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Terminal ileitis

My 14 year old daughter has been having bowel problems for over 2 years she had a endoscopy when her symptoms first arose and it was normal. Two years on and she has stopped growing, has pain and diaorreah after every meal and the blood tests came back with anaemia and raised eisonphills. She had a colonoscopy on Friday and he noted red inflamed nodules in her bowel and diagnosed terminal ileitis but not Crohn's. He's taken biopsies of her bowel and we get the results back in 7-10 days. Does this sound familiar to anyone? I don't know what to do about her pain, she's been prescribed iron for the anaemia but she's almost afraid to eat because of the pain. I just need to know if anyone else has had anything similar and what they found helped them please. Thanks, ruth
 

my little penguin

Moderator
Staff member
Not sure why he dx terminal ileitis but not crohn's.
I would honestly wait for the biopsy results
DS had a normal looking scope but biopsies revealed crohn's .
clan you get a second opinion or have the slides re read ?
Are you in the US ?
 
Welcome to the forum, but sorry to hear your daughter is not well. My 9 yr old son was dx'd with Crohn's in the jejunum of the small intestine last yr. The GI was quite sure it was Crohn's, but it wasn't until the biopsy results were in before it was confirmed. It's difficult to wait, but hopefully the biopsy results will give you some answers, and then treatment can begin. Did the GI also do an upper scope this time? A lot can change in a couple years. I wouldn't do a whole lot of changes in her diet until you have a dx confirmed, as more testing may have to be done. But, what helped my son was to switch to low fiber foods, ie white bread, soft cooked veggies, no seeds/nuts, and switching to lactose free dairy. I don't think there would be any harm in doing these things for your daughter now, if you thought it might relieve some of her pain. I hope you get some answers and your daughter starts feeling better soon.
 
We've just moved from the uk to Beijing for 3 years. Dr has ordered a ct scan as he wants her to swallow a camera capsule and he wants a clear picture of her insides. She's just losing weight and I'm concerned her fear of eating will cause more problems as she gets older. The dr said she had inflamed nodules but her couldn't see any signs of ulcers and there was no blood in her stools. She's so miserable and tired I just want to help her. It's a national holiday here for the next week so nothing is going to get done :( thanks for your replies
 

my little penguin

Moderator
Staff member
Paging janeandnick
She is a uk transplant in Malaysia
So working within a different country makes things a little harder.
Not sure of the rate of pediatric crohn's there
Does she see a pediatric Gi ?
 
She's seeing an amazing gastroenterologist who has been so helpful since we saw him he is not a specialist paediatric dr but certainly seems to know his stuff and doesn't want to leave any stone unturned it just seems to be a waiting game
 
My son has never had blood in stool except for a bout of c diff. Many kids do not present with the traditional symptoms. Can you get an ensure type product - meal replacement drink? Whenever my son is flaring he won't eat either and these drinks have the added benefit of working to reduce inflammation when used as EEN (exclusive enteral nutrition). Hope you get biopsy results soon
 
She's seeing an amazing gastroenterologist who has been so helpful since we saw him he is not a specialist pediatric doctor but certainly seems to know his stuff and doesn't want to leave any stone unturned it just seems to be a waiting game
Many diseases cause inflammation in the terminal ileum so that may be why he does not want to diagnose her with IBD so quickly. He's a good doc, I sometimes wonder if I really have Crohns bc the docs never checked for anything else and my disease feels like an infectious disease sometimes. Many folks see and infectious disease doctor when presented with autoimmune problems just to rule it out.
 
Many diseases cause inflammation in the terminal ileum so that may be why he does not want to diagnose her with IBD so quickly. He's a good doc, I sometimes wonder if I really have Crohns bc the docs never checked for anything else and my disease feels like an infectious disease sometimes. Many folks see and infectious disease doctor when presented with autoimmune problems just to rule it out.
Jajabinks- that is often on my mind. do you know anyone who was actually diagnosed with something other than the autoimmune disease? Anyone who actually confirmed an infection that could be treated?
 

my little penguin

Moderator
Staff member
If it was infectious disease then the kiddo would go down hill very fast when in immunosuppressants.

We have spoken about this at great length with DS's gi.
Kids with Ibd present and have different treatments etc than adults you really need a ped Gi .
They are not just smaller bodies everything about the disease differs including the fact the disease course is more severe /changing etc..,
 
Jajabinks- that is often on my mind. do you know anyone who was actually diagnosed with something other than the autoimmune disease? Anyone who actually confirmed an infection that could be treated?
No but I've read many research papers of people misdiagnosed most are on NIH.gov. It warns doctors about ruling out all other diseases before medicating for Crohn's disease since it can be very dangerous. There are also personal experience stories online.
 
