Daughter 17 just diagnosed

[Arttillygirl]

Vegetarian with occasional cheese in meals now for three yrs, Mono and strep in May so antibiotics, sonogram in June for pain, rectal bleeding 4 weeks now diagnosis.

I dont know what to do next. She's on antibiotics and steroids temp. She's going to start eating chicken and eggs for protein. Beyond that?

I hear about surgeries, colostrum bags, and am very worried. Worry about her now pre existing condition at a young age and her future insurance problems. She's valedictorian so I worry about her senior year she just started, how much is too much stress?

We are ready to eat healthier or try alternative ideas, what should we be doing now?

 

[Thermo]

Welcome to the world of Crohns! The best advice is to know that each case is different, what works for one person will not work for her. With that said it is possible to find the right combination it is just going to take years and lots of research and trial and error, oh and money unfortunately the doctors and tests are not cheap. It really depends on how bad her disease is and the location of where its at. Can you let us know what tests shes had done and the level of her disease activity and symptoms. Other than that if you are able to make a quick lifestyle change and stick with it there is a high possibility you can prevent further damage in her stomach. Diet, probiotic, maintenance medication, stress management, vitamin supplementation all play a big role in the disease it's just going to take some tailoring.

 

[Catherine]

Hi

I am the mother of 17 year old dx January 2012. All I can say is how much my daughter health has improved since her started treatment in February.

The parent forum here is great.

 

[Tesscorm]

Hi,

Welcome to the forum. It's very scary and heartbreaking when the diagnosis is new and you just don't know what to expect! But, as your daughter's symptoms improve and your knowledge and experience grow, it won't be as scary. There are wonderful members here who are a wealth of information and their support is incredible. Please look to the Parents of kids w/IBD forum - you will find many parents who understand your worries and will help you find your way through the diagnosis, treatments, etc.

As was said above, everyone is different, symptoms vary, treatments vary... Try not to become overwhelmed by others' experience with Crohns as your daughters may be very different; try to focus on hers and, for now, take things one day at a time. :ghug:

My son was diagnosed just before turning 17. His treatment was Enteral Nutrition to induce remission and, as a maintenance treatment, it has relieved his symptoms since last May. This is a liquid diet that provides all necessary nutrition, no side effects, allows bowel rest, etc. When used 'exclusively' (no food, only formula) for a number of weeks, it is as successful at inducing remission as steroids. However, as your daughter has already commenced steroids, you may want to consider nutritional shakes simply as a supplement (with her 'food' diet) to help rebuild her nutrition, weight gain, etc. There is a Treatment forum which will offer you lots of info about EN and other treatments.

As with everything else related to Crohns, diet is very individual. My son has been told to avoid all seeds, pieces of nuts (ie smooth peanut butter is fine), popcorn and limit veggie/fruit skins but all else has been fine for him. But, I believe many have problems with dairy, glutein and high fibre.

Again, stress is individual too :ymad: but many do find that stress aggravates their symptoms. As frustrating as it is, much of this disease is learn as you go! :ymad:

Feel free to ask questions!!!

Good luck!

 

[michaelearnest]

Eating Right with a Bad Gut, go buy the book. If you can get the stress level down to zero, it helps. Crohns deals with people in different ways, I have had it for 25 years now, 1 surgery and no bag. (knock on wood) I eat grilled foods, no deep fry. I eat lots of grilled chicken, plain baked potato, mashed potatoes, oatmeal. I have found that when I eat out, I try to go to places who cook with peanut oil. Peanut Oil is what made the fast food place called Five Guys hamburger joint a success so far. Peanut Oil is much more expensive and that is why most fast food places don't use it.
Keep a daily log of what she eats and what she can and cannot tolerate. Stay involved with the forum and get her involved to ask questions to us that she may not want to ask you. She can log on anonymous and ask questions that people usually shy away from, but trust me whatever she will ask, one of us has encountered it.

