Sunday, November 16, 2014

Ulcerative Colitis

*Warning:  This is long and has literal "potty" talk, not the 4 letter variety though!

In July, Tanner started complaining of stomach aches and spending a lot of time in the bathroom.  I told him its probably something he is eating, and we should keep a food diary.  Well, after a week of this, I realized everything he ate was not going through him properly.  I made a doctor's appointment, which was about a week out.  By the time we had the doctors appointment, Tanner was waking up at night needing to go to the bathroom and often there was blood involved.  The doctor took a slew of blood and stool tests.  She said that the stool tests were cultures and take about 2 weeks to grow.  In the meantime, "try to keep him hydrated and avoid fibrous foods.  Give him Gatorade and bananas."  

So we did that.  I put him on a "low residue diet" which is supposed to stop diarrhea.  Lots of white, bland foods, potatoes, starches, etc.  He was miserable.  Pale, circles around the eyes, no energy, and still lots of diarrhea and blood.  I took him off that diet when I realized it was only making things worst, and went to the extreme opposite route, a complete raw vegan diet.  Within a few days, his energy was up, his color was so much better, and the blood was gone.  Diarrhea was still constant, but at least other things were improving.  We did this for about a week and Tanner HATED it.  Every meal was a battle.  I told him we were going to stick to it until we got all tests results  back.  We slowly started adding other foods back in and would wait to see how his symptoms were affected.  Dairy, sweeteners, and white flour caused bleeding so those were out for good.  But aside from that, I became a little less strict with his diet and mealtimes were more pleasant.  

The cultures finally came back and the doctor said the stools showed a bacterial infection and Tanner should be good as new after a quick round of antibiotics.  She warned that the antibiotics may cause diarrhea, so wait a few days after he is done to see if symptoms are gone.  We took the antibiotics.  And waited a few days.  Still diarrhea.  So, I took him back to the doc and was instantly referred to a pediatric GI doctor.  He asked lots more detailed questions, and took more stool samples and blood tests.  He also found the same bacteria in the stool so we went back on a longer course of antibiotics.  So, we did it again and waited a few days after the antibiotics to see if symptoms would go away.  No.  

Back to the GI specialist.  This time, more blood tests taken, and a MRI and colonoscopy were scheduled.  The doctor kept saying he wanted to rule out Colitis.  By this time, I had researched all of Tanner's symptoms and what the test results were saying and everything was consistent with Ulcerative Colitis.  I knew that is what he had, even though the doctor was wanting to rule it out.

So, on October 30, Tanner went in for his colonsocopy.  The doctor also did a endoscopy to make sure it wasn't Crohns.  Tanner was so nervous to be put to sleep.  But he did great!
Here is all hooked up and waiting to have a little nap...


Here he is sleeping away.  This is when the doctor came in to tell me that he did have Ulcerative Colitis.  And not a mild case.  The majority of his colon is affected.  I was so sad to see the pictures of his colon compared to what a healthy colon looks like.  I realized at this point that we have a long road of healing ahead of us.

Ulcerative Colitis is an auto-immune disease that attacks healthy cells in your colon, causing inflammation, which causes ulcers, malabsorption problems, etc.  They don't know why people get it, and there is no medical cure, aside from having your colon removed and wearing a colostomy bag for the remainder of your lifetime.  It is not something you grow out of, but something you learn to manage for a lifetime.  It has nothing to do with the bacterial infection Tanner had, although I think it may have set off this disease that was before dormant.  Many of the drugs used to treat this condition have many bad side effects and I am not interested in making Tanner deal with that for the rest of his life.

I once heard someone say that when you are given 2 options from the medical world, there is always a third option, nutrition.  I had already seen what a pure raw diet had done for Tanner.  I also saw how deprived he felt on it.  I spent a lot of time online researching UC and I found a lot of people struggling, not being able to do what they want with their lives because of their disease.  I spent some time feeling hopeless, frustrated, and excessively worried about Tanner's future.  I had been praying through this whole ordeal, but more kind of like, Ok, Lord, you do your thing to heal Tanner and I'll do what I can do.  It wasn't until I went to Him and humbled myself, and realized I CAN'T do this alone, but I know with Him anything was possible.  This was a powerful moment and almost instantaneously I did not feel so overwhelmed and alone in this.  I felt my Savior walking beside me and guiding me.  I saw a silver lining to all this and my hopelessness was replaced with a feeling of peace.  I know it will be a long journey and a there will be speed bumps along the way, but I can do it because my Savior is with me to guide me and show me the way.

With this new feeling of hope, I went back to my research, instead of finding stories of struggle and despair, I kept coming across the Specific Carbohydrate Diet.  It is a diet that has been used for decades.  A lady who has a daughter with UC wrote a book called Breaking the Vicious Cycle, introducing and explaining how this diet helps and works.  I ordered it and read it within a day.  It all made sense to me.  In all my research, I had not run into this book or diet until I had humbled myself and allowed the Lord to guide me.  I really think this is an answer to prayer.  The diet is strict, but much more fulfilling to a growing 11 year old boy than a completely raw diet.  It restricts dairy, any sweeteners aside from honey, and all starches (potatoes, corn, etc) and grains (wheat, oats, etc).  That is a lot of food we use everyday in our family's diet.  Everything needs to be homemade as there are so many fillers in all processed foods that may not even be on the label.  When I decided this is what we were going to do, I purged my cupboards... 
Luckily there was a Boy Scout Food Drive going on in front of Staters that weekend, so they were happy to take all my non-SCD food!

Tanner has been on the diet for a little over 2 weeks now.  He has a very good attitude about it and does not feel too deprived.  He is not waking up at night anymore!  Hooray!  His diarrhea is still active and he still gets tummy aches, but not nearly as frequent.  We still follow what the doctor says.  Tanner is on medication, but it is not the scary steroids.  I have hope that we can control symptoms with the diet to stay far away from those.  His blood tests show his iron levels dropping (which is frustrating because everyday:  he drinks a big glass of freshly juiced greens, drinks a green smoothie, and eats red meat!), so he is doing supplements as the doctor ordered.  Like I said, it will be a long journey to heal my baby, but I have hope that it will happen as we rely on the Lord to guide us through these rough waters ahead!

So, if you see my house a mess, Charity's hair not combed, and maybe we are not doing quite as many hands on things for school-it's because I have taken up permanent residence in my kitchen!  I am hoping following the SCDiet will get easier with time and experience!

1 comment:

Ruth said...

I love this little guy so much and pray every day for his symptoms to get better. Love, Grandma