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17-Year-Old Son Newly Diagnosed

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Ulcerative Colitis
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Posted 8/24/2013 3:04 AM (GMT 0)
Hello all -

It's been a shocking week. Last Thursday my teenage son became terribly ill: vomiting, fever, diarrhea. Continued relentlessly through the weekend. ER discharged him Sunday morning with "stomach flu". We returned Sunday afternoon and he was admitted to hospital. CT w/ contrast showed inflammation. Monday colonoscopy revealed his entire colon was affected; surgeon said UC. More tests all week while he received IV steroids, antibiotics, pain meds, saline, alternating Zofran/Phenergan (I'm probably leaving something out).

He had 11 IVs placed due to collapsing veins. Yesterday he received first IV infusion of Remicaid. He experienced sudden pain in both legs during infusion but otherwise okay. We brought him home this evening.

I am utterly bewildered and overwhelmed by all of this. He is - or was, I should say - a strong healthy athletic kid who'd barely been sick more than a day or two in his life. Looking back, I now can see a pattern of more stomach issues (mostly short bouts of diarrhea) the past few months, but nothing seemed serious in any way.

I am going to need some serious help navigating all of this, and I am so glad and relieved to have found this forum. In advance, I thank you all.

Karen

Post Edited (Bella'smom) : 8/25/2013 12:53:17 PM (GMT-6)

Posted 8/24/2013 3:10 AM (GMT 0)
Karen,

welcome in this forum although I don't wish this on anybody.

I hope the Remicade will help him. It brought me relief right on day two but everyone reacts different to it.

Yes this disease is a shock. Everything changes. It is important that he sticks to his medical treatment. If he wants he can do some alternative changes too, like diet changes. It helps some. This forum folk has some great advise!

All the best to you and your son!
Posted 8/24/2013 3:48 AM (GMT 0)
Karen,
Your post made me cry....Our family too went through similar situation 2 yrs back when UC hit my daughter.

We were so ignorant about this disease when she got diagnosed. We followed what her then GI suggested- just take medicine and no food restriction. But soon her symptoms got worse and he pushed the next level meds. At that point we did research and figured out food plays a major role once a person developed UC. We put her in Specific carbohydrate diet.And slowly symptoms improved and what brought her into remission is the home fecal transplant we did for her C.diff infection.
I am just sharing my journey, to give you an idea that sometimes we have to incorporate some alternatives along with medication to attain remission.
Check into most popular anti-inflammatory diets Paleo, SCD and GAPS. If it is hard to follow, avoid wheat, sugar,sugary drinks, dairy and processed foods for sometime. Give him lots of homemade chicken broth. If interested ,there are lots of blogs regarding recipe's for all these diets.
We were told that it's very important to get the initial flare into remission asap and to keep that remission as much as possible. Young people recover fast esp when we parents are there to care and guide them. Stay strong..
Prayers and best wishes...
Posted 8/24/2013 2:46 PM (GMT 0)
Thank you both for the encouragement. He's barely able to tolerate broth, jello, scrambled eggs and the like. We're telling him the dietary changes are about saving his colon, and aren't necessarily permanent.
But he's feeling too bad to want pizza or nachos anyway.

I am jokingly referring to his food list as "your old-man diet" - so at least we can have a little humor.

I've been reading about slippery elm bark. Think I will try that soon.

No C.diff at present, thank God.
Posted 8/24/2013 3:46 PM (GMT 0)
Bloom93, I am so sorry that your daughter is going through this. How awful that her doctor didn't prescribe diet modification.