Thanks for the replies everyone. The article was very interesting. I guess until I get some proper diagnosis I will worry. My husband doesn't want me messing around with her diet but she is almost afraid of eating because of the pain. I might see if I can find some protein shakes just to try and halt the weightloss.
 
Thanks for the replies everyone. The article was very interesting. I guess until I get some proper diagnosis I will worry. My husband doesn't want me messing around with her diet but she is almost afraid of eating because of the pain. I might see if I can find some protein shakes just to try and halt the weightloss.
You can always just purée her food. I may try it someday, purée my chicken and rice with veggies. Baby food style.
 

my little penguin

Moderator
Staff member
Smoothies
Nut butters for protein
Almond milk
Coconut ice cream
Pumpkin etc...
Not complete nutrition though
Kids boost nestle ( could use amazon or nestle website direct )
Same with peptide ..
 
We've just moved from the uk to Beijing for 3 years. Dr has ordered a ct scan as he wants her to swallow a camera capsule and he wants a clear picture of her insides. She's just losing weight and I'm concerned her fear of eating will cause more problems as she gets older. The dr said she had inflamed nodules but her couldn't see any signs of ulcers and there was no blood in her stools. She's so miserable and tired I just want to help her. It's a national holiday here for the next week so nothing is going to get done :( thanks for your replies
Berry yogurt smoothies have really helped with my fatigue. Not sure if the berries are directly helping with my anemia or the antioxidants are helping. More fruits and veggies have helped especially spinach. I brought up my hemoglobin levels this way a while ago then I fell off my diet.
 
Good luck with the wait for results. My son loves smoothies and milkshakes, a good combination is coconut milk, mango, pineapple and banana.
 
Just catching this thread now. Glad to see a doc is treating but not rushing to conclusion. When my daughter was just before diagnosis and she dropped 30 lbs in 6 months at age 11 I was trying everything under the sun to keep her strength up and halt the weight loss. Big hugs. This can be some of the hardest parts of dealing with the disease. D stopped eating for about a week completely towards the end and only would "eat" the one thing that didn't bother her, which was home made. I took protein shakes (from GNC) that had no dairy, added frozen raspberries and bananas and blended them and froze them into popsicles. I was able to sneak in some vitamins and nutrients in the frozen pops and it was cool going in and didn't aggravate her gut. I also pushed gatorade & pediasure pops to get her electrolites up as she was vomiting too.

My kid is now 14 and is still fearful of eating some foods, but not of eating. The brain is an amazing thing. When your kid can keep things down & in she will go back to eating. Stay strong and know we are all here for each other for support!
 
Hi Spaggy,
Welcome to the forum. I was reading over your story and as my little penguin said pediatric IBD really needs to be treated by a peds. GI the
Disease can be very different in kids. Do you have a peds GI in your area you might be able to see?
 
I think she's ok with water and milk but can't drink juice or anything fizzy without pain
I forgot to mention, iron pills caused me severe abdominal pain! At first I thought it was Crohns pain and I stopped the pill just to see what would happen and the pain went away. My GI said some people can't take iron pills which is why I had to turn to green veggies.
 
I don't let my kid take anything more than tyenol extra strength for pain. We use heating pads for her stomach and that helps too. She manages her pain better than I probably would though and only complains when really bad because she is fearful of being hospitalized again. She would rather lay at home in pain than be cooped up in hospital. I'm saving the big gun pain meds for later.
 
Nothing was prescribed for my son for pain around the time of his dx, as they wanted him to be able to say where his pain was, when it got worse, etc, etc. Once we had a dx, treatment was started and within days the pain started to diminish. Now my son still gets pain in his legs and heels periodically, but we just use Tylenol and a hot water bottle. Ibuprofen is a no-no for IBD patients.
 

Maya142

Moderator
Staff member
My daughter takes Tramadol but for joint pain, not stomach pain. We fought it for a long time but it got to the point where she just did not sleep at all, lay awake till 6 in the morning because of the pain. At that point her rheumatologist insisted she started taking Tramadol, apparently chronic pain in itself can be harmful.
M doesn't like Tramadol (makes her sleepy and sort of out of it) but it does help her a lot. It causes constipation (but she didn't mind that since it slowed down the diarrhea) and initially caused nausea but that went away.
Besides Tramadol, we also use heat and ice.
 
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