I was away a day and then sick a day, and boy, there is nothing quite like that to make a person feel that special blend of useful/important (“My goodness, I really DO do a lot around here!”) and resentful (“So, it’s LITERALLY that if I don’t do it no one does??”). It’s also given me a couple of days of morbid-fantasy fretting about how the family would cope if I were incapacitated for longer than a couple of days and also about how I’ll fare in my elder years. Well, sufficient unto the day, etc.
Speaking of sufficient unto the day, we have a diagnosis for Edward. To review before the reveal, he was diagnosed with anemia at age 6 and referred to a pediatric hematologist at age 8. The pediatric hematologist (billing $750 for 20 minutes, which, my dear heaven, my insurance card is now covered in lipstick marks) referred him to the pediatric gastroenterologist. The pediatric gastroenterologist first did an endoscopy/colonoscopy and then an abdominal MRI, with me all pre-embarrassed for how this was all going to turn out to be nothing and look how much trouble and expense we caused for a little anemia issue.
But instead it’s Crohn’s Disease (a disease that can include the entire digestive system from In to Out), and we’re so glad we found out as early as we did: some people find out they have Crohn’s after it’s caused them to miss an important growth spurt, or at the point where they need a large piece of damaged intestine removed. Edward has lost some growth (the anemia was diagnosed after he failed to grow at all between age 5 and age 6), but we hope this nice early treatment will help him not to miss more. The diagnosis explains his anemia, his irregular growth, his tiredness, his picky eating, his low appetite, his stomachaches: Crohn’s can make it difficult to absorb nutrients, and difficult to digest food and to feel good while doing so. Crohn’s is not curable but it’s treatable; he’s started on Pentasa (this is nine capsules a day) and omeprazole, plus two weeks of prednisone, and he’ll likely start on 6-MP at his visit next month.
I don’t know much about Crohn’s at all, though that situation is rapidly changing. Paul got us a book out of the library and it’s causing me to do childbirth breathing. Also, Crohn’s can be quite hereditary, so I’m also worrying about future grandchildren. I’m trying to take to heart Augusten Burroughs’s advice (from This Is How, which I see is currently bargain-priced and which I highly recommend: it’s like having someone ELSE go to three decades of therapy and condense it for you so you don’t have to go), where he says that just because someone has an illness that COULD involve certain things, don’t worry about those things until they happen, because if/when they DO happen, you’ll take it in stride in a way you can’t do when thinking of it ahead of time. OKAY I WILL TRY.
I know nothing about Crohn’s so I’m just going to send you a hug.
My daughters teachers son (got that?) Is in elementary school and has crohns. From what she tells me the treatments are a lot but they definitely work and he is thriving. Having a diagnosis is good although I’m sorry it’s not nothing. :(. Hugs to you and Edward!
The mom of one of my son’s friends has Crohn’s and didn’t find out about it until she was in college. She is so teeny tiny, I could put her in my pocket! Her Crohn’s is mostly controlled, but she has been having flare ups lately and just had a colonoscopy to see if she should change treatment plans or not. My husband has Psoriasis and medications that are available to him are a lot of the same as Crohn’s.
Hugs to you all and good job!
Swistle, my husband has Crohn’s, and if you want to email me before or after you have done your own research, I would be delighted to talk with you about our experience. (Nutshell so you’re not wondering: the diagnosis process was long and hard, but he is currently doing great and has been for years.)
I totally freak out about the hypotheticals more than the realities, but it’s so hard not to “prepare myself” for the former becoming the latter. Distraction is all that works for me, plus some controlled perspective-getting (as in, not other people offering unsolicited it-could-be-worse scenarios disguised as perspective). Also, the only person I know with Crohn’s is a happy, healthy (male) doctor in Boston, married with kids.
Well, I’m so glad that there is a diagnosis and a treatment, although I’m very sorry you have to go through it. Good for you for being persistent and following through. I did not know children could get Crohn’s, that’s how ignorant I am on the subject. Hugs to you.
I’m glad you finally have a diagnosis and that it was caught early! It is good you were (and are) so on top of things.
So glad for a diagnosis – something to move forward with instead of continuing in your previous holding pattern. And so glad that, while apparently difficult, is something that can be controlled and not life threatening. Once I freak out about things, that’s usually my fallback feeling. At least it can be dealt with. Hugs to you!
And now you KNOW. That in itself is a blessing–but we still acknowledge the suckiness. You are strong and can do this.
My BIL has Crohn’s. It took a while for them to figure out what was wrong…several hospital stays and misdiagnosis and a few fits and starts to get him on a good plan but he’s doing really, really well now. It’s been about 14 years since he was diagnosed and you would not even know he has it.
