Coping | IBD
As a mother of a 5 year old with Ulcerative Colitis, you would not believe just how many times I have heard people tell me “I don’t think I could do what you do, you are such a strong Mother.” But the thing is, it’s not strength and it’s not exactly like I had a choice, I am simply doing what I must do as a Mother to care and protect my child when I am forced with no other options.
Alexis was diagnosed at just 3 years old. My world shifted and I felt like I was losing control. As a mother, I felt like I let my innocent baby girl down. Fitting in Doctor appointment after Doctor appointment, to making sure she received her medications on time (at one point I had to give her medicine to her ten separate times throughout the day) was all I could do to ensure she felt as normal as she possibly could. Many hospitalizations later, I was given the option of Remicade or total colectomy. I wasn’t ready to put her through such a major surgery, but the medication had side effects that scared me to death. That saying “Mommy knows best!” isn’t always true, because I had no idea what to do. Her G.I Doctor talked with me several times and suggested we give Remicade a fighting chance, so we did. It failed.
July 12, 2012 was the absolute scariest day of my life. Alexis was forced to have a colectomy with a temporary ileostomy, and again I felt as I had failed her. The pain I felt while she was in the operating room is simply unexplainable. Seeing her in recovery was also a moment I will never ever forget. These are situations you never expect to happen as a parent, but when you are forced to deal with them you must always put your best foot forward and do it with a smile. So we did, and we made it through (sometimes, barely hanging on!). We were lucky enough to prepare Alexis for the transition which made it 100% easier on her. She knew that without the surgery, she would still be sick. She has taken the change so well, and I would like to think that my husband and I had a huge role in that.
So, to ANY parent in any comparable situation: You are allowed to cry, be angry, hurt or sad. These are our precious kids we are talking about here! What matters most is that you are there for your children when they need you. Talk to them; let them know it will be okay; shower them with your love and attention. As a parent, that’s really all you can do when you are left with no other options. Walk tall and they will follow.
“You never know how strong you are, until being strong is the only choice you have.”
So inspirational! I’m 33 and have a tough time dealing with UC, I can’t imagine someone so young having to! Alexis is a strong little girl who hopefully will lead a normal life with that devil organ gone 🙂 keep up the good work!!!
Thank you for sharing your story! My 12 year old daughter had the same surgery last year as all her drug treatments failed including Remicade. She underwent j-pouch surgery 5 days ago and I’m sitting next to her now as she battles the pain through yet another surgery. Your story touches my heart as a mother who has held her hand and rubbed her belly every night during a flair, held back tears when the nurses continually had to poke her over and over in an attempt to find a strong enough vein, lied on the bathroom tile with her when she would need to clean out prior to her colonoscopies. “You never know how strong you are, until being strong is the only choice you have” …. Best wishes to you and your precious daughter for continued healing and Health and happiness!
She should come to Camp Oasis when she is old enough! Meeting other kiddies with colitis is wonderful for them!
Tara, your story was so beautiful and I am so glad you posted it! Alexis is a strong little girl, but you are right—you and your husband prepared her for the surgery and gave her strength. I had a partial bowel resection in 2006, and I work really hard to stay healthy, and I wrote a book about it, so I could help others: Living With Crohn’s & Colitis (I wrote with a naturopathic physician). I know you are up on all the drug therapies out there, and the treatment options, but there are some great alternative therapies to help with Alexis’ care and recovery. Good luck!
Stephanie, a great suggestion! I mentioned the ccfa.org’s camp to a friend, and her daughter loved it!!!
thanks everyone! She is on the right path and we are planning to move forward with the j-pouch procedure in the next few months. She is looking forward to looking “normal” on the outside again, but she is absolutely loving NOT feeling sick for once. You can visit my blog if you want to read about our journey up until now; or from here on after! https://tarablackburn.blogspot.com/
Alexis is a strong little girl. I’ve been lucky that since I was diagnosed with UC 29 years ago it’s been mostly kept in control with medication. I have been able to lower the amount of medication I take by altering my diet and following the scdiet.com developed by a Mom and her 4 yr. old daughters Dr. many years ago. Eating Paleo pretty much is what I do. There are some great alternative therapies that may work for people out there like acupuncture, diet, supplements. I wish Alexis well on her journey. She is a trooper as I know well how draining it is to prep for a colonoscopy and just having horrible spasms in your colon or losing control of your bowels in public. She is very brave. Congratulations on feeling human again!
I was touched after reading about Alexis’s battle with UC; MORE SO AS BEING A PATIENT OF UC MYSELF i CAN REALLY UNDERSTAND THE AGONY OF HAVING A disease that makes your life take a complete 360 degree turn. I was diagnosed last year with moderate to severe ulcerativ colitis at the age of 36, and believe me I am a completely changed person; physically, mentally, emotionally and spiritually. From being a perfectly healthy, able bodied and fit mum of a ten year old son and 9 year old daughter ,to seeing myself lose about 12 kg of weight and energy in about 9 months ; life has taught me a great lesson; you never know how strong you are until being strong is the only option you are left with. I had friends , family acquaitances all sympathising with my poor health as I struggled with building a new wardrobe(coming down from a ‘L’ to ‘S’ size in just a few months. I lost the vigour and enthusiasm I had for living life full throttle. the kids too figured that all was not well with their mum.I could not get into hard gymming , trekking anymore; a family passion . It was like I got sucked up into vacuum. For me apart from the medication and being extra careful with what goes into my ailing gut, Prayers have worked wonders. I have learnt to connect with my inner self and focus on a power that is much stronger than our physical pains.Iknow Alexis is yet too small for this but I guess starting off earlyin self realisation, with you as a perfect guide can make her emerge emotionally, mentally and spiritually stronger by the time she is able to care of herself. Believe me, she’d emerge a winner… at a much higher lever and far ahead of kids her age. Lots of love, lots of life and lots of laughter to mum and daughter
Gulneet chahal,
India
gulneetchahal@gmail.com
Tara I can’t thank you enough for sharing Alexis’s story. It really helps all the other mom’s out there(me included) that are not sure whether we are making the right decision. My daughter is older but our story is about the same. A medical failure,as the dr’s put it, including Remicade. We will be facing the 1st step of our Jpouch surgery soon. Thank you for keeping us updated on your journey and for letting us know what it is like post surgery. It’s a big help for those of us still in the dark about what to expect.And you are so right about being strong. You don’t realize how strong you are being. You are simply taking care of your little girl and trying to comfort her when she isn’t feeling well and making sure she gets the care she needs. Obviously we will do whatever it takes for our children and when you have this disease us moms just have to go above and beyond what other moms have to do…Good luck to you all. You are in my prayers for a quick recovery