Is she an athlete?

 

[723crossroads]

Vegetarian with occasional cheese in meals now for three yrs, Mono and strep in May so antibiotics, sonogram in June for pain, rectal bleeding 4 weeks now diagnosis.

I dont know what to do next. She's on antibiotics and steroids temp. She's going to start eating chicken and eggs for protein. Beyond that?

I hear about surgeries, colostrum bags, and am very worried. Worry about her now pre existing condition at a young age and her future insurance problems. She's valedictorian so I worry about her senior year she just started, how much is too much stress?

We are ready to eat healthier or try alternative ideas, what should we be doing now?

I heard fecal transplants work wonders. I know it sounds gross, but if it works, it's worth a try! God bless you all!

 

[Arttillygirl]

Hi there, thanks for the support.
I brought my daughter home from school early b/c of pain. She's sleeping now.
The dr called with biopsy results and thinks it might be Ulcerated Colitis but in the same breath said maybe not. We see her on Thurs.
She ended steroids and started Asacol today.
She says this is not food related. No raw foods but otherwise lots of protein. She was eating chicken and rice and then I made some homemade applesauce. We are so confused and she is afraid to eat although she's hungry. Doc did say no stimulants and my daughter had some chai tea yesterday and hot chocolate today. So well stop that imm. She had spinach omlette with vegan cheese and liked that but I made it again and it seemed to hurt.

So baked potato with vegan sour cream, hummus and pita chips, rice vegan pizza with spinache. How do these sound?

Btw she is not an athlete but fit. We're going to resume yoga when we can

 

[Tesscorm]

Hi Arttillygirl,

As my son hasn't had problems with his diet, I don't have much experience in what will help and what won't But, low fibre and low residue diets would probably be best for now. I've read of people talking about the BRAT diet (bananas, rice, applesauce and toast) when flaring badly. Also, if all foods are hurting her right now, consider nutritional shakes in their place for a day or so (I wouldn't be on longer than that without speaking to her doctor).

Vegan pizza - veggies can be tough for some people, not sure if this would be a problem for her. Is the fibre high?

Hot chocolate - some people have a hard time with dairy too. Was it made with milk?

When my son was reintroducing foods after being on the formula only, his first stage was 'white' foods (very easily digested) - white bread, plain cereal (no milk), plain crackers, plain muffins, pasta (he was allowed a little bit of toppings like low fat cream cheese, strained tomato sauce). I remember a couple of his meals were broth with pasta, toasted tortilla dipped in strained salsa, low fat cheese in toasted tortilla breads. When my son reintroduced proteins, we started with chicken, fish and eggs.

Also, have her eat small meals, more frequently if she's hungry and to chew the food well.

Have a look through the Diet, Fitness subforum for more info.

As for yoga, I have read that yoga can help!

Hope she's feeling better!

 

[xmdmom]

My 19 year old son was mainly vegetarian before diagnosis. He has added chicken but eats greek yogurt, tofu and peanut butter for protein. Juicing greens has been away to get some good nutrients. He switched to lactaid milk. It seems to be trial and error. He was diagnosed at the end of May and is still figuring out what he can and can't tolerate. It's different for different people and probably different depending what part of intestine is involved. I found this thread http://www.crohnsforum.com/showthread.php?t=17707 particularly useful.

In terms of stress, mindfulness practices such as meditation are useful. And sleep is important too.

There's a lot of information out there and some of it's conflicting. It can be overwhelming so pace yourself.

I hope your daughter feels better soon.

 

[Thermo]

Here is a food topic that was just started, it has some great ideas but if you notice a lot of the same kinds of food are mentioned.

http://www.crohnsforum.com/showthread.php?t=39963

 

[amien]

Hi,

im currently in college and taking a semester off because of my crohn's the stress and crohn's caused me to perform subpar in alot of my courses.

all i can say is that her health is very important rather than striving to be the vv.
yoga meditation long walks have helped me greatly at times of stress and another thing would be planning and appropriately allocating her time, so she's not cramming everything the night before.

i see crohn's as an adventure, finding what works best for you and gaining knowledge about what you have, eating the right foods, and cleaning up the diet, and also exploring it from different perspectives. not just resorting to humira and remicade (dangerous long term effects and extremely expensive if one day theres no insurance)

I wish her the best of health and luck, and any advice you can pm me!

