The concerns the doctor has are devastating! Sophie will go into the hospital on Friday morning to have a colonoscopy and blood work done to confirm a diagnosis of Crohn's disease. We have Crohn's disease in the family as well as other auto-immune diseases so I am not completely shocked but am hoping, praying, wishing, begging, pleading with God to let the results come back negative.
Crohn’s disease is a condition that affects the gastrointestinal tract. Symptoms are rough on children, and can range from vomiting, rectal bleeding, abdominal pain, fever, and fatigue, to relentless diarrhea.
We finished her stool study today and took all the poop to the lab for testing. I am hoping we get those results back quickly so that we can move forward. And for the record - - - NO ONE ever tells you before you have children that you may have to collect POOP in a poop catcher and spoon it into little vials and drive those little poop filled vials to a lab for testing. ANYONE that ever says being a mom is EASY is delusional. Rewarding - yes!! Easy - HELL NO!
All joking aside --- Jim and I are asking that you keep Sophie and our family in your thoughts and/or prayers while we are dealing with her symptoms, the testing and waiting for the final results from the procedure on Friday.
Thursday, June 3, 2010
In the meantime Sophie's symptoms are about the same:
large amount of pooling blood with each stool
8-10 bowel movements per day
tummy ache before BM
Yesterday while at swim practice Sophie became upset when she had to get out of the pool 2x to urgently go to the restroom. She said "Mommy, I am tired of going doop (Sophie's word for poop) ALL OF THE TIME". I don't blame her - it is not fun! I think we are more than ready for some answers.
I will update as soon as we know more.
Thank you all for your kind words, good thoughts and many prayers.
Wednesday, June 9, 2010
The bad news is the the lab results were good. We were hoping that they would find something in the stool study that would be causing Sophie's symptoms. Unfortunately, that was not the case so we are going forward with the colonoscopy and blood work on Friday.
She took her 1st dose of MiraLax tonight has 2 more doses tomorrow and is on a liquid diet starting at noon.
I am sure the scope will give us the answers we need but I'm a little overwhelmed at the thought of the diagnosis that we will receive.
I am praying - praying - praying! This old song comes to mind from Tim McGraw . . .
Take this very breath you gave me
Take the heart from my chest
I'll gladly take her place if you let me,
make this my last request
Please, please please - it's so damn unfair. I would so willingly take it all. Bring it on! I wish I could take it away from both Nate and Sophie.
Diabetes - I would take it from Nate in a heartbeat!
Crohn's Disease - please give it to me instead - I don't want my daughter to suffer any longer!
Friday, June 11, 2010
The doctor confirmed that right now Sophie has ulcerative colitis with a possible later diagnosis of Chrohn's. We will have the biopsy and blood work results back mid to late next week.
I would like to thank all that have lifted our family up in prayer over the past week. Your love and support means more than I can express. Seriously, I am so thankful for all of the kind words, prayers and messages that we have received.
Now here is the description of Ulcerative Colitis for those who would like to know:
Copied from webmd.com
Ulcerative colitis and Crohn's disease are the most common types of inflammatory bowel disease. Ulcerative colitis affects only the colon and rectum. Crohn’s can affect any part of the digestive tract. To learn more about Crohn’s disease, see the topic Crohn’s Disease.
What is ulcerative colitis?
Ulcerative colitis is a disease that causes inflammation and sores (ulcers) in the lining of the large intestine, or colon. It usually affects the lower section (sigmoid colon) and the rectum. But it can affect the entire colon. In general, the more of the colon that’s affected, the worse the symptoms will be.
Ulcerative colitis can affect people of any age, but most people who have it are diagnosed before the age of 30.
What causes ulcerative colitis?
Experts are not sure what causes ulcerative colitis. They think it might be caused by the immune system overreacting to normal bacteria in the digestive tract. Or other kinds of bacteria and viruses may cause the disease.
Ulcerative colitis is not caused by stress, as people thought in the past. But if you have ulcerative colitis, stress can make it worse.
You are more likely to get ulcerative colitis if other people in your family have it.
What are the symptoms?
The main symptoms are:
* Belly pain or cramps.
* Bloody diarrhea or an urgent need to have a bowel movement.
* Bleeding from the rectum.
Some people also may have a fever, may not feel hungry, and may lose weight. In severe cases, people may have diarrhea 10 to 20 times a day.
Ulcerative colitis can also cause other problems, such as joint pain, eye problems, or liver disease. But these symptoms are more common in people who have Crohn’s disease.
