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[catfan2]

Hello

I joined this forum as my 14 year old daughter has been diagnosed with Crohn's a few months ago. Before diagnosis she lost lots of weight - she told me she couldn't eat much as she always felt full - was vomiting about once a week, constantly tired, white as a ghost; all things that I now know to be signs of Crohn's. I'm just so angry that she has it, I want to know 'why her?' She is the best daughter anyone could wish for (I know I'm probably biased!) but she's such a sweetheart. Anyway, she's had a colonoscopy, endoscopy, mri scan, ultrasound and abdominal xray which confirmed Crohn's in her small bowel. She was put on an 8 week course of Modulen, it was so tough for her at the beginning, but by the end she was a champion at taking it! We saw the dietician a couple of weeks ago to discuss food reintroduction, which started two days ago. At the end of day one, she said her tummy felt 'odd' and was making some very loud grumbling noises. Her food intake that day was Ricicles, a couple of rice cakes, a slice of chicken, a sausage (100% meat) and some mushrooms. Sounds a lot, but the portions were tiny and she was still having three quarters of a tin of modulen. Yesterday she had some more cereal, but didn't feel like anything else. The rumbling noises in her tummy were still evident, and she said she didn't feel well. In the evening she was sick - the first time since she's been on the Modulen.
Is this normal, to react like this when re-introducing food? I feel like she's taken a giant step backwards . The Modulen is fantastic, made her gain weight, have more energy and be like her old happy self. Obviously she can't be on it forever, but I can't see her suffering like that again. She starts school again next week after the summer break, and is already worrying about having more time off. It's such a lot for them to cope with, the teenage years are difficult enough. Thanks for reading, I hope to hear from anyone who has any advice .

 

[Sascot]

Welcome to the forum, sorry to hear about your daughter. It is horrible watching them suffer through this! My son is 13 and was diagnosed last year. He went straight onto the Modulen for 8 weeks but he couldn't manage to drink it so had to wear the NG tube attached to his cheek for his first 8 weeks of high school!
He didn't really have any problems reintroducing food after the Modulen -we just followed the little leaflet and he was fine. It might be worth doing one more day with just the Modulen to settle her tummy again then start with things that are soft like custard/yoghurt or make some mashed potatoes or some porridge (readybrek is nice and soft) or some blended soup. Maybe her tummy is having to work harder to digest things like the chicken and mushrooms and the ricicles would be quite scratchy on her stomach if she didn't chew everyone of them completely.
It might be worth sitting down with her school teachers and explaining everything to them. I had a meeting with Andrew's school and explained that he might be off quite often and I needed them to send work home if he was (I think they felt sorry for him before and never sent work home). They email me things which I then print off at home and he can do as much as able while lying in bed. He also has been given textbooks to keep at home so they can just email page numbers/exercises. Good luck with it all

 

[Hobbes650]

Hi catfan2!

Food is definitely tricky, and when things are bad it seems all food is tough. When I was very sick I tried to eat low residue food, so I avoided nuts, vegetables that were not well cooked, popcorn, etc. Fibrous foods like mushrooms I also avoided, so I was a little surprised to see you mention it. Mushrooms didn't really break down, they just shrunk, which meant more stuff was getting in contact with my diseased colon and causing me more pain. Sometimes I stayed away from fried foods as well. Now that I'm in a middle of a mild Crohn's flare up I have adjusted my diet a little bit (the flare up isn't so bad), and one trick I do is keep protein shakes handy. Lots of calories, very little residue and definitely helps me get through the workday. I used to drink Ensure because it was easy to digest, but now I'll just buy whatever is convenient and tastes good. Many people will keep a food journal to try and figure things out, but I didn't-sometimes it was just too hard to figure out so I would just play it safe. Most of the time though, if I wasn't feeling well it meant I didn't feel well enough to eat much anyways.

So sorry your daughter is getting this so young. Please encourage her to get on this site and look around if she isn't already. I didn't have the luxury of this website back then, but if it had been around I would have been in a much better state of mind.

 

[kimmidwife]

Just wanted to say welcome to the forum. I don't have a lot of experience with modulen as it is not used in the USA. We tried en but Caitlyn could not stick with it. I would definitly get in touch with your doctor and let then know what is happening.

 

[Farmwife]

Hi and welcome.
Sorry to hear the set back she's had.
You've been given some wonderful advice.
Welcome aboard!