 

[Thermo]

not just resorting to humira and remicade (dangerous long term effects

I know you mean well but I want to clarify something, for the majority of the people who are on Humira or Remicade they have a vastly more advanced and destructive disease than the traditional patient who responds to 6mp or diet change. In most of these cases these people have fistulating Crohns disease and they actually do more damage to their body by not being on a biologic. I also wanted to ask if you have read the drug facts of a biologic? They give you the odds of contracting any of the rare diseases listed and to be honest it is very low. These are safe drugs that serve a purpose and should not be looked at as 'giving up' or 'resorting to' as stated/implied.

Like I said I know you are just trying to help so I know you didn't mean it to come out like that but just know that Crohns is a heterogeneous condition with different pathological behaviors just because you are able to manage it with a holistic approach do not think that the same logic holds true for everyone and every stage of the disease.

With that being said I applaud you for taking such an active role in your Crohns and really searching for what will work for you not just what someone else tells you. I really hope you can get someone to prescribe LDN and I hope it works for you! I recommend trying to contact the doctor back east who is participating in the research as they most likely can recommend someone participating in your area.

 

[amien]

Hi,
sorry if my words hurt or implied anything negative, they were not meant to do that. i was hoping since your daughter is young and newly diagnosed it wasn't as serious.

I'm all for the patient making the educated choice and knowing and researching what options they have and options they have given them. Once you do start whatever regimen you know what your getting into instead of not knowing a thing.

ive had crohns for 10 years every GI except for one has told me i should resort to humira/Cimzia/remicade they didnt really tell me what they were besides them making me feel better. i didnt even have the d and was feeling fine. they can cause serious and life threating side effects. and there are law suits against them! beware of tha fat cats
http://www.oshmanlaw.com/pharmaceutical_litigation/remicade.html
im sorry but my crohns can get bad, but with anti-tnf blockers i certainly dont want increased risk of cancer and crohns. imagine battling that.

but thats my opinon, whatever you do i hope that its an informed decision and wish the best for you and your daughter. atleast now she's diagnosed and know what she has. and there are plenty of resources online, books, and groups to hopefully cope. :ghug:

 

[Thermo]

Amien I am not the original poster of this thread. Lets look at some facts, because those don't lie (Unlike lawyers). Due to your Crohns you have a 20 times greater risk of cancer versus the general population however this is only a 1.2% increased risk. The increased risk of lymphoma and leukemia while taking Humira is 3 times greater versus the general population which is .1% or .6% depending on which study you look at. You stand a far bigger chance of getting cancer just because you have Crohns but the risk is still small. You are telling people that because someone developed a rare side effect that nobody should use a potentially life saving medication. While it certainly may not be for you and while I implore you to reconsider and experience what a true remission feels like, it is not for everyone and I applaud you for your conviction. However don't detour other people from trying it by spreading hearsay that its vastly more dangerous than everything else Crohns patients are exposed to. You stand a higher risk of dying from a car accident (1.72%) than Humira

Biologics bind to Tumor necrosis factor Alpha which prevent it from binding to Tumor necrosis factor receptors TNF among one of its responsibilities is apoptotic programmed cell death which is responsible for the death of 50-70 billion irregular cells in your body per day. When you remove this capability of your body you have an increased number of irregular 'potential' cancerous cells in your body. Without an effective backup plan this is your increased risk of cancer. What I was trying to explain to you in your advice post about naturopathy versus western medicine was if you identify how you can balance out taking a biologic or 6mp with cleansing your body and free radicals you effectively reduce your risks to zero even while having Crohns and taking Humira.

