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New member mom

Worried about my 17 year old son, who was diagnosed 2 years ago with a "mild" case of Crohn's in the ileum. His main complaint was alway nausea and the Pentasa we tried twice just made him more nauseous, then did a round of Flagyl for no good reason. Switched to another pediatric GI, supposedly the best in the state who was a total nightmare. She started him on Entocort, which we stuck out for 6 weeks and caused him to be in huge mental fog. By this time he no longer could go to school and had home bound tutor for rest of his freshman year. GI could not be bothered to call back, so finally went to Chinese doctor who was excellent and did acupuncture and herbs after getting him off all medications, including the Nexium he had been on for a few months before diagnosis.
After the prednisone he went into a deep depression, I am only now finding out that was due to the drug side effect, and ending up being hospitalized for school anxiety in the beginning of Sophomore year. Many anti-depressants later and switching to a smaller high school, he seemed to be doing better, gaining weight, but always tired and occasional bloody stools.
Last month he starting having lots of diarrhea with blood and has been hospitalized twice for dehydration. He has been 2 weeks on nutritional therapy and Methotrexate without a lot of improvement. But then his Sed rate was off the charts at over 140 and his CRP was 66. also lost 25 lbs in a month.
Just feel like he has been through total hell and it never seems to end. Worried he will never have a good life, has very few friends as they are all busy doing things and he has rarely had energy to keep up.
Sorry to hear about your son emillerstudio.
Check out the parents of IBD section. Lots of parents of boys your age. Paging tesscorm, paging clash paging kimberly27.
It can take a little while for some meds to work and bring about some relief of symptoms as things start to heal but it may be that methotrexate is not working.
What kind of nutritional therapy is he on? Total EEN exclusive formula and nothing else or supplemental for weight gain?
There is a teen only section on here and there are other places like Camp Oasis which is a camp put on by the CCFA for kids with Crohn's or UC. It may make him feel like he is not alone. It is hard when they don't feel well enough to do things with their friends.
Also check out this thread about success stories. There is a light at the end of the tunnel even when you can't see it because of all the darkness right now.

It feels like you just told my story as a mom with teenage son with Crohn's. I have so much worry, worry, worry. But now I am dealing with my depression and hope some day my son will get help for his. When I figured out it is connected to part of the disease I was told by my insurance company to let myself feel the pain and walk through it. I am going to start journaling 3-5 times a week for 3 to five minutes. Good Luck, I'm here. Kinsey:soledance:
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thanks for replies, he is on Peptamen Jr and clear liquids only, I think it is to calm the inflammation. The doctor says 6-8 weeks, and not sure if we can introduce other foods before that. Actually the methotrexate seems to help the next day after the dose, but not sure the EN is doing anything, especially for all the hardship it is causing.
It may not seem like it is helping but it takes a little time to see the benefit and give the gut a rest which is why they do a 6-8 weeks and allow time for methotrexate to really start working.
Is he doing metho shot or the pills? Is he taking folic acid along with the methotrexate?
I would not recommend introducing foods prior to then and generally when food is re-introduced it is only a few things at a time. Let me look and see if I can find the thread where re-introduction is discussed.
Kinsey - posting here is almost like journaling and you get extra support :)
the metho is pills and he is taking folic acid. I just can't see him maintaining his skinny weight on this without some real food! The nutritionist at the hospital said they have seen some success in Europe with 50/50 mix.
My son is doing a mix with my son but we are mostly doing it for weight gain/growth as he has only gained 5-8 lbs in the last 3 years and grown 1.5 inches and he is 13.5 right now. He has already gained 10 lbs in the last 3 weeks. He drinks 8 8oz cans a day = 1,896 calories and probably only gets another 1200-1400 calories a day from food if that on some days.
Hi emillerstudio, welcome to the forum! So sorry for all you are going through, it is so overwhelming at times.

The thing with real foodstuffs when your child has active inflammation is that the inflammation makes it harder for the GI to digest and absorb foodstuffs. With EN you are getting the nutrients and calories he needs to gain weight and it is also giving his bowel a rest allowing the GI tract to become uninflammed(for lack of a better word). I can imagine it is not an easy road, teen boys love to eat. My son is 16 going on 17 and he is not gaining weight either, which means there is no chance for vertical growth.