Farmwife

 

[crohnsinct]

Hi there and welcome. My daughter just finished a 6 week course of exclusive formula back in July. Reintroduction was tricky for us. We hit a few blips where it seemed her symptoms were coming back but then it turned out to be just reintroduction going too quickly. Compared to how they had us reintroduce it seems yours is going very quickly. O's first two weeks all she was allowed was boiled chicken and rice...easily digestable and all of her formula. Then we only added 1 item from each food group a week and cut out a little formula. Week three we added melon, bread, cream cheese. And slowly ever since...we are still no where near sausage. We were in contact with her doc and nutritionist the whole time and she was also on Remicade so I would say a quick call to the doc wouldn't hurt.

I know it is hard for the kids because they are sooo excited to eat again but slow and steady wins the race!

Good Luck!

 

[Tesscorm]

Hi Catfan2,

Welcome to the forum! I'm glad the modulen has helped her so far, you must be very proud of her - it's certainly not an easy treatment to take on! Hopefully, the setbacks are only temporary! My son did six weeks of exclusive EN and then reintroduced foods. EN continues to be his maintenance treatment, however, a regular diet has been added back. This was the reintro schedule our hospital's dietitien gave us:

The reintro was done in stages (although each step says 3-5 days, I usually stuck closer to 5 days):

3-5 days - reintroduce 'white' foods - white bread (any type), rice, pasta, rice krispies or plain cereal (very low fibre, no milk), plain muffins, broth. He was allowed small amounts of toppings - i.e. a LITTLE bit of butter, nutella, low fat cream cheese, strained tomato sauce.

Next 3-5 days - low fat proteins - any type but I stuck mainly with chicken, fish, eggs.

Next 3-5 days - fruits and veggies - soft fruits/veggies, no skins, no membranes (skin around orange 'segments')

Next 3 - 5 days - low fat dairy - milk, cheese, etc.

And then all else as tolerated. Foods that I thought might be tougher to digest (steak, beans, etc.), I started later and gave him just a little the first time, a bit more next time, etc.

His only permanent restrictions are no seeds (sesame, sunflower, tomato, etc.), no popcorn, no nuts (nutella or peanut butter okay, just not pieces of nuts).

You mentioned mushrooms... my son doesn't like them so no 'experience' but I have read on the forum that mushrooms are tough to digest.

I hope that helps!

Good luck :ghug:

 

[catfan2]

Thank you very much everyone for the welcome and advice. It's a relief to talk to people who know what you're going through. Friends and family, though sympathetic, can't begin to understand what it's like. I spoke to the dietician at the hospital the other day (the consultant she's been seeing is on holiday!) and she advised to carry on with just the Modulen for a few more days, then try again with a little food. She said just try one thing a day, not several, so I'm thinking maybe mashed potato would be good? The booklet I was given said not to introduce wheat until week 2, and dairy until week 3, does that sound right? It's a shame because yogurt might be something that doesn't irritate her. My daughter said tonight 'I don't actually want to eat again if I get the pains.' She's still having them, though not as bad as a couple of days ago, and her stomach is making such loud noises!

 

[Patricia56]

Hello Catfan2,

Welcome. I'm guessing your name means you like cats. Same here although dogs are a close second

My suggestion is to do yogurt actually. Yogurt, plain white rice and make sure she is getting enough water. The ricicles are probably OK - they're basically rice. Plus I would suggest she continue the Modulen at the regular or very close to the regular amount.

I definitely would not do the sausage, raw mushrooms, anything with corn syrup or gluten (which includes wheat and most bread/cereal products) for now. I think in UK you don't have many products with corn syrup in them but here many foods including yogurt have corn syrup.

If you are buying yogurt at the store get plain yogurt and flavor it at home with plain sugar or golden syrup and a little bit of flavoring like you would add to cake frosting. Vanilla extract for instance or vanilla powder would be things I might use here in US. If you can make her yogurt at home then I would do that.

Adding probiotics to her diet may help a lot. Here in the US that is becoming pretty standard. I suggest you ask her doctor or the dietician about it. Eating yogurt is one way to get probiotics into her gut which is one reason I suggest it.

Did her doctor do any lab tests before she started back on food to check and see if her CrP was down? If not, you might want to ask about doing that. If it's still high then I would think her gut isn't ready to re-start food and she should stay on the Modulen for now.

