15 year old boy with Crohn's Disease

[bruffner]

My son is a top baseball pitcher with D-1 schools already looking at him after his Freshman year. He was training 4-5 days a week getting ready for upcoming baseball season. On Tuesday, January 10th, 2012 my 15 year old son was taken to hospital with an suspected appendicitis. He spent night in hospital on anti-biotics after an untrasound suspected appendicitis. Next day they talked about doing another ultrasound but opted to not do it. He didn't have all the symptoms as he did not have a fever but did have pain in abdomin. He felt better next day with anti-biotics. Surgeons opted to go in for surgery laproscopically without a CT scan. They removed his appendix which later was found to be fine and didn't need to come out. While in they found ileum to be inflamed. Peds GI doctor said lets wait for a couple weeks and then do a colonoscopy to check things out. They released him from hospital on Friday, January 13th and following Tuesday he was back in hospital with 102 fever, throwing up and severe pain in abdomin. Colonoscopy and endoscopy with biopsys showed Crohn's disease. He is put on 60 mg of prednisone and 20 mg of prilosec and released on Friday. I take him to a naturalpath, oriental medicine and accupuncturist who is an MD and she tests him and says, "I believe he has an infection that is causing the Crohn's response" and puts him on some suppliments. A few days go by and worse pain and back into hospital where they find an abcess larger then a grapefruit and insert a drain in side of butt cheek. Another week goes by on anti-biotics and they release him to home with IV anti-biotics via direct line. A few days later and back to hospital again. More abcesses and abdomin completely inflamed. He has a drain put in again. More anti-biotics non-stop and had a drain through nose into stomach for a 5 days. He is currently in hospital almost 3 weeks. They gave him a dose of Remecade and lowering his steroids amount. After many CT scans and dye into drain they believe their is a fisture (leaking into abdominal cavity) in the terminal ileum. I am still wondering if the surgeons nicked the terminal ileum while doing the appendectomy that wasn't necessary and caused the leak? In any case I believe the unecessarry surgury caused the Crohn's or infection to go crazy. I am reading everything, talking with people and trying to get on top of this to be able to help my son. The Ped's Dr's seem like idiots to me as they don't believe diet has any effect on Crohn's. I want my son to go on SCD but his bio mom is too lazy to do it and uses the excuse the doctors don't say he need it.

Any help would be appreciated.

 

[mickey]

It is so frustrating to deal with docs, when they are still learning about diseases and may not have (some of them) enough exposure to the disease to accurately figure out the problem. I was recently diagnosed with a stomach infection (long story, but exposure to high levels of mold) and a Chinese doc friend suggested I take a capsule of pure garlic each day. It is a natural antibiotic. First day I felt inflammation go down and bad pain subsided. I have been taking over a week. I also went on very good probiotics. I could not go back on antibiotics because that (Cipro) started a downward spiral of stomach health for me 6 weeks back. Your son's body is reacting to something, and it will be difficult to track, since he is having such a reaction. Keep looking at what he is eating and drinking (make sure only healthy pure things), to keep inflammation down as you try to figure out his trouble. Good luck to you. It is a difficult journey.

 

[DustyKat]

Hi bruffner and :welcome:

I am so sorry to hear about your boy. :hug:

My personal opinion about diet is that it doesn't cause Crohn's but I do believe that it does play a role in maintaining wellness when remission and alleviating symptoms when flaring. Many doctors say the same, diet has no role but if they were living it I well imagine they would think very differently. Many here have had success with SCD, have a look at the look at the Diet forum...

http://www.crohnsforum.com/forumdisplay.php?f=17

To be honest, I don't think the surgery had anything to do with the course your son Crohn's has taken, either in it's severity or the complications. The area of bowel where his disease is located is known for developing the complications of fistulas and abscesses and the fact that he had such severe symptoms straight up was probably an indication that these things were already happening, just not obvious at the time. The fact that the abscess kept reforming after the drain was taken out would have been a sign that it was attached to a fistula. My son went through the same thing this time last year. Just be aware that the biologics (Remicade) are not renowned for healing fistula's particularly well when they originate in the terminal ileum. I certainly hope they work in your son's case but just prepare yourself that he will most likely require surgery if they do fail.

Because he has Ileal Crohn's please ensure they keep an eye on his blood levels of B12, Iron Stores, Folate and Vitamin D.

Things will get better once the infection and inflammation is brought under control. Both of my children required surgery but they have been in remission since those surgeries and living life to the full.

If you have any questions please don't hesitate to ask! Good luck and welcome aboard!

Dusty. xxxxxxxx

 

[dannysmom]

I think that there just is not enough studies to support that any specific diet will help with Crohn's disease, other than enteral nutrition. I tried SCD with my son for 5 weeks, it did nothing, and is not that easy ... but I do not regret trying it. We also tried lots of supplements at the recommendation of a "holistic" MD. These did not help either ... spent a lot of money though. The more I read about different diets on the internet, the more I see them contradict eachother.
I hope they are able to help your son soon!

 

[handle]

Hi Bruffner,
No-one who has ever been in a Crohns flare, or had to care for a loved one through a flare, would rely on garlic or herbs or some kind of 'healthy' diet as the mainstay of treatment. During an acute flare-up the patient needs a high protein, low fiber diet with full nutritional complement. It may mean having a liquid diet. The patient also needs proper medication, such as Remicade or similar.
Once the flare is under control then alternative treatments can be tried if that is the patient's wish.
Babies, healthy adults, and people on whole food diets can and do get Crohn's Disease. People eating rubbish diets are not statistically more likely to get I.B.D., though they may get diabetes or heart disease.
After diagnosis, diet is both important, and highly individual.

Good luck to you and your son. Your frustration is understandable.