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My son has been having constipation most of his life.  We figured it was poor diet, picky eater.  Past year it has gotten worse stools very large  -went to doc and  put him on miralax has been working grt.  We noticed on his anus he had 2 skin tags that looked like hemroids, I figured from all the pushing, always in bathroom for 30 mins.  Were referred to GI found out they were perianal tags fistals I guess although he never called them that. We are on miralax and he has had diareah several times but not often like most I hear.  Went for upper GI - test came back fine.  Next was colonoscopy/endoscopy looked fine until they got the results of the biopsy.  Esophogus fine, showed gastritis in stomach but not anything abnormal he said.  Colon however showed right/left side with active and chronic colitis and also showed poorly formed granulomas.  He feels it is crohns because ulcerative colitis never has granulomas and with the tags on his anus and the granulomas he is diagnosing it as crohns.  we are going for stool sample test more blood work, dexoscan and ultrasound of abdomen next.  He wants to start him on 3000 mg of pentasa daily, fish oil, multivitamin and probiotics.  he also wants to do inranasal night time feedings where he will get 80% of his nutrients.  He feels since he is 10 and in prime growth puberty ahead that children with crohns are malnutritioned - will help with growth and weight.  His granulomas aren't even formed yet and he's not walking around with diareah.  he does have abdominal pain at times he has had unexplained fevers maybe once or twice a year with no other symptoms, but it could just be viral he is 10 and in school.  he does complain sometimes of leg cramps.  I'm thinking I should go for 2nd opinion and think food tube is evasive.  Has anyone else had anything simular.  Help and advice please

 Reply posted for momsteph.

My son had similar symptoms- lives on miralax now! early in his dx when he was not gaining weight we opted for Boost shakes three times a day- he got one even during school by the nurse. At night he drank some high calorie protein shakes and that helped with the weight gain and eventually some growth.

 Reply posted for complicated.

I want to thank you for answering my questions, you were really helpfull.  Thank you so much you are so very kind.  I am having my son drinking protein shakes by carnation that are 565 calories a piece we do 2 a day he has gained 5lbs in a week.  I am thrilled.  I am doing anything to avoid this NG tube.  thank you again and best of luck to you and your son.

 Reply posted for momsteph.

theres no such thingas too many questions, were moms worried about our children!!

first, he only had the ng tube for about 6 weeks. we had it inserted at the hospital where they check placement by x-ray. every night i checked placement with a stethoscope by pushing air through the ng tube prior to feedings. when he had the ng tube his dr just had us put an extra pillow under his head at night while the pump ran. after we saw results with the ng (10 lbs in 6 weeks) we had the g-tube placed surgically directly into his stomach. he now just has a small "button" that we hook up to nightly. im not 100% sure on this but i think they were only concerned with aspiration with the ng tube but i have heard no mention of concern with his g tube, he uses it every night laying down normally.

when he had the ng tube it stayed in for the full 6 weeks, he hated going out in public at first but he did great. i cant imagine reinserting the tube daily! it is uncomfortable and although checking with air is somewhat reliable they say you need an x-ray to be sure its placed corectly.

i agree that its somewhat traumatic for a 10 year old, it was very difficult for my son. but looking back i dont regret it at all, he is thriving compared to how he was a year ago. i know the drink is not the best but i know drinking it at night is an option if maybe he could try that for a while to see if it helps (easier said than done, my son hated it so much that he prefered having a tube down his nose!).

i hope this helps a little, feel free to ask as many questions as you need, it can be frightening for parents, these are big decisions! good luck!

 Reply posted for complicated.

May I ask how your son does with these NG feedings.  Does he insert this tube himself? how hard is it?  does he do it while he sleeps.  They want my son to do this for weight gain, but I feel its reall evasive.  Also, I think quite tramatic for a 10 yr old.  Does your son also sleep sitting up.  Is there a risk of asperation?  I'm sorry I know it's a lot of questions, but I really need answers on this topic.  Please help.  Thank you.

 Reply posted for momsteph.

Hi. My son is 13, he's had Crohn's since he was 8 years old. Last summer he had a G-tube placed so that he could do nightly feedings without the NG tube. I was all for the feedings because at 12 he weighed just 62 lbs., if he were to go into a flare and drop 20 lbs (like he had in the past) he would have been too frail and weak. I really wanted him to have extra weight on so that he would be able to be strong enough to get through another flare. Within 3 months of starting his tube feedings he put on 30 lbs. He does fluctuate a little here and there but when he chooses not to do feedings a couple of nights in a row I really notice a drop in his energy level, the calories really help him have extra energy and we're thrilled with the weight he's put on. These are obviously very difficult decisions, I wish you and your child the best!

 Reply posted for momsteph.

Yes, my 7 year son also had the fevers, leg cramps, gut pain, constipation, etc., the constipation has been relieved by the probiotics. I went for 2 opinions and got two very different approaches to this Crohn's puzzle. Some doctors are much more drug oriented than others....I liked what one doc said..."Why drop a bomb if you can stop it with a bullet?" A second opinion was comforting for me. I'm routing for you, hang in there!

 Reply posted for momsteph.

My son has not developed any more skin tags and the one he has does not bother him.  The doctor said that removing them is very painful so they usually leave them alone if they are not bothersome.  My son is doing well now, but he is on Imuran and has frequent blood draws which he has beome second nature to him.  Although he does is not symptomatic most of the time, he remains extremely anemic and his protein is still low.  I am hoping this improves once he has been on the imuran for a while.  If not then he will probably end up on Remicaid.  We are doing the TAKE STEPS walk in our local community next Saturday.  We are very excited about it.  I will let you go now.  Keep me posted on your son.  Take care. 

 Reply posted for loving mother.

Has your son developed more skin tags?  do they bother him ?

 Reply posted for momsteph.

My daughter is 11 and has had crohns for almost 2 years.  She also is having a hard time with weight gain.  When you insides are swollen there is not as much room for food.  We have not done night time feedings but we might need to soon if she does not gain weight.  We have been on different meds and have just done are 4th treatment of Remicade and things look good.  I wish you the best of luck and hope everything works out for you.

 Reply posted for momsteph.

The nighttime nasal feeds are not so unusual as you would think--growth delay is huge in Crohn's especially for boys and nutrition helps--but why don't you meet with a nutritionist first?  There are lots of supplements/hi cal options you could try first.

 Reply posted for loving mother.

thanks for getting back to me - does your sons skin tags ever do anything and are they what they call fistulas?  does the pentasa keep his inflamation down? my son doesn't really complain of many symptons, atleast not yet.  are you doing any vitamins, probiotics or liquid nutrients?  my son doesn't eat great he eats but gets full fast.  i'm going to try more little meals throughout the day.  I would really like to get his weight up.

 Reply posted for momsteph.

Hello there.  My son is 8 and was diagnosed last year when he was 7 with Crohns.  He too was always constipated, had a skin tag, ect.  It was not until he stopped eating, began having fevers, had severe stomach pain and fevers before we were referred to  a GI doctor who diagnosed him with Crohns after endoscopy and colonoscopy.  My son has been on Pentasa, Vitamin D, iron, prevacid, and recently started Imuran.  I am not sure about the night time feedings that were recommended by your doctor.  Our son's sound like they presented very similarly.  It never hurts to get a second opinion.  I would if I were in your shoes.  Take care.