Our daughter is safe at home, resting comfortably. We have a provisional diagnosis of Crohn’s disease. We’ll have confirmation once the biopsies come back from pathology. The doctors are hoping that steroid therapy can reduce the inflammation and surgery won’t be necessary. It’s rare to see Chrohn’s in one so young (she’s 14) but not unheard of. She’s had problems for about three years now, but it was never as severe as it has been the last few months, and until now none of the doctors we took her to ever considered Crohn’s disease as a possibility. She has a pretty severe secondary infectious process going on as well. The gastroenterologist wasn’t blase` about this but she emphasized that this condition is very treatable and can be very well regulated without difficulty in many patients. She also said that there will be a few more studies done over time in order to gather more information about my daughter’s specific condition. In the mean time, she’s starting ciprofloxacin and steroid therapy. The best drug therapy is, of course, extremely expensive. We have to talk to our insurance providers to see what they say about that. We’ve exhausted our FSA, but I’d rob a bank if that’s what it took. Thank Obama that it won’t be.
There is some evidence that a cure may be in the offing through bone-marrow transplant, but that’s only because people who had Chrohn’s disease and got bone marrow transplant for another condition seem to stop having problems with Crohn’s as well. That’s currently under study, apparently, and there won’t be definitive answer for years yet.
So I’m slightly less of a mess than I’ve been all weekend. I haven’t slept much the last few days, and I’m going to rectify that here shortly. Thank you all for your kind words and your thoughts and prayers and positive energy. That’s been one of the better things about this week. That, and knowing that my daughter is in good hands at OU Children’s Medical Center. Everybody we’ve dealt with has been kind, knowledgeable, and professional, and that makes things a lot easier for everyone.
So again, thanks to everyone for your kind words and positive energies. And now we’ll resume our regularly scheduled hacking away at each other. Open Thread.
schrodinger's cat
A friend of mine has this disease, he has to be extremely careful about what he eats. No fiber at all. He is now in his 60s and healthier then men half his age. It also helps that he is very fit.
ETA: Good luck!
Xboxershorts
Best of luck, I’ve known people with Chron’s living a very normal life. It could have been much worse. Hang in there and God bless…Or Goddess, or FSM for that matter.
Omnes Omnibus
Get well soon to Soonerdaughter and get some sleep to you.
Villago Delenda Est
Well, that certainly sucks.
It’s good she’s resting comfortably, and there are ways to treat symptoms, but geeze, what a terrible thing to have to deal with on an ongoing basis, and I say this as a type II diabetic.
ACA helps on this in that “preexisting conditions” no longer are a damn Chinese Wall erected to protect profits for health “insurance” companies.
Best wishes to all in the family, sarge.
Hawes
Good news?!
Just knowing what your kid has and that there’s something you can do about it can make a world of difference.
Here’s to the utter, devastating helplessness we feel about our kids. Hope some of yours is gone down some.
martha
Deep breaths, get some sleep–this will get better and your daughter will bounce back. We have a very good friend, pushing 56 with Crohns. He’s had it for decades and manages it pretty darn well, even in the land of beer and fried cheese.
schrodinger's cat
Since this is an open thread, I will include a link to my blog post about my travels on the Mohawk Trail, this is the first part, I have at least one more part, may be two and with pictures planned.
DanF
Two good friends of mine live quite well with Crohn’s once it was diagnosed. Absent a cure, it’s a life-long condition she’ll have to become comfortable with monitoring – learning what stresses and foods aggravate it. and what doesn’t. Both claim it’s more art than science to keep flare-ups from happening.
raven
With the love and care she gets from her folks and the treatment available she should fare well. Best to all of you.
John Weiss
My heart to you and yours.
IowaOldLady
With some of the newer treatments, a lot of people with Crohn’s go into complete remission. I hope is so for Soonerdaughter.
Quinerly
My best to you, your family, and daughter. Good luck. Keep us posted.
StringOnAStick
I keep reading of cases of Crohn’s and IBS that were significantly improved by eliminating grains, especially wheat. Easy change; worth a shot.
max
That’s currently under study, apparently, and there won’t be definitive answer for years yet.
Marrow transplants are pretty rough. If you (finally) know what the problem is and can mitigate it with drugs, that’d be the route to go as long as it doesn’t get worse. Nasty thing to have.
I haven’t slept much the last few days, and I’m going to rectify that here shortly.
Yeah, tell me about it. Hope she sees a quick improvement and I’ll sacrifice a rabbit’s foot for ya.
max
[‘Now go get some sack time dude.’]
sharl
Best thoughts and wishes to your daughter and all of you on Team Soonerdaughter.
And I’m with Hawes above, on there being some good news here, insofar that you now have at least a preliminary diagnosis, from which some plan of treatment can be worked out while investigations are continued.
Good luck to all!
Kristine
I know someone with Crohn’s who manages pretty well. They’re a foodie/gourmet cook sort of person, so they are able to enjoy variety and good food. They just have to be careful.
Glad you can sleep now, Dad. Best to you and yours.
