Sophie's Story

Sweet, Sweet Sophie

This week we took our sweet, sweet, little Sophie to a pediatric GI doctor. She has been having some issues over the past 5-6 weeks that are very concerning so we got the referral to the GI doc and had our appointment yesterday.

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

Sophie Update

I spoke with the nurse from Sophie's GI doc's office several times today and unfortunately they did not get the stool study results back from the lab today.  So, we are in a holding pattern for now.  The doctor does not want to do the colonoscopy before absolutely ruling out a parasite or C. difficile.  Her symptoms have lasted longer than either of those would typically last but Jim and I are still hoping that it is one of the aforementioned culprits.  We are not doing the blood work until we do the colonoscopy so that they can do it while she is under anesthesia.  Like I said - HOLDING PATTERN. 

In the meantime Sophie's symptoms are about the same:
urgent diarrhea
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

Lab Results

Finally . . . the results came back today.

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

Ulcerative colitis

We are home and we are exhausted. I got about 2 hours of sleep last night and today has been pretty crazy. All 3 kids are sleeping so I am going to get horizontal ASAP.

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

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

Crohn's vs. Ulcerative Colitis

Sophie had her follow-up appointment with her GI on Thursday.  After reviewing the biopsy results unfortunately we are not really any closer to knowing whether she has Crohn's or Ulcerative Colitis (UC).  Right now he said it looks more like UC but there are a few factors that are pointing towards Crohn's too.  The trouble with these 2 diseases is that Crohn's often presents as UC and then the Crohn's diagnosis is made at a later date.

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.


Keep Calm and Fight Crohn's

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 . . . 

Checking in Sophie Doodle. Blood work needed - possible transfusion and lots of meds. Her labs came back very bad. She's a sick little little. :( — at Children's Medical Center.

I always forget how completely impossible it is to sleep here. — at Children's Medical Center.

Quick update. Sophie is enjoying some music therapy right now which has cheered her up a bit. She has not been able to eat since last night so she is a bit grumpy. She will go under for a scope today at 1:30. We are hoping that the infection in her colon is not too bad and that her current antibiotics will clear it quickly and we can still begin her Remicade treatment later this week. — at Children's Medical Center.

Sophie is back in OR ---- waiting, waiting, waiting, waiting! — with Helen at Childrens Hospital Dallas Tx.

Helen took this photo before they took Sophie back to the OR:

Sophie update --- we are awaiting biopsies from scope today and hoping the IV antibiotics are clearing her infection so that we can go forward with her Remicade infusion (possibly) Friday. The infusion is scheduled to take about 4 hours. We will make final decision on blood transfusion tomorrow. Sweets is a sick little little --- she's lost 5lbs and feels pretty yucky. Thank you all for all of the thoughts and prayers. I'm overwhelmed and still full of HOPE. ♥

There are so many things I would change about CMC (not complaining at all) ---- the 1st one would be to add Starbucks delivery to each room for the sleepy mommies! — at Children's Medical Center.
Sophie update: potassium and hemoglobin levels are both down. She is now getting potassium through her IV along with antibiotics. Her heart rate is still good so no blood transfusion today. We are still awaiting biopsy results from scope yesterday. Still HOPEful that she can begin Remicade on Friday. — atChildren's Medical Center.

Wednesday night late ---- Jim arrived home and spent the night with Sweet Sophie so that I could get some much needed wine, pizza and rest.  :)

Sophie update: Miss Priss is pretty sick today. She's now throwing up and unable to eat. Zofran ordered --- hoping it helps. Biopsies all came back ok so orders have been placed to begin Remicade today. They will give her steroids, Benadryl and Tylenol thru IV to counteract any reaction she may have to the drug. She will be monitored very closely for the entire 4 hours.

Someone this week called me a warrior mom. I like it. But I'm scared to death and hurting for my baby. Working today to keep calm and fight Crohn's.

