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:
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.
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.