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Hi all - beginning my first foray into the Health and Wellness forum. I wanted to reach out to get some advice/support re: Crohn's disease. After a several months of GI issues, weight loss, and terrible stomach cramps, my almost-14-year-old daughter was diagnosed with it. It is scary, but such a relief to finally have some answers and begin treatment. Any and all advice is appreciated - I know very little about the disease and am doing a lot of research as to best support my daughter through this (in addition to what we get from her gastroenterologist, of course).
I have Ulcerative Colitis which is similar, but only located in part of the colon. I was as diagnosed a year ago in my mid-30s, but I've probably had it for 15+ years.
The thing about UC/Crohns is that everyone responds differently to treatment/lifestyle changes. I personally have had the most success from modifying my diet (I also take meds but have managed to stay at the entry level). The list of foods I can't eat is very long, and it's been a real challenge, but I am desperate to keep my colon for as long as I can.
The key is keeping on top of meds, keeping track of symptoms and being honest with your doctor. Finding someone who has been living with it for a while is also extremely helpful, if you can find some kind of local support group for young adults and teens. I have a friend who has had the condition for a long time who has been so unbelievably kind and supportive.
My daughter who has Ulcerative Colitis, takes Humira. It's an off-label use but she has been on it for maybe 2 yrs with good success. Not sure if it would work for Chrohn but you can ask.
My 21 year old niece is going through similar issues. She's had stomach issues for a year, been to a gastro doctor then switched to the one we use. Blood work results are leaning towards Crohns but she really does not have all of the tell tailed signs. She was told she needs a colonoscopy but she's refusing. She had an endoscopy already and the first doctor said gastritis and acid reflux. I told her a colonoscopy is not that big of a deal because her uncle (my DH) had one and so did her grandmother. She does not like the idea of a scope going up her behind. If anything the prep tastes nasty but that's it.
My late husband was diagnosed with stomach ulcers in grade school. When he was a teen a friend helped him realize what is now MMJ lessened his symptoms. When he turned 30 he was diagnosed with Crohn's. If you live in an MMJ state, might be worth looking into, if not now, in a few years. He continued to smoke it for the next 33 years and if he didn't have any he would be in great pain, afraid to eat and he'd begin losing weight. He had his first resection when he was 36 and he almost died the summer before that surgery because his doctors did not want to approve the huge cost of his treatment. He had his second resection when he was 44 and lived till he was 63 years old. Without MMJ he would have died much younger than he did.
Hi all - beginning my first foray into the Health and Wellness forum. I wanted to reach out to get some advice/support re: Crohn's disease. After a several months of GI issues, weight loss, and terrible stomach cramps, my almost-14-year-old daughter was diagnosed with it. It is scary, but such a relief to finally have some answers and begin treatment. Any and all advice is appreciated - I know very little about the disease and am doing a lot of research as to best support my daughter through this (in addition to what we get from her gastroenterologist, of course).
I don't have Crohn's, but I do have IBS (irritable bowel syndrome). A low FODMAP diet has helped me tremendously, and I know that it has also helped people with Crohn's get some symptomatic relief. FODMAPs and Crohn's Disease: A Beginner's Guide - Gutsy By Nature
There are other more stringent diets out there, but this one has worked for me.
Also, you will want to read about controlling inflammation in general.
Crohn's is no joke, I am sorry your daughter has it - but it can be lived with. There are a lot of people out there dealing with digestive issues. I think it would be very important for your daughter to find some kind of peer support group. It's never a good time to find out that your gut doesn't work as it should, but I think being on the verge of dating would have to be one of the worst times.
I was diagnosed with Crohn's in January of 2016, but likely had it for close to a year prior. I only worked three months total last year, it's been a real struggle to say the least. I have found that sticking to a fairly restricted diet is the only thing that works for me. Everyone is different and finding the foods that cause flares (and eliminating them) is the key to really getting control of this disease. Personally I have cut out butter, mayo, uncooked vegetables/fruit, dark soda's and coffee, and anything with nitrates or nitrites (cured meats). There are trials going on right now in London, England to see if Crohn's can be cured. They should know within a couple months if the treatment is effective. This is the site if you would like to know more: Cure Crohn's MAP Vaccine
Best of luck getting your daughter on the road to wellness! Hang in there
My 21 year old niece is going through similar issues. She's had stomach issues for a year, been to a gastro doctor then switched to the one we use. Blood work results are leaning towards Crohns but she really does not have all of the tell tailed signs. She was told she needs a colonoscopy but she's refusing. She had an endoscopy already and the first doctor said gastritis and acid reflux. I told her a colonoscopy is not that big of a deal because her uncle (my DH) had one and so did her grandmother. She does not like the idea of a scope going up her behind. If anything the prep tastes nasty but that's it.
My father had Crohn's for 16 years until his death in the 1990's diagnosed in 1980 had waited too long to go to a doctor and his large intestine actually split open had to have bowel resection 2 of them then a colostomy bag then they were able to remove the bag after getting the Crohn's under control. It can only be diagnosed by colonoscopy so your niece needs to get it done the sooner it's diagnosed or ruled out the better. Unfortunately my father in 1980's one of those surgeries he contracted HIV from a blood transfusion wasn't diagnosed until the mid 90's before HIV medication worked. Crohn's is a serious disease make sure she gets gets proper medical care. Most likely it's not Chrons but if a doctor recommended the colonoscopy he is concerned enough.
I have had a few scares with stomach issues after 2 colonoscopies it was really just diet and acid reflux. I always wondered if I would end up with Crohn's i'm past his age now when he came down with Crohn's. It's unknown why people get it he did a lot of world traveling did eat bad food I think it was stress mixed with eating bad food in 3rd world countries. Hope all turns out well for you.
The new prep method isn't as bad as it used to with the golite that stuff was awful last time they told me to use miralax and dulcolax just have to stay close to the bathroom but it goes down easy then once she gets to the endoscopy place they will give her Fentanyl most likely which is the best legal drug I have ever had the procedure is really nothing the prep is the biggest hassle.
Last edited by kell490; 02-02-2017 at 08:59 PM..
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the procedure is really nothing the prep is the biggest hassle.
