give it some time to work it's magic. Everyone is different and unique so pay attention to your body versus what things were like before.

I was fortuneate enough to have my first Remicade infusion after 8 years of on and off treatments back in October 2004. The results for me were amazing. Within months my bathroom frequency dropped off significantly.

I hope the same for you.
 
Welcome-

Just wanted to say a quick hello. Good luck with your treatments. Been there, done that! Have had good luck with it, but doc's don't like to do it too often for fear your body will become immuned to it. Wish you well-
 
Hi Starbelly, glad you're feeling a little better. I am due to start Remicade for the first time and am a little anxious but hope it will heal my fistulas. I am supposed to be having it as along term treatment so we shall see what happens, will keep you all posted as to whether it works for me.


Ruth
 

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