After my son's colonoscopy the surgeon showed us the photos and how extensive the disease is. Now, when I am considering what to feed him, all I can think of is how NOT to hurt that poor colon!
Posted 8/25/2013 4:11 AM (GMT 0)
Breaking The Vicious Cycle by Elaine Gottschall is the authority on SCD eating. There are recipies included. Been on it almost 2 months and it made a huge difference for me. Only one way to know if it will help your son...worth doing anyway as its good for your health. I hope he feels better soon.
Posted 8/25/2013 6:54 AM (GMT 0)
Hi Karen,
I read your post and so sorry your son has to go through this at any age! I was diagnosed with UC at the age of 16 and it was absolute horror! At 16 being in HS and in sports I felt horrible all the time often keeping an eye out for the closes restroom, not eating to avoid having diarrhea... Was on medication all the time and as years passed it seemed to get worse. In and out of hospitals- my dad and brother were also diagnosed with it as well (my brother also at a teenager).well long story short now at the age if 37-- 3 years ago I decided to start taking probiotics (Phillips Colon Health) and since then I have not had ONE flare up !! I take a pill every day and have not had any diarrhea or bleeding since! I told my brother about this he decided to give it a go and also had the same result. He recently went to have a colonoscopy and his GI Dr said he had no trace of UC.. I honestly believe this probiotic saved me.. I haven't taken any medication in these 3 years I went from having flare ups 1-2 a month to none. Maybe you can give it a try!!!
Posted 8/25/2013 6:38 PM (GMT 0)
summer4: so you're saying you've ceased all meds and all of your symptoms are gone because you take probiotics every morning?
Posted 8/25/2013 7:26 PM (GMT 0)
Yes.. Amazing right and I was pretty bad. I rarely get any firm of diarrhea and haven't taken asacol for over 3 years - those were pretty pricy for me $200 a bottle :/ I haven't use anything other than probiotics since June 2010. I really don't watch my diet either except for milk. But my brother who also started at 18 yrs now 35 started taking them and his GI asked if he was sure he ever had UC.. Probiotics can't harm you so why not try them.. I have read other post w others saying probiotics have helped them as well...
Posted 8/25/2013 8:35 PM (GMT 0)
Small amounts of poached chicken today! For the veterans out there, we've been feeding him SMALL portions of jello, vanilla pudding, rice, mashed potatoes, soft-scrambled eggs, barely-toasted white bread w/ tiny amt of butter. He absolutely refuses to eat any more chicken broth/soup. Ginger ale, lactose-free milk, Breeze, and a blueberry kefir probiotic drink.

Shortly after the scrambled eggs (Friday) we were back in the hospital w/ severe pain and nausea. He wasn't in pain when originally discharged, so no pain meds prescribed. Since the egg incident we've added Zofran (dissolves under the tongue) and hydrocone as needed. Both have helped greatly, and of course no more eggs.

Also, blood work on the return trip revealed potassium level 2.8, so he's also taking 10MEQ ER potassium, 2 x day for five days.

Food suggestions welcome; he's starting to feel the absence of his favorites.

His last dose of solu-medrol was on Thursday in the hospital, via IV, the day after his first Remicade infusion.
Reading through the forum I'm seeing many remarks about tapering off steroids gradually. But maybe tapering isn't called for with Remicade?

Thanks for the support!

Post Edited (Bella'smom) : 8/25/2013 2:54:32 PM (GMT-6)

Posted 8/25/2013 9:28 PM (GMT 0)
Bananas. Also with the chicken, add some plain rice with cooked, soft baby carrots.
Posted 8/25/2013 9:31 PM (GMT 0)
IV solumedrol is different from oral Pred, that's why no taper. Not related to remicaid at all.
Posted 8/25/2013 11:41 PM (GMT 0)
He will love the carrots and bananas, thanks. And thanks for the steroid info.
Posted 8/26/2013 1:15 AM (GMT 0)
If you want to go with SCD please have him write a food journal of what he eats and how his symptoms are. It helped me to find out I had fructose and lactose intolerance and couldn't follow Elaine's diet 100%. I had to adjust it.
Posted 8/26/2013 1:35 AM (GMT 0)
Some of my cravings went away on the SCD when I introduced small amounts of cheddar and havarti cheese. I ate it with apple slices (peeled and cooked at first). Also, these are fun....

http://www.joyfulabode.com/2010/04/25/low-carb-snacks-homemade-baked-cheese-crisps-recipe/
Posted 8/26/2013 11:35 AM (GMT 0)
Bella,

Welcome to the forum.

I'm glad you found us, although I'm sorry you and your son have to be a part of this terrible club.

Some meds work for some and not for others.

For me, the traditional meds failed me and the mesalamines I became intolerant of.

And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by doing these things it helped control my symptoms by 75%:

1) adequate high intake of vitamin d3 ( need to get your levels checked first)

2) probiotics are key, are you on any?

3) slippery elm powder to coate the intestinal tract helped greatly

4) l-glutamine amino acid powder for long term colonic repair

5) food combining

6) diet modification as in gluten and dairy free

7) rectal meds help lots of folks out

 

Be careful with cheese, your son may be allergic or intolerant of casein ( cow dairy protein). I would suggest he stay away from all gluten and dairy for now, until things calm down a bit. Also, some of the foods you mention his having do contain hidden gluten, which he may be reacting to. I would suggest you try proteins only and see how he does for now.