And because I love and admire Ms. Meri so very much . . . this message meant the world to me.  
From one Warrior Mom to another:

According to the dictionary Warrior means: A person who shows great vigor or courage. You are a warrior mom, and she is a warrior little. Keep calm and warrior on! Love you!! Shooting prayers your way all the time. ♥

And Thursday afternoon we started Sophie's Remicade infusion around 5:30 or so. Finally. 
I was nervous and scared and relieved all at the same time.  I cried a lot during the infusion as Sophie lay there sleeping.  I didn't help that I repeatedly was reading the black box warning from the FDA ----

Some children, teenagers, and young adults who received infliximab injection or similar medications developed severe or life-threatening cancers including lymphoma (cancer that begins in the cells that fight infection). Some teenage and young adult males who took infliximab or similar medications developed hepatosplenic T-cell lymphoma (HSTCL), a very serious form of cancer that often causes death within a short period of time. Most of the people who developed HSTCL were being treated for Crohn's disease or ulcerative colitis with infliximab or a similar medication along with another medication called azathioprine (Imuran) or 6-mercaptopurine (Purinethol). Tell your child's doctor if your child has ever had any type of cancer. If your child develops any of these symptoms during his treatment, call his doctor immediately: unexplained weight loss; swollen glands in the neck, underarms, or groin; or easy bruising or bleeding. Talk to your child's doctor about the risks of giving infliximab injection to your child.

Finally, Jim took my iPad away.  Our decision was made, the infusion had begun and we hoped for the best.

Sophie update: We are done. We survived round one!! Sophie slept through the entire infusion. Her blood pressure dropped scary low but they slowed down the infusion and it came back up. She's not feeling great but she is resting again now. I'm totally drained. Ducking Frohn's.

Thank you again for all of the thoughts and prayers. ♥

Tired mama and spirited Doodle — with Laura Williams-DeJulius Houston at Children's Medical Center.

Hospital cafeteria sushi ---- good idea or bad idea? At least I'm in ... the hospital already! Oof.

And for the record . . . it was a very bad idea.

Friday, April 13 at 4:05pm via mobile 

Sophie is so excited and suddenly feeling better!!! Some wonderful friends sent her JULIE --- an American Girl doll.

Friday, April 13 at 6:15pm via mobile 

Sophie is BORED!!

Friday, April 13 at 8:25pm via mobile
Sophie update: tonight Sophie is running a fever (currently 102), severe headache and feeling nauseous. We are about to do a blood culture to check for an infection in her blood. She's pretty sickly and very upset about the 3rd blood draw of the day. :(

Sophie update: Fever is down with help from Tylenol. Her headache feels better and so does her tummy. She was up a couple of times over night. Overall showing signs of improvement. Still awaiting test results. As always thank you all for the love, prayers and support. ♥

Saturday, April 14 at 2:23pm via mobile
Slept, showered, and ate. Now back with the Doodle — at Children's Medical Center.

Saturday, April 14 at 3:18pm via mobile 

Sophie is SO HAPPY!!!
The hospital bed provides tons of entertainment for 6-year olds!!!

Saturday, April 14 at 3:57pm via mobile 

OMG ---- we are out of here. 150% Improvement!!

Saturday, April 14 at 6:13pm via mobile 

Sophie & her friend John with all of her loot. :)

Jim and I loaded up the Doodle and headed home to get the other littles.  

Once home we REALLY realized how much STUFF Sophie had accumulated over the 6 days in the hospital.

The Remicade worked quickly and Sophie is feeling much better.  The Crohn's symptoms are almost gone but we are dealing with a few side effects from the Remicade.  We went in today for her 2nd infusion.  I'll post about that experience tomorrow.

I am at this point very grateful for the quick healing effects of the Remicade but somewhat still pissed off in general that I've had to make a decision to put my sweet child on such a harsh medication at the age of 6.  The fear of the black box warning stays in the back of my mind and that my friends, is why Crohn's Disease fucking sucks the big one!  

Sometimes Keeping calm and sometimes freaking the fuck out . . . 

Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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