Thursday, July 14, 2011

The Poop on Super Sweet Sophie

I've been going back and forth with this for a while.

You know me --- I'm pretty transparent.  I'm not usually afraid to put it ALL out there.  I've been criticized by many for putting Nate on this blog and disclosing so much about him and his diabetes.  I've ignored them to a point in hopes that what I am writing here is helping more than it is hurting.  The diabetes online community (as we all know) is amazing.

Sadly, I have not found the same with Crohn's and Colitis.  I follow one blog of an adult with Crohn's and I only found it because it is Chasiti's sister.  I have no network, no group, no online community.  It may be there but I haven't seemed to find it and if it is there it certainly isn't as easy to find and join as the DOC.

Anyway, all of that to say I've thought long and hard about blogging about Sophie's symptoms and treatments and I've decided that although she may want to kill me one day I'm hoping that she will realize that it may help more than it will hurt.  If one parent finds my blog and it makes him or her feel less alone then it is worth it.

It has been just over a year since Sophie was diagnosed with Ulcerative Colitis and at this time that is still her official diagnosis.  We have not done another scope to see if the inflammation is anywhere else.  My sister-in-law and a few others that I know were diagnosed with UC and then later the dx was changed to Crohn's.  Sophie's symptoms often appear to be more of the Crohn's symptoms and at this point our next step in treatment is used for both UC and Crohn's but more commonly in Crohn's (as I understand it --- and believe me I don't always understand it).

Since Sophie's diagnosis she has only been in remission for 6-8 weeks at a time so she has pretty much been on steroids for an entire year.  This is not good!  There is no cure for Crohn's or UC so the ultimate goal is to get the patient in remission and keep them there --- some people can stay in remission for years.  We have been unable to accomplish this with Sweet Sophie.


So, here we go . . .

Sophie's diagnosis - short and not so sweet:

Last summer Sophie had what I thought was a little tummy bug.  It started with diarrhea -- nothing too alarming. After 2 weeks or so she was still having diarrhea but it seemed to be increasing to maybe 5 or 6 times a day. Honestly, I still thought it was a tummy bug.  It had been less than a year since Nate was dx with T1 and I was still a little overwhelmed.  Another week went by and the number of times per day had increased to 10 times per day and we were starting to see a lot of blood and mucous in her diarrhea.  It started interrupting life, waking her up at night and becoming almost uncontrollable. There would literally be blood everywhere -- in the toilet, on the floor and in her panties.  I won't lie --- it was completely disturbing but I still thought it was a tummy bug.  Denial? Maybe.  I finally took her in to our peds office and they sent us straight to a pediatric GI.  I blogged about it here under Sophie's Story.  After a lot of poop studies, blood work and a colonoscopy Sophie was diagnosed with UC.  If you have questions I strongly suggest you read the detailed account (just follow the link above).

She was immediately put on steroids and went into remission but just as quickly as she went into remission she was back out and back on steroids.  We've gone through the same song and dance over and over throughout the past year.

When her symptoms return she has severe stomach pain and cramping, urgent diarrhea anywhere from 6-15 times per day, a lot of blood loss, fatigue, and loss of appetite.

In the past year Sophie's weight has dropped from the 50th percentile down to the 5th percentile.  She has become anemic and is malnourished. The inflammation in her colon does not allow her body to absorb the nutrients she needs to stay strong and healthy.

We left the practice where she was originally diagnosed so that we could get her into see a doctor at Children's Medical Center at Legacy.  He is wonderful.  He is very concerned about Sophie being on steroids for so long and is actively trying to get her into remission and find a maintenance drug that will keep her there.

Her original doctor tried the drug Pentasa  (mesalamine) as a maintenance drug but she had a reaction to it that causes the same symptoms as UC or Crohn's.  She went off that and we didn't try anything else for a while.  When we went to see our new doctor he put her on a Rx probiotic called VSL#3 but she immediately came out of remission and got very, very sick.  We have no idea if the VSL#3 had anything to do with her coming out of remission but she is now off of the VSL#3 and back on Prednisolone (steroid).

There here and now . . .

Sophie is out of remission and sicker than she has even been (since dx), she is on a very large dose of steroids and she is not responding to them at this point.  She is losing a lot of blood and has been a very sick little girl although you would never know it by looking at her beautiful smile.