Roger Moore
Do. Not. Want. The survival rate for BMT/HSCT is far enough below 100% that it only makes sense if you are likely to die without one. There’s some work on safer transplants for non-life threatening illnesses, but it’s still a long way away.
ed
Best wishes for good health.
A lot of Crohn’s is linked to gluten sensitivity. See Dr Davis’ “Wheat Belly” book and blog for the umpteen reasons why. My Sister has Graves disease, as well as a removed gall Bladder and Uterus, due to gluten causing auto-immune reactions in her body( but she is not celiac – there is a difference ).
Ash Can
Crohn’s is no fun, but I have a cousin who’s had it for a long time and who’s walking, talking evidence that it can be managed quite well. She’s happy and healthy and lives a perfectly normal life apart from a strict do-and-don’t comestibles list. Glad to hear that your daughter’s problem is treatable and manageable, and that her prognosis is good. I get upset when Bottle Rocket comes down with a head cold, for crap’s sake; I can only imagine how relieved you must feel.
Odie Hugh Manatee
Two good friends of mine have Crohn’s, one was diagnosed as a teen (15) and the other in her 30’s. The friend who was diagnosed as a teen had to have part of their bowel removed in their early 20’s and is now 51 and the other friend is 79. It can be managed but they have to stay on top of it every day. With the help of Ma and Pa Soonergrunt on hand, your daughter will do well once she is on top of it. My friends both have painful bouts at times but they get past it and keep on keeping on.
Best wishes to your daughter and I hope she is back on her feet terrorizing her home asap! :)
normal liberal
My niece developed Crohn’s at 14, but was initially misdiagnosed with celiac disease. Once they reached the proper diagnosis, she did very well with treatment, and is now a junior in college. She is not generally a kid who handles restrictions well, but she has managed this pretty carefully with good results.
It’s good you have an answer and a path forward, even with the pharmacology issues still to be resolved.
geg6
Wow, be glad she got her diagnosis in this day and age. Crohn’s isn’t the horrifying diagnosis it used to be.
I know because my oldest sister got diagnosed with Crohn’s back in 1972. It had taken them three years to diagnose, numerous surgeries, a ride in an ambulance to Cleveland during which her heart stopped three times, and finally a world class surgeon/Crohn’s expert (Turnbull, check it out; he’s in all the literature as pioneer in the disease) to put her on the path to a life that she has never faltered from since. Over those years, she has had over 50 surgeries, lost all but 3 feet of her intestines, developed osteoporosis from years and years of steroid treatments, and now works part-time while on permanent disability. She’s married, adopted a child and sent her to college. Your daughter will never have to go through what my sister went through with this disease due to all the great work of so many like the people at Cleveland Clinic.
If you or your daughter have any questions about Crohn’s, feel free to ask me. If I can’t answer, I’ll ask my sister!
lamh36
It is always better to know what’s wrong rather than worrying alot about what “might” be wrong.
Good vibes towards you and your fam!
Anne Laurie
Thanks for being so thoughtful, as always, Sooner. Will keep your family in my thoughts, and hope that just knowing what your daughter is facing can reduce the stress level for all of you.
IowaOldLady
When I was pregnant, people felt compelled to tell me the horror stories of their labor. It wasn’t helpful.
srv
Ugh, awful to see kids with chronic conditions – had a teen cousin struggle with something that sidelined him for nearly a year to heal. I go nuts when I sprang an ankle and can’t get out for a week…
Gather that this disease is as much mental to manage the stress. How do you teach a teen to do that?
scav
A diagnosis is at least a specific concrete beast to wrestle with — much better than the wraithy vaporous monsters of the mind that arise otherwise, against which nothing can be attempted. And there are a lot worse monsters out there, so a shared “whew” and good wishes for the rest of the path.
Betty Cracker
@lamh36:
So true! Best of luck to Soonerdaughter and family.
ArchTeryx
If you need any advice or even a shoulder, you can email me at [email protected]. I’m a very severe colitis sufferer (and went through the bowel resection surgery), so I know firsthand what it is like to fight these sorts of diseases. In my case, I tried just about EVERYTHING. Nothing worked, until the surgery, but colitis and Crohn’s are different.
I will make a couple of notes, though.
While you’re going to get a ton of “take her off wheat!” pieces of advice, you should know that not all Crohns is related to gluten. It’s something of a sacred cow in liberal circles that Gluten Is The Root Of All Evil, but when it comes to autoimmune diseases it is just one possible cause. Gluten-free diets are very expensive and it’s VERY hard to avoid gluten unless you prepare all your own food, without fail. If that’s the root of the Crohn’s, it may still be worth it, but it may have nothing at all to do with gluten.
The other thing is that I’m assuming the really expensive option is “Remicade”. Being an immunologist, I know something about the drug and how it works; taking it may put the disease in remission but also greatly increases the risk of cancer (it partially disables the tumor-fighting part of the immune system) – and once you start, you have to take it continuously, since it is an antibody-based medicine. If you take one break, the body develops an immunity to the medicine itself, and it won’t work any more. It’s a rich man’s medicine (or at least a very well insured one) so be careful of doctors that try to foist it on you as a first option.
