My daughter just diagnosed with crohns. Please encourage me!

amother

White

Tue, Mar 28 2017, 7:36 am

My 6 year old daughter was diagnosed with crohns yesterday ( after only mild bloody stool symptoms and a very positive colonoscopy finding) and I need encouragement that this is not the end of the world. I am a nurse, and knowledgable enough about this that "researching and educating myself" is not going to cut it. If anything I know too much, and have seen way too many of the sick people with complications from crohns as a nurse...

So im looking to be reassured from people who have experience with this...

Here are the thoughts scrambling through my head:
But she looks so healthy! Yeah, but she did keep having bloody stools and some cramping. Yeah, but that wasnt very frequent. Cant we just not deal with this. No-we need to deal with this, because apparently if you dont, the inflammation can get so bad she could ch"v get strictures and fistulas and need surgery and a colostomy....OMG. I do not want my precious daughter needing bowel surgery! Or a COLOSTOMY! Ok calm down it probably wont happen. Well, you never know...they say it can have its ups and downs...what if it gets way worse than this? What if shes always in pain? Is this going to take over our lives? I dont want this to take over our lives...we have a baby on the way IH and I want to be able to enjoy that! Ok, we will of course enjoy the baby...but this will be something to deal with...NO! I am so scared of what this will entail! Ok, but BH its nothing worse...other people nebach deal with so much worse....BH she is relatively healthy otherwise...so many people would gladly trade....right? Right. But still...is this going to make our lives crazy forever?

Please, if theres anyone out there that can reassure me that our lives, and my daughter's, can continue being relatively "normal" and not always stressful etc...can you please calm me down?

Thank you!

amother

Taupe

Tue, Mar 28 2017, 10:05 am

Oy. It must be so hard to hear. Crohns runs in our family - and a few siblings had - nothing is a life sentence - and our lives were definitely not upside down because of it - I don't think it affected too much of our normal running.
2 of my siblings actually had intestine surgery in their teens and it was life changing for them - they live almost symptom free years later - married with families. It was even done laparoscopy with minimal recovery.

anonymrs

Tue, Mar 28 2017, 10:11 am

My husband was diagnosed with Crohn's 3 years ago. It's a huge shock when the diagnosis comes. You can live a normal life with Crohn's. B'H my husband has been very successful with using the Specific Carbohydrate Diet to manage his Crohn's and hasn't even needed medicine. She will iyh be ok. Hugs!!

Feel free to pm me if you want to talk.

TranquilityAndPeace

Tue, Mar 28 2017, 10:16 am

Hugs!!!

I was diagnosed with Crohns about 12 years ago in my mid 20s.

There were some days that were bad and I had minor surgery to drain a cyst (that could happen to anyone but is more common with Crohns). Most days I don't think about it.

I've been on and off the SCD diet. I don't think it really helped me. Although some people swear by it. What helps me the most is sleeping properly and not being overly stressed.

B"H I lead a normal life! You can follow me on IG if you're there instagram.com/chaya_braun_photography

I just turned down a job where I'd have to be across town from 7-11am. This was the first time I ever turned down a job due to Crohns, but I often have stomachaches the first hour or two I wake up. (And it was an outdoor job and I'm trying to keep all my work in my studio) I always start my sessions at 9am or later and am fine!

IY"H your daughter will lead a very normal life!!!!

There's lots of conflicting advice out there.

The doctors push medication. I left a doctor who wanted to put me on Envitio when I was doing well. She said that nobody wants to take meds when they feel well, but that's the time to. Otherwise she doesn't know if she can help me out of the next flare. I see her point, but didn't want to take an infusion of strong meds twice a month for the rest of my life while I'm doing well!

The natural people all have diets and vitamins that promise the world.

The SCD diet is known to have helped many people. I would've stayed on it for the rest of my life, but I didn't feel like it helped me. I was just on it for 11 months. I still eat mostly healthy foods, but I don't think my system cares about which foods I eat! My skin is better when I eat healthy though!

Many hugs and hatzlachah!!! And b'shah Tova!!!

Machel

Tue, Mar 28 2017, 10:27 am

I have Crohn's and BH live a very normal life. It took some time to get it under control but once I found the medication and dosage that works for me I am able to live mostly symptom free. What I have learned is that every body is different and will react to things differently. My aunt has Crohn's and has to be very careful with what she eats. I can basically eat anything. Some people need surgery some are managed with medication.

It will take some time but you will figure out what triggers your daughter and the doctors will find the best meds for her. But she should be able to be a normal kid through it all.

