My 13 y.o. son was just diagnosed

[AntsMommy]

Hello, I am new here.

My son has had stomach issues which have increased over the last year. Last Thursday night he got very sick (stomach pains, vomiting, hadn't used the bathroom in 3 days). The dr thought it was appendicitis, but it turned out he had a partial blockage (which corrected itself) and inflammation. He was also anemic. After seeing 5 doctors in the hospital over the holiday weekend, they each said he has Crohn's.

He had another episode today and is finally sleeping. He is on a low residue diet for now until we can see a specialist (hopefully Friday). We were also given prednisone and iron supplements. He is constipated now, which I am sure is aggravating his system even more, probably due to the sudden change in diet and the iron.

I am looking forward to learning everything I can from the group about this disease. I am really very worried. Will he be able to live a normal life?

Thank you in advance,

Kelly

 

[Crohns08]

Hi Kelly,

Sorry to hear about your son. It's tough being diagnosed so young, I should know since I was at 16 years. In my experience a low residue diet is good, but certain things like bread can be harmful. If I were you I would do research into a few different diets and see which one works best for your son. Diet can really help and when used in combination with milder drugs it can actually be very affective and a better alternative than all of these other drugs with awful risks and side effects.

Oh and have him drink lots of water, dehydration can make you constipated as well!

Good luck to you and your son

 

[DustyKat]

Hi Kelly and :welcome:

I'm so sorry you had to find yourself here. There are quite a few parents on here that understand exactly your fear and dread, myself included. Your son sounds like he has a similar history to what my daughter had, issues which have escalated over a 12month period.

The sooner you have the specialists appointment the better in my opinion. I just think that vomiting and constipation are symptoms that need sorting promptly. If he has started vomiting again and you have already stated he is constipated then he may well have another blockage or partial blockage. If you are in any doubt whatsoever go to the ER. Hopefully this is not the case and the meds will kick in and give him some relief.

Anaemia, B12 and Iron defiencies are normal when the terminal ileum is affected and it is something that will need regular monitoring and supplementation. Do you know if this is the area affected?

It might be a good idea to keep a diary of his symptoms, this is a link to what you might include..................

http://www.crohnsforum.com/wiki/Diary-Inclusions

There is also a parents forum on here..................

http://www.crohnsforum.com/forumdisplay.php?f=49

Will he be able to live a normal life? Everyone is different but yes he can lead a normal life in partnership with his Crohns. My daughter required surgery 4 years ago when she was 14 but has been in remission ever since. She had 60cms of small bowel removed and was left with short bowel syndrome but she has adapted to this and lives away at university now. I often wonder what her life would be like without Crohns but if I am honest with myself I think it has played a large hand in who she is and the direction she is now taking in her life and for that I am grateful.

Have a browse through the diet and food forum. If you have any questions please don't hesitate to ask and keep us posted with how things are going. Thinking of you and take care.

Dusty.

 

[Dexky]

Hi Kelly, I can't add anything to the great advice Dusty and Toni have given!! I just want you to know that you are not alone with your fears. My son, EJ, was dxed last Dec. at age 10. He never had much vomiting or C, his main symptom was bloody diarrhea. The pred. really worked wonders for EJ. He's been mostly well since coming off it in Feb. Please keep us posted as you learn more from your GI. Glad you found us!! Welcome!!

 

[AntsMommy]

Thank you all for your input!

I was really worried about another blockage because of the vomiting, but he had a BM this morning. He hasn't begun the prednisone yet (taking Asacol right now?) because he wasn't able to eat last night and we were told it has to be taken with food, so we will start that today hopefully. It seems like we are in a catch 22: the new diet/iron causes constipation which then worsens his condition, and the medication has to be taken with food which he cannot eat due to pain.

His inflammation was in the small intestine, and in the hospital he was given Pentasa. The insurance would not pay for Pentasa so they switched us to Asacol - but it seems like that medication is for the large intestine, not small. Is this correct, and does this make sense?

We are hoping to see a pediatric GI tomorrow. We live in an area in which the closest one is 1.5 hours away, so she travels here one time per week and tomorrow is that day. The hospital was working on getting us in.

Thank you all for your replies. As a mother, I feel so helpless to see him in such pain and know there is nothing I can do.

Kelly

 

[Guest]

hi Kelly, welcome to the forum.

you're not helpless - there is a lot you can do, and it sounds like you're doing exactly the rights things already! you're making sure he gets the right care & attention, you're fighting his corner - these are the things that kids can't do for themselves, so what you're doing is invaluable to him right now.

regarding the iron/constipation issue, maybe at the next appointment you could ask about iron injections? that way, it would bypass his digestive system and go straight into his bloodstream. iron injections can be sore though, so if he does go this route, maybe some of that 'magic' numbing cream might be needed.

