Charis and I
***This is the first in a series of posts by my mother talking about her experience with IBD from a mother’s perspective.***
When Charis asked me to put into words my feelings as the mother of a child with Ulcerative Colitis, I was hesitant because I was unsure how to even begin to convey the emotional turmoil this disease has brought into all our lives. I decided the best approach was to tell you how I viewed my role as a “Mother”. When Charis was born, I made a solemn promise to her to protect her, keep her safe from harm, and see that she had a life filled with joy and happiness. I was confident that I could fix any troubling situation that arose in her life and if I couldn’t, I’d find someone who could. And just where did I get this attitude you ask?…..from my father. My father could fix anything that broke. In our neighborhood, he was known as “Mr. Fix-It”. So I grew up thinking that no matter what the problem entailed, it could be fixed and that there was always a reason why things broke. You just had to find it and fix it. Ulcerative Colitis changed all that.
When Charis was first diagnosed in May 2009, I really didn’t know too much about UC. I could never have imagined at that point the physical devastation this disease was capable of causing. So, of course, I began to examine the causes of the disease and attempted to trace back her life so I could understand what we were dealing with and move to the next step of “fixing” it. As her mother, I felt somewhat responsible. Should I have fed her only organic food as she was growing up? Had I noticed earlier signs of the disease and just chose to ignore them, assuming that all children have “tummy upsets” from time to time? And the biggie, did the extreme stress I was under from an abusive marriage while I was pregnant with her set her up for this? I examined everything I could think of and came up with no viable reason for this diagnoses. But that didn’t stop me from looking for an answer to end her misery.
Over the next few weeks I spent hours on the internet researching UC and the progression we might expect. Unfortunately all the information I could find was written in clinical terms and none of it addressed the “human factor” and the impact it had on the victim’s life as well as that of the family. In the meantime, Charis was being held hostage by her toilet. My frustration with the disease was building.
I just couldn’t understand how UC could have gotten such a hold on her so fast and thus far was not responding to any of the medications the doctors had given her. I realized at this point that I was completely ineffectual in making her feel better. I was angry and I wanted somebody to make this thing go away. Then came the “mega colon”.
I have a mental list of the top five “worst days” of my life. The day her GI doctor called me and told me she had “mega Colon” moved right t the top of the list. Charis had been in the hospital for a few days and I knew she wasn’t doing well. We had talked to the GI doctor and discussed the various options available to us. All of them scared me, especially Remicade. The potential long-term use of this drug had what I considered to be devastating side-effects. I was really scared about this drug but since she had not responded well to other treatments it looked as though this might be the next experiment. We were at home and had not left for the hospital yet when the phone call came through.
I hung up the phone and collapsed weeping into the arms of her father saying, “her condition has taken a turn for the worse and there is “nothing I can do about it!” It was the most helpless, awful moment of my life. I truly believed that she might die before we could make the 45 minute drive to the hospital. This just couldn’t be happening to my beautiful, smart, talented daughter. I was so afraid at this point that I would lose her and this thought was just too horrible to even contemplate. I mean, how could this happen? We live in the middle of several of the most technologically advanced hospitals in the whole country, if not the world. And she’s lying over there with her colon swelling to the explosion point and NO one can do anything about it? This could not be happening. I pulled myself together when we arrived at the hospital and learned that they were waiting on an ambulance to transfer her to the hospital in Chapel Hill. They said this was being done as they were not able to handle her situation if the colon did burst and she needed to be at UNC where they were equipped for it. This did NOT make me feel a whole lot better. Her life was still in danger.
The transfer was made and I believe Charis has talked about the resulting surgery in her blog. I just took life one day at a time and hoped the doctors had her best interest in mind. Seeing her just before she went into surgery was scary as we really didn’t know what to expect for her. All you can do at times like this is hope for the best and prepare for the worst. Sitting in the surgical waiting area was tough. The surgeries all seemed to take much longer than anticipated. I tried to read and keep my mind off what was happening but it was impossible to do. What was going on in the surgical suite? Were they running into problems? Why was this taking so long? Other families were being led back to visit their loved ones after surgery but no one came for us. The waiting area continued to empty out but still we sat. This was the case in just about all of her eight surgeries. I must have played 100 games of Angry Birds!