Her illness interrupts everything.  When she has to go --- she has to go.  Her tummy hurts so bad that it actually pains me to see her doubled over.  As a mom there is probably not a worse feeling than not being able to help your children.  Seeing her feel so bad and not being able to help her is physically breaking me down.  I actually find strength in Sophie's smile.  It is amazing --- she does not let this stupid disease slow her down at all.  It gets in her way a lot but she just keeps on keeping on.




*On a side note we do a lot of reading while she is going and she is now reading on a 1st grade level.

You may wonder if potty pics are acceptable?  Hmmm --- I wondered too.  But, here's the deal --- The Houston family is raising awareness about T1 and Crohn's and Colitis.  Unfortunately, Sophie's disease is not pretty and most people don't want to talk about it.  I'm here to talk about it, educate about it and raise awareness.   Sophie told me --- 'Mommy, you can put those pictures on your blog.'  She's so cute, brave and resilient.


 Her doctor wants to put her on the drug Azathioprine.  I have been trying to avoid this drug because it pretty much scares the crap out of me. 

Here is why: 

Azathioprine is a purine analogue immunosuppressive drug. It is used to prevent organ rejection following organ transplantation and to treat a vast array of autoimmune diseases, including rheumatoid arthritis, pemphigus, inflammatory bowel disease (such as Crohn's disease and ulcerative Colitis), multiple sclerosis, autoimmune hepatitis, atopic dermatitis, Myasthenia Gravis, Neuromyelitis Optica / NMO / Devic, restrictive lung disease, and others.

Side-effects can include nausea, fatigue, hair loss, and rash. Because azathioprine suppresses the bone marrow, patients will be more susceptible to infection. Acute pancreatitis can also occur, especially in patients with Crohn's disease. Caution should be exercised when it is used in conjunction with purine analogues such as allopurinol. The enzyme thiopurine S-methyltransferase (TPMT) deactivates 6-mercaptopurine. Genetic polymorphisms of TPMT can lead to excessive drug toxicity, thus assay of serum TPMT may be useful to prevent this complication.

This particular warning ---- scares me the most:

Notice -

[Posted 04/14/2011] 

ISSUE: FDA continues to receive reports of a rare cancer of white blood cells (known as Hepatosplenic T-Cell Lymphoma or HSTCL, primarily in adolescents and young adults being treated for Crohn's disease and ulcerative colitis with medicines known as tumor necrosis factors (TNF) blockers, as well as with azathioprine, and/or mercaptopurine. TNF blockers include infliximab (Remicade), etancercept (Enbrel), adalimumab (Humira), certolizumab pegol (Cimzia) and golimumab (Simponi).

BACKGROUND: HSTCL is an aggressive (fast-growing) cancer and is usually fatal. The majority of cases reported were in patients being treated for Crohn's disease or ulcerative colitis, but also included a patient being treated for psoriasis and two patients being treated for rheumatoid arthritis. FDA is now updating the number of reported cases of HSTCL.
Although most reported cases of HSTCL occurred in patients treated with a combination of medicines known to suppress the immune system, including the TNF blockers, azathioprine, and/or mercaptopurine, there have been cases reported in patients receiving azathioprine or mercaptopurine alone.
  • Educate patients and caregivers about the signs and symptoms of malignancies such as HSTCL so that they are aware of and can seek evaluation and treatment of any signs or symptoms. These may include splenomegaly, hepatomegaly, abdominal pain, persistent fever, night sweats, and weight loss.
  • Monitor for the emergence of malignancies when a patient has been treated with TNF blockers, azathioprine, and/or mercaptopurine.
  • Know that people with rheumatoid arthritis, Crohn's disease, ankylosing spondylitis, psoriatic arthritis and plaque psoriasis may be more likely to develop lymphoma than the general U.S. population. Therefore, it may be difficult to measure the added risk of TNF blockers, azathioprine, and/or meracaptopurine.
 See?  Scary - Right?

What's happening this week ---

Monday night she was in the bathroom ---- going ---- again when Emma came out a bit concerned and told me that Sophie needed me.  Someone is always with Sophie while she is going so I wasn't too too alarmed --- I really just thought Emma wanted it to be my turn.  As it turns out Sophie did need some help.  A lot of help.  The bottom of her colon had actually slipped out. Yes, go back and read that again and as mortified as you may be reading that try to imagine being her mom and trying to figure out what THE HELL to do.  I did what any freaked out mom in a panic would do . . . I SCREAMED FOR JIM TO GET IN HERE NOW!!!!!! 

