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

Adam iHaveUC guy

Adam Scheuer, founder of iHaveUC.com

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




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5 Responses to Concerned Mother with Teenager Just Diagnosed

  1. Judy February 25, 2014 at 9:19 am #

    I’m so sorry that your son is going through this. I have a grandson who is 18 . He just started his journey with UC in November. When he finally told his mother about the bloody diarrhea he was in bad shape. He spent 4 days in the hospital with steroids going in his IV. The lady 3 months have been a uphill climb.
    His Dr insists that diet has nothing to do with UC. So he is now taking 18 pills a day and doing the enema every night.
    Nothing much changed. Some days he is so tired he just wants to stay in bed but he is a senior in high school so drags himself to classes. Now he is trying out for track,worrying about if he can do it with the bathroom runs and the fatigue.
    He started the diet Sunday and going to the store with his mother to learn about what’s in the food he eats. (He has never been interested in this before). We are so proud of him. The entire family is going to eat the same diet and go on this journey with him.
    I just wanted to share his story with you and maybe your son will know that he is not alone. It’s a unfair disease that should not slow our young people down. After doing extensive reading I believe this diet is the way to go.

    Good luck and give your son my best.

    • Bryan C
      Bryan Cook March 2, 2014 at 9:29 am #

      Mom,

      I was diagnosed 16 years ago with UC had my colon removed 6 months ago and had Jpouch sugery and my third and hopefully final surgery. I can tell you the fatigue and weakness is from the UC . More then likely when he is flaring up everything he is eating and drinking is coming right out. The meds docs put you on control it and if he is that bad I would recommending not taking him off any of the meds the docs give him. If it gets to the point where he just isn’t getting better they will prolly put him on prednisone. Prednisone is horrible. Ask your GI about remicade or humara they give it to you through IV and it seems to help a lot of people and put them in remission. I don’t thing about this disease is EVERYONE is different. IF you have any questions you can send me a email brcook2323@yahoo.com and Adam the guy who runs this site is a good guy and probably answer some questions. Hang in there.

    • mom of teenage son March 6, 2014 at 1:34 pm #

      Miss Judy-
      I am encouraged that your grandson is going to try the diet. I also want to give an update on my original post. I took my son to the GI Nutritionist. She stated repeatedly that the SCD diet has no scientific evidence of improving colitis or chrons but then followed up with saying that many of her chrons patients would use the SCD diet to obtain remission. Interesting if there is no evidence??? In any case my son had a state qualifying wrestling competition starting the afternoon after seeing the nutritionist. She recommended that I take him off the diet – that he wasn’t getting enough nutrition. Music to my 16 year olds ears but disheartening for me as he had zero symptoms other than fatigue. We decided to introduce one complex carb into his diet which has led to him eating everything – except milk. He had horrible abdominal cramping and loose stools after having ice cream. Other than that he eats a regular diet but we still do not eat refined sugars, processed meats, or refined flour. The main change is he has a sandwich with whole wheat bread (no sugar) and he will occasionally have a bowl of rice with dinner and has oatmeal in the mornings. On the wrestling side of things he qualified for State beating the number 2 ranked kid in the state in a very emotional match and went on to place 4th at the State Wrestling tournament. He says he feels great! First we have heard of that in over 8 months!!! We pray that he will continue to overcome this disease and be able to be an encourager to others. This diet does work and I could cry thinking about what it did for my son along with a lot of prayers and research. Keep researching and be encouraged – I look forward to reading how your grandson is doing…

  2. Julia March 5, 2014 at 8:04 pm #

    My son 16 was just diagnosed with IBD RA, it started with excruciating pain in his thighs. After x-rays and MRI’s and colonoscopy and endoscope this is what they diagnosed. The rheumatologist and GI have recommended starting him on Remicade and we have an appointment on Monday to discuss etc,
    Trying to do as much research as possible before then and pretty scared after reading the side effects from remicade :(

    • mom of teenage son March 6, 2014 at 1:45 pm #

      Hi Julia-
      I am so sorry to hear about your son. I encourage you to continue researching on his behalf as we are the best advocates for our children. I believe that the SCD diet cured my son of his symptoms and has fully placed him in remission. I know that everyone is different but I, like you, just happened upon this site and ordered the book. Since the day we got it our whole family got behind the healing process and it has been a very emotional and sleepless experience. I constantly was looking for what else I could be doing for him. Since stress seemed to be a key contributor in flare ups we have worked on helping him cope with highschool stresses, grades, athletics, and his illness with a lot of prayers. An encouraging video for us was a video by Mandisa called overcomer. I encourage you to watch it and wherever this journey leads you and your family I believe we can all be “Overcomers” My best to you and I will be praying for your son and the doctors that he comes into contact with. Hang in there mom!

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