Newly diagnosed with Crohn’s - looking for support, experiences, and advice

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Patients Crohn's disease

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Member Carenity
Posted on

Hi everyone! My 12 year old daughter was diagnosed with Crohn’s. I am stressed with the whoel diagnosis.

She has had constipation on and off for quite some time, but never complained of any severe type of pain. The doctors would sometimes give her some laxatives and tell her to eat prunes and yogurt. I would also purchase fiber supplies. 

I took her to another doctor and she said it was normal, that some children do not go often and may feel constipated!! I finally scheduled an appointment with a specialist who said that my daughter was to thing for her weight was too low for her height and also did some blood work. It came back that her iron was low.

The doctor also found inflammation from elevated white blood cells.  By this time she started experiencing abdominal pain?! They set up an appoint for her to have an upper endoscopic and colonoscopy. A cat scan was also done. It came back she has crohns disease! I am freaking out. Can anyone share some support, stories, what to do?

Thank you!

Beginning of the discussion - 11/29/18

Newly diagnosed with Crohn’s - looking for support, experiences, and advice
Member Carenity
Posted on

@Hidden username So sorry to hear the diagnosis of your daughter. How is she doing now? How are you doing? I wish I had more help, but I am here to seeking information. Wanted to reach out and express my hope for you and your daughter.

Newly diagnosed with Crohn’s - looking for support, experiences, and advice
1

Member Carenity
Posted on

 Hi! I am 22 and just got diagnosed with Crohn's disease a few months ago. I experienced constipation my whole life until the summer of this year. I realized I would have diarrhea depending on what I ate and drink, which never happened to me. Turns out I also have celiac. But after a gluten free diet, my symptoms still persisted. When I got my colonoscopy, it showed I had Crohn's but my biopsy came back negative which was very odd. My blood work and stool sample all backed up that I have Crohn's ileitis. My doctor said this was normal for when it is still developing. Anyways, there's a little background on me.

So although I am not 12, I am 22 and still young trying to find out how to deal with all of this. My parents are also devastated and feel so hopeless when I am in a severe flare up (still am). All I can say is, once I came to accept I am never going to be normal again, and that's okay, I feel so much better mentally. The support of my parents has helped immensely. I know they would do anything to make me feel better and seeing me go through this breaks their heart. I know they try their best to stay positive because it does help me stay positive as well. We do as much as we can to take my mind off of things and making sure there is an easily accessible bathroom where ever we go along with gluten free options. I'm not sure what her treatment plan is but I know for me Pentasa has been working with the inflammation. I also have to stick to many specific diets to prevent and help flare ups. THEY SUCK. Luckily my mom is a great cook and will make anything she could to accommodate me and still making it delicious. If I'm going out with friends or leaving my house in general, I make sure to eat a few hours before hand and test how my stomach feels. 

I can't imagine going through this while being in school. In high school I had debilitating anxiety and depression. I was hospitalized for a while, but when I came back to school my teachers were all very accommodating.  I had numerous doctors notes which allowed me to use the bathroom, leave the classroom, take tests in a separate room, make up my work at a reasonable pace and go to the nurse whenever. I had a separate discussion with all of my teachers so they'd understand my condition. I believe this helped as well because I felt more comfortable, more supported and less embarrassed. Unfortunately now my symptoms are so unbearable I had to take a medical leave from my job and have been out since the end of October. But if necessary that she is in so much pain I'm sure everyone will make her feel comfortable if she has to miss school. I'm sorry this isn't the most positive response, but I hope it helps a little. Please let me know if you have any questions! @Hidden username‍ 

Newly diagnosed with Crohn’s - looking for support, experiences, and advice
Member Carenity
Posted on

I know the heartbreak of Chrons!  Not being able to commit to anything until the last minute, the pain and inflammation, the unpredictability of the damn disease, and I know that my disposition is, or can be, completely separate from my body!  

Newly diagnosed with Crohn’s - looking for support, experiences, and advice
Member Carenity
Posted on

Hi also, and I now have had Crohns for 47 yrs, got it at age 20 so young and now been thru 4 resections as back 47 yrs ago didnt have the better medicines so they removed the bad intestines. I am left with 6 ft of small so Diarrea full time, cant aborb most nutrients and on and on, but I get by past 47 yrs ok take the medicine, must see Gastro DR not a general as need specialist for on going care.

Diet made me 50% less sick  and certain easy to digest foods , made me half as sick made the biggest change.

Now a days better medicine then I had back in 1971 is why they removed all but 6 ft of my small intestine, good medicine you shouldnt have to have any removed, hope not but diet , ask your DR to see a nutritionist, 3 X I was sent to one and it helped, I was eating all wrong, didnt know water soluable type food list on internet helped, hard to digest foods will cause flare ups so need to learn easy to digest foods and look up water soluable foods, easy to digest will be big help, take liquid or capsules multi vitamins to help nutrition if lots of Diarrea, and OTC Imodium helps that along with look up Crohns disease flare up foods to not irritate the pain in stomach until it settles down.

To start with this can help  and Good luck, I didnt get what to do or not do from DR 47 yrs ago, I had to get sick and find out one by one, cant have that, it was b4 computers and internet, once that was around, I looked up diet and Crohns food that wont hurt me and got educated quicker, not much help from Dr for first years.

You can do ok I have for many years, have to accept, few changes and try to not let it stop what you do or want to do, some adjustments and I have pretty much with lots of problems, pretty much do most all I w anted and you learn what works and helps you do not let it stop you from normal things, lil changes but you learn as you go.

Anyone having problems accepting problems and feel cant leave the house, feel free to write, share and talk, I have figured out so much they hard way but Life is good, not easy or always fun with Crohns issues but I found a way to do most, do what normal people and work around it all.

Again, food and water soluable diet, easy to digest wll help 50%, look up on in ternet or get DR to refer you to nutritionist, I felt 50% less sick and in pain I was eating all wrong, it is big part of the pain and problems for starts.

cjc Good Luck but you can make it work, once y ou learn how and accept, got it, stuck with it, unlucky but its yours to keep, so accept it and make the changes so you can do more, adn make it work for you, takes lil time but you can over staying home, fighting it, once you have it, it will win unless you do all you can, and life is much better not letting it win, you can work around it and do more....................eating different made the biggest change for me. I had to learn.

No roughage with Crohns, no big fiber as its a push thru if you have Diarrea, I did from day one, so had to learn nothing to push thru, fiber or roughage, made that much worse............lil more accepting, Crohns diet will help big time. Internet for Crohns diet big help there now a days, start there.