In most people, the symptoms come and go. Some people go for months or years without symptoms (remission). Then they will have a flare-up. About 5 to 10 out of 100 people with ulcerative colitis have symptoms all the time.
Ulcerative colitis sometimes leads to more serious problems. It can cause scarring of the bile duct. This can lead to liver damage. In rare cases, severe disease causes the colon to swell to many times its normal size (toxic megacolon). This can be deadly and needs emergency treatment.
People who have ulcerative colitis for 8 years or longer have a greater chance of getting colon cancer.2 Talk to your doctor about your need for cancer screening. Screening tests help find cancer early, when it is easier to treat.
How is ulcerative colitis diagnosed?
To diagnose ulcerative colitis, doctors ask about the symptoms, do a physical exam, and do a number of tests. Testing can help the doctor rule out other problems that can cause similar symptoms, such as Crohn’s disease, irritable bowel syndrome, or diverticulitis.
Tests that may be done include:
* A colonoscopy. In this test, a doctor uses a thin, lighted tool to look at the inside of your entire colon. At the same time, the doctor may take a sample (biopsy) of the lining of the colon.
* A barium enema X-ray or an X-ray of your belly to show pictures of the colon.
* Blood tests, which are done to look for infection or inflammation.
* Stool sample testing to look for blood, infection, and white blood cells.
How is it treated?
Ulcerative colitis affects everyone differently. Your doctor will help you find treatments that reduce your symptoms and help you avoid new flare-ups.
Doctors often prescribe medicines to reduce inflammation, such as:
* Steroid medicines. These can help reduce or stop symptoms. They are only used for short periods because they can cause side effects, such as bone thinning (osteoporosis).
* Aminosalicylates. These can be used to reduce or stop symptoms (sometimes at the same time as steroid medicines). After your symptoms are under control, you may take these medicines to help prevent flare-ups.
* Medicines that control the immune system (immunomodulators). You may need these if your disease is severe and aminosalicylates don't keep it from flaring up.
Some people find that certain foods make their symptoms worse. If this happens to you, it makes sense to not eat those foods. But be sure to eat a healthy, varied diet to keep your weight up and stay strong.
If you have severe symptoms and medicines don't help, you may need surgery to remove part or all of your colon. Removing the entire colon cures ulcerative colitis. It also prevents colon cancer. But it does have some serious risks. Still, most people who have surgery are glad they did.
How will ulcerative colitis affect your life?
Ulcerative colitis can be hard to live with. During a flare-up it may seem like you are always running to the bathroom. This can be embarrassing and can take a toll on how you feel about yourself. Not knowing when the disease will strike next can be stressful. Stress may actually make the problem worse.
Saturday, June 19, 2010
The good news is that Sophie is responding to the treatment that we have chosen and is feeling SO much better.
The results from the blood draw are not all back yet --- we are still waiting for the Celiac results. Thank you to those that sent messages advising us to check for Celiac.
WEDNESDAY, FEBRUARY 29, 2012
Today Jim and I took Super Sweet Sophie to Children's hospital for her 3rd colonoscopy and endoscopy in as many years. Yea - she's 6 and this is just another day in the life. SUCH A TROOPER!
I know everyone thinks their kids are amazing and fantastic and beautiful and perfect but seriously my kid really is amazing and fantastic and beautiful and perfect! Sophie is a ROCK STAR.
Sunday we started a low residue diet with a little Ex-Lax on the side until Tuesday when we went to an all clear liquid diet combined with 32-oz of Miralax in 3 hours followed with an Ex-Lax chaser. That's right the girl didn't have anything but clear liquids all day Tuesday! She didn't complain once. I fasted with her and I was freaking hungry!! We had juice, water, sweet tea, a popsicle and some chicken broth and that's it!
We started the Miralax at 2p and had it complete a little after 5p. That's really hard for an adult to do but sweet Sophie managed to get it done with little complaint. She certainly didn't enjoy it but she did it and I think she is just the bravest little girl I know!
So, back to today . . . we arrived at Children's starving from lack of food but also starving for answers! Sophie has been on steroids for 2 years on and off and for 9-months straight without being able to get off without having severe UC symptoms. She's been on Aziathiaprine for 9-months with various other drugs in the mix along the way. All with no success. We decided to do the scopes today because even on the steroids right now she is losing A LOT of blood each time she goes to the restroom. Her blood work all looks good so we needed to figure out what is going on inside her sweet little body.