I’m so glad you know and can move forward with helping Edward feel better. All the best to you!
One of my oldest family friends has Crohn’s. He was almost in middle school before he was diagnosed, so he has always been on the shorter side, but he is doing wonderfully well, attending college and enjoying life. I guess I just want you to know that everything can, and likely will, be ok. I’m really sorry you guys have to go through a “diagnosis” of any kind, but the one person I know of who shares it is really thriving.
Yes I want to repeat what others has said…very treatable, and the person I know with it is doing very well. It was tough to diagnose but once they did she very rapidly started doing well. I’m glad that you discovered it early (fairly) in Edward because that make it easier to deal the new reality. My friend was much older and had difficulty adjusting to a new pattern, but once she did she’s fine.
I’m glad that you now have answers and that there are treatments available. Sending lots of hugs your way…
You can do this.
Even when it is a scary answer, it can be nice to have an answer. I hope your path to having this become your normal is an easy one.
A diagnosis is good. A crappy day present seems like it might ALSO be good.
My BIL has Crohn’s that was also diagnosed early and he’s doing great. My son has a chronic condition and I tend to fret about things that MAY happen in 15 years or so but then I realize I should maybe focus on getting him to remember his lunchbox or figuring out what’s for dinner tonight. It took me time to not be overwhelmed by everything, every day but you get there. Good job for following your gut and going through all the hoops to find out what was really going on.
I’m so sorry that Edward is going to have to deal with this his whole life, but I am SO GLAD that he has been diagnosed early. I wasn’t diagnosed with Crohns until I was 22. And I actually bought that exact book as soon as I got out of the hospital. It IS scary to get a diagnosis for a lifelong issue, but now that you have the answer you will be able to help him so much more. For me the diganosis was life-changing; finally I had an answer to all of the pain, depression and strange bowel habits! Once I got onto a treatment plan it was as if I’d gotten a whole new body – able to go to the bathroom normally, pain-free digestion… and not having constant stomach pain alleviated my depression in a way I had never thought possible. It was easier to concentrate — the list goes on. It’s amazing how much life changes when you’re not in pain anymore!
I’m currently taking Pentasa and I love it because it works so quickly! It works differently than the immune suppressants I’ve taken and I haven’t noticed any negative side effects. They started me at 8 capsules a day and that was too much for my body to handle, so now I take two a day unless I’m experiencing issues and then I can increase the dose as needed — usually no more than 4. You’ve probably read by now that a lot of treatment plans are patient-driven since symptoms can get better or worsen from week to week (and even day to day). Once he’s a little older Edward will probably be able to exercise a lot of control over his dosage in order to manage his symptoms.
It’s definitely not all puppies and rainbows, and I am extremely lucky that my Crohns is relatively mild. Everyone’s case is different. Flare ups are still inconvenient, painful, expensive, and maddening. But knowing what you’re dealing with makes everything a lot easier. Good luck and I hope he feels better soon!
Also just wanted to mention that the book scared the crap out of me (ha, ha) but it seems to go into detail of the “worst case scenario” and kind of glosses over the fact that most people with Crohns are able to manage their symptoms pretty easily. Everyone I know with Crohns is able to lead a happy, normal life, and we all manage it differently. I can eat walnuts and poppyseed muffins all day long, but for some reason almonds are a complete no-no. My friend can’t even eat tomatoes because seeds bother him, but he has no trouble with almonds at all. Some people have trouble with grains (a high percentage of people with Crohns have Celiac disease) whereas I have trouble with more than a few bites of raw veggies (but cooked is okay). And of course, lots of people with Crohns are able to eat whatever they want as long as they’re not actively flaring up. :-)
tl;dr: Don’t let the book scare you because most people are fine, and no two Crohns diets are alike.
Oh and the test for Celiac Disease is a simple blood draw. Might be worth considering since so many people with Crohns have it.
My uncle has Crohn’s. It was diagnosed late in life but he is six feet tall and healthy. He has days he doesn’t feel great, but that’s part of the deal. He is in his sixties and is the very active primary (non parent) caregiver for his grand nephew who is a wild and crazy 18 month old. He’s cared for him 2-3 days a week since he was born.
OH NO! but I think that in the large scale of things having something treatable is preferable to untreatable. My son has diabetes, type one diagnosed at age 9 after a nasty virus, and all I could say was at least he can live WITH it. At least we know!