When we finally got to see her after each of these surgeries, I didn’t see how she could tolerate the obvious pain she was in. I would hold her hand and try to say encouraging things like “you did great” or “the doctor said everything went well”. But to see her lying there with needles and tubes attached to her small body was heartbreaking. Seeing your child go through that level of pain and discomfort and all you can do is hold her hand is as hard to do as anything I had experienced prior to that time. And the worst was yet to come. Recovery from these surgeries was brutal. I wanted to bear the pain for her just to give her a break. If I could have transferred the pain to my shoulders I would have gladly done it. No mother should have to see her child suffer like Charis did. At this point all I could do was to let her know I was close by and that I shared her pain emotionally, if not physically. The lead weight I carried around in my stomach told a different story, however.
I’ll cover more in my next Blog about the changes in the way I viewed the world after UC took up residence in my child.
CONTINUE ON TO PART 2
About the Author
10 Responses to My Child Has IBD: A Mother’s Journey
Leave a Reply
Hi, I’m Charis!
Join Us
Tears are streaming down my face as I read this. I am a mom of a teenage son who was diagnosed with severe UC in October 2010. He contracted C.Diff and was non-responsive to the medications, including remicade (which I completely agree with your mom on, it’s a scary drug). On December 16, 2010, they removed his colon as it had become so compromised that it was life threatening. Unfortunately, he suffered a series of complications one of which almost took his life. Like your mom, we watched as everyone else in the surgical waiting room would be called in to see their loved ones. Finally, when they came to us – it was all 3 surgeons and they were teary eyed and simply said “he is a very sick boy right now”. It was the worst feeling I have EVER experienced. I remember not being able to breathe and feeling helpless. The feelings and experiences your mom shared were exactly what I remember. After 3 months in the hospital, our boy came home and has largely gone back to being a typical 16 year old boy but life is definitely different. He still has various complications. He still is not hugely open about his disease – he doesn’t want anyone to treat or think of him any differently. I am hopeful that he will, in time, become more open about it…he’s a teenager so I’ve learned to be patient! hahaha!
I SO enjoy reading your posts…they are a source of support, encouragement and inspiration! Thank you for all your sharing!
Vannia, I’m glad you were able to connect with how my mother felt. I asked her to write out her thoughts specificaly for other mothers lik you because they need support just as much as the IBD patients themselves do. Though it sucks that your son had to go through so much, I’m sure he’s a stronger person for it. I’m glad to hear he’s doing much better and I hope things continue that way!!
Charis that was a great idea to have your mom give her input. Alot of her early thoughts of the signs of the disease when you were a kid or abusive marriage stress on you. It all resanates with me because I grew up that exact way and thought that same thing.I can remember being very young and having stomach issues. The stress was a constant in my life as a kid. I don’t recall seeing your mothers name but I will tell you madam you did one hell of a job raising this woman. She is tough and is someone to look up to.I think you should get some credit for that without question.
Yep, we sound a lot alike, Brian
I too remember having a lot of stomach issues but doctors never gave it much thought. I wish we knew more about what triggers IBD – maybe one day (soon, I hope) we will. I’ll pass along your note to her. 
I know the pain your Mom felt–is feeling– my daughter was diagnosed with severe U C in 2005 and had no remission in the 5 years she had the disease. It started to take a REALLY bad turn in May 2010 and she couldn’t get surgery til July 2010. She gradually worsened to the point when she did have the surgery she was basically an emergency even if she was scheduled to have surgery.Still having complications and I am doubtful she will ever get her J pouch to work so I really look to You Charis and others who have permanent iliostomies for inspiration for her. Your Mom’s story brings tears to my eyes I just know we would be great friends because of these horrible similar experiences.
Thank you so much for writing, Victoria. I’m sorry that your daughter has been through UC and that she’s still having complications – I had problems with my j pouch too and was miserable. I chose the ostomy because it’s the only way I could imagine any sort of happy future for myself. My parents supported me 100% because they wanted me to be healthy again. I will show my mom what you wrote and I know it will touch her
I’ve often wondered if my family suffers more than I do. At least the doctors give me pain medication. My parents, however, have to actually feel every ounce of emotional pain. I didn’t understand this until I became a mother myself.
I didn’t understand either until doctors thought my husband was having a heart attack – then I got a tiny glimpse into what it must feel like to be part of the picture but not as a patient, if that makes sense. Still not comparable to what parents go through though..
I am sitting here tears welling in my eyes. I have never heard about how our illnesses effect our family. Thanks for sharing x
Thank you for reading it Gemma
It’s true, we don’t always think about how our families live through their own version of IBD.