 

[DustyKat]

His inflammation was in the small intestine, and in the hospital he was given Pentasa. The insurance would not pay for Pentasa so they switched us to Asacol - but it seems like that medication is for the large intestine, not small. Is this correct, and does this make sense?

Although marketed primarily as a drug used in the treatment of Ulcerative Colitis it is also used to treat mild - moderate cases of Crohns in the small bowel.

I think Pentasa and Asacol are the same dug - Mesalamine. I don't know enough about them but perhaps Asacol is the cheaper preparation of the two. Is there a difference in their appearance e.g. capsule v's tablet??

I hope you get in to see the GI tomorrow. Oh and what Ding said is absolutely true, you are not helpless - you are doing a fab job!

Dusty.

 

[Astra]

Hi Kelly & Ant
and welcome

It's a shame Ant can't get going on the Pred due to constipation. This will heal him very quickly and give him some relief. I believe Asacol and Pentasa are both amniosalicylates containing mesalazine, especially formulated for UC and the large intestine, but equally works well to reduce and maintain inflammation in the small bowel too. I've been on Pentasa for 5 years now with good results.
Ant doesn't need a huge amount of food to take the Pred, I have mine very early in the morning with a piece of toast and a cup of tea. The earlier the better, it'll ward off symptoms of insomnia.
glad you found us, lots of young friends here too for Ant.
lotsa luv
Joan xxx

 

[Crohns08]

Actually I believe Pentasa is timed to release in the small bowel, and Asacol in the large. Someone correct me if I'm wrong as I'm not 100% sure on that, only like 90% certain Lol

 

[Shannon]

"Both Pantasa and Asacol are prescription forms of mesalamine. The difference is in the outer chemical coating. Pentasa preparation is more useful for patients who often of inflammation of the small intestine. Asacol tablets generally release the ingredient only in the colon. It is generally suitable for patients with colitis only."

I would link you to that but the forum won't let me. Anyway it's from the GI Health dot com website. I hope that helps!

 

[Crohn's 35]

:welcome: Kelly, I have a suggestion seeing as your son can't eat but if you live in the US he should try boost or Ensure, lots of flavours and it will coat his stomach and has lots of nutrition that he needs and get the Prednisone and other medications in his system so he can feel better. One other young girl was almost living on Ensure and she eventually had a resection and is back in school. He needs the nutrition and get the meds so he can feel better, hope this helps , hugs to you and your son!

 

[gypsigirl28]

Hi kelly and WELCOME!!! Sorry that your son is going through all this. You have come to the right place for information and support..

 

[AntsMommy]

Thank you all for the welcome and information!

He is back in school today and having a good day after some constipation and pain for about 36 hours. I did buy ensure also, and he actually likes it (score!). Yesterday he drank one of those, had half of a sandwich and some macaroni and cheese.

I feel like I have no idea what to feed him as everything he is not supposed to eat is what I would normally feed a healthy child. (fruits, vegetables, whole grains) I don't know what triggers him yet, though I have a feeling that one thing is broccoli since he frequently was sick after eating Chinese food and he LOVES chicken with broccoli. Before diagnosis, we thought his issues were caused by an ingredient in the food itself.

I know everyone is different, but does anyone know of anything particularly easy on the digestive system that he could eat right now?

Thank you!!

Kelly

PS - Specialist appt. on 9/20

 

[Shannon]

I understand what you mean. I was recently diagnosed and so I am still figuring out specific foods in the trick of the trade. When I was in the hospital for some procedures, I asked for a nutritionist to come and talk to me about some good approaches. High fiber foods (anything above 1g) as well as seeds, skins, and beans are no-no's. Some fruits like baked skinless apples are simple and easy on the tummy, at least for me. You can find a lot on the internet under searching 'low residue diet' as well. The ensure will definitely help him get the nutrition he's missing, so good thing he likes it! Another helpful hint could be working with him to keep a diet journal so that he has a personalized body of information on exactly what his tummy needs during subsequent flare ups. I hope you both get some relief soon.

 

[Shannon]

Additionally, I eat tons of boiled and baked, seasonless chicken when I'm flaring. It gives me the protein I'm needing without adding insult to my symptoms.

 

[Astra]

Hiya Kelly

I think broccoli is fab for us Crohnies I have no issues with it, only if it's fried and mixed with chinese monosodium glutomate, then I nearly die!
The only thing that works for me is the low residue diet, chicken, turkey, white rice, white bread, bananas, mashed potatoes with butter, scrambled eggs, and salmon. Arrowroot biscuits are good too with cups of tea. I occasionally have cheese and yoghurts too. When I'm flaring I stay away from coloured food, and absolutely no red meat or anything fried. After a few days I introduce some fruit like strawberies and melon for fibre. And bucketfuls of water too!
a food journal is a fab idea.
hope you both find some relief
xxxx