Newly Diagnosed and Totally Lost

Hi Jen, and welcome.

Why drug trials before you've tried the standard treatments, things like Prednisolone and Imuran? My understanding of most drug trials is that they only accept people who've been nonresponsive or have reacted to the traditional treatments.

Do you mind if I ask what country you're in, Jen? If you're in the US, what is your insurance like? If you're American, perhaps he is trying to get you free medication, as trials tend to provide treatments gratis???

I am in Michigan, USA. I have great insurance, Blue Care Network, that covers my meds (the most I ever have to pay for an rx is $11).

Hi Jen and welcome! Many folks are helped by following the Specific Carbohydrate Diet. If you wish, you can search this site and read all the threads where we've had discussions on it by putting "SCD" in the "search site" spot at the top of the page. You can also just google SCD. The main book on it is called "Breaking the Vicious Cycle" by Elaine Gottschall. Also there are many cookbooks written which are compliant and free recipes online. Part of the "diet" is making home made yogurt (fermented 24 hours to eliminate lactose) for its beneficial bacteria (for your intestines). I'm thinking of your little boys and how healthy this would be for them, too!!! Just throwing this out there...

Hi and Welcome. I was diagnosed when my older daughter was 1, she is almost 22 now. My Mom had CD too, so I have basically lived with it my whole life. As a child of a sick parent and as the sick parent. You will have times when you are sick, that is a given, but you will also have times, possibly years, when you feel great. Your sons just need to know that you love them. Even on my worst days, I could snuggle on the couch with a movie, and so can you. My daughters would play on the floor by the couch while I rested, so please don't get too discouraged yet. With the right combination of medications and figuring out the right foods to eat, you will be feeling better and playing and mothering soon.

I too am wondering why your doctor is suggesting trials before some of the more mainstream drugs. Is your doctor affiliated with a major hospital that participates in trials and therefore he has more access to them? Is your disease in a vast area or really out of control? Questions you need to find out. I really think the best thing you can do for yourself is to educate yourself about CD, but you need to understand that while all of the things you read about MIGHT happen, MOST won't. The majority of Crohn's patients are out in the world living their lives hardly giving their disease a thought except to take their medication and then go on about their day. There are a lot of books out there, some just general information about CD, which is probably where you should start, and then some that delve more into treatment options and diet options. You can get books from your library, bookstore, or the Crohn's resource center over on the right hand side of this page. Also the CCFA.org has a lot of information

You need to get your disease under control, then probably be on some sort of maintenance drug, and figure out what type of diet works for you, low residue, SCD, Makers Diet, No Gluten, there are basically a bunch out there and we all follow what works for us. Keep a food journal to see what bothers you and what doesn't, thats the best place to start.

Hi Jen

So sorry to hear that you are having such a hard time. Crohns can be like that, cant get out of bed one day and ok'ish the next. You will eventually learn how to live your life around the illness.  I agree with some of the other postings, that you should try some different drugs - those traditionally used for treating crohns before trying anything trialed.

The hair issue, my hair shows signs of stress when Im in a flare such as falling out and becoming brittle. My hairdressers always knows when I am taking steriods because my hair changes, I never have to tell her.

Talk some more to your doctor about treatment. and good luck keeping smiling (if you can)

kerry

Jen,

Welcome to Healing Well. This forum has been a great source of information and emotional release for me. There is a vast amount of knowledge and experience with this disease from those on this board. Don't be afraid to ask any questions. The only stupid question is the one not asked.

I went through a flare last year and spent 8 weeks recovering from surgery. I was always having my four year old daughter come up and lay with me on the couch in the evenings after preschool to spend my time with her. Enjoy your good days and focus on feeling better during your bad days.

I have really relied on my faith to help me through some of my more difficult time. I read Tony Dunge's book "Quiet Strength" during my recovery last fall and found a scripture from the Bible that has become my motto with this disease. It is 1 Corinthians 4:8-9: "We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed." Another quote (and I don't remember where I got it) that helps me is "Inch by inch, life is a cinch. Yard by yard, life is hard." It helps me to remember to focus on the present instead of looking at the future.

Hi Jen sorry to hear about your troubles you were saying that the DOC wanted to try trails and studies there about Remicade and Humira which someone has already said here don't worry so much about your kids getting this i had this for a long time and they still don't know what causes it. Jenn

Hi Jen. I'm from Michigan also. I like my doctor, but he knows that I will always listen to him, do my own research and then decide on a treatment plan with him. It's not always what he initially suggested but so far, things have worked out OK. Please feel free to email me if you have any questions about doctors in metro Detroit. Feel well. SB

Actually the SCD diet doesn't help everyone and it's not a cure.