OzarkHillbilly
Good.
T
Sooner,
I also got the diagnosis of Crohn’s when I was 14. Depending on your daughter’s developmental stage, she should probably get seen by a GYN as the steroids in my case (not as well refined as they are today) caused problems with my period, growth etc. I am a relatively healthy 50+ and with diet, medication etc no major problems. There was some concern during my pregnancies but that was almost 20 years after diagnosis. Vegetarian/gluten free diet is good but again with steroid use I had to be careful with soy because it messed up my estrogen levels.
Best wishes for smooth management. May the gluten free Pastafarian smile upon your family.
T
p.a.
Know someone with Crohn’s, and flare ups are nasty but otherwise she leads a normal and very active life. Something positive a diabetic told me; he was diagnosed in his teens, and it’s much easier to adjust to something chronic in your youth than with a later in life onset, when you are set in your (bad) habits. Not exactly a silver lining, but sounds like the diagnosis could have been much worse. Best wishes to the whole family.
Patricia Kayden
Sorry to hear about your daughter’s diagnosis. Sounds like she has loads of family to support her.
R-Jud
I’m glad your drama has ended (but sorry to hear about the bills you’re bracing for).
A dear friend of mine with Crohn’s was also diagnosed in high school. He has a pretty darn normal lifestyle (if you leave out the pet llamas). Best of luck to all of you!
raven
@IowaOldLady: I heard that. Some people are just dumb.
Rosalita
I’m glad you have a diagnosis Sooner. My friend’s daughter has had Crohn’s from a young age — she is grown up, healthy and married now.
Roger Moore
@raven:
And some people are assholes who love telling medical horror stories for the joy of scaring people.
Ted & Hellen
Glad your girl is in good hands and that you know what you are up against now, SG. Good energy to you and yours.
Schlemizel
I have had a lot of health problems and they are a constant PitA but I am grateful the problems are mine and not my kids. I can’t imagine how tough it would be to have to sit there and see my kid go through something like that. Hope it goes well for her, try not to let it get you (or her) down. For all the problems in the world there has never been a better time to have a disease than right now. Hopefully she’ll get this under control and they’ll have a treatment for her soon enough. Good luck to you guys
scav
@R-Jud: Not Fair! I didn’t get any large pets with the diagnosis of a brain tumor!
eemom
Very relieved to hear the child is safe…..and hope everything I am reading above about the manageability and good outcomes with this condition prove better than true in her case.
David Hunt
I think I’ve correctly interpreted the diagnosis as “good” news in that you know what the problem is and how to treat it. I hope that’s the case. Best wishes to the Soonerkid and the whole Soonerfamily. I hope that things start going
wellbest for her the rest of you soonest.AliceBlue
You and the rest of the Soonerfamily are in my thoughts.
Trollhattan
Oh my gosh, your poor kid! My best to her and to you all. Now that you have a diagnosis, at least the mystery is behind you and you can look forward first to relief, and then a cure.
Mnemosyne
A solid diagnosis is better than not knowing what’s going on, so that’s a relief. If they didn’t provide you with a referral to a dietician (NOT a nutritionist, a registered dietician), make sure to get one from her regular pediatrician. As others said, it will take some trial and error to figure out what her new diet should be and the dietician should be able to help you all figure out how she can eat nutritiously and still keep the Crohn’s under control.
ranchandsyrup
The diagnosis process is so infuriating. Thoughts and prayers, SG.
JPL
Good luck to the Family of Sooners. Any change for a fourteen year old will be difficult, but I assume that just feeling good will help. Prayers are with you.
raven
@Roger Moore: That’s what I meant.
eta, Oh, I get it, you don’t have to be dumb to be an asshole.
MaryJane
Thanks for the update, SG. You and your daughter have been on my mind, especially since I have two teens of my own and am enduring sleepless nights just because — teenagers! Best wishes and good thoughts to you all.
kc
Glad she’s home; thanks for the update. Sending good thoughts for her and you.
The Very Reverend Crimson Fire of Compassion
Our prayers are for you and yours.
JPL
@IowaOldLady: When abortions were not readily available, a neighbor told me about someone she knew, who had to carry a non viable fetus to term. That was not helpful but it did turn me into a rabid abortion rights person.
LiberalTarian
So sorry to hear Soonergrunt. Happy to hear you know what it is though. Knowledge is power and all that.
I have an immune disorder, and so does my dear BF, although his is ulcerative colitis that is being treated with Remicade (although it is terribly depressing to hear the side effects, he wouldn’t have survived without it). He also takes an immune suppressive drug in the morning and before he goes to bed, but he’s ok and feels good. There are everyday things that go with autoimmune disorders, like not taking zinc, etc. BF’s big trigger is anything pork. Before he almost died he could eat it, now he has to avoid it like the plague.
Great support groups out there, like “Patients Like Me” and others. The steroids are going to be hard on her, but hopefully she won’t have to be on them very long.
