Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

There Is Hope

There is hope out there to those of you who are wondering…

I’ve had ulcerative colitis for about 3 years and just now have finally got it under control. Neither Asacol or Lialda worked for me, but Apriso worked for about 2 weeks and then stopped. I was getting depressed thinking it wasn’t going to be an easy fix, going to the bathroom 20 times per day, looking very pale and being tired all the time was wearing me down. I was on my second round of Prednisone (evil, evil drug…avoid long term use at all costs). My doctor and I had discussed Remicade in the past and I finally agreed to try it. After my TB test came back negative and my Flu vaccination I was ready to go.

The nurses at the infusion clinic were very nice, most of them were retired nurses volunteering so it was nice to know they actually wanted to be there. My first infusion lasted 4 hours; a lot longer than I had anticipated, but the doctors found there were less reactions to the medicine when given more slowly. My second dose was 2 weeks later and was only 3 hours and the most recent was I guess that’s going to be the standard time from now on.

I noticed a difference the day I had my first infusion! Literally I felt better right away. I was tired afterward, but didn’t need a nap necessarily like a lot of people have said. I have my next infusion in 2 days ( 6 weeks after the last one ) and I’m starting to feel the need for it. The nurse told me some people can feel when it’s time for another infusion so I suppose it’s normal. I’m just excited to get the next one over with so I feel better again! :)

For anyone who is losing hope and has not had the discussion about Remicade with your doctor, I strongly recommend it! It’s worth a shot at getting back to a “normal” life.

written by-Abbey on the Pot




8 Responses to There Is Hope

  1. Peter NZ December 24, 2010 at 5:49 pm #

    Good for you Abbey!
    BTW where I come from “Pot” is a common word for marijuana.
    Cheers,
    Peter

  2. Peter NZ December 24, 2010 at 5:50 pm #

    Ha Ha it is actually about 2pm on Christmas day here!
    Merry Christmas

  3. Adam
    Adam December 26, 2010 at 12:44 pm #

    Hey Abbey,
    I am hoping that you have had your second infusion by now, or it is coming really soon. That is so great that after so long of suffering, you have been able to find a positive treatment in the Remicade medication. Congrats on finding something that has given you some relief.
    How awesome it must be to be going through the holidays with a positive outlook on your colitis. CONGRATS and keep us posted on how things turn out after your second infusion. Take Car,

  4. uma January 4, 2011 at 11:41 am #

    Primal defence, slippery elm and boswellia seretta has puy my ulcerative colitis which is 20 years old into remission.SO all UC patients please try this.

  5. Vicky January 5, 2011 at 7:43 pm #

    I have an appointment with a GI in a week and I believe he plans on talking with me about remicade. It sounds scary, but I have been on asacol and prednisone for so long now and haven’t had any real relief from my flare up for about 7 months-the worst part is how fat, puffy and hungry I always am! I am sooo sick of going to the bathroom and all the blood. Did you notice a difference right away and your symptoms start to go away?

  6. Ashes January 7, 2011 at 4:27 am #

    I was diagnosed with UC in ’08. I’m 23, and it’s sad, but I’ve spent my 20’s so far in and out of the hospital. I’ve been on Asacol (didn’t work, plus it’s difficult having to take it every 6 hours), Lialda (same as Asacol only 1 per day), and the devil’s drug that we all know as Prednisone, due to the Prednisone, I now have to take Boniva. Now, I’m on Remicade. I’ve been on it for a little over a year now, and it’s definitely decreased my flare-ups. I still get them, but as opposed to being in the hospital every 2 months for a flare that I can’t handle, I’m in the hospital every 4-6 months.

    I definitely can feel when it’s time for a new treatment. I go every 6 weeks for an infusion, and about 5 days before my treatment, my symptoms decide to show up. I usually have to stop by my GI for Donnatol and Percocet for the pain, but I generally get by just Remicade and Lialda when I’m fresh off of a flare. Good luck with your Remicade, I wish you great success.

  7. PHP January 8, 2011 at 3:52 pm #

    Hello,

    I’ve been on Remicade for 1 year an 3 months,Prednisone didn’t help at all, Remicade definitely helped me(like night an day) 25 bowel movements a day down to 1 every one or two days but now I’ve got a lot of bone pain, people who say UC is not a fatal disease is not 100% true… I almost died with all the blood I lost, hemoglobin was 62 an should be 120-140 so they pumped me back up with iron 500ml every Friday for 3 weeks…. It’s great there are websites like this so people can help each other from experiences an stories…

    You’ll need a good diet as well, no dairy (lactose free milk) is the only thing working in that food group… Smooth peanut butter, white bread, all meats(steak,fish,chicken,pork chops,extra lean hamburger, banana, trying peaches now, potatoes,white pasta, no spices… Hope this helps someone an stay focused an positive an ask for Remicade…. Stress an bad eating won’t get you back on your feet…

    PHP (Sever UC)

    P.S Goal is to get off all these drugs period….

  8. parul April 21, 2012 at 11:09 am #

    hey m parul here.i hav been diagnosed 2 hav uc since 2yrs nw..i had suffere dso much.dat pain nd blood.its horrible but i wud suggest 1 thing to all ppl wid uc……..thereis some medicine in ayurved which i took rom patanjali center in delhi…thr r abt 2 powders which r mixed nd taken nd u l nptice amazing results within 2 -3 days……it is a must try….coz it has no side effects plus 100 percent succesful…together with this they also tell u to do yoga which adds to its benifits…….

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