Chayalle

Tue, Mar 28 2017, 10:35 am

I remember one of my sisters dated a guy who told her he has Crohn's. My sister is a med-peds (double in internal medicine and pediatrics) and she said it's not something to be super-concerned about, as there are thousands of people walking around with Crohn's who don't even know they have it.

B"EH your DD will live a normal life. As a nurse, you are well-positioned to research info and make good decisions for her.

amother

Seashell

Tue, Mar 28 2017, 8:14 pm

First off I commend you for getting this diagnosed so early and taking the symptoms seriously. Many people ignore symptoms for years and it makes things much much worse.
The thing with crohns is that it's not one size fits all. Some people can manage their crohns by diet alone, some require medications, some require surgery. Some medications works for some while for others they do not. It can be really difficult and challenging until you find the right treatment.

My husband has a very severe case of crohns. He had years where he had terrible flare ups, fistulas, abscesses and all other sorts of unpleasant symptoms. Unfortunately he ended up with an iliostomy.
Bottom line is you can make anything into "normal". It can become normal and you just get used to it and it is part of daily routine.

Iyh your daughter will be just fine and her symptoms will be managed easily, as most people's are.

Feel free to ask me more questions on the subject, I am very well educated on the topic.
I don't feel comfortable posting under my SN so I'll check back here.

amother

White

Tue, Mar 28 2017, 8:42 pm

OP here. Thank you all so very very much for posting. I feel much better about the situation.

I cant see myself making my 6 year old do the scd diet at such a young age...but I am definitely filing it away to suggest in the future. So heres to hoping we figure out her meds...im not thrilled with the idea of medication but im terrified of the complications of untreated crohns so....

Im really nervous about how we will know if its "under control" or not. When they did the colonoscopy they thought they were doing it simply to find a bleeding polyp-she didnt really have strong crohns symptoms. Just random episodes of about a week of blood in her stools (which werent always so watery, sometimes even soft-formed) and no cramping stomach aches....and her inflammatory markers in her bloodwork were normal...and then they scoped her and found a lot of inflammation... right now she started having bloody loose stools again, and she does have a bit of stomach aches that come and go...I dont know. Im just scared that she will be on medication, have mild symptoms that dont happen frequently and no real lab findings but will ch"v be having trouble inside that we are not aware of....

Although I think the GI mentioned something about testing to see if there were inflammatory markers in her stool?

Either way it makes me really really comforted, and strengthened, to hear of so many people who have crohns as something more "on the side" and not taking over their lives.

If anyone else has that experience, please post as well...I could use all the reassurance I can get that she can be ok

amother

White

Tue, Mar 28 2017, 10:54 pm

amother wrote:

There is a lot of research being done on the IBD AID at University of Mass., this is based on the SCD but with a few enhancements. It is possible to incorporate some of the elements even if you don't feel able to radically change your daughter's diet.

http://www.umassmed.edu/nutrition/ibd/ibdaid/

This is so informative, thank you!
I wonder if it would help at all to incorporate adding all the recommended foods to her diet (prebiotic/probiotic etc) while not eliminating the dairy, sugar, wheat etc... debating if I should bother trying if I know I cant do the "avoiding the bad foods" part

amother

White

Mon, Apr 03 2017, 8:53 pm

OP here. Just opened this up again to read everyones reassurances again..

BH her gastroenterologist seems to be a shaliach from Heaven...from what ive heard about most docs, she doesnt fit the mold. She spent an hour with us discussing the disease, and said that although she typically suggests medication, nothing is set in stone and she is always willing to try new ideas and diets, as long as we see that its definitely working. So that was very nice to hear.

But im feeling overwhelmed now, and im not sure exactly why. Maybe its just the uncertainty of not knowing what will end up working B"EH...and in the meantime paying such close attention to her diet and stool patterns...I get so excited when her stool looks normal and then so let down when its a bit loose or mucus-y looking...

And then I feel terribly guilty feeling bad about this because "BH its just this and not something worse..."

Anyway...thanks for listening

amother

Olive

Tue, Apr 04 2017, 1:18 am

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.

amother

Forestgreen

Tue, Apr 04 2017, 2:40 am

amother wrote:

....

BH her gastroenterologist seems to be a shaliach from Heaven.....

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.

PinkFridge

Tue, Apr 04 2017, 7:44 am

amother wrote:

I really liked your post. It's clear you're speaking from the heart, and from life experience, which I honor. And your comment on the snip of OP's post, that she is already evincing the type of perspective that will get her through this - spot on.

My one quibble is with your use of the bolded "terrible". Challenging, possibly difficult? Sure. But it's not terrible.