Good luck, good joo joo and God Bless.
MomSense
Hope you can all get some rest and that you don’t have to wait much longer to get the diagnoses. It is tough waiting when it is your child. Sending you all good thoughts and prayers.
Jane2
Good to know that you have a good professional team caring for your daughter. As others have said, I know people with Crohn’s and effective management regime works well.
LiberalTarian
@Roger Moore:
I dunno. It tends to keep it real for me, and comforts me to know that other people have been through it. I got very sick before they finally figured out what was wrong with me (kidney disease related to celiacs). At first I read all the worst case scenarios, then I realized I was very very lucky.
And indeed, we are. Thank goodness we are here now, and not trying to get healed 50 years ago.
LanceThruster
This is neither here nor there in regards to your daughter’s condition, but the only reason I’ve heard of Crohn’s disease is because of adult film star Juliette Anderson (Aunt Peg). Here’s hoping for success for your entire family in dealing with this
Ben Cisco
Glad to hear the good news. Wishing for the best for Soonerfamily.
geg6
@ArchTeryx:
Agree with every word you say here. My sister has no gluten problems whatsoever. And don’t go with the Remicade first. My sister has survived almost 45 years of this disease with less expensive and less scary meds.
I will, however, caution that the prolonged use of the steroids used to treat can lead to osteoporosis, so if she is on it for prolonged periods, make sure her bone density is monitored regularly.
Roger Moore
@raven:
I think some people tell horror stories because they’re honestly clueless enough not to appreciate that they’re disturbing the listener. A friend has to remind me not to go into too much detail when I’m talking about blood donations, not because I’m a generally insensitive person but because I’ve donated enough that I forget how squeamish she is about it; I don’t know when I’ve crossed her threshold. Other people do that kind of thing because they want to gross people out. I had a couple of former coworkers who would tell bicycle accident stories over lunch because they wanted to drive away another bicycle enthusiast who was more squeamish.
RR
My daughter’s finance, age 31, was diagnosed with Crohn’s at age 11. He had surgery a while back to remove some scarred intestine, and it took many months to recover. Otherwise, he’s quite fit–goes rock climbing. His doctors at Mass General Hospital strongly hinted that new research shows marijuana can help Crohn’s, and he should try it. He’s coming to CA from MA in October, so maybe legal medical marijuana brownies are in his future.
(My daughter has many many food allergies, notably peanuts, and is a good cook, so it’s a match made in heaven.)
It is so scarey facing a disease challenge–but constant vigilance makes it manageable. I’m sure your daughter will rise to the challenge.
schrodinger's cat
@IowaOldLady: Women love sharing those stories don’t they, and also horror stories about painful periods. Men do have it easy, by comparison.
BGinCHI
All best to you and the family, SG!
aimai
Big, big hugs to you and yours, Soonergrunt. A diagnosis is so much better than just wondering. It feels like the stage is set for a lot of big breakthroughs on all these autoimmune and also (potentially) bacterial/flora related digestive things over the next ten or twenty years. I have a ton of faith that your daughter will end up managing this while she needs to and perhaps benefitting enough from new therapies that it will cease to matter before she is all grown up. Figner’s crossed for you. Hope you get some rest!
Cacti
You have my sympathies SG. I’m sure you must be in shock, not to mention your daughter. The Crohn’s & Colitis Foundation of America can help you locate a support group in your area if think it might be helpful.
Also too, Mike McReady, lead guitarist from Pearl Jam was diagnosed with Crohn’s at age 21, about 3-years before PJ actually formed and 4 or so before they made it in the music biz. By his own account, after his initial dx, he was so depressed that he didn’t pick up a guitar for 6-months, and thought his music career was over before it had begun. At age 47, he’s now a rock star and spokesman for the CCFA. So tell Sooner daughter she need not give up her dreams because of it.
Best wishes to you and yours.
lojasmo
@StringOnAStick:
I subscribe to this. Glad she got a diagnosis. Crohn’s is a very treatable disease.
Omnes Omnibus
@Cacti: IIRC Beth Orton also has Crohn’s.
lojasmo
@ArchTeryx:
Gluten free diets are NOT expensive.
How the hell can avoiding wheat products (and a few other grains) be considered expensive?
Meat, and vegetables
Cacti
@Omnes Omnibus:
Apparently, so did Dwight Eisenhower.
Omnes Omnibus
@Cacti: I am not really familiar with Ike’s musical career.
geg6
@Omnes Omnibus:
A few NFL players have it, too: Matt Light, David Garrard, and Robert Alford come to mind right away.
Cacti
@Omnes Omnibus:
I hear he played a mean kazoo.
Cacti
@geg6:
Kevin Dineen, 19-year NHL vet and current coach of the Florida Panthers has also had it since 1987.
geg6
@lojasmo:
Some vegetables and fruits are big problems for people with Crohn’s. Difficult to digest, you know. My sister basically can’t eat any fruit other than bananas and watermelon. But she can eat all the gluten she wants. My advice is for Soonerfamily is to stock up on Gatorade and Ensure. There have been times during flare ups when those were all my sister could ingest.
