7 ms·

I am glad this topic came up. My son was diagnosed for Crohn's disease last year. He was 11 years at that time. His CalProtectin was 1040 at that time which ve

• fnord77 5y ago
  I have severe crohn's. Humira worked great for me for several years with no side effects that I was aware of. I was leery of biologics for several years, but I now regret not going on them sooner.
• unclekev 5y ago
  > I am desperately seeking help in curing him of Crohn's. There's no known cure for Crohn's disease, only treatment to reduce symptoms. If you are really lucky it might go into long-term remission, but theres no 'cure' yet. As someone who's been dealing with severe chronic symptoms of Chron's my whole life.... I wish there was.
  • CWuestefeld 5y ago
    unclekev is correct. I was diagnosed when I was ~12, over 40 years ago, and still have it. But despite the fact that there's no cure, there is a lot you can do to control it: * There are a lot more, better treatments today than back when I was a kid. Your GI doctor should be able to help with this. * I believe that the largest aggravator is stress. Your boy really needs to learn to handle stress. In my case, I was rather a perfectionist, and had to learn to just let go of things that I couldn't directly fix myself. And of course the disease itself is a prime stressor, so he's got to come to terms with it. * Different foods can be triggers for different people, due to individual differences plus the areas of the GI tract that are implicated. You need to experiment (keep a journal!) to figure out what these are. Don't fall for someone trying to sell a silver bullet like gluten-free. That may, indeed, help some people, but it won't others.
    • rubyfan 5y ago
      Can I ask what it’s like after remission and being in your fifties with CD? Practically is CD remission what most would consider normal or do symptoms present?
      • CWuestefeld 5y ago
        Honestly, in the big lottery of life, I think I'm still a winner on net. At least for my case, with minor concessions to diet, and with having health insurance that'll pay for my (expensive) treatments, my symptoms are pretty minor. I think I could count on one hand the number of times this year I've had any serious discomfort that seemed connected to the disease. The one thing that bothers me is the persistent problem of poorly-formed bowel movements, and occasional diarrhea. You never really know when this is going to pop up. For short-term things like a night out you can plan ahead, maybe take an immodium beforehand. But there are things I'd like to do that this interferes with, at least to the point of being an embarrassing inconvenience. For example, I'd love to take a rafting trip through the Grand Canyon, but it seems like managing the issue would be complicated in a situation where the best facilities you've got are a bucket in a tent set up by the guides (and even that is only when it's been set up!), so it's a bucket list thing I'll likely never get to.
    • c23gooey 5y ago
      Agree with the stress aggravator. I've had two severe Crohns flare ups (one required a bowel resection), both of those flare ups can be contributed to major stress incidents (first one divorce, and second one the death of my mother) Otherwise I only have mild symptoms that are only annoying more than painful
  • deleted 5y ago
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• GhettoComputers 5y ago
  A friend I know used a good Ayurveda doctor in India, he basically has to eat a very bland diet and all his symptoms went away. In western medicine they said there was nothing they could do. Edit: it eliminated his severe allergies and alleviated the symptoms of Crohn’s, so it seemed like there was more problems besides Crohns.
  • CWuestefeld 5y ago
    As I said elsewhere, figuring out the diet that works for you is important. But this is a personal thing. Every patient has different details, due to the quirks of their own digestion as well as to the areas that the disease is affecting.
  • krackers 5y ago
    Is that actually a cure though, or just avoiding the triggers that produce the symptoms?
    • covercash 5y ago
      Just avoiding triggers, there is no cure.
    • GhettoComputers 5y ago
      He had other issues as well, like permanent allergies.
  • bobthepanda 5y ago
    Elimination diets are pretty commonly prescribed where I am in the US. Basically, eliminate everything that is not absolutely necessary, and then slowly add back things to see if they mess you up, and then you can at least isolate problem foods.
• toastyCheese 5y ago
  I have a mild case of Crohn's. My doctor has put me on Humira and it is a miracle drug. Ever since starting the medicine I have been in remission (5+ years). I find staying active and eating healthy diets also really helps.
  • killjoywashere 5y ago
    Humira covers a lot of ground in auto-immune disease. toastyCheese is not exagerating to call it a miracle drug, but it is not the only miracle drug. There are other anti-CD20 monoclonal antibodies, such as Rituxan, so don't get overly fixated on just one brand name.
    • epgui 5y ago
      This space is moving extremely quickly, and there are a bunch of other targets with drugs currently on the market or under investigation and showing results. I have to say the progress in recent years has been extremely exciting.
  • epgui 5y ago
    Biochemist with CD here (taking adalimumab + 6-mercaptopurine), this is the best advice. There's no curing it, the best you can do is take the treatment and be as healthy and active as you can generally! Kudos.