It made a LOT of people uncomfortable to hear me say it but it’s TRUE knowing and living with is so much better than NOT knowing and of course the unthinkable not curable untreatable.
Now you now so how do you move forward? Am I annoying? Sorry, I don’t mean to be, maybe you need a while to get your feet back under you.
I’m not sure what’s next—at his next appointment, I’ll be seeing the nurse-practitioner who specializes in Crohn’s, and she’s going to give me the bigger picture.
chocolate is next!
I’m glad you at least have an answer now. Personally I am an obsessive researcher but I also love to talk to others who have been through it. And by talk I sometimes mean just read their blogs, ha! So in case this might help:
http://www.healthline.com/health-slideshow/best-crohns-blogs
http://www.circleofmoms.com/moms-of-crohns-disease-or-ulcerative-colitis-children
I hate to be that person who *recommends things*, but I just finished reading an amazing book about autoimmune diseases and nutrition that listed Crohn’s as an autoimmune disease. Here is one link to a blog where the author tries the autoimmune protocol of the paleo diet to help her Crohn’s and experiences success: http://gutsybynature.com/2013/10/13/update-60-days-on-autoimmune-paleo-protocol-for-crohns-disease/. And this is the blog of the author of the book, which is called The Paleo Approach: http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol. And don’t let the paleo part scare you–it’s not about eating a bunch of meat all the time, caveman style. The author recommends a very nutrient-rich diet rich in grass-fed meat, seafood, offal, green leafy veggies, bone broth, healthy fats, veggies and fruits, and offers tons of science to back up her recommendations. So I’m sorry to be recommendy, but I was just blown away by this book and the scientist who wrote it (I am trying this out to help heal my own autoimmune disease, psoriasis).
I have Crohn’s Disease. I was diagnosed at age 26, about seven years ago. For the first three years I kept having to go on Prednisone to deal with recurring flare-ups. Eventually, I got sick of that medicine (my body does not handle it well) and decided to look into alternative therapies. I went to a holistic doctor who put me through a bunch of tests, including a fecal test, which showed that I have a soy intolerance, as well as an overgrowth of bad bacteria and candida in my GI tract. I drastically changed my diet and started probiotic therapy and have been flare-up free for over five years now. I was also able to wean myself down to the minimum dosage of my maintenance meds (Asacol).
Then, last fall someone recommended the GAPS diet, which is similar to Paleo eating. I started it (with my son who also has food/GI issues) in an effort to go off of the maintenance meds completely – something I really want to do because they are super expensive, aren’t covered by insurance, and I don’t want to be on medicine for the rest of my life, for the sake of my other organs. Anyways, it’s been over five months now and I haven’t taken any medicine – I also haven’t had a flare-up.
If you’re interested, feel free to email me. Crohn’s is a pain in the arse (literally), but with the right lifestyle changes, it’s totally manageable. Good luck!
Hugs and calm, strengthening thoughts to you and Edward!
“Paul got us a book at the library” <3 Love this line. Hoping you can get it all under control/management ASAP and Edward is feeling better, too.
Sending you hugs and positive thoughts.
Thinking of you, dear Swis, as you navigate this new bend in the river.
Oh goodness. It does sound like a lot to absorb, but good in the long run to know why he’s had all these problems and to now have steps to take to help him feel better and grow normally.
Swizzle I have ulcerative colitis, which is. Cousin to Crohn’s. I was diagnosed at 15 after a year of progressively worsening health. My case is mild and mostly easily treatable. I’m now 40 and in mostly good health, though other autoimmune issues have piled on in the last ten years.
My brother was diagnosed just before 30 be his case is more extreme than mine though we don’t know why.
I hope Edward has good docs and finds a treatment that works for him. And don’t read too much. I read a book after my diagnosis and was terrified of the unknowns for a decade before they came to pass.
My husband has crohn’s. He takes all the same things that Edward will start on, and has successfully managed it with very little trouble (he even eats all the things!) since diagnosis at 27. You can do it. Plus, Edward has a legit excuse to talk about poop a lot, and judging by my same-age kids’ chatter, he will cherish that. ;)
((hugs to you both))
Lots of hugs and good thoughts for you, Swis. I’m glad you have a diagnosis, but it’s still a lot to absorb.
In case it helps to pile onto those who have said the same, I know several adults with Crohn’s, all of whom are happy, healthy, and active. As far as I know, none of their children have it.
As a person with a couple of chronic health issues that I didn’t fully get sorted until my early twenties: WOW, good for you for being persistent and getting a diagnosis. That’s HUGE. Not that it takes away the suckage of the actual disease/symptoms, but in my experience, putting an actual name to the formerly misc. suffering is a really big deal. Good job, Mama. It will likely only get better from here.
