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.
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
Remicade every 6 weeks
Monnie has a personal blog that you can follow as well: http://monnie-forwhatitsworth.blogspot.com/