• codexcodexcodex 5y ago
  I was diagnosed similarly at 46, but celiac, not Chron's. I spent a 26 years battling the strangest health issues only to find out that I'm allergic to wheat. My body didn't produce the classic symptoms of celiac, which is my disease, until it did: Duhring disease, or sores that form in response to gluten reactivity. The gluten-free lifestyle is a shock for someone who loves bread and pasta as much as I do, but I feel a thousand percent better. Inexplicable weight gain my entire adult life disappeared seemingly overnight, as if my body couldn't wait to get rid of it. I went from 235 to 170 without even trying. Doctors tried over and again to diagnose me with bipolar disorder since I was 21, and I kept telling them they were full of s**. The symptoms of depression and mania have completely disappeared. I haven't had to take an antidepressant or antipsychotic in over a year. I was taking both every day. Worse was hives. I had this untreatable disorder known as cholinergic urticaria, essentially allergic to my own sweat, and now that's gone as well. This urticaria disease is so debilitating I wouldn't wish it on the worst of people. I still feel like an idiot. I always knew it was related to yeast. I told doctor after doctor, but they kept thinking it was some sort of fungal infection. I knew yeast was causal somehow. I never thought it would be so simple: wheat is my personal poison. A diet without gluten has given me a new lease on life, so now I have to confront the world with complete health, and that is truly difficult. I lived my entire adult life alone because I was poisoning myself with gluten. And make no mistake, I was absolutely one of those people poo pooing gluten-free this, gluten-free that as just another ridiculous fad diet. Was I ever wrong!
• boplicity 5y ago
  A lot of people have luck, especially for children, with The Specific Carbohydrate Diet, which eliminates all grains and starchy food, among other things. It's based on relatively outdated science, but it still seems to work for many people. (It was created when there was a very limited understanding of the microbiome.) There's an active Facebook Group full of people who follow the diet[0]. Seattle Children's Hospital [1] uses the diet as one of the primary treatment modalities. Even if you don't choose to follow that diet, the primary goals should be to eliminate any inflammation, and also find foods that are safe to eat. Most people who do well, in terms of outcomes, learn to be very careful with what they eat. No matter what, it's a long term learning process. Eventually, you want to eat as diverse a diet as possible, while still avoiding any foods that are potential triggers for inflammation. Unfortunately, most gastroenterologists are not knowledgeable about diet, and are not helpful, in terms of dietary treatments. I would recommend finding a doctor who is supportive of both dietary and drug-based treatments, as opposed to a doctor who has the blinders on, and sees drug treatments as the only option. [0] https://www.facebook.com/groups/SCDers/ https://www.facebook.com/groups/SCDers/ [1] https://www.seattlechildrens.org/conditions/crohns-disease/ https://www.seattlechildrens.org/conditions/crohns-disease/
  • voxl 5y ago
    Define success. There is good reason that most gastro doctors don't suggest diets as a solution and instead say things like "avoid anything that bothers you." It is because there is no evidence that a particular diet helps with inflammation. You might be able to avoid symptoms of pain with a particular diet, but that is only a very minor benefit. If you aren't preventing the inflammation you are still going to suffer all the worst effects of the disease. If these kids aren't getting routine colonoscopies / MRIs (like one every two years or more) to try and detect if there is any inflammation, then they have no idea if the diet is actually working for them or not. If you go to any Crohn's discussion group where it's the actual _people_ with Crohn's talking and not their parents, they will say things like: "Every asshole thinks they have 'thee diet' that will work, when they don't." See for example /r/CrohnsDisease. > while still avoiding any foods that are potential triggers for inflammation There is no evidence that specific foods are triggers of inflammation, only triggers of _symptoms_. The best guess we have is a particular type of bacteria + bad genes is the real cause of inflammation, but that bacteria exists everywhere (including drinking water).
• epgui 5y ago
  I'm a biochemist with 12 years of postsecondary education in life sciences, and I have Crohn's Disease. There is no cure for CD, you must do your best to accept that. Furthermore, despite what you may have read in this article, elsewhere on the internet and in countless anecdotes (such as on this hacker news page in the comments), it is highly unlikely that changing your diet will affect the disease. At most, changing the diet will cause or reduce some discomfort (imagine gas bloating up ulcerated tissue, or capsaicin from hot pepper touching an ulcer: the gas and the capsaicin doesn't cause the ulcer, and doesn't make it any worse, but it makes it hurt), but no diet change will stop the disease. The best thing you can do for your son is to keep regular follow-ups with a gastroenterologist and follow the suggested course of treatment. That will probably mean taking biologics such as anti-TNF medication or other antibodies, but there are a variety of ways to approach treatment and it depends on the patient.