I’m glad for the luck (early diagnosis, treatable condition) and so so sorry for the suck. This must be so overwhelming now, but I hope it plateaus pretty quickly and you can get to a new normal that feels doable and okay. Love and hugs for the journey ahead.
Gosh, I had no idea little ones could get Crohn’s. I’m glad Edward has such an empathetic mom in his corner. Best of luck to all of you as you figure things out, and I hope he starts feeling better soon.
I’m glad it’s a diagnosis you can do something about, but sad that there’s something to fret over. Holler into the Interspace if you need anything. (Okay, and to also add: This is How is brilliant. Brilliant!)
A diagnosis is wonderful and it was a long, hard slog to get it. My hope for you all is that it just gets easier from here…that the tough part is over. Good thoughts.
I’ve read a lot lately about the SCD (Specific Carbohydrate Diet) lately as I battle my newly discovered gluten-sensitivity. There are some great stories about people with Crohn’s who regained health and vitality on that diet. Google it.
I was diagnosed with Crohn’s in my late 30’s which (according to my dr) is an unusual time to get it. Usually you develop when your really young or really old. I’ve been on 6MP for many years now; it’s been a godsend. You do need to have your blood checked out regularly (liver damage is a concern). As far as diets, etc. go please know that there is not one thing that works – every single person I know with it has different things they can tolerate, at different times. It will take trial and error, patience and experience. And lots of Cottonelle!! Good luck to Edward! He’s a brave kid to go through all those procedures — and lucky to have such a persistent mom!!
I was going to say this about diet. You’ll read lots of conflicting advice about what people with Crohn’s should or shouldn’t eat, and that’s because they just don’t have something figured out that works for every patient. Some trial and error with a few rules of thumb in mind may be frustrating but will likely work best in the end, so try not to listen to everyone else’s Gospel of Food That Worked For Them.
This is absolutely true. Other people’s experiences may give you a place to start, but each patient is different.
Well, thank heavens you DID have all those tests done. I imagine it’s a whole new world you’ve been thrust into quite unexpectedly.
Edward is such a trooper! Is he going to milk this for as much sympathy as possible with his siblings?
Oh! Well, i most definitely acknowledge your suckiness in this, because I’d much rather Edward NOT have Crohn’s. But I agree, everyone I know who has Crohn’s spent MANY MANY MANY years trying to diagnose it, so I am very relieved for all of you that you got a diagnosis so (relatively) quickly. When I’ve had bad news diagnoses, I still feel so relieved afterwards – like, OK, well that’s now a fact. Now on to research and treatment and ACTION, as opposed to sitting around fretting about possibilities. Once there’s a diagnosis, there are still decisions, and hard times, and annoyingness, but there’s a PATH and that always helps me (mentally anyway).
In summary: hugs to you both! and vigorous high-fives to you for pressing to get this RESOLVED. Living with Crohn’s isn’t awesome, but it’s a heck of a lot more awesome than living with *undiagnosed* Crohn’s.
Sending love and encouragement, Swistle! When you’re ready for recipes that fit whatever diet you choose for Edward and the fam, please send a call-out and I’m sure we’ll inundate you with them.
I am so glad you have a diagnosis, which can offer a way forward, and improvements in health and quality of life. Sending warm thoughts to you and Edward – and your family. You can do this.
I’m glad you now know what is happening with his health. I’d like to second the commenter who applauded your persistence these past couple of years. From what you’ve written in the past, it sounded like you had a feeling the anemia was outside of the norm. Let us know how the treatment process goes — thinking of you and your family.
You are a wonderful mom and way to go in conquering your own fears and anxieties in getting Edward the help he needed. It was a long, arduous process and the road is not yet finished, but knowledge is power and he will soon be thriving!
Hi Swistle, I’m so sorry about Edward’s diagnosis. It is really good though that he has been diagnosed early and treatment has started. My daughter was diagnosed with ulcertaive colitis which is a similar inflammatory bowel disease and its been quite a learning experience working out the right management for her. She was unusually hard to treat though, so hopefully Edward’s experience will be much more straight forward. Prayijng for Edward to be feeling better soon.
I’ve been reading along for a long time, and truly appreciate your writing and your take on life, Swistle. You’ve gotten a lot of good advice in these comments (prepare for the onslaught of dietary recommendations), and I wanted to add the Crohns and Colitis Foundation website as a great resource CCFA.org. I’ve had ulcerative colitis for 20 years now, mostly well controlled with a few lousy episodes. Getting used to the idea of having a chronic disease is in some respects harder than the actual treatment for the disease, but like most things, it gets easier with time, information, and experience. Good thoughts for Edward, you, and your family.
