Worrying Mom

[M2M]

I am new to this and I am so glad I found this site. I have been web searching for over 2 months now; looking at diets etc. for Crohns.
My beautiful 23 year old daughter was diagnosed mid February. She had a fairly quick diagnosis. Started with symptoms in January; went to doctor on a Tuesday; had blood work; Friday CT scan; next Tuesday; went to a specialist for Crohns and Thursday of that week was having a colon'spy that confirmed her diagnosis.
Since then; we have been going to the doctor; being put on meds..some work some surely don't.
I am so scared for her although she is doing pretty well; considering.
Pentasa didn't work for her; it ended up giving her a pancreatic attack and we ended up in hospital for 4 days. So then she just continued on with Metronidazol; Entocort and Cipro.
Back to the dr's in March and he started her on 6 MP; sure enough 2 weeks into it; she got sick again; so he said she won't be able to take those "maintenance" drugs.
She was pretty small to begin with but now is down 10 - 11 lbs; so now weights less than 100 lbs.
however she eats; small amounts thru the day but doesn't seem to gain.
She is on vitamin supplements thru MarketAmerica; Isotonix multi vitamin and OPC-3.
Obviously, she stays away from all raw veggies; most fruit except bananas and all high fiber food.

My biggest question is if she eats something that does affect her inflammation; will she know right away.
She doesn't seem to have issues with lactaid products however when i make her homemade mac & cheese and stuff I use lactaid free products b/c I am scared that certain foods will build up and all of a sudden she will have inflammation again and get sick?
Or is it basically if you eat something and it doesn't agree with your crohn's you know right away??

We are so new to this and I am so thankful of this site; I have already kind of looked around and there is so much helpful info on this.
thank you so much

 

[Jer's Girl]

Hi M2M!

To my knowledge, food doesn’t cause Crohns, but it can bring on symptoms. My Philosophy is that you should eat what you can while you can so that you can reach a healthy weight and get the nutrients you need, and be more careful about food when it hurts you physically. We are all different on what we can tolerate around here, so I say if she can tolerate it, it is okay. If she is in a flair where all food hurts her, it is a good idea to try Ensure to help her get nutrients and to help increase weight, if she can tolerate dairy. Hope that helps!
Welcome to the forum!

 

[M2M]

Thanks; I did actually buy her some Boost; which is a supplement drink and has almost 400 cal and no dairy and no fiber. she has been trying to do at least 1 of those a day.

 

[Jer's Girl]

It is hard to get anything down when you are feeling so bad, I know. I'm sorry that you both are going through this.

 

[Liamsmomma]

I know for me Diet is truely a key to me feeling good.. I drink Ginger tea (yes it is not great but if you put some honey and lemon it it the taste gets better) this usually helps with the nausea and upset tummy. From there I eat what I can safely eat. Quinoa is a great thing to try. It cooks like rice and you can season it however you like.. also Speghetti squash is also easy to digest.

 

[kristen]

They have gluten free and lactose free ensure and boost..Me personally I hurt as soon as I eat anything,even crackers so I am only drinking..My stomach swells up when I eat curious to know does anyone out there have swelling?

 

[Runninglady]

Hi, we keep our little girl on gluten/dairy free diet and find it a big help and seems to help her. As for the swelling I can only buy adjustable trousers skirts etc as during flare ups she can swell up to 3 inches! I hope she's feeling a bit better tonight. X

 

[xJillx]

Hi and welcome! Your daughter is lucky to have such a concerned mom! Has your daughter found any treatment that seems to help? Maintenance medication is very important to get and stay well. Be sure to tell her even when she is feeling good to remain on her medication.

As for diet, it can be really tricky as we are all different. It would be so much easier if there was a guide for all, but there is no such luck. What has helped me is keeping a food diary. I write down what I eat and track symptoms. It can take some time, but you will hopefully see patterns and discover your no-no foods. I am lucky as I have had to only avoid a few things - deli meat, spicy foods, and salad. I also avoid things like nuts, corn, and popcorn because many have issues with these.

 

[ameslouise]

Hi M2M and welcome!

Ditto what Jill says above. We are all different and how we react to food and meds differs for each one of us. Remember that food cannot CAUSE or CURE Crohn's but it sure can affect the way we feel on a daily basis!