Proteins are typically very easily digestible. 

I started out on SCD, but eventually found I did much better on Paleo.

Slippery elm powder is a great idea, look into l-glutamine powder as well.

The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission.

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 
Posted 8/26/2013 8:59 PM (GMT 0)
Sorry for your pain, I feel for you, as I also have a suffering teen.
Re diet/s: we have not found that any one will fix anything while flaring. The mucosal layer is quite delicate, and some foods should be avoided till the colon heals. Soft, BRAT type diets have been recommended by hospital dietitian s during the tough times. When times are good, most any food is tolerated. That said, some testing for allergies(gluten ESP.), is a good idea.Most stick with the things that do not cause distress. My daughter lived on baby food, Ensure, and rice...some have problems with artificial sugars and processed foods. Avoid them when you can. Getting nutrients is important for young bodies in growth mode even more than for older folks. Best,
Posted 8/28/2013 2:56 PM (GMT 0)
InSoFla, thanks for your suggestions. I've added probiotics & taken away lactose and most gluten. I hadn't heard about the vitamin d3 levels, so we will check that, too.

I'll start adding l-glutamine amino acid powder to the mix.

I know nothing about food combining but will soon!

Thanks again.
Posted 8/28/2013 4:40 PM (GMT 0)
As somone who has had this over 20 years. Get him on Metagenics UltraInflamX right away (order it from Amazon or Healthy Planet's website). Don't get the 360 stuff, just the Inflam stuff.

It works.

After going through the Steriod/Imuran/etc etc.. BS ... This stuff works.

Recommendation on how to take it :

Mix it with Metamucil, take it 2 to 3 times a day at first or as long as you need.

Good luck.
Posted 8/28/2013 7:58 PM (GMT 0)
I"ll start the Metagenics right away. But what about Metamucil? Haven't heard that yet & always thought Metamucil was for constipation.
Posted 8/28/2013 10:02 PM (GMT 0)
Bella, my pleasure.

Don't forget about the slippery elm powder too.
Posted 8/28/2013 10:11 PM (GMT 0)
You may read that some on here have tried navy beans for their resistant starch properties. I had added them to well cooked chicken soup (I know, one can get sick of it).. but it seems to go well with it.

So is he going on remicade so soon? I went into remission right away on mesalamine, then flared and only pred has really helped knock it down. You may want to try for a quick (hopefully) dose of that.

Good luck!!
Posted 8/28/2013 10:16 PM (GMT 0)
Hi Bella's mom -
Responding to your question above: Some of us find fiber very helpful (I am one of those.) I've been taking two large doses of Metamucil or equivalent for 25 years. For me, it adds bulk to the stool and makes it easier to pass. I hate the 5 days pre-colonoscopy when I have to omit it: my stool are then smaller, less formed, more uncomfortable to pass.
My son's pedi GI, when he was first dxed, recommended Benefiber... just another fiber.
Posted 8/28/2013 11:07 PM (GMT 0)
Be careful with supplements. Slippery elm powder made me sicker when I was flaring. Glutamine can be helpful if your son isn't taking in enough protein, but if he's eating protein, it probably isn't necessary.

I was curious about which meds your son is on. Most of us on Remicade still take something daily.
Posted 8/29/2013 12:47 AM (GMT 0)
Hi Science Girl,

My son's UC was diagnosed in the hospital last week during his first flare (we thought it was appendicitis).

His colonoscopy revealed severe disease the entire length of his colon, so three days later (we had to wait for negative TB and Hepatitis test results) he had his first Remicade infusion. Prior to the Remicade he was getting IV Solu-medrol, last dose of that morning after Remicade.

Here's what he's taking at home:

Zofran every six hours, Potassium every 12 hours, Fluconazole once daily (for thrush) and Hydrocodone as needed (not too often now). I am making him shakes w/ lactose-free ice cream, probiotics, and a few other things. Plus his "old-man" diet.

Second Remicade infusion next week (two weeks after first). He hasn't had Prednisone at all; they went straight to the Solu-medrol by IV.

Once he gets to remission we'll have to find the right balance to hopefully keep him there.
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