Poor Sophie --- admittedly I failed big time in the not freaking your kid out in an emergency situation!  We scooped her up and hauled it to the ER at Children's Legacy.  As it turns out this is not THAT uncommon for Crohn's/UC patients but as you can imagine we were totally freaked out.  The condition is called Rectal Prolapse.  This is one of the things no one ever tells you about. 

As of today everything is back in place nice and safe where it belongs but it could continue to happen so surgery is an option that we may be facing sooner rather than later.

JUST NOW ----

Sophie's doctor ordered blood work today and he called us direct from his vacation in Colorado.  Her labs came back and they are worse than they were a week ago so he is VERY concerned.  Right this moment we are waiting to hear from one of his partners at Children's Dallas about admitting Sophie for IV treatment, a blood transfusion and another endoscope procedure to find out why things are getting so much worse. 

And for the record I am scared as hell.




41 comments:

Joanne said...

Oh Laura... I am scared with you. Poor, sweet Sophie. My heart is just aching for you guys right now and I started crying as I read your post. I wish I knew what to say or do. I wish I had some sort of magic to make everything okay.

I'm sorry and it all just sucks so very much. Call me if you need to rant. Anytime.

Love you sista.

Diane D said...

Laura - You are so brave and so is sweet Sophie. Someone will find this and find it helpful.

I am so sorry that you are all dealing with this. I am scared for you.

We love you and are here for you...

Tracy said...

Oh no! Praying and asking for prayers from all the people I know and love. Keep us posted!

(((HUGS and LOVE)))

Alexis Nicole said...

Oh dear friend. There are NO words. I am praying so hard for you and your family.

If there is anything. Anything, you need please let me know.

I will be sharing this on my FB if that's ok. I love u and Sweet Sophie. (((((HUGS))))

Wendy said...

OMGsh. Laura. I'm praying. Praying right now...screaming for answers, comfort, peace, and treatment options that help instead of hurt.

Anything. ANYTHING I can do...I know I'm far...ANYTHING.

My heart is aching right now...please keep us updated.

Haley said...

wow! Sophia is one strong girl. Actually, your whole family is! And you are for being able to post something like this.
I want to share that my neighbor was diagnosed with crohns while he was in high school. before he was super sick, but now he is 22 years old and in remission. the last few years we have been going to the crohns walk in philly to support him.

every thing will turn out for the best, I'm sure!!

Haley <3

Emily B said...

Oh I'm so sorry to hear all of this. I'm going to forward your blog to a good friend of mine who's daughter has chron's. I believe she's found some online support, but doubt it compares to the DOC. I'll be praying for your little one. xoxo

Michelle said...

Oh Laura! I wish there were words I could say or something I could do to make it all better for you and Sophie! I cannot truly imagine being in your shoes right now...I'd be scared too! I hope they are able to figure things out for you all quickly! Sophie sounds like such a strong and brave little girl! Please keep us posted on how she's doing when you have the time...I'll keep saying my prayers and thinking LOTS of positive thoughts for you all!!!

Hallie said...

Laura-- What can I say? What can I do to help? I am so sorry and I wish I could take this all away. I am praying for answers and comfort ... And a million other things. I'm only a phone call or a ping away if you need me. Just to talk. Or listen. Sending you big hugs and wanting you to FEEL that you are not alone. Love you!!

Kelly said...

Oh laura, prayers for you and sweet Sophie! Lots and lots of prayers.....

Holly said...

Oh, Laura. I'm SO sorry for all of you. I can't imagine what I'd do with a prolapsed colon either. : ( You deserve a pass on the freak out. Bless your heart. Sophie does have a big smile on her face-bless her for letting you put her picture on-it's her life, and it's not weird for her. : )
I will ask for prayers for her too-nothing is impossible with God. Praying hard for you guys-can we do anything to help other than look for support for you? sending hugs your way! Holly

Sherry said...

You and your family are very much in my thoughts. I will be keeping Sophie close to my heart. I can feel your fear. My heart is aching for you. ((HUGS))

Sarah said...

Laura-I am so sorry that sophie and your family are going through this. I talked to my good friend from college whom has crohns and asked for advice, he said to just keep pluggin away. For him there were not miracle drugs that worked, no amazing treatments, just time. He said that he had bad years, the ones where others were growing and having a great time were the hardest...but now he is doing awesome. I hope it doesn't get you down that I share this, I am hoping it lets you know that you're doing all you can, you're not giving up and you're keeping positive. Like diabetes this isn't a disease you can control, ugh my heart hurts for you guys. I'll ask a few other friends whose siblings have been dealing with UC/Crohns for years.
Take care Houston family!