Keith G
@IowaOldLady:
Thank you. Marry me you wonderful Old Lady!
gnomedad
Good luck to Soonerdaughter and you.
Here is the experience of someone of my acquaintance:
The Specific Carbohydrate Diet
gogol's wife
@raven:
This. It’s good to have a diagnosis. I think this is a disease that does get a lot of attention, which is good. Still praying for you all.
The Sheriff's A Ni-
That’s gotta blow for someone so young, but at least you’re on the path to getting it diagnosed. Best wishes to all of your family in what has to be a trying time.
sairarias
My wife has Crohns… was diagnosed in middle school. After the initial eat-only-air-and-water elimination diet, she’s now able to eat pretty much everything, but as she says, she has “good Crohns.” Here’s hoping your daughter does too :)
Trollhattan
@Cacti:
Was that his nickname for Mamie?
geg6
@sairarias:
Heh, yes! There is good Crohn’s (your wife’s) and bad Crohn’s (my sister’s). Here’s hoping Soonerdaughter’s is the good kind!
SiubhanDuinne
Soonergrunt, I’m so relieved for you and your family that you have a diagnosis and that it’s treatable/controllable. I don’t have any direct connection with Crohn’s or related diseases, but I have a 16-year-old niece who was diagnosed about six years ago with von Willebrand Disease (vWD is a bleeding disorder, a type of hemophilia). She and her parents have had to learn to monitor, prevent, and manage her bleeding episodes, and honestly, she handles it a lot better than I probably would have, especially at that age. Soonerdaughter is in good medical hands and has awesome parents. She’ll be fine. All best to the Sooner family.
Kevin
Just wanted say, I have Crohn’s, so I sympathize with your daughter. Diagnosed when I was 23, after a year of massive pain and constant terror (anyone with Chrohn’s will immediately check for escape routes, escape being a toilet. You quickly lose your fear of public restrooms when you have a flare), and losing about 25% of my body weight (seriously, I looked like an extra from Shindler’s List).
Ignore every single person who gives you a meal plan. Ultimately, your daughter will have to do the hard work of eating things, and eliminating them from her diet based on it’s reactions.
There are a few that I think are red flags for all of us – corn, alcohol…but who knows? I told my doctor I couldn’t have green peas, she was surprised with that one. I’m not good with any leafy greens or nuts. Again, a little alcohol, and anyone following me to the wash room later will think I had my period…and I’m a guy.
I think the hardest part, once the physical is regulated by medicine (I’m on remicade, which I assume is the expensive stuff you mention, as it’s $4,200 an infusion, and i get 6 a year. Some people get double that, luckily my dosage hasn’t had to be increased in these 7 years I’ve been on it), is the feeling of being an “other”. I love explaining why I don’t drink each and every time I go out with some new person or group! Did you know that 99% of the people in this world don’t take “Not my thing” or “never liked it” as an answer? People take their drinking very seriously, and they demand to know why you are different! She has a few years until that at least. It’s also not a disease many know about, so lots of people just wont take it that seriously. That can get very annoying, but ultimately, she’ll be fine.
Anyway, best of luck, I’m sure she’ll be fine. Can live a perfectly normal life. Or an abnormal one if she chooses. It doesn’t get in the way too much if the medicine is working.
Joe F
@ArchTeryx: this post is right on and I would guess the expensive option is Remicade. I know because I was recently diagnosed with IBD and it has a similar path of treatment, but I actually take Humira, which is another TNF blocker. Observations about risk are accurate, but the steroid therapy, which I am guessing is Prednisone is not a great long term option. Any TNF blocker raises the risk if infection because it quiets the immune system, but regular blood work and care can keep a tight eye in it. Two things as someone who uses the stuff: yes, insurance will be a pain, but keep appealing and even file a grievance with State commissioner. There are too many insurance companies paying for it already (I know for a fact that Crohn’s is covered by most) so you will get it with persistance, I did; and two, it has worked great for me so far without any complications at all. remicade is a chemo type infusion and Humira is a weekly self injectable. Remicade is stronger but Humira (or equivelant) may be more tolerable over the long term.
Diet can help, but it is very individualistic. Whatever triggers inflammatory response should be avoided, but it differs from person to person. Prednisone will help and help FAST, but I am sure they will taper soon and symptoms will return. TNF blockers do have risk but many people tolerate for long periods instead of surgery.
Also NO to bone marrow unless last resort. Lots of things can go sideways
MazeDancer
There is a great deal about auto immune conditions that is not known. Actually, like all disease medicine, there is more that is not known than is known. (Structural medicine is an American forte. Bones, heart valves, stuff surgery can fix. Disease, not as much.)
(Disclosure: Not an expert. But frequently – as part of marketing consultancy – get paid to translate rheumatological studies to consumer language.)
Diet is really important. Food allergies and sensitivities could abound that mainstream medicine neither recognizes nor wants to discuss. But could gnarl the stomach nonetheless.
