ulcerative colitis ebook

Proud To Be Colon Free

Introduction:

I’m a 36 year old wife and mother of 2 boys. I was diagnosed with UC when I was 26 and tried numerous medications and diets. Blessed that I was considered mild to moderate and never went to the hospital for my disease, except for one blood transfusion when pregnant. I had all the typical symptoms, bloating, diarrhea, blood and mucus. I refer to UC in the past tense because I recently had my colon removed and I couldn’t be happier!

Some more about me:

I’m an easy going, fun loving person who enjoys spending time with family and friends. Southern to the core and love the outdoors! I love to travel but Georgia will always be my home.

Symptoms:

None! I’m UC free baby! My colon was removed in January 2013 and I was glad to see it go!

Proud to be Colon Free

Hello to everyone on this amazing site! I discovered the site a couple of years ago and have enjoyed reading everyone’s stories about UC. It helps to know so many people have the same problems with UC but it’s also sad to see this disease reek havoc in so many lives. I’ve always said I’d like to share my story so it can help someone else and being the procrastinator that I am, here it goes, now that I’m UC free!

I was diagnosed at the age of 26. Newly married, commuting, working long days, and renovating an old house created the perfect storm in my body and UC reared it’s ugly self. My symptoms were not that bad in the beginning; just loose stools with blood and mucus occasionally. I was in denial that it was something that would chronically plague me. I went along on mesalamine drugs and occasional enemas when problems would arise until I got pregnant. The pregnancy sent me into a full blown horrific flare.

Months of bloody mucus filled diarrhea around the clock did a number on me. This was the first time the Drs pumped me full of prednisone to stop a flare. During this time I was always exhausted, weak and my heart felt like it was racing a lot. This was because my iron was dangerously low. A trip to the hospital for a blood transfusion and the prednisone did the trick that time. The rest of my pregnancy was great and I had a healthy baby boy in 2005. My second pregnancy went fairly well with only one minor flare in my second trimester and I had another healthy baby boy in 2007. We are a very active family, always outdoors fishing, playing, swimming,etc. I usually worked out at least 3 times a week when I wasn’t in a major flare.

Since then I typically flared every 6 to 8 months. I have taken Asacol, Lialda, and other mesalamine drugs at different times. I’ve also taken lots of prednisone, enemas and Remicade. I did the SCD diet and have eliminated numerous things from my diet to try to control UC. None of these things controlled the UC for too long. I asked my gastroenterologist about surgery 2 years ago, before taking Remicade. He wanted me to try it so I gave it a try even though I wasn’t crazy about the idea. Remicade seemed to do a good job after the first few infusions but I flared 7 months into treatment. That was it for me. I stayed on Remicade for 14 months while I researched and consulted with surgeons to get jpouch surgery.

I took the plunge on January 22, 2013 and had the first surgery. I had an excellent surgeon in Atlanta who took out my large intestines, formed the jpouch and created the loop ileostomy. I went into surgery healthy and prednisone free, it helped me recover well and have the process completed in the 2 surgery process. Recovery was difficult. I was extremely tired and weak for a month after surgery. After 6 weeks I finally started feeling like myself again. I got used to the ileostomy fairly quick but was always glad to know it was temporary. Ten weeks after surgery I felt great! I had more energy than I’ve had in many years and was so happy I decided to have surgery.

On April 25, 2013 I had the second surgery to close the ileostomy so the jpouch could start doing its thing. I was so excited to be done with surgery. After a couple of days in the hospital my intestines starting working again and the track race to the toilet began. Thanks to all the helpful people on this site I was prepared for this; soft TP, flushable wet wipes, and Calmoseptine ointment were my friends the first 2 weeks. I’m 3 1/2 weeks post surgery and doing great. I can eat anything I want and the trips to the bathroom are diminishing. During the night i was getting up every 2 hours the first week or so, now I get up once around 5 am! Things will improve for up to 18 months so I couldn’t be happier with the results.

I know this is a long post but I wanted to share an overview of the whole experience. UC was a major pain in the rear. An enormous weight has been lifted from me and i want others to know that UC doesn’t have to define you. It is a challenge, do your research and don’t be afraid to make tough decisions. Thank you, thank you, thank you to Adam and all of you who contribute to this site!

Medications I Tried:

Asacol
Lialda
Prednisone
Remicade

written by Heather

submitted in the colitis venting area





5 Responses to “Proud To Be Colon Free”

  1. BethanyMay 27, 2013 at 6:21 pm #

    Heather,

    Thank you so much for your post. My fiancee and I are currently in our tough decision on whether to move forward with surgery at this time. I was only diagnosed in Oct 2012 but things for me went from 0 to 98% in about 2 weeks to the point of the OR team on call while I was in the hospital due to the fear of me developing megacolon at any point in time. I have been through the ringer on medications and currently on Humira at this time and just started back at 40mg of Prednisone after about 2 weeks of my symptoms coming back although fairly mild still not very good. I had only been off of them for about a month and half before things hit the fan again. Your experience is giving me hope that, although its scary, things won’t be too terrible and that I will finally get a reprieve from all of these issues and my laundry list of medications and diet changes.

    Bethany

    • Mark from Boston
      MarkMay 30, 2013 at 8:22 am #

      Hi Bethany – I’m in a similar place as you are. I was first diagnosed last fall (around Sept) and have gone through the standard laundry list of meds: asacol, lialda, steroid enemas, prednisone, currently on azathioprine and Uceris… Every time i start to see progress and get back to some state of normalcy (maybe 1 or 2 trips a day), things go south again and i’m back to 5 or 6 trips with heavy presence of blood. Doesn’t seem to have any rhyme or reason and it’s beginning to really wear on me, both physically and mentally. My next move is either going to be Humira or surgery, i’m just trying to think about what makes the most sense. I’m 30, have a 2-yr old and 2-mo old at home, and I really just want to be able to live without fear of having a bad reaction to a particular meal that I eat. Going out frequently and leading the life I live, being a strict follower of a certain diet (i.e. SCD) is just not feasible for me at this point in my life.

      I really don’t want to remove my colon and go down that path, but I can’t continue living like this and I don’t want to live in fear of eating either. Quite a predicament…

      • BethanyJune 1, 2013 at 7:06 pm #

        Hey Mark,

        I totally understand how you are feeling right now. I am currently on the Humira go around and was fine for about a month and a half of just Humira after we tapered off the prednisone. It was beautiful. Pain and nausea were at a minimum and I felt more like me than I had in the last 7 months. Sadly it has started to go down hill again and it seriously is both physically and emotionally draining. I am a paramedic and have a fairly hectic fast paced schedule. I’ve tried doing the diet changes and “natural” methods but to no real avail.

        My fiancee and I had really hoped to push surgery back a little further until we had had the opportunity to start trying to have family due to the chances of infertility or fertility problems post surgery for women being high but due to current issues that might not work the way we wanted. But like you said, I can’t continue to live like this. The hospitilaztions and medication issues and never knowing why I can and can’t eat isn’t really a feasible thing for me. I highly doubt my patients would appreciate me using their restroom while I’m trying to be taking care of them on the ambulance. Haha. I will be meeting with my GI on Monday though to discuss our options though and go over all of the recent test and lab results. Fingers crossed for good news!

        Hope everything works out for you soon

  2. bevMay 27, 2013 at 10:00 pm #

    Great post!!

    :)

  3. JohnjoeMay 31, 2013 at 4:40 am #

    Great info I had my first surgery last week so its good to read your post. Really good to know what I’m in for.

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