Symptoms continue dont know what to do...

[Mumof4]

Hi,

I am hoping for some advice from more experienced parents. Matt is 13 and was diagnosed with crohns just over a year ago. He is currently on azathioprine and omeprazole and lactulose. He is having symptoms of abdominal pain and bowel movements maybe three times before he gets to school each day, which are mostly very loose. He had an endoscopy and colonoscopy last week. This showed just three minor red spots with no real inflammation. He is getting an MRI of the small bowel on 31st. His doctor is happy that he is not in a flare based on the scope and his bloods. So why is he in so much pain???? And why the frequent bowel movements?

This morning I only just managed to get him to school and felt bad making him go when he is in pain, but he has missed so much recently. This has been going on since late August. He started the school year in September and has already been off about four times, most recently for a full week, which was last week. I am off work at the minute but have no idea how we will manage when I go back. How do others manage when your kid is off constantly at short notice? I do get him packages of school work when he is off so he doesnt fall behind but I still worry.

Matt has been on modulen twice now and is only really ever well in the couple of months when he finishes that. But he hates it and gets really upset at the thought of it. He must be feeling bad though as he voluntarily started having one drink of it each evening before bed to see if it would help (it didn't).

Has anyone any ideas of how to help with his pain and frequency when the docs are saying there is no flare and they are happy with his meds? I was thinking maybe a very strict low residue diet such as he has when he starts eating again after being on modulen might help? I am trying to contact the dietician to ask, but would really appreciate any advice. I am just having a bad day and crying with frustration at not being able to help him. I soooo hate this disease, and I am not even the one who has it so I can't imagine how he must feel.

 

[DustyKat]

Oh my, I am so sorry to hear that Matt is struggling Mum. :hug:

Just a quick question first...

How much Lactulose is he on and why is he taking it when he has frequent loose bowel motions?

Dusty. xxx

 

[Spooky1]

Hi, i enquired at the chemists when i saw lactulose on their shelf. Thinking it was something to aid lactose digestion i was surprised because they said its for constipation. No good for me then! Nor Matt by the sounds of things. I think you should question it as Dusty has.

best wishes

 

[Mumof4]

Sorry I should have clarified. He uses the lactulose when needed. When he was on the low residue diet before he became very "backed up" despite regular motions. When he came off the modulen this time the consultant said to use it as necessary. We don't use it when he is like this. However he is just as likely to experience hard stools and bleeding. It is so difficult to get the balance right.

 

[naturalhealing]

Hi,

There could be a couple of things going on. The medicine that he is taking may not be agreeing with him and or he might be eating something that is an allergen.How bad was his pain before he started the medication? And if he is eating something, what are those things?

 

[Mumof4]

His pain was very bad before he started the meds. I do think they have helped him, but am becoming more convinced it is diet. He eats low fibre foods, but I don't know if he has sensitivity to certain things. That is why I am thinking of going back to the start with the low residue diet and limited foods introduced slowly. Obviously that will impact on his nutrition levels which is why I am hoping to speak to the dietician. It is so hard to know what the problem is when there are so many variables.

 

[kimmidwife]

I would make a couple of recommendations. My daughter had a lot of issues with pain even though the doctors had said her disease was in check. I would ask for an appointment with a pain specialist. I would also ask about a medication called amitryptalline or ellaville.both are drugs that used to be used for depression and they found out by accident that they really help with gut pain.

 

[my little penguin]

Also ask about fecal caloprotectin stool test.
Has he had a pill cam.
We went through something similar bad stomach pains, multiple bm's , still needing miralax.
Gi told us he was fine. 6-mp was working. We tried the Ibs drugs ( periactin and ellaville) they did nothing.
Only when his EIM's got worse including vasculitis did we finally change meds not once but twice.
For DS at least he was still inflamed even though his blood work looked normal .
Happy to say after being on remicade for 8 weeks he is finally feeling better.
You know your kid so just keep asking.
For some Ibs make be present in which case mast cell stabilizers help stop it like cromolyn.

 

[DustyKat]

Where is his pain?

