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

Trying to Find Something that Will WORK!

What’s up UC’ers, I’m Megan.

I’ve been living with Ulcerative Colitis since October 2003. Trying to put off surgery as long as possible.

Here’s My Story:

I was diagnosed with UC when I was 4 months pregnant with my 2nd child – October 2003! Hospitalized for 11 days (went into pre-term labor twice) and then was sent home with a PICC line for the duration of my pregnancy! Had my first colonoscopy 5 months pregnant – now that is fun!!! Made it through the pregnancy with little real food (TPN nutrition in the PICC line) and delivered a healthy baby boy at 35 1/2 weeks…..he was 8 lbs 10 oz…..he really liked the TPN and all the steroids I was on!

My UC went into remission immediately after he was born. I lived very normal until he was 10 months old – then it all came back. My GI doctor put me back on Colozal and prednisone. Was able to taper off the steroids within a few weeks and live pretty normal on just the Colozal.

That was until October 2010. Everything came back again in full force. After a colonoscopy it was decided to try 6MP. Started that new medication in January 2011…after 2 weeks on the medicine I was hospitalized with severe pain. It was determined that I had a reaction of some kind to the 6MP. I was on morphine for 6 days ti help recover. Remicade infusions were the next step! Received my first infusion during that 8 day stay.

I continued with the Remicade ramp up procedure – 2 weeks, 4 weeks and then 8 weeks! However, I couldn’t make it to the 8 weeks so I had to add a 6 weeks one in there. My GI Dr. doubled the Remicade dose and said lets try to make it to 8 this time! I wasn’t feeling great beginning at week 4 so I searched out an acupuncturist that has experience with UC! I started seeing my acupuncturist twice a week at the 4 week mark. Today I am starting my 7th week between infusions!

It hasn’t been easy getting here – but I believe that the acupuncture is helping me get by. I’m scheduled for my next infusion this week….praying I feel tons better after it and just need to use the acupuncture near the end of each 8 week cycle! If not – then back to the drawing board and surgery moves higher on the list of fixes :(

-Submitted by Megan in the Colitis Venting Area on June 20th, 2011




pregnant

2 Responses to Trying to Find Something that Will WORK!

  1. Tony (UK) June 24, 2011 at 5:14 pm #

    Pleased to hear the acupuncture is working for you. Sometimes I wish my doctor would give me morphine, the strongest painkiller he proscribes for me is Co-codamol and as you probably know, you can’t take that for long periods, or aren’t supposed to and its a bit hit and miss anyway, sometimes it works and sometimes it don’t. Anyway hoping things pick up for you and surgery is a long off last option.

  2. Julie August 12, 2011 at 6:52 pm #

    Hi Megan,
    I came down with UC shortly after I had my second baby too. I was actually on vacation and was hospitalized out of country. It was a nightmare!
    I am also now on Remicade as my MD said I was the worst case he has ever seen. Yikes! The remicade seems to be working but I am weening myself off of the prednisone which seems to have taken me back a bit. Regardless I continue on as I was told it sometimes takes a few infusions to start seeing results.
    One other thing that I have heard but not tried is a bio- mat. I think you will need to find a practitioner tnat has one as they are super expensive. I guess you just lay on it for a set time and it helps heal you.
    I hope all is well with you and your kidlets!

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