My daughter just diagnosed with crohns. Please encourage me!

amother

White

Tue, Apr 04 2017, 8:00 am

amother wrote:

If what I write is not helpful op please just write "that was not helpful" and I will delete it. But you asked for encouragement so that's what I'm trying to give.

I know nothing about Crohn's disease. But I do know that when Hashem sends us terrible horrible painful yucky things like this it is SOMEHOW for the best. I'm only bringing this up for you because you yourself realise that the Doctor is a shaliach from Heaven. And to be able to say that IN THE MIDST OF SUFFERING shows that you ALREADY have a deeply developed level of emunah.

Although this thought may seem impossible, the more you can train yourself to accept that the DISEASE ITSELF is also from Hashem, the less suffering you will have, even where there is terrible (emotional and physical) pain.

Try to let go of "what ifs". They are not helpful to you or your daughter. Just do what you have to do and do it calmly, and trust that everything will be ok, because it will be ok. Try not to worry about the details too much.

Big hugs. May you grow from this terrible experience.

Your post was actually very very helpful, forestgreen. Thank you for your insight. It helped.
I do like pink fridge's take on the situation being "challenging" rather than terrible, from your perspective.
I do keep thinking of it as terrible-but the whole point of is thread is for me to hear from people convincing me that it's really not so bad. Smile

amother

White

Tue, Apr 04 2017, 8:03 am

amother wrote:

Hi, so I personally don't have any experience in it but a while ago when I was dating, I was suggested a guy who had Crohns. I was interested in going out with the guy but I didn't really know so much about Crohns so I did research about it and when I asked people I knew if they know what Crohns is, I found out that almost everyone I asked knew someone who has it and they all told me not to worry at all and to go for it. So what I found out about it is that people with Crohns live a totally normal life except for the fact that they have to avoid certain types of food. There is also a lot of information about it online. Crohns is something very common. By the way if you are wondering what happened with that guy that I was suggested to, so we ended up going out and I really liked him but it ended up not working out because of our differences in hashkafa. Soon after we dated he actually married one of my friends who is one of the nicest and sweetest people I know. And I was very happy for them.

Your post was encouraging. Thank you. It helped to hear that so many people you spoke to knew someone with it, and that the overall reaction wasnt flipping out at the thought of dating someone with it...

PinkFridge

Tue, Apr 04 2017, 8:27 am

Forestgreen, don't change a word!
I don't mean to be callous. It is very valid to feel terrible, there may be painful moments, and it's not healthy to suppress them with, "Well, at least it's not xyz." We just can't define the experience with words like painful or terrible. And I think we all agree on that.

I mean, we can all talk as adults about how we had colonoscopies, and it wasn't horrible, etc. But to see a 6 y.o. go through that? (Not to mention genuine pain and discomfort, dietary restrictions, etc.) I say this as someone very close to some parents whose kids have Crohn's, and, having had a tonsillectomy when I was six, I remember the hospital, needles (though I had gas), etc. This is definitely going to be transformative in everyone's lives.

amother

Mistyrose

Wed, May 24 2017, 4:55 pm

. I have two children who have Crohn's. My older dd was dx'ed at age 8 and is now 19. Younger one dx'ed at 7 and is now 14 (today she said to me, "Wow. I just realized I've had Crohn's half my life". And then I had a weird feeling inside thinking about how every day from now on, she will have lived more of her life *with* Crohn's than without....)

Anyway, older dd was on SCD for five years, from 8-13 years of age. It was a total miracle for her. She spent two years totally med-free during that time, and much of the rest on very minimal meds. We actually decided that we must start her ASAP b/c she was so young and we would have more control over what she ate. Also, at such a young age you can tell play-date parents what your kid can eat in a way that is super not cool once they're older Wink

. At 13, my dd wanted to eat pizza with her friends etc and she slowly transitioned off it.