If he has small bowel involvement and narrowing then that may account for some of the fluctuating bowel habits and his pain. I hope the MRI is able to shed more light on things, bless him. :hug:

Dusty. xxx

 

[Hope345]

Hi and welcome to this site. I just found it a couple of days ago. My daughter is 13 and your sons situation sounds so much like my daughters. Everyone is different and there could be other things going on but this is what happened with our daughter.
She was diagnosed in Jan of this year but had symptoms 6-8 months before that. The pain did not come until Jan. She has suffered with alot of pain since then. Missed 1/2 of her 7th grade and several days this year. We are not sure if it is the current meds that are helping alleviate the pain, or the fact that we eliminated lactose and milk fat from her diet. Now she still has some pain when using the bathroom. It seems that maybe her pattern, because her Crohns is very mild at this time too. WE could not figure out why she was still cramping. She still has to get up extra early before school to use the bathroom once or twice, either use the hot pad or just relax and then most of the day is okay.
As far as school goes, I understand completely. I have pushed it to the side until her Crohns has gotten much better. Stress has played a role, so I try not to stress her out. I am meeting with her teachers next week to make a plan for Baylee. She basically has all F's for this year. As scary as that is, the vice principal is the one that reminded me that it is still only middle school. We can get them caught up when they feel better. Since our daughter now has more good days than bad, I am ready to work more with the teachers to send home any important work she misses. How one mom told me recently is just get the meat of the work and not the potatoes.

Some kids do not miss school, but many our in our same situation. I do not stress about it like I did, and will let you know what we put together. Up until now, my daughter could not have focused enough to do her school work with all the discomfort. I would let her do whatever she needed to do to keep her mind off of it. The pain was between 6-10 most of the time.

My heart goes out to you and your son. It is so hard when they are hurting and we just want to help them. take care and let me know if you have any questions I can help you with.

:heart:

 

[naturalhealing]

His pain was very bad before he started the meds. I do think they have helped him, but am becoming more convinced it is diet. He eats low fibre foods, but I don't know if he has sensitivity to certain things. That is why I am thinking of going back to the start with the low residue diet and limited foods introduced slowly. Obviously that will impact on his nutrition levels which is why I am hoping to speak to the dietician. It is so hard to know what the problem is when there are so many variables.

I would advise that you do start on a low residue diet, simple foods, bland. You can create broth with chicken and beef and allow him to eat that for the first two days. Get a few bananas and let them become spotted before you feed them to him. And give him a 100% green smoothie, which you can buy from your local store. It's made by Bolthouse. This will give him the nutrition that he needs during this diet, it contains all the vital vitamins to help his body stabilize and maintain.

This is the step that I started with my 9 year old. And I then started adding in new foods a couple of days at a time. Keeping away from sugar and breads.This helped calm his pain down and helped me figure out what didn't agree with him.

 

[my little penguin]

Before you do any extreme diet on a already sick possible malnourished ( due to crohn's ) speak to your Gi and most have a nutritionist on staff to help you figure out what can and can not be taken out.
Highly recommend EN.
DS uses peptamen jr.
It is easily absorbed contains complete nutrition and is recommended by our GI.

 

[naturalhealing]

There is nothing extreme about giving your son light broth for a couple of days, along with a nutritional, all vegetable juice. If you've been going through this long and he has been in pain, taking measures to make him as comfortable as you can until you can talk to your G.I is fine. You won't hurt him by taking away the heavy foods he might be eating.

 

[imaboveitall]

YES to the EN recommendation by MLP.
If he cannot drink the Modulen, (V never would have) you can use an NG tube placed at nighttime before bed as V and Tess's Stephen do. Very easy, painless and they get the cals they need while sleeping.
It aids not only undernutrition but is anti-inflammatory as well. I have nothing but good things to say about it.

As to the doc saying he is OK because his labs are fairly OK, that is flatly incorrect thinking. As many on here (and V's doc) can attest, labs OFTEN are misaligned with actual disease activity. V's almost always are. Without a capsule endoscopy, she'd never have been properly diagnosed as her labs and scopes were/are near normal even when she'd lost over 25% of her body weight and was near death.