I was also taking the Isotonics from Market America, including the OPC-3. I am having trouble with it since after my surgery - it goes right thru me - it's like pouring it directly into my ostomy bag! But I do like their products and I think the Isotonic stuff is a great way for those of us with absorption problems to get their vitamins.

Good luck, hope youre daughter can find a med that works for her. Has she discussed Remicade or Humira with her docs?

- Amy

 

[M2M]

There was a brief discussion re: Remicade. We were hoping the 6MP would work. After taking the Pentasa and then ending up in hosptial for 4 days w/that reaction we were scared. The doctor said he would leave her on 6MP for up to 5 years to get in a deep remission; however after 2 weeks she was vomiting. It takes about that long to get in your system. He had told us that if she had a reaction to that; she would probalby have a reaction to any type of drug in that line.
So b/c she has only been 2 1/2 months diagnosed and on Entocort and the 2 antibiotics; which all seem to be working ok for her. She is scared to eat too much so she does numerous small meals throughout the day.
OPC3 has anti-inflammatory agents in it; so I am hoping that is going to work well too. I also hear acupuncture has some great treatments for this. We will be looking into that also.
thank you all again so much. It is so nice to get some good advice

 

[Liamsmomma]

I have done acupuncture and I truely feel it helped alot (with the correct diet) I had to go back everyweek for three weeks to maintain longterm help (two years) but when I only go once and dont go back the next two weeks I start to have the pain and cramps again within two weeks.. I wish your daughter luck. I know it is very difficult to deal with. I know for me I make rice (not instant but real rice)
then I take and egg and scramble it (with out milk) on a fry pan,
add a table spoon of unsalted butter,
mix in the rice and add a little seasoning (which ever she can handle)
and I may go three or more days eating just that but the rice helps to stop things up and the egg gives me good protein. It also makes me feel like I'm eating and I get the satisfaction of not being hungry with a headache.
I wish her luck and hope that the advice we all give you will give her releif.

 

[M2M]

Oh I am so glad to hear that about acupuncture. There is an acupuncturist near where she lives that has Crohns; so once everything gets settle down a bit; I want to take her to see her.
She does eat egg sandwiches too. She hasn't had a lot of issues with food b/c she avoids salads; wheat bread; raw veggies... so she just has to remember to eat every few hours and she is on her feet alot with the type of work she does. I text her quite often.. drinking lots of water today... or re: to drink a boost ..
I don't want to say I am a PIA mom.. but this has given me more anxiety than anything else in my entire life!

 

[despo622]

Hi m2m. my daughter is 12 yrs old and has been on boost (4 a day) and pentasta for the last two years...she is developing perfectly BUT still has an inflammed colon...pentasa didnt work. Tomorrow she begins remicade infusion and i am worried sick...i will pray for your daughter and i hope we can find some kind of cure for all of this and stop all of these medications with crazy side effects..

 

[sparkles]

Hi! I'm sorry to hear about your daughter!

Knowing about which foods are good or not can be different for everyone.

For me, I was lucky enough to have a lovely dietician to guide me. She took me off all solid foods for 2 months, and instead I had a nutritional milk (kinda like baby milk) called Modulen IBD. This was great and NOONE gets reactions to it, but it's very expensive. Don't worry about this step though, it's not necessary. It's just kind of like a 'detox'.

After the two months, I carried on with the Modulen, but every few days I would introduce small quantities of new foods. I started with like a handful of rice, potato, plain chicken... simple things like that.
I would leave a few days in between each food so that I would know what the reaction was for. Sometimes I would get the reaction straight away, and run to the toilet. Sometimes it would take a few hours. Sometimes i couldnt tell till the next day. A few times, I would think it was fine, but after eating it a few more times I would realise it made me ill! It all just depends.

After a while I moved onto trickier foods like fruit, veg, wheat, dairy etc. With these foods, I would have a very small quantity (teaspoon of milk), which would be fine, then the next time I'd try a tiny bit more (two teaspoons of milk), and I'd develop a reaction!

So, basically this long essay is saying that you could try each food separately and leave time for a possible reaction. If I were you, I wouldn't bother with the modulen, I just put that in to waste time (I should be revising hahaa )
Good luck!