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Living Abundantly with Ulcerative Colitis

Background:

I am a wife and mother of 2 teen boys. My Ulcerative Colitis symptoms started in 2004 while I was watching my best friend die of breast cancer. The stress of the moment took it’s toll on my body and brought the UC diagnosis front and center. My family doctor sent me to a GI who told me that I’d probably had UC for a long time but due to the current stress in my life, it began to spiral out of control. So, this is my journey of the last 7 years of life with UC.

The Story:

I was diagnosed at the age of 31 with Ulcerative Colitis (UC). A lovely bowel disease that attacks the colon and intestines with ulcers. It causes serious diarrhea, rectal bleeding and swelling of the bowel. In the 7 long years I’ve had this mess I’ve been hospitalized 4 times for a minimum of 5 days, massive doses of prednisone for several months, various pain pill prescriptions and several very specific treatments for UC. I’ve changed my diet, experimented with organic foods and supplements and leaned very heavily on my faith, family and friends in order to keep my sanity.

At 34 I was hospitalized 9 hours away from my family. It was horrible on so many levels. The first being the physical pain and issues my body was dealing with due to the UC. My entire digestive system had shut down. I couldn’t eat, drink or go to the bathroom. The pain was something like having a jackhammer drilling in my abdomen. My husband rushed me to Scott & White Hospital in Temple, Texas where I was admitted for 8 very long days. I was bleeding internally due to the inflammation of my colon and intestines. To make a long story short, after several days of IV nutrition and bags of iron to help replenish my lost blood I began to turn the corner from critical to stable. The pain was hideous and nothing seemed to help. Morphine helped to take the edge off but that’s about it. I underwent several tests including a colonoscopy, which I woke up in the middle of…not fun.

Through all of this I had an amazing support system in the hospital. My doctors, nurses and other hospital staff went above and beyond to make sure I had the best care and was as comfortable as you can be in the hospital. However, it was hard being away from my husband and 2 sons. Shannon, my hubby, would come down whenever possible but he was carrying the burden of being Mr. Mom and Working Dad while I was away. My parents helped out a lot since they live around the corner from us, without them, I’m not sure if Shannon would have made it through. Shannon’s family is in Austin and about an hour’s drive from the hospital. They were so kind and thoughtful, checking in on me constantly. His parents are the reason for my excellent care and without their connections at S&W I don’t know what my life would be like now. After I was released I spent a week in their care. My doctors would only release me if I stayed near as I had to still be monitored closely. They took awesome care of me and allowed me to really rest and begin healing. For that I will always be grateful.

The hospital is a very lonely place to be and is even worse when you are in bad shape and not surrounded by family and friends. I am a strong person but this was one of the hardest things I’ve ever been through. My mind was just as sick as my body by then and I felt so defeated and lost. I was so doped up on pain medications that I couldn’t think straight. I lost my ability to pray which has always kept me grounded. I knew my friends back home were covering me as was my family but I still felt so alone. Scared.

From this moment on I felt so unattached, ungrounded. Though I still believed and had unyielding faith in God, I struggled for the closeness I had once had. Another road block. One I couldn’t see past for a long time. I never doubted His love for me or His ability to heal me; I just struggled with the energy it took to invest in a relationship. I also felt this lack of energy for any relationship, be it family or friends. I was just doing what I could to function on a daily basis. My body was weak but my spirit was even weaker. To get out of bed in the morning was the only thing I could accomplish somedays. A severe and almost debilitating depression had set in.

In November 2008, after another 6-day stint in the hospital in September, I started a new treatment. This is my last resort before having surgery. Surgery being the removal of the colon and any diseased intestine. This would not be an easy surgery by any means. It would mean traveling to a hospital in the Dallas area and setting up camp for quite some time. Having the initial surgery to remove the diseased tissues then wearing a colostomy bag for 6 weeks before having another surgery where the doctors would take part of the healthy intestine left to build a new “colon” and re-attach the new colon to the anus. Maybe that’s too much information but that’s what surgery would entail. Ever heard the saying: “Minor surgery is on someone else but when it’s you, it’s major surgery.”