Younger DD did SCD for 11 months, but it was crazy hard for her b/c she's allergic to nuts and also is a vegetarian. In the end, although it helped her Crohn's, we took her off b/c, without animal proteins and nuts, SCD is not a very nutritionally-complete diet (imo). This dd is now in a bad flare and just started the IBD_AID diet referenced above.

------
The test you are referring to is Fecal Calprotectin (Cal-Pro). It might be the perfect test for your dd, whose blood markers were normal.

----
Wishing your dd a refuah shleima and may you look back on this time as a mere bump in the road of life!

And a big thank you to all who posted about shidduch issues/non-issues. As my dd comes closer to starting, I found your comments very helpful!

amother

White

Wed, May 24 2017, 7:10 pm

amother wrote:

OP here. Thank you so much for this reply. Yes, thank goodness her fecal calprotectin levels were very elevated, so they do have something to compare to to see how well shes doing...

Her doctor is BH open to trying nutritonal approaches, with the understanding that if it doesnt work she needs to be medicated.

We just finished trying something that didnt work. She ended up flaring and needing steroids...the doctor agreed to try again...and she flared again, needs steroids once more-more than likely she will be put on meds for crohns now.

Her dr is totally fine with us trying the scd diet, and trying to wean her off meds, whenever we want to try it. I just dont feel I can do it at this point. I need her to be older, more mature and happy to do it, as opposed to feeling forced -which she defnitely will feel. It was hard enough asking her to limit certain foods for a bit...

I have one question for you. You said your older daughter was on scd and then transitioned off it-what happened then? Ive heard of people who weaned off it and were able to be med free and eat whatever they wanted...did she need to go back on her meds?

Also, the medication the dr had mentioned that we would try if the experiments failed ( which they did) was "a low dose of 6mp". Any experience with this med? I know I shouldnt have googled it, but I did, and I read about hair loss and a bunch of other freaky things...

Thanks!

amother

Babyblue

Wed, May 24 2017, 7:46 pm

My son went on 6mp. He stopped taking it when it was no longer deemed to be therapeutic. IOW he was taking it but it was making no impact. B"H as an adult he's been off meds for a few years and is doing well.
Yeah, 6mp is scary. I don't know if you can avoid it. Look into avoiding Remicade or other biologics if she's on 6mp, it's when patients are on both together that some of the scarier side effects are more likely (and even then, not terribly likely).
A top GI said that 6mp leaves the system after 6 months of stopping it. And that there might be evidence that aggressive treatment early after diagnosis can be important for pediatric cases. But all this is stuff for you to look into yourself.

amother

Hotpink

Mon, Jun 05 2017, 10:21 pm

OP, I've been on 6mp as well (as another drug) for about 23 years. Yes, there are risks and I had to have bloodwork done every few months for the first few years, but I've been in remission since then except for the one period when I decided to stop the 6mp and try controlling by diet . I ended up in the hospital on IV steroids then. I went back on 6mp and have been fine. No hair loss, no liver problems , but I can't eat anything with raw egg, raw cheese, or raw milk. That's ok. I also have to be careful about what vaccinations I can have so talk about that with you DD's dr.
Crohn's is autoimmune-mediated. You can't "cure" it but you can go into long-term remission. I wish your DD good health and much happiness. It's tough but doable to manage Crohns in most cases.

amother

White

Mon, Jun 05 2017, 10:44 pm

amother wrote:

Op here.
Thank you, thank you for saying this. Can I ask how you figured out that you cant have those foods? What made you think it was certain foods vs "this medication isnt working"?

amother

Hotpink

Mon, Jun 05 2017, 10:54 pm

If your DD has to take 6mp or certain other drugs, they'll explain it to you. 6mp is an immunosuppressant so people taking it are more susceptible to bacteria such as ones sometines found in unpasteurized milk products, etc. What might give you diarrhea abs nausea for a day could land me in the hospital because the drug gives me a compromised immune system. That's how it can control the
Crohns. I just make sure my eggs are cooked and milk and cider pasteurized. I don't eat raw meat. I can't have a yellow fever vaccination. None of these have made much difference in my life!