Concerned Mother with Teenager Just Diagnosed

Intro:

I am a mother of four children. Don’t fully trust doctors but do my own research.

My 16 year old son was diagnosed with UC in October

He is a wrestler and in a rigorous academic program. After diagnosis he was placed on Apriso, an enema and Prilosec. After 6 weeks he was placed on enema steroids and to continue the Apriso, along with Flagyl. My concerns were he did not change in any symptoms. Still was having multiple (5-6) BM’s a day and all with blood and mucous.

I found this site in January and ordered the book, “Breaking the Vicious Cycle.” On January 7th I started him on the SCD diet within a week he was having 2-3 BM’s and much less blood. He was continuing to wrestle and became 3rd in the state.

After the 2nd week on the diet he got very sick. Extreme joint pain, headache, and fever. I thought he had the flu but maybe die off from the SCD diet. After week 2 around the 20th of January he was having 2 BM’s a day and absent of any blood. He is still fatigued and it greatly affects his wrestling. Had to injury forfeit at a tournament after losing in the semi finals and has taken the last two weeks off to get ready for the State Qualifier. He is not on any meds. Not per doctor recommendation. I took him off to see if there were side affects causing his fatigue and dry mouth. He has been off all meds except for vitamins B12, Vitamin D, iron, probiotic, and natural anti inflammatory. He is still greatly fatigued. Feels worse now absent of symptoms than while having 5-6 BMs a day.

How are any of you overcoming the fatigue and do you think the absence of certain carbs could be the cause. He looks weak, loss of muscle mass and I am concerned he is not getting adequate nutrition. I am taking him to a GI nutritionist this week. Worried that he may not fully recover and concerned for his emotional well being.

written by a UC’ers Mom

submitted in the colitis venting area

Hey Mom,

I’m sure it’s super tough for you to see the changes in your son’s physical and mental health right before your eyes, and most certainly its got to be even harder for him.  But I’m happy to hear that you are taking control of things and doing your own research.

I think its a great idea that you are seeing  a nutritionist, hopefully this person has some experience with helping people with IBD and Ulcerative Colitis because that changes things in many ways, especially if your son decides to continue using the SCD diet to manage symptoms.

From my perspective, the fatigue you mention is not all too uncommon.  I wish it was, but it is actually something many people go through and live with for a short amount of time.  I think it has to do with a combination of factors:

1. Symptoms still not being completely resolved yet (blood loss, cramping, loose stools etc…)
2. Getting used to a major diet change which has much less carbs than I’m sure your son is used to in his “old” diet

Those two points are biggies, and I’d be shocked if your son who is an athlete didn’t notice changes in his athletic abilities during this transition time.  There are several other stories on here from UC’ers who are athletes from professional bike riders, to baseball players, you name it who have all gone through similar tuff times.

For me, like many others, it took time to feel normal with a normal energy level again.  Same deal goes with gaining back weight that was lost from either the symptoms or the lower carb diet.  But, and let me repeat again…BUT, it does get better, and I am now back to a pre-diagnosis weight once again.  It took time, well over a year for me, but it was a long slow recovery in terms of the weight gain.  The fatigue resolved itself quicker.  I think the best thing for me has been the increase in high quality protein into my diet, and that may be helpful for your son as well.  Chicken, fish, and other lean meats can work wonders.

I wish you and especially your son the best, and maybe you will learn some more thinking on this from some of the awesome commenters and users of this site below!

Thanks for sharing,

Adam Scheuer