So this new treatment- Remicade – is an IV infusion I take every 6 weeks. I can describe it in one word: MIRACLE! It has given me my life back. My only issue now is a nasty little side effect of UC; it will sometimes mimic the joint pain of rheumatoid arthritis. BONUS…but I can deal with it. After years of dealing with this awful disease I can finally see on the other side of it. I am feeling more and more like my old self.

Now, after 2 plus years of Remicade I can truly say that this has been a life changing drug for me. I now have a port in my right shoulder area that allows the infusion to go very smoothly and no searching for a vein that won’t blow. I also take Cymbalta to help with the depression and a VERY small dose of Arava to help with the joint pain. Recently, my GI put me on Aprisio to help with the UC too. After my last colonoscopy the Doc said my colon looked so good that without knowing my history, he would have a hard time diagnosing UC! WOW! Though I still have some flare type issues now and then, the UC is finally under control and I feel like I’m in charge of my life again.

-submitted by Monnie

Medications:

Remicade every 6 weeks
Cymbalta
Arava
Aprisio


Monnie’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details

Monnie has a personal blog that you can follow as well: http://monnie-forwhatitsworth.blogspot.com/

Tags: miracle





5 Responses to “Living Abundantly with Ulcerative Colitis”

  1. TorieFebruary 17, 2011 at 6:09 am #

    Hi… Your faith seems very strong.. That has been my strongest challenge to stay strong like Job. Never allowing peoples negativity to get me down. When I think if Job , all he did was sit in ashes scraping his boils. Sometimes when I feel at my worst and I can’t leave the house let alone practice my faith. I think of Job who just sat there. God loved and cared for him even when he couldn’t have a relationship with God because he didn’t understand completely what was Happening to him.
    We have the insight of the whole story. I want that for my life. Where will I be as this disease progresses or not

    • Monnie
      MonnieFebruary 18, 2011 at 9:49 am #

      Torie,
      You are so right about Job. I really don’t know how he did it! His story makes mine look like a silly stubbed toe. I pray that you are surrounded by people who can and will cover you on your bad days. Many blessings to you and yours.

  2. LisaFebruary 17, 2011 at 1:19 pm #

    Well put Monnie as I have watched you go through all of this. I am proud to call you my friend and am always here to help as you need.

  3. kellyFebruary 23, 2011 at 3:04 pm #

    Hello Monnie,
    I just read your story, and i agree too, that after a while it is hard to have faith or be hopeful. I am so happy that you found a medicine that is helping!! These are great stories that help people like myself who may be in a FLARE moment.
    I have been on prednisone, enimas, Apriso, etc. and found that it helped to a certain degree, but getting UC under control is difficult at times.
    I start Remicade IV treatments next week, I hope to have positive results! fingers crossed!

    How long did it take after your first injection to start to feel better?
    when you mention joint pain (side effect) that makes me nervous, because I have a close family member who has RA..

    hope to hear from you too!
    ‘congrats to feeling well :)

    • Monnie
      MonnieFebruary 23, 2011 at 8:35 pm #

      Kelly,
      Remicade was my last resort after several years of prednisone, Asacol, cortisol enemas and Azothioprine. I can honestly say that I did not hold out much hope for it to succeed.
      When I started Remicade, I couldn’t eat solid food with out having severe cramping and RUNNING for the bathroom. After the first treatment I was completely worn out. I think some of that was the fact that I had been in a flare for some time and hospitalized for it. I came home from the infusion and took a 2 hour nap. I think I was also emotionally tapped out. There was so much riding on Remicade for me. It took a few days before I really saw any improvement. Then over the next few weeks, I slowly gained more strength and energy. I would say, after the 3rd infusion I noticed a significant difference. I was going every 8 weeks at first but would have about 10 days before the next infusion where I didn’t feel well at all. Now I go every 6 weeks and don’t have that valley before the next treatment. The 1st treatment takes quite a while, they run it slow to make sure you don’t have an allergic reaction, but after that- I’m in and out in about 2 1/2 hours.
      The joint pain doesn’t seem to bother me except for when the weather changes or temperatures are severe. We live in a part of Texas where all 4 season come with extreme temps and high pressure fronts. I hope you will not have to deal with it. I also have RA in my family-mom & aunt-so I understand your fear.
      Many Blessings to you and I hope Remicade is successful for you.

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