But @ed is right about wheat.
It’s really hard for a 14 year old who doesn’t want to feel different. But seize on the gluten-free trend and try a few weeks without wheat. The whole family can do it. (Two great gluten free pastas: Bio Nature and Jovial. Really great.) You don’t have to have celiac to react to wheat. Especially when you have an auto-immune condition. And sugar is unlikely to be her friend either.
Also stress has to be avoided. The sooner she takes up meditation and yoga the better. Or at least regular exercise.And journalling.
Also, everyone is different. Really different. What triggers flares in Soonerdaughter is hers and hers alone. And is likely to change over time. After fighting the “I’m not sick and I’m not different” thing, she’ll come to recognize what feels good and what doesn’t.
But what’s difficult is food reactions can happen the next day or 2 or 3 days later. So, over the long run, try and keep tabs on what she eats and see how she feels. Nothing heavy handed. Just observe.
I know. It’s overwhelming. And you’re just happy it’s nothing life-threatening. (As we all are.) But when the time comes, consider diet and stress.
And, yay, she’s going to be fine.
satby
Glad to hear she’s home! Get rest SoonerFamily; and know we’re all thinking good thoughts for you all.
Flying Squirrel Girl
I just heard a story yesterday on NPR about fecal transplant surgery. It is currently being used to treat c. diff but it is believed that it may be useful in treating Crohn’s, colitis and IBS. It is just as basic as it sounds: a healthy donor’s feces is put into the colon of the patient via colonoscope (or other methods) and they are seeing a dramatic success rate. In many cases people who have been sick for months make a turnaround in a matter of days. I was so fascinated I read more about it last night, since I have a good friend who died earlier this year after a prolonged c.diff infection.
Alison
I am very glad to hear she’s home and that you know what’s up now. I’ve always felt that having an answer, even a scary one, is better than not knowing what the hell is wrong, and doctors shrugging at you. I know someone with Crohn’s and it is…no fun, to put it mildly, but I’ll keep positive thoughts for her that she’s got good medical care and can find a way to live this new life as well as possible.
Elizabelle
Hugs to Soonerdaughter and Soonerfamily.
Best wishes as she begins her treatment and experimenting with what works, and how well.
Best wishes to all who are living with anything like Crohn’s. Wow.
Suzanne
Hugs to the Soonersprog, and to you.
Elie
So sorry to hear about this — I wish you, your daughter and family healing energy your way…She is young and that is surprising but also good… remission is frequent and the resilience of youth is definitely something positive to think about. Best to you…
phoebes-in-santa fe
I’ve always thought there must be a genetic component to Crohn’s because I am one of four siblings and the other three all have Crohns. I’m the lucky one, I guess. One sister – who died five years ago of breast cancer – had a very bad case – diagnosed at age 18. This was in 1965 and since we lived near Chicago, she was able to be treated at Michael Reese Hospital (now merged with another hospital) by Joseph Kirsner, the most famous Crohn’s doctor at the time. She was at Reese for nine months and at one point weighed 80 lbs.
My other two sibs – still alive – have much less complicated cases and were diagnosed later in life.
I’m 62 and I suppose I can stop worrying I’m going to join the other three!
dollared
Sorry to hear this, but glad that you know what it is and that there are things that can be done to help her. I’m owned and managed by my two grade school age daughters. I can only imagine how much this has weighed on you. Best to you….and her.
Villago Delenda Est
@Trollhattan:
Or Kay Summersby…
Mary G
I had Crohn’s in the early 80s and haven’t had a flare-up since then. So it is possible. Food triggers will be different from anyone else’s, as everyone has said.
Insurance will pay for Remicade (I had it for three years for RA, and it worked great until it didn’t) if you yell loud enough. I am 100% certain you and Mrs. Sooner can pack more than enough decibels if you need to.
BAtFFP
Hello, Soonerfamily! GI nurse here, spending most of my time working with Crohns and colitis patients. I could reiterate what other people in the thread have said (i.e. it’s a lot of work to figure out what trigger foods are but oh so worth it in the end; gluten might be an irritant but might not be so don’t jump head first into the gluten-free diet; remicade is a last resort; bone marrow transplants are beyond a last resort; seriously keep your eye on fecal transplants because gross as they sound there’s lots and lots of promise, and even autoimmune disorders like Crohns likely have a strong microbiota component that can be changed and hopefully improved upon, etc) … but what I really want to add it this: all day, every day, I see people with Crohns (one diagnosed at age 9!) who have happy, successful, comfortable lives. They get to do the same things their friends do, they have cool jobs, families, kids, careers, adventures, and everything else a father could want for his daughter. You’ve got a diagnosis — now you can work towards a treatment. It can happen. It takes time, patience, and sometimes a longish course of prednisone to get the symptoms under control, but it happens. Hopefully one day she will be like most of my patients, who (thanks to good medical care and compliance with their needed meds and lifestyle changes) generally have to sit and think before remembering the last time they had a flare up.