I still know you don't mean to come across negatively but I find some of your comments somewhat dangerous to impressionable people looking for help. Crohns is a rare disease and requires rare treatments in order to keep it in check. There are risks in everything we do each person has to balance for themselves quality of life/toxicity.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700422/

 

[amien]

I'm sorry but i dont want to be putting a drug in my system that has several "black box warnings" from the FDA (whom is conducting safety reviews), many cases of deaths, cancers of various forms, deadly infections, lymphoma, tuberculosis, and triple increase in cancer if your under the age of 18. no long and wide range studies done atleast 10 years with a greater population. Remicade generates $1billion dollars for J&J (6%), many lawsuits, costs around $10,000 a year. if it's a once or twice infusion because of fistulas i wouldnt mind, but not long term. over my dead body.

-i was just trying to let her know to have all options available and making an informed decision since when first diagnosed i myself was lost. (if she has to and wants to take humira/remicade than atleast know what its about, costs, risks, benefits) and weigh the pro's and con's.
-im NOT recommending her to take or not to take

and i dont have a post about cancer/6mp/naturopath or w/e

have a good day :thumleft:

 

[Thermo]

As my mother would say "You can't reach everyone" good luck I hope you start seeing medications for what they are instead of what they could be.

This is not your post?

http://www.crohnsforum.com/showthread.php?t=39862

 

[amien]

and respecting others opinions.

im not sure why your taking it as a personal attack just because your taking humira? everyone has their opinions and they must be respected. not broken down and attacked for various reasons.

im not sure why
"not just resorting to humira and remicade (dangerous long term effects and extremely expensive if one day theres no insurance)"
got you upset?

-a patient should be smart and aware of all possible treatments and options available and what their getting themselves into.
and those are both facts. they do have potential dangerous side effects and also very expensive esp if insurance wont cover or she doesnt have insurance.

-maybe instead of attacking me, you couldve explained your view point and how you manage to ward of the increased dangers and a way of addressing the costs?

-and for the last thing, yeah that was "my story" thought you meant another post. but i did respect your opinion and THANKED you for it! i didn't necessarily agree with it, i didnt start 6mp/imuran. but thanked you for your input/advice.

-if this forum is about attacking other's view points and not respecting them while their trying to help another sufferer, than this is not the place for me.

 

[Thermo]

Never once did I attack you I apologize if you feel like this. The intent of any forum is to discuss and up until now I was assuming that's what we were doing. I made sure your feelings were not hurt in each one of my posts what more could I have done? The reason, as I have stated several times I chose to respond directly to your comments was due to the generalization of your claims that a drug that has helped hundreds of thousands of people is inherently more dangerous than other medication for a myriad of illnesses that people face on this planet. Choices have consequences and if you do not give people facts in order for them to make an educated decision you are doing them an injustice. So when you gave a generalized statement about TNF blockers, lawsuits and warned people 'beware tha fat cats' I responded with cold hard facts so people could decide for themselves if the benefits outweighed the risks. I see nothing wrong with what I did, and honestly it is the quintessential definition of a forum.

maybe instead of attacking me, you couldve explained your view point and how you manage to ward of the increased dangers and a way of addressing the costs?.

This is why I posted "As my mother would say You can't reach everyone" because you either don't comprehend what I'm writing or didn't read it, either way is fine with me but I already explained this when I discussed apoptotic programmed cell death. If you choose to leave this forum based on a simple disagreement of viewpoints with one person I strongly suggest you reconsider this as the benefits of this forum far outweigh a simple disagreement.

P.S. The risk of catching Tuberculosis is 1.6%

 

[amien]

http://www.nasdaq.com/article/update-fda-questions-benefit-of-humira-in-bowel-disease-20120824-00309

 

[Thermo]

Nice article about Humira being considered for FDA approval for UC treatment.