First of all, I’m sorry to hear about his diagnosis. BUT (always look for a silver lining…. try to anyways, I know it’s easier said than done , but seems like you are doing a good job of that already) BUT at least you found out when you did. Many physicians hesitate doing a colonscopy on a child which is really the only way to firmly diagnose Crohn’s….many kiddos go years with symptoms, in pain, and by the time it is diagnosed we are looking at much more advanced stage. You know what it is now and you can start managing it. As for future grandchildren…. let’s not worry about the things we can’t control. :) At least you all know that it is in the family and if any other people present with potential symptoms, there is a jumping off point.
I’m glad you listened to your Mommy instinct and got everything checked out thoroughly – A diagnosis is helpful in that now you can research, treat and address. If you are confident in your doctors, and it sounds like you are, he will be in good hands. Still I am sure the self-education period is worrying and troublesome in of itself but the positive news is there are treatments available that can get him back on the right track, and feeling better, and being healthier.
Well that’s both excellent news and also very upsetting. Although I know nothing about chrohn’s. But from the comments is sounds like if it has to be a chronic disease, this is thembest case scenario, because of your proactively getting such an early diagnosis, so well done, there. And I will pray that the treatments are easy and effective and that poor Edward gets some relief.
I, too, have been too a pediatric hematologist and have been subsequently billed. Yikes.
Thanks for sharing this, Swistle. I was concerned about what you might find, so while Crohn’s is not “good news,” its something that can be treated. I’m glad you finally have a diagnosis; can’t imagine what you’ve been through to get to this point! Sounds like lots of your readers are going to be good resources. Hugs!
Oh, my. I do not know much about Crohn’s disease (except that I think a pro hockey player has it? Potential role model for Edward?). But I am sending you hugs and I will gladly send paper bags for you to breathe into.
I am relieved you have a diagnosis and can treat this early and well! Hang in there.
ack. I keep typing comments that do not sound helpful at all, even though they’re intended to be. I’m sorry to hear that you and Edward will have to deal with a chronic illness, but I’m so glad you’ve got a diagnosis. Knowing is half the battle, right? I wish you guys all the best, and offer many internet hugs.
My dad was diagnosed with Crohn’s at a young age, and mostly controlled it through diet and medicine when he was younger. As an adult he controlled it completely through diet, although he always struggled some with flare-ups. I don’t know if there is anything supporting this, so consider it as exactly what it is (an anecdote), but my dad’s symptoms almost completely disappeared several years ago after he had a sudden awful gall bladder issue and the offending gall bladder was removed. Regardless, symptom control is do-able! Better to know than not know! All that stuff! And also, gah, hugs.
I know nothing (much) about Crohn’s but am glad you have the diagnosis and persisted to get it. I’m also sorry that this is now something you (and Edward!) will have to navigate, but it does seem clear that you have the skills required to sort this out and get him the care required. I’m sorry you need to apply them, though!
Hugs to both of you. So glad you have an answer for what’s going on, and I have no doubt you will do everything possible (and some things deemed impossible) to care for Edward. He’s in good hands!
One good (well, relatively speaking) thing about Crohn’s that I don’t think anyone has pointed out yet is that it is NOT rare. And not rare = lots of research funding. They’ve already made enormous strides in treatment for it in the last 20 years and by the time Edward is a young adult they may even have a way to totally cure it/put it into permanent remission. Here’s to hoping!
I went through a Crohn’s/Ulcerative Colitis research binge about 2 years ago when my closest friend was diagnosed. She discovered she had Crohn’s (initially diagnosed as UC, then revised to Crohn’s) in the most unfortunate way– an acute flare initially misdiagnosed as some kind of GI bug. She ended up having emergency surgery because it went misdiagnosed and mistreated for so long, and it was pretty frightening. But! She’s okay now! She finished grad school, works full time, and is in a relationship. I have two other friends with Crohn’s, both of whom have had uncomfortable flare-ups on and off since they were teens but neither has ever needed surgery. I assume part of that is because they got diagnosed young and treated correctly at the first sign of flares.
I wish you, Edward, and everyone else in the Swistle family lots of luck.
I am sorry you have a challenging diagnosis, but as many others have said you should be very proud of how tenacious you were in getting an answer. As someone with an autoimmune disorder (rheumatoid arthritis) the worst years for me were the years of knowing that something was seriously wrong, but not knowing what.