Kevin
People are right that remicade is a last resort. Unfortunately, lots of us have to go to that last resort. I was on 5 ASA first (there’s a long name, but that’s what they called it), then Imuran (which is what transplant patients take if memory serves), then Remicade. The first two may as well have been water. They did nothing. So it was back and forth with steroids and failed medication. And a 14 year old girl on prednisone is sad. My face looked like it was inflated with water when I was on prednisone. For a child in school, it’s going to be tough.
Thankfully, remicade has worked amazing for me. There are higher cancer risks, which suck, but there is also cancer risk with your colon getting shredded constantly with flare ups (we have a higher risk of colon cancer because of that). So it’s a damned if you do thing.
J R in WV
Glad to hear of the successful diagnosis, many treatments, etc. Best wishes!
I have Irritable Bowel Syndrome, and once my Dr. decided that was the problem, and started the proper meds, all is well.
Take care!
Svensker
Glad to know that you KNOW and that’s it’s something that can be dealt with. Big hugs to all and get some well deserved sleep!
debbie
It’s nice to hear you got a diagnosis amidst all the bad news going on in the world. Crohns is tough but it can be lived with.
Comrade Mary
Good thoughts heading to you all, Sooner! I don’t know much about Crohn’s, but from what I can see upthread, it seems to be a manageable disease. It’s awful that she has to deal with this at all, but it sounds as if lots of people are living happy, if challenging, lives after the diagnosis.
Jeanne Dalbret
Big fan here of a combo of antibiotics and SCD. Found them through a skilled, credentialed naturopath (ND) here is Seattle.
CCFA not entirely sold on it http://www.ccfa.org/resources/specific-carbohydrate-diet.html, but it is amazingwhat we are learning about how an imbalance in gut flora can affect us physically and emotionally.
Also, I am the parent of challenged child. Your gut wil be helpful when talking to medical professionals before deciding on treatment.
Very best wishes to you and the Soonerfamily.
pika
Sending thoughts for further healing and certainty!
Lonnie jones
@geg6: please the book the book “breaking the vicious cycle”. Just changing her diet , with the 24 hour yogurt, and eliminating certain carbohydrates, could mean to eliminate the progesterone, which is so hard on your body.
Nina-the-first
It’s a tough diagnosis but I bet that 14-y-o Soonerdaughter is already taking notes and teaching herself how to stay ahead of this chronic, changing disease. It is good to know that she has such a wonderful, supportive family who are getting a good medical care team in place. Best thoughts to all of you.
StringOnAStick
@lojasmo:
Exactly. Switching to this kind of eating saved my life basically, and both my husband and I have the blood work records and improved health to show for it.
All the food processors are currently jumping on the gluten-free bandwagon, which means they are making the same profit-motivated moves that they did when we first got fed the “high carb, low fat” diet craze/mistake that led to removing fat and stuffing processed foods with various forms of sugar to replace the fat/flavor. In other words, gluten-free baked goods are just as bad for you as gluten filled ones because they are concentrated forms of processed carbohydrates that spike blood sugar, spike insulin, and lead to big increases in blood triglycerides. High triglycerides = bad, bad, bad, but it sure doesn’t sell statins or high profit processed foods, does it?
a hip hop artist from Idaho (fka Bella Q)
Thinking very good thoughts for Soonerfamily. Get some rest.
Pete Mack
Some of my relatives have celiac syndrome, which sounds pretty similar. It often does start as a teenager.
TriassicSands
Crohn’s is a tough diagnosis for one so young. I wish her well (and maybe a misdiagnosis, though not having a diagnosis at all is often harder psychologically than having a bad one) and hope she and the whole family can find some sunshine soon.
Betsy
My bro has it, diagnosed at about 10 y.o., now complete remission, we are not sure why. But I’ve taken him to hospital in wee hours, he’s had sepsis of blood, was at times scary stuff. So sorry about your kiddo. Prayers and thoughts to all of you and my heartfelt best wishes.
galen west
i have crohn’s disease myself. just got out of the hospital. they had to take out 40cm of small intestine to treat the crohn’s this time. (it is my 3rd surgery.) and don’t do the steroids. i am on prednisone and have been on it for 20 years now. it is horrble.
danielx
Have spent more time than I care to think about sitting in waiting areas while our daughter was in surgery or undergoing diagnostic procedures. You never get used to it, exactly, but you just learn to deal..although being frantic and frazzled is part of the gig. I sincerely hope all goes well for you and yours, and if the volume of positive thoughts being sent your way bears any weight the Soonerdaughter will be cured tomorrow.
Gromit
My sympathies are with you and your daughter, SG. I’ve heard and read some promising things about helminthic therapy for autoimmune diseases like Crohn’s. Folks are deliberately infecting themselves with pig whipworm and, they say, finding high rates of symptom reduction and even remission. Small studies so far, and I don’t think there’s been any research in kids yet, but it might be something to keep an eye on, gross as it might sound.