After the scope was done we met with Sophie's wonderful doctor and he showed us the the pictures of her colon. The inflamed area has moved from just the left side of her colon to the entire colon in a classic Crohn's Disease pattern. Her diagnosis has officially become Crohn's instead of Ulcerative Colitis. This is something that although we thought would happen eventually was still a very hard pill to swallow.
You can read about the differences between UC and CD here.
Sophie never complains but we have determined that although she thinks she feels ok she has most likely forgotten what good feels like. We need to change that.
At this point in our journey we feel like and Sophie's doctor feels like the only thing that will bring her some relief is to start her on Remicade.
We will get the results of the biopsies next week as well as the result of a TB test that she had to take before starting Remicade. We are hoping that the Remicade is the answer we have been looking for but we are also scared at the same time. It's a big drug to give to such a little girl and the warnings and side effects frankly scare the hell out of us.
Jim and I came together as parents today and made the decision that this is the course of action we need to take, this is what is best for Sophie, and we will have faith that everything will turn out the way it is supposed to turn out. As parents we are often faced with tough decisions and we can only do what we feel is best ---- not ever really knowing what the correct answer is or should be ---- this is certainly one of those times for us.
Keep Calm and Fight Crohn's . . .
The Sh*t that is Crohn's Disease
On Monday, April 9th Sophie was admitted to Children's Hospital of Dallas for the 2nd time in less than a year for her Crohn's Disease.
Looking back now I try make it less horrific than it was but it is still too fresh in my mind to be forgotten. Sometimes time makes it better, sometimes it does not and in this case I'm pretty sure it will stick with me for quite a while.
How did we get there?
On the 29th of February Sophie had her 3rd colonoscopy in less than 2 years --- you can read about ithere. The days before the procedure required a special diet and fasting. During that time we took Sophie off of the steroids she has been on for 2 years and her Imuran (azathioprine). After the scope her diagnosis was officially changed from Ulcerative Colitis to Crohn's Disease and we made the decision to keep her off of steroids and Imuran and move forward with a new treatment plan ofRemicade as soon as possible. Unfortunately, Sophie was diagnosed with Strep twice and then Scarlet Fever in just over a months time. Each illness required antibiotics which always helps tremendously but each time caused her to have C-Diff. Each time delaying further our being able to start her Remicade treatment.
So, without the steroids Sophie got very sick very fast. It's hard for me not to use a lot of curse words when I type out this post. So, I think I will start now. Some people believe that people that curse are uneducated and/or can't think of more appropriate words to use. I disagree, I believe sometimes situations such as these call for a lot of cursing 1) to portray how strongly I despise fucking Crohn's 2) to explain how truly fucking horrific this damn disease can be and 3) sometimes it makes me feel better just to fucking cuss! You have been warned!
Thank you, Alexis for this awesome picture!
By the time Sophie was admitted to the hospital she was having 12-15 bloody stools a day. Really, she was just pooping blood but there wasn't that much poop involved at that point. Along with losing massive amounts of blood, she was having sever stomach cramps and pain, was dehydrated and herhemoglobin level was 7.3 (if I remember correctly). It was fucking bad! She felt terrible and as her mommy I was just emotionally overwhelmed watching her suffer.
Jim left town Monday morning and Sophie was admitted that afternoon. Although friends and family offered to go with me to the hospital I thought sure I could handle it alone. I dropped Nate off with my parents and had a friend pick up Em from school and Sophie and I headed to Dallas. Just hours after arriving I felt overwhelmed. Emotionally and physically. The IV team couldn't seem to get the IV into her vien which caused a lot of tears and screaming, the constant trips with Sophie to the bathroom where I was literally holding her up on the toilet all while maneuvering her around with an IV, and heart monitor, plus feeling for the 1st time that I was totally alone with Sweet Sophie and her stupid, evil Crohn's Disease was pretty damn tough.
Luckily, starting on evening 1 friends and family started streaming in which was a nice distraction for both me and for Sophie. I literally would have not eaten or had anything to drink if it had not been for my friends and family bringing in food, diet coke and coffee for me. With it just being me and the Doodle I was pretty much at her bedside the entire time and could not or would not leave her unless someone else was there with her.
Instead of trying to remember each day I am going to import my Facebook statuses from each day as that was my main form of communication with everyone. Which saved my sanity because I could not have given each and every person their own update so here we go . . .