A True Warrior

Meet Tanner, the bravest boy I know, a true Warrior.  He has struggled with a severe case of Ulcerative Colitis for 3 years now, since the age of 11.  Ulcerative colitis is a disease that affects the colon, or large intestine.  The immune system basically attacks this organ, causing ulcers, bleeding, and mucus.  As you can imagine, this in turn causes a lot of pain and diarrhea, multiple times a day, around the clock. 

When he was first diagnosed, thanks to a very strict diet, The Specific Carbohydrate Diet, and a mild anti-inflammatory medicine, Tanner did very well.  For the first year, he would have mild flare ups of the disease, but we could always pinpoint it to either a cold or other illness he caught, or to a new food he tried on the diet.  But, for the most part, we felt that as long as we were true to the diet- which we were- we had a good handle on the disease.  He was even able to go away to boy scout camp during this time, as long as he ate the food I sent with him, he was good!

Then, about 2 years ago, he started flaring up, A LOT!  We adjusted his diet, removing foods like nightshade vegetables and nuts that typically can cause problems.  That helped, a little.  We tried a bone broth fast, a juicing cleanse, and an elemental diet.  None of these did a thing.  We visited an expensive functional medicine doctor who added a whole smorgasbord of supplements to our routine.  After months of taking these supplements, and not noticing any improvements, we decided it was just making expensive poop!  Tanner was so ill at this point, he hardly left the house and was wasting away.  I do believe his excellent nutrition and lifestyle, and close observation by his GI, kept him out of the hospital.  He did have a few trips to the Pediatric Observation Unit to get IV hydration and Iron infusions, but thankfully we never were admitted to the hospital. 

As much as I didn’t want to do it, we had to start more intense medications. Aside from going to Grandmas, and the neighbor’s house to play once in awhile, Tanner spent a few months at home, tied to the bathroom.  I know he needed more to control this disease.  After counseling with his GI and few more tests showing that his disease had indeed gotten worse, we chose to start more intense medications.  He tried 3 that did NOTHING!  One was a pill (Uceris), one was an IV infusion every few weeks (Remicade), and one was a shot I had to give him at home (Humira).  Nothing was working for him even after giving each medication plenty of time to work.  Finally, we went for Prednisone, a steroid that has horrible side effects. Both the doctor and I tried putting this one off as long as possible.  But, it did help and Tanner was able to start living a somewhat normal life again. At this point we were referred to a surgeon, but wanted to try all we could before taking that permanent, life altering step.  So, Tanner went on a newer medication, he was only the second pediatric patient in our area to use it, another IV Infusion called Entyvio.  He got this every 6 weeks.  This medication takes a long time to work so the idea was to get him off of the steroid as the Entyvio started working.  We were able to wean him to a fairly low dose of Prednisone but never all the way off.  This combination of Entyvio and Prednisone managed about 50% of his symptoms, but never got the inflammation under control. He was on this combination for one year. 

In the meantime, while trying to find a good fit of medication, diet, and supplements, Tanner’s body has been falling apart.  His joints ache all the time, he deals with chronic fatigue, has a hard time concentrating, has restless leg syndrome, deals with frequent headaches, has no ability to fight off the simplest colds,  has been diagnosed with chronic failure to grow, and he was diagnosed with severe osteopenia, a precurser to osteoporosis-this means his bones are very brittle, which is very concerning when this is the age that you should be building bone density.  All of these symptoms are typical for people suffering with severe Ulcerative Colitis.  At this age when kids should be full of energy and growing like weeds, Tanner’s body has been fighting off inflammation not capable of doing much else.  We knew something had to change drastically.  So after counseling again with the GI, the surgeon, each other, and most importantly our Father in Heaven, we have decided that surgery is the best option to get Tanner back into full health. 

The surgery, is actually a three part surgery.  The first part, which will take place on Dec 18, will remove Tanner’s colon.  We believe, as does Tanner’s medical team, that removing this organ -the cause of all the inflammation -will help his body to function properly instead of constantly fighting off inflammation.  His body should be able to use the nutrition he eats to grow, provide energy, build strong bones, do all the things it should have been doing all along!  Colons are necessary organs, so he will need a device to take the place of it.  It will be on the outside of his body, on his abdomen, connected to his small intestines.  It’s called an ostomy and will take some getting used to.   But, from the research we have done, which has been extensive, most people say dealing with that is nothing compared to what they have gone through with Ulcerative Colitis.  Within a few weeks of surgery, they have their life back and feel better than they had in years.  We are praying for the same results for Tanner!  My favorite part about this is that Tanner should be med free after surgery (no more nasty side effects!) and Tanner’s favorite part is that he should be able to tolerate a lot more food once his colon is gone.  

After Tanner starts thriving again, we have the option to go back in and have the ostomy removed, and a “colon” created inside his body from his small intestines.  This will take 2 surgeries and can be harder to recover from.  We are not planning for these yet, as for now we are just focused on getting Tanner strong, healthy, and thriving again.  We are grateful that this is a possibility though and will certainly consider it in the future. 

At the beginning of this post, I stated that Tanner was a true Warrior.  Through all this, Tanner continues to take a heavy school load and get straight A’s at his online academy, wake up every morning ready to go to seminary at 6:15am, and do what is asked of him at home and at church.  He suffers and has sacrificed much, but he doesn’t let that define him.  He bore his testimony at church once and said “trials are really a blessing in disguise”.  This is true!  Although I would give anything to take this trial from Tanner, I know it has made him spiritually stronger and given him unfaltering diligence, compassion, and perseverance.  Tanner has felt the power of the priesthood in his life as he has felt peace in his hardest times through priesthood blessings.   Tanner has stated that “Heavenly Father is only a prayer away.”  We have all come to rely on prayer with a greater fervency than before this trial.  We know Heavenly Father is watching over Tanner and has a wondrous plan in store for him.  These trials are part of Tanner’s journey here on the Earth and Tanner will take the good from them and conquer the bad, that‘s what Warriors do!