Brian
There is actually a pretty good treatment for Crohn’s, but it’s kinda icky: http://www.webmd.com/ibd-crohns-disease/crohns-disease/news/20040519/wormy-cocktail-fights-crohns-disease
I’m not a doctor, but I do have a phd in microbiology and some understanding of the immune system. This treatment really appears to work, but it’s one of those that’s hard for the FDA to deal with because administering live worms doesn’t fit the drug model they usually work under.
Frivolous
Very sorry your daughter has been having so much trouble, Soonergrunt. Hope it isn’t Crohn’s, which can be quite messy.
Take care. Your daughter and your family and you have my good wishes for your physical and mental and financial health.
MvR
Best wishes for coping with all of that. Even when things are getting better, it takes a lot out of you.
dww44
Thanks, Sonnergrunt, for the update. I’ve learned a lot about Crohn’s from reading all these comments. Hopefully you will make note of the many suggestions. The only thing I can add is a link to the NPR story from yesterday that a commenter mentioned upthread. it’s worth a read.
http://www.npr.org/blogs/health/2013/09/10/216553408/microbe-transplants-treat-some-diseases-that-drugs-cant-fix
Pete Mack
@StringOnAStick: @StringOnAStick:
Except gluten really does irritate the bowel. There are specific genes evolved just to deal with it; if those genes don’t work, you end up with celiac syndrome. Gluten is contra-indicated for people with IBS as well. Crohn’s disease is similar, so it’s probably a bad idea to eat much wheat for Crohn’s patients either.
Eating carbs in general is a very different issue. Everybody can eat some carbs. But not everyone can eat even a little bit of wheat, rye or barley.
Temporarily Max McGee (soon enough to be Andy K again)
Glad to read the news, Soonergrunt. Could have been better, but it could have been a whole lot worse.
sherparick
Best wishes to your family and your daughter. I figure you can google Web MED and Mayo as well as any of us so I will not offer any free medical and or diet advice. Hope she starts feeling better real soon and can become a proper American teenager again.
keestadoll
As a few others have mentioned: balanced gut flora. Perhaps get her on a great pre/pro-biotic.
Pococurante
My deepest prayers and support for your family.
Ellen R
I’m 60 and have had Crohn’s since about the same age as Soonerdaughter. In some ways you’re fortunate that they have diagnosed it so early. I’ve been told everything from depression to stress caused by college to endometriosis. Bouts can simply disappear for years. But in my early 30s it got to the point where I could no longer eat — probably where your daughter is now. They had to figure out what was wrong with me, and a small town GP finally did. I was a biochemist with access to the medical literature and read everything I could understand, and my key takeaway was to avoid surgery if at all possible. The doctor tried the least interventionist treatments first, and in the end prednisone was the treatment of choice. I was able to let my fistula heal on its own.
Bouts come and go, and there are bizarre symptoms (painful joints, every kind of rash you can imagine, inflammation of the eyes, and of course fatigue and low fevers). When I’m having a bout, I don’t get colds or flu – OK tradeoff sometimes. The type of food that bothers your gut is different with each bout, for me – so try any of the suggestions and see what works for you. I often have problems in the late summer because I refuse to not eat raw veggies. When I’m really sick I eat a lot of soups and cooked fruit. Yoghurt with live cultures (Fage Total, Stoneyfield, etc) seems to help, as does miso (get the pastes imported from Japan, tasty and great for soup bases). Fermented foods in general are easier to digest. The metabolites of the fermentation organisms may be important for gut health, too.
I hate the invasive tests (I think they make me sicker, and they are exhausting and stressful) and once asked my dr why I should have them yearly. He replied “so they could see the extent of the damage”. I asked what difference that would make in treatment, and he said probably none, so I avoid them when I can. I work on diet, yoga for exercise, massage to help the body cope, and prednisone when necessary. I’ve learned to use it on an as-needed basis, and have been to the chipmunk-look state and back three times so far. I am also able to tolerate large doses of ibuprofen for pain, but not the pharmacologically similar Mobic. Pain meds effect everyone differently – try them all. It’s much easier to go for a minimal treatment regimen if you’re not in pain.
Little things: I have one friend who’s been on Humira for >5 years, and an acquaintance on one of the other monoclonal antibody medications. Side effects of these are minor and tolerable for both. My problems are upper GI – things like ginger and chewing lots of gum are helpful. Vinegar seems to be an irritant – pickles, salad dressings, are out (mayo is fine). There’s a school of thought regarding the pH of the body: eating foods high in acid (low pH) lead to elevated pH in the body – and this favors the wrong gut flora and may be a general irritant. (Even though pH is controlled by the kidneys.) Avoid orange and apple juice, go for berries (cran, blue, rasp) or pineapple.
I’d probably be happier if I never got sick, but it’s OK, life is satisfying and fun is possible. Hang in there.
Ryan G
Bearing in mind that I am not a doctor, nor biologist… but if bone marrow transplant recipients are improving, I’d try testing anti-rejection drugs before trying the transplant. Crohn’s is inflammatory, right? Suppressing the immune system is at least plausible.