April 5, 2009 Family Stories, megacolon, NSN, undiagnosed SN 0 Comments

by Shelly, mom to Francesca from China(NSN) with an undiagnosed SN of megacolon

Here is part one to our story starting with our oldest daughter, Francesca, who is truly one beautiful little girl… inside and out!

When Keith and I started our adoption journey (after experiencing some set backs on starting our family) we never dreamed where this journey would lead us to and how we would accept where our chosen path lead us. Our oldest daughter Francesca was adopted from China back in November 2005 through China’s traditional program. She was 10 months old at the time of our adoption. She was such a scared and very emotional baby when placed into my arms on the never-going-to-forget day three years ago. Within minutes of her being placed in my arms, I knew something just wasn’t right. She cried… and I mean cried for a long time and after looking back on the photos that were taken when in China… she just looked so lost. I wish I knew than what I know now but as they saying goes, you live and you learn… and we truly did. Once we arrived home, we noticed that she was having some bowel issues from not going – to going way too much. We tried everything from regulating her diet to increasing her daily intake of fluids. Medication and exercises were also tried with no such luck. Now, please keep in mind, we had no idea what was going on and after many MANY appointments with our pediatrician, he decided to send us to a specialist to see if they pin-point the problem. Now please remember that during this whole time Francesca personality was a little bit like a roller coaster ride. Sometimes, she was very happy and other times, she was just miserable. In my heart, I just know that something was not right. Within the first 20 minutes of our appointment with the gastro-specialist, she was able to confirm that Francesca indeed has a mega colon and it was very serious. She was severely impacted and something needed to be done that day to relieve her ASAP! She was admitted into the hospital and started getting the needed medications through a feeding tube (that was placed through her nasal cavity). This poor little girl…my heart just broke. Going through China’s traditional program was not a guarantee that we were going to get a healthy baby by all means, but we so never expected this. According to her doctors, if action didn’t take place that day, we could of had a very different outcome. Since that day, not only have I done a ton of research on mega colons, joined a local support group (our daughter was at one time the youngest member…now our Annabelle is), but I have been faithful in giving her the medications that she needs several times a day and have supported and encouraged her in eating a high fiber diet (which is not always that easiest thing to do). Francesca’s mega colon has put limits on her life. She has dealt with having serve diaper rash for most of her life… all the way to bleeding sores on “her bottom” because of her mega colon (she has scars “down there” from the sores she has experienced) and has experienced several major “blow -outs” where her bowels just get so backed up and she can no longer hold “it” and it explodes…everywhere (this is the other side to her mega colon – either she is blocked up and needs a ton of medicine and/or professional help to help her movements along… as I mentioned above – or – she just can’t control her bowel movements and it is explosive). Since she is having a very hard time getting potty trained (her bowels are constantly working and constantly leaking because of her medications… she can NOT get constipated), she can not go to preschool, she can not join dance classes, she can not take art classes and everywhere we go, we must carry a load of diapers with us for changing purposes and she is very limited on what she can do because of still being in diapers. When I ask her about being potty trained and going on the potty, this poor little dear just feels that it will never happen and she feels that her bowel problems are more controlling and important in her life than wanting to take some art classes and/or preschool. (How sad is that!) Keith and I are very passionate about helping our children and this situation is no different. After asking a lot of questions, having many pow-wows with all Francesca’s doctors, and doing a lot of research, we decided to try and conquer this disease in a very different way. A few weeks ago, Francesca and I started seeing a child psychologist who specializes in children with medical disorders. So far so good. Her therapist has been wonderful and has some great ideas to help out Francesca with her bowel and emotional issues. Since our first visit with her therapist, I have learned so much about our Francesca’s life before being placed into my arms that day three years ago and I have also learned so much from her therapist on why Francesca is the way she is. Some of the things we did learn about our Francesca and her life at her orphanage was that they most likely knew that she did have a bowel problem and since they didn’t know how to handle it or treat her for it…the only thing they could do was tie her to a potty chair for long periods at a time (we know this because of the markings that were on her legs when we first got her and after our therapist did some research… our biggest fears were confirmed… she was tied to a potty chair for long periods of time). Also we discovered that she was never in foster care (as all the other children that were adopted at the same time as Francesca) because of her bowel issues and she never formed any type of bond with anyone from her orphanage (how could she when she was left alone in a room most of the day… all by herself). Just learning this helped us understand so much about why our little girl acted and behaved the way she did. Now, I am not saying that she was mistreated in any way. I do feel and believe that her care takers just didn’t know what else to do. I am not blaming anyone for this… I am just happy that I finally got some information, proof, to back up my suspicions on what I thought happened before being united with us. Now with all this said, I can truly see why our little girl does have such strong issues with her bowels. Not only does she have a mega colon… but her early treatment for the mega colon was not the way her condition should of had been handled… especially the emotional bonding that she never experienced before coming into our lives. We now know that reassurance, love, trust, and communication are the keys to living with a mega colon… (oh ya… and a high fiber diet too!)

Please remember that Francesca has not have any surgery to correct her mega colon. Her specialists believe that the part of her colon that is affected will over time go back to its normal size. Am I overly happy about all the medication she is on? No, I am not, but if she doesn’t take it… she get blocked up… and that is just not good for her. If you are wondering what types of medication she takes, here they are: Miralax over 17grams per day – Benefiber 2-4 tablespoons daily, a stool softener… depending on diet intake for that day – and Fletcher’s laxative for when she misses a day of going… along with doubling up on all her other medications and if needed, Fleet enemas (which we had to resort to many times in the past).

Only time will tell what will happen with Francesca. We live with this disease every day… dealing with a ton of medications, a strict diet and constant discussion about poop. We also deal with i

ssues of that little girl being tied to a chair for long periods of time without anyone around. Francesca has conquered so much over the three years she has come home with us and this is not going to stop her living her life. We are making sure of that. This is Francesca’s story of her life ~ so far ~ with a mega colon.

Since we learned so much over the years of successful and failed treatments and since we feel we have an amazing team of doctors and specialist backing us up 100%… we felt it in our hearts to seek another daughter from China that also has been diagnosed with a mega colon… and this is where our Annabelle’s story begins.

UPDATE: Since I started to compose this post, we have started again down the journey of potty training. With the network of supporters we have surrounding us, it looks like that we are making progress! She is doing well and I am so proud of her! I so wish I could go into more detail at this time, but for the respect of my daughter’s struggle and privacy, I am going to hold off on her progress until I feel comfortable sharing all the details here.

If anyone at any time has questions regarding this post, I would so appreciate that you would email me privately so we can discuss this further:

You can visit our family blog here.

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