Prednisone or Not?

My son Eddie is 19 diagnosed with Crohn’s at 13. A year after a detached retina was repaired putting heavy silicone in his right eye.

My son enjoys science fiction, navigation sites like Google maps, and playing the piano.

Any advice on the scd diet? How to build more calories, when he won’t be sensitive to eggs, yogurt? Considering putting bk on Prednisone to gain weight for 2 weeks???
My son Eddie was diagnosed at 13. Treated with Prednisone then Apriso for a yr. At 14 Dr . Fragilis infection in large bowel with Genova Diagnostics testing. After paromyacin treatment was able to get off Apriso medication. Had a flair in 2015. Found h. Pylori Treated with antibiotics & steroids.
So treated with lots of visbiome for yeast overgrowth. He was remission the last 6 yrs. Now he’s been on and off flaring since July. His functional medicine Dr thought he has an infection in small bowel. His gi Dr wants to do an endoscopy/colonoscopy since he hasn’t had one since 2015. So I started him on scd diet to kill off bacteria in the small bowel. He’s so skinny. He’s lost over 20 pounds the last 4 months. 3 weeks in diet and his bowels are only partially formed. He seems to be allergic or sensitive to eggs, grape juice, and homemade yogurt. So his diet is pretty basic and not substantial right now as I haven’t been able to feed him much more than chicken soup, fish, hamburger squash and carrots. Feeling a little sad that he’s getting so skinny. Feeling desperate to put him bk on Prednisone just so get can eat better without a reaction to the food. Only one bowel movement a day but mostly mushy. Are the poops supposed to be mushy when the food is mostly pureed? No blood so far since 3 weeks ago when I started it. Currently not on anything but just ordered scd legal probiotics, multivitamin, and cod liver oil.

Really, any advice would be appreciated. I hate to put him thru another procedure and know it’s hard on the body going in and off Prednisone but I’m getting worried.

written by Juliet H
posted in the colitis venting area (also Crohn’s vents too)


2 thoughts on “Prednisone or Not?”

  1. Hi Juliet,
    I relate to the concern you have for your child. I reached this page and felt relieved there may be someone else out there to help or even just listen.
    My daughter is now 8 diagnosed at 6. She went through the list of medications and we have finally landed on Vedolizumab infusions and it has put her into remission for the last year or so.. Now she has gained weight as her diet is less restrictive. All the best for you and your son x

  2. Hi Juliet,

    This was really tuff to post up your story, and really tuff to be reading it again as it must be so hard as a parent to see your child going through. I think I would recommend to talk to the gastroenterologist about your concerns. Assuming you trust the GI doctor, and the Gastro doctor has experience treating UC patients, it might be worth speaking with the doctor about options or next steps here. And, it is for sure a reality that some GI doctors have very little if any experience treating ulcerative colitis patients. You can easily ask the doctor that exact question. Me not knowing exactly where you are located and the medical system you are dealing with makes it hard, but perhaps if you are not satisified with your GI doctor that he is seeing currently, maybe there is another GI doctor that might be a better fit and have some new treatment ideas that may be more beneficial. Just an idea, and I hope things can get better for you and your son soon,

    Adam

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