 

[my little penguin]

Again - if you are cutting out major food groups ( bread sugar etc...) and putting a stressed system on a very low calorie diet ( juice and broth - not nutritionally complete for an adult) even for a few days- talk to your doctor first. These kids can fall fast which is why you should consult with your doc. The docs are there for a reason.
Not saying not to do the diet just make sure you ask your doctor.

 

[Tesscorm]

I agree with imaboveitall, see if your son would consider using an NG tube. My son learned how to insert the tube very easily. Please look through the Kids on EN thread, link is:

http://www.crohnsforum.com/showthread.php?t=36345

In that thread, I posted a link to a girl inserting the tube, she is very exact... the only thing, she is SO exact that it seems like a long process, in reality it takes my son seconds to do it each evening. Given the choice between drinking a number of shakes each day that he didn't like or using the tube, I have no doubt in saying my son prefers the tube.

Also, while elemental formulas (such as Modulen) are 'better' for EN (sorry, I can't actually explain why... my little penguin and kiny have posted explanations), if you are simply looking for nutritional supplement (and to replace the odd meal), polymeric formulas such as Boost or Ensure will also provide the nutrition and taste better.

:ghug:

 

[Twiggy930]

Your daughter sounds just like my son! We have done exclusive EN via a NG tube as the others have described. It didn't solve my son's pain issues but it did give him GREAT nutrition at a time when he really needed it. He found the NG tube a breeze, it was amazing.

We have been told the lingering pain is either IBS or abdominal migraines or both. He has missed almost the entire second half of grade 5 and the start of this school year saw him miss about 50% of the days. The last couple of weeks have been much better. Not sure what caused the change but we started giving him a probiotic the GI recommended (called TuZen).

Hope you can get some answers soon. It is horrible when they are in pain and the docs say the Crohn's is under control.

 

[Mumof4]

Thank you so much for all your replies. I know I can always get support and advice on here. It is a wonderful forum but it just makes me so sad that there are so many families out there dealing with this horrible disease and struggling to keep their kids well.

I have spoken to the dietician this morning. She has said that his diet is already low enough in fibre and to restrict it any further would not be good nutritionally. I did point out that he takes multi vitamins and iron because we know his diet is restricted. She is of the opinion that I should wait for the MRI to see if there is active disease in the small bowel as she thinks that is the most likely cause of his symptoms. It is only 12 days so I think that is what we will do. I am worried that if I change anything too much before that then what may have been active disease will have settled and not show (not that I want him to continue suffering but I hope you know what I mean). The dietician has said that if there is nothing showing on MRI then we will look at a milk free diet then.

One thing she told me which I am not sure of is that modulen is milk based? Is that right? If so I am surprised.

On a positive note although he ended up having to "go" five times yesterday he is feeling slightly better today and only went once before school. Isn't it odd the things that can make you happy when you have a kid with crohns? We got up at six o'clock to allow time for him to go for no reason! Yey!

 

[Mumof4]

Sorry for those of you who mentioned the ng tube that is not a problem. He can tolerate modulen and has done so for two eight week periods before. At the moment they are not recommending it as they say he has no active disease. We will wait for the MRI and then decide next steps. Thanks for all your help again x

 

[DustyKat]

If he has chronic scarring and narrowing in the small bowel it will cause pain but won't necessarily show in his bloods if the inflammation has been brought under control.

I hope the MRI gives you solid answers and a direction to take for your boy Mum. :hug:

Dusty. xxx

 

[Twiggy930]

Modulen has the milk protein casein in it but it is lactose free.

 

[Sascot]

Hi, sorry to hear your son is struggling. It is a worry when they cannot make it to school. I had a meeting with my son's form teacher and asked her to check with teachers if Andrew is off school for more than 2 days. Basically they have given us a coupld of textbooks to keep at home and then email me either exercises needing doing and worksheets which I then print at home for him. That means if he is having a good hour at home then I can get him to at least attempt some of the work.
Hope they manage to get him into remission soon. I agree it's best not to change his diet too much before his test, but you could have things ready for after that. So hard to know what to do. We were told to let him eat anything but from a bit of reading I avoid sweetcorn and popcorn. I cook all vegetables and peel all fruit but that's about it. Good luck with the test.