Meri said...

I have begun typing 3 times. I don't know how to convey my love for you and your family. My heart is so heavy. How do you type through eyes that sting???? Holy crap they hurt!

I will pray for you all. With all my heart I will. Pray for remission. Pray for calm in the storm. I'm here for you. Cry. Bitch. Moan. Scream. My ears are all yours!

Give sweet Sophie and extra hug from me. Love you!

Kat (in the DOC) said...

My heart hurts for your Sophie and your family. I am SO praying for you all.

Rachael said...

I don't know what to say, except you are in my thoughts and prayers! odd luck with your family and good job on getting it out there, including the not so "glamorous" parts. People need to feel uncomfortable with those things, hoe else would we find a cure. Besides we are not ashamed of everyday life! Blessings to you Laura and family! <3

Leigh said...

Oh Laura! I am just crying for you and sweet Sophie. For one thing, her (and you) having to go through all that in the first place, but also not having the community support. Thank God for the DOC, we may not by the C and UC OC, but we love you and will pray for a cure for that too! If there is anything we can do to spread awareness for that too, we will. Just let us know! Love you and your sweet family! Praying for cures!!

Beth said...

(((hugs))) and prayers from AZ for you all. <3

Reyna said...

Laura. I am so sorry. I have a knot in my throat. I am scared as hell too. I admire your's and Sophie's courage in sharing this story...by making others feel same-same you are helping so many...and educating the rest of us on how serious this condition is. Thank you for that. Please keep us updated on Soph. Love to you and your beautiful family. xo

Beth said...

Prayers for you, sweet Sophie, and your entire family. I admire you for putting it all out there and raising awareness of both UC and T1. For all those that criticize us for making our kids the poster child, when they have a loved one diagnosed, they will finally get it and be thankful we came before them.

Colleen said...

Please continue to teach us more about UC. And know that Sophie will be in my prayers.
Big hug for all of you.

Penny said...

Oh Laura, I am so sorry for sweet Sophie and all of you. You are in my constant prayers and thoughts. And if you help one other person by putting this info out there, then it is good. You are helping others, even as you go through it yourself. Love you honey. Praying.

Maryam said...

Laura, I am just typing through tears, I really feel for you if there is anything i can do please let me know. I can take the kids if you like so you can deal with our sweet sophie. Bianca would love to come see her but i know you have your hands full. Please if i can help by watching the kids, or making a meal so you can just sit by sophie and hold her i can. We are here for you. Maryam , Tony, Sophie and Bianca =)

Roselady said...

Laura, This is so much for one woman (and one little girl) to handle. I will keep your family in our prayers. I know keeping up strength for this situation must be draining. Really, I can't put into words what I'm thinking...I know this must be so hard...You are right to raise awareness, though -- I'm sure there are moms out there that really need to read you and connect.

Lorraine of "This is Caleb..." said...

Thank you, Laura. Thank you for sharing the good, the bad and the ugly. I support you completely that this does more help than hurt.

I am so, so sorry that you and she and you all, are going through this. I'm happy to hear that you seem to have an ace doctor helping you guys. I hope he's able to figure out something that will provide some relief soon and for a while.

Super hugs.

Esther said...

So heartbreaking! I hate that you and Sophie have to deal with this! You are strong and special! (((Hugs!))) And Sophie is so darn cute! Even on the potty!

Nicole said...

I'm so sorry...I'm in tears!! HUGE BIG MONSTROUS HUGS for our dear sweet smiling Sophie and a great big kiss for you!!

LOVE YOU and thinking and praying everything turns out OK :(

Stephanie said...

I am sitting here at breakfast with with my family in tears. Thank you for sharing, Laura. I had no idea the horror that you have been going through. Big hugs to you, my sweet friend

Anna said...

Laura-I'm glad you posted this. I had no idea what you and your dear, sweet little girl have been going through. My heart goes out to you and your family and hope that they can find some answers and some reliable treatment for her soon.

Denise aka 'Mom of Bean' said...

It's so important to let people know how serious Sophie's situation is...that smile would never convince anyone there was anything wrong, much less as serious as it is!
My heart is heavy for you and my prayers will be with you and your family as you seek out information and treatments.
God has a plan; whether we understand or agree, He does. May you feel His arms wrapped around you, giving your strength and peace as He walks with you!!