I've fought EN because I know the trouble it will be to keep C on it through an NG tube but we are soon to a point where there is no other option and that is how it will be put to him from the GI and myself(I've already discussed this with them.) C has had several tests run and none so far have shown inflammation, he has been on Remicade for almost a year and methotrexate for 6 months.

One last thing, it usually takes around 6 weeks for Methotrexate to reach full efficacy. I hope that the MTX works for him and he is able to reach remission quickly!
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I can understand such frustration, we thought we had the best too, we were told she was by some big hot shot hospital in the suburb of Northern Va. They first stuck him in the hospial and diagnosed him with UC for the first 2 months. Put him on the wrong meds, etc. Hopefully this new Doctor will help a lot. Hang in there, I know my son is means everything to me and you can't help but feel their anguish, frustration. They aren't even adult, it's hard enough for me to deal with it, I wonder sometimes how my son keeps going, but he does as much as possible. Good Luck to you, I am a new mom to the group as well. Kinsey:soledance:
Oops! I hadn't realized I'd been paged! Good thing I'm not a doctor! LOL

Hi Emillerstudio,

My son, Reed, is also 17 and has Crohn's. He was diagnosed in October. I feel as many do: When he has a bad day, I have a bad day. When he's feeling better (or even not worse), then I feel good. Yesterday was Reed's first day without sharp pains, and I felt like throwing a parade!

My son was also on Home Hospital and out of school for a couple of months. It sure screwed up his AP classes and his college plans. He was also depressed and I was really worried about him breaking down. He was at home in pain on his birthday, and he pretty much broke down because hardly anyone called or texted. He went back to school in late November.

My son is a really great kid, but he is shy and can be a bit of a loner. I practically bribe him to go out with friends. I think those two qualities made the isolation of being sick harder, because when he really needed a group of friends, few were there. At first I freaked out about that. "Why don't more people come over?" "Do kids like my kid?" I had all these thought and fears floating through my mind just as I was personally taking an emotional nosedive. Now the kids who hang out at my house admit they were scared to come over last fall. Some moms even told them to leave Reed alone so he could heal!

So...long and short. I talked to other parents of 17 year old boys and we all agreed. They socialize through texting, email, facebook, etc. They live in a digital communication age (my son actually did an AP English paper on this topic), and they don't hang out in person the way we might expect them to, or in reference to our own childhoods. Bottom line: Boy can be clueless. But when your kid is alone, and you are feeling scared about that, it sucks.

Medically: My son is light too. Reed is 5' 5 1/2 (Yes, I'm claiming the 1/2 inch- LOL), and only 110. He is a black belt and used to run cross country so he was alway very lean. He weighed 117. Crohn's took him down to 103, and he's since been holding steady at 110. The wind looks like it could blow him over! My heart breaks when I see him next to my strong, kayaking 6' 0" tall husband.

Alright- I'm starting to get a little too chatty- sorry folks!

Welcome and hugs.


my little penguin

Staff member
Glad he is meds now.
8 peptamen jr is really a low amount.
My son drank 7-8 daily of peptamen jr for his 9 weeks of EEN.
Also Mtx shots have a better chance of being absorbed however if the doc thinks compliance is an issue then pills are tried first.
Mtx takes about 6 weeks to take effect.
EEN longer than two .
Many kids can and haves stayed formula only for many years due to non Ibd issues and grow / gain very well.

DS gained 20 lbs and grew 3.5 inches between dx and now due to peptamen and his other meds .

Depending on how light your child is may have factored in the number of cans he is drinking.
Our Gi always gave DS permission to drink more if he was hungry .
So something to ask?? Your doc .
thanks Kimberly and Penquin! The one thing I am just finding out from my very excellent GI is that my son's deep depression and then anxiety attacks (mostly about going to school) were probably a side effect of going OFF the Entocort. He was in a total brain fog when he was on it, and then after we weaned him off, he just spiraled down into this really deep funk. Of course there were no friends around to help him, his isolation really made it worse, but then he didn't want to see anyone or do anything. It was more than a year of therapists and medications to get him back again and that part makes me really mad. The other GI did not mention anything about that, even though she knew he was really funky on it. PO'D!!!!
M should be discharged from the hospital tomorrow after the first Remicade infusion was done yesterday. The NG tube is gone thankfully after he threw it up twice and refused to put it back in. He had it in for a week and it wasn't making a lot of difference and I guess it is not as effective for Crohn's Colitis. So he will be drinking the formula again and introducing a low residue diet. Phew, seeing the light at end of tunnel I hope!