My son did enteral nutrition or EN (the same as doing Modulen or doing only liquid formula and no food) twice in the first several months after his diagnosis at age 10.

The first time it was great. His symptoms improved within just a few days and it was obvious he was doing much better.

Unfortunately, as soon as we reintroduced food he immediately got worse. In his case, he had inflammation throughout his small intestine and colon including his rectum. His GI did a sigmoidoscopy before he started back on food (she didn't believe in using EN) and his lower colon was perfect. Within 2 weeks of him being on plain rice and chicken his colon was inflamed again.

So, for him, there was no option but medication. He did do a second round of EN following three hospitalizations for obstipation when his gut shut down and all peristalsis stopped. The EN got things moving again and a few weeks later he went on Humira.

I think it's too early to come to that conclusion with your daughter.

Best wishes.

 

[emmaaaargh]

I don't have much advice to offer at this point but I DO want to offer my best wishes and to congratulate your daughter because I tried Modulen two or so years ago and it was foul. Hope everything improves soon!

 

[catfan2]

Again thank you for the replies, I'm very grateful. After going back to Modulen and nothing else for 4-5 days, my daughter's pains have gone again. I have bought some soya yogurt and honey to flavour it, and plan to give her some later (first day back at school today after the summer!) I'm so hoping she doesn't react to it. How much should I give her to start with? This is all so new and confusing! I meant to mention that she also takes one 50mg tablet of mercaptopurine per day. When I collected the latest prescription, the pharmacist said she had to have regular blood tests while taking this. Due to non-communication from the hospital and her paediatrician being away, the last one was 4 weeks ago. We have an appointment next week, I guess it's OK to continue with the tablets until then?

 

[my little penguin]

I would call and request they send the lab slip to you.
Blood draws at least every two weeks in the beginning are necessary to help protect the liver .

 

[DustyKat]

Hi catfan and :welcome:

I am so very sorry to hear about your daughter...:hug: My daughter was also diagnosed at 14 and although her treatment took a different path I well understand what a difficult age and time it is for them.

You have been given fab advice already about EN and the reintroduction of foods. You may also like to have a read of happy's thread, it may give you some additional insight and ideas...

http://www.crohnsforum.com/showthread.php?t=31028

Your daughter's bloods should be being monitored more frequently than it currently is. As mlp has said at least fortnightly at this stage although weekly is norm here for the first 4 weeks. I agree with requesting bloods be done now and at least that way the results will be available before your appointment next week. Since her disease is located in the small also request they do B12, Folate, Iron stores and Vit D if they haven't already.

Just for reference these are the tests that my children have every 2 months:

FBC - Full Blood Count
LFT's - Liver Function Tests
UEC's - Urea, Electrolytes and Creatinine
CRP
ESR
B12
Iron Stores
Folate
Vit D

Ensure you get copies of the results for your own records.

Good luck with the appointment next week and let us know how you get on. I hope things stay settled for your daughter, bless her...:hug:

Dusty. xxx

 

[catfan2]

Thank you :sun: I phoned her GP and requested she call me, which she did yesterday, and we have a blood test arranged for this morning. She said that the results should be back by my daughter's next appointment, so that's good. The past two days I have given her some plain soya yogurt with honey and some more Ricicles. So far she's had no pain or gurgling, so fingers crossed! I'm going to give her some plain boiled rice later. Why does this feel that you're walking a tightrope all the time?

 

[Patricia56]

Hugs from one tightrope walker to another.

You'll get your balance but it does take a while. Hopefully it won't take more than a year or two (wish I was joking).

In the meantime, it may help to remember that you are not alone in your struggle to find your balance. Many kids like your daughter are living happy, productive and relatively healthy lives and she will too one day. Just not yet.

 

[Sascot]

That's good that she is doing ok with the food this time! It did take a few weeks of eating before I relaxed enought to not worry every time my son had something new. Poor boy loves pepperoni pizza, but a didn't let him have that for a couple of months afterwards. Good luck with the rest of the reintroduction of food!

 

[DustyKat]

Oh hun...:hug:...it surely is like a tightrope but is does ease up and becomes more like a plank! :lol:

It can't be just me can it??? but I think there is no greater satisfaction than a parent seeing their child eat and with a hearty appetite at that! I don't know but for me it is so heartbreaking to see my child lose their appetite or be denied the foods that they love so dearly...(((sigh)))

Dusty. xxx