AjsMommy82 said...

Oh Laura!!! My heart is breaking for Sweet Sophie! And I completely understand how scary this all is for you! The side effects from the medications are horrid and EXACTLY why my sister doesn't want to risk it! She did however get to a point where they weren't and option anymore and we all have put of trust in God that he has a plan for her, whatever that maybe!
HUGS my friend!!! Wish I could be there with you!!!

Amy said...

Oh Laura, I'm so sorry! I know you must be so scared for her. Poor sweet girl. :(

When Emma was about 12 months-old she started having problems with severe chronic watery diarrhea. Labs results showed that she was auto-antibody positive for Crohn's diseas/IBD and I was mortified. (This was only a couple of months after her D diagnosis).
We spent months dealing with unbearable messes (thank god for diapers that helped hold things in about 60% of the time), and doing scopes in both ends and endless labs and filling vials with poo... OMG, good times. She spent many weeks in the hospital refusing to eat because of abdominal pain and had lots of problems with vomiting and anorexia. It was a complete, horrible nightmare.

She did not have any bleeding and her scopes and biopsies never showed any lesions, so the Crohn's diagnosis was never made official. In time things slowly started to resolve and she went into "remission," though she has always had stomach issues and is still monitored closely for IBD.

I know that what you are dealing with is very serious, and that it's much worse than things got with Em, I just wanted you to know that I have been in the poo trenches too. I will keep your sweet girl in my prayers. Hang in there!

Amy said...

That scoop on Sophie's poop was NOT good. Bad poop, happening. I read her story and the only part I laughed out loud at was her saying "doop". Stories about children should be FULL of laughter. This stinks. Something smells rotten. Do you call Sophie 'Squirt'? (you know I am trying to make you laugh . . . right?!)

My prayers are filled with a request for relief from pain and for skilled doctors to help Miss Sophie rest so she can recover. My prayers are for you to feel His arms around you and holding you tight and whispering . . . you are not alone and I will walk this path WITH you.

What you just did by telling Sophie's story is help a mother out there who is terrified of being alone. You just reached out and grabbed her shaking hand, my dear.

For the record? God gave you the strength to be Sophie's Mama. Go kick some ass. <3 you bunches.....

Tracy1918 said...

Oh Laura. There are tears in my eyes as I wrIte this.

First you are an amazing mother. You need to share sohpie's story. I know it will help someone.

This post alone has touched my heart. I will faithfully pray for you and Sophie.

Kimberly, Meal Mommy said...

Laura...I can't even find words right now. Please, please, please let me know if you need anything at all. I know Houston is far but whatever you need...at all. I burst into tears reading about poor Sophie in the bathroom and what fear you must have felt. Stay strong and positive...my girls and I are sending tons of prayers your way!!!

Kimberly, Meal Mommy

Amanda said...

Laura, I am so sorry to hear this news about Sophie. I will pray and pray for you and your family.

WendyP said...

Laura, I cried for you and Sophie last night reading this. Why does life ask so much from us?? It's so amazing how these kids just keep on going though. She is precious. I wish there was something we could do. I think you are definitely doing the right thing by putting it out there and trying to be a support to others. You are both brave and strong. If we can help, then ask. Thinking of all of you.

NikDuck said...

Oh Laura, this has me in tears all that your sweet girl has to go through and your family as well. I am so sorry you are at this point. I am praying and thinking of you and Sophie today. As a fellow Mom that freaks out big time, I am praying you will have peace and be comforted today. Hugs to you all.

Jane O'Leary said...

Prayers and hugs for Sophie, you and your whole family. I'm so sorry that life has thrown yet another huge curve ball your way. I follow your blog all the time, I'm Shannon/Joshua's mom and I do find your blog helps us all so much. What a brave and wonderful little girl Sophie is, must be cause she has such a wonderful family. Please let Sophie know that we are all praying they find a treatment that will help all the tummy troubles for good. Hugs

k2 said...

Laura -
I am praying for Sophie, for you and the whole family and sending positive thought & vibes as well!
I am thinking of you all and if there's anything you need, please don't hesitate to ask!!!
HUGS
Kelly K

Lora said...

Oh dear Laura. My heart is breaking for you and Sophie. I don't even think I have the words to tell you how much you guys are loves and how many prayers are being sent your way.