  • bladegash 5y ago
    I have Crohn’s as well and agree with the sentiment in this post. Mine mostly affects me due to strictures and the diet part most definitely appears to be correlated with foods producing greater amounts of gas/discomfort. Only two things that have worked for me are prednisone and Inflectra. For others, Budesonide or other biologics work for them. For the unfortunate, surgery is one of their only options and many times is temporary. Crohn’s definitely sucks and I would do you best to find a good GI and be extremely persistent. It took me over a year to find something that works and a lot of really tough days/nights/weeks/months in between. As a parent myself, I can’t imagine how helpless you must feel watching your own child struggle with it. Wishing you guys the best of luck and thoughts are with you!
    • epgui 5y ago
      I'm sending you good vibes and wishing you luck! Somewhat paradoxically... I'm curious if you've tried to modify your diet by including extremely spicy foods on a daily basis? Most people approach diet modification as a way to maximize comfort and minimize pain, but my strategy is to use capsaicin as a 100% safe and pure-pain mechanism to sound the alarm when I develop an ulcer. It's not always immediately obvious when you develop an ulcer, depending where in your GI tract it is... And this is where knowledge is power: if you can somehow know that you're going to flare up before you actually flare up, then my argument is that you have a better chance at damage-control. Similarly, if you are more pain-sensitive to ulcers you would be getting either way, then you might be aware of more episodes of inflammation than you might otherwise be. With my super hot pepper diet, knowing that it's purely pain and no damage makes the pain itself a lot less stressful, and I have very occasionally used this signal to take a single 2.5mg dose of prednisone (I've been on the same no-refill bottle since 2013, so this doesn't happen often). Since 2013, I've never had to take more than one dose at a time, and judging by how many pills I have left, I've probably only done it 20-30 times or so (I should really keep a journal). (Disclaimer: I wouldn't put a lot of faith in this tip, and I'd strongly caution against taking corticosteroids for more than a few days, and to talk about this with your doctor before trying it.)
• covercash 5y ago
  Unfortunately there is no cure and everyone’s disease can differ so there isn’t one particular way to manage it. You’re going to have a journey of trial & error, my recommendation is to find a great GI doctor who will work with you on the medication side of things as well as advise you on the dietary aspects. I run the r/CrohnsDisease subreddit[0] which has a pretty responsive community and a ton of useful information you can search through to further educate yourself. [0] https://www.reddit.com/r/CrohnsDisease https://www.reddit.com/r/CrohnsDisease
  • bladegash 5y ago
    Thank you for running this subreddit. I lurked it quite a bit early on in my diagnosis and it was a tremendous resource. If nothing else, felt a little bit less alone and made the path ahead seem slightly less scary/uncertain. Thank you again!
    • tradertef 5y ago
      ditto
  • hi41 5y ago
    Thank you! I will check this resource.
• rgrieselhuber 5y ago
  I know a few people who have successfully “cured” themselves of it, despite the naysayers. I don’t know if it is technically a cure or remission but the net impact to their quality of life speaks for itself. This is not medical advice and I don’t know the details, unfortunately, but it basically came down to finding the right diet and avoiding industrial oils, highly processed food, etc. Downvote away!
• Terry_Roll 5y ago
  Overeating, bigger meals, more processed foods, less veg, more chemicals used to grow food? I wouldnt look for one solution, I would look for many solutions. Its too simplistic now a days to look for one cause and one solution. So omega 3 can cause inflammation yet its a popular supplement. What about gut bacteria, some ulcers can be caused by gut bacteria which a course of antibiotics can treat, but most people dont know penicillin based antibiotics get broken down into penicillamine which helps remove copper from the liver used for Wilsons. Now Heme and Chlorophyll are identical except Heme has an iron ion and Chlorophyll has a copper ion, but I've never heard a doctor tell me or anyone else to eat more greens or take a chelated copper supplement when prescribing a course of penicillin antibiotics, do they want the infection to clear up? Its also worth noting, that when Alexander Flemming discovered antibiotics he said antibiotics need to keep being taken until the infection has cleared up. Now GP's issue standard fixed length courses and tell us to come back if its not cleared up and we wonder why we have antibiotic resistance!?! If anything the gold standard is to use antibiotics initially whilst phages are being developed to target the infection and then go onto the phages. Phages are expensive but mass use could bring the price down. And with antibiotics, its worth bearing in mind that bacteria can go dormant in the body and lie in wait until conditions are good enough for them to go active and breed again and like Covid they can evolve. Bacterial strains can be used to work out who has come into contact with others (sexually) who have the same strain infection. And if you visit planet earth's deep freeze, ie polar regions, you might be able to find some ancient strains of bacteria. Anyway I'd look for a multitude of solutions and be ruthless with failure if you want results. You only live once, demand the best, help drive up standards in every part of life!
  • e9 5y ago
    Chlorophyll has magnesium ion, not copper. See below link for reference. But there are chlorophylls that have copper ion so you have to be careful which greens you eat if you want copper to be present. https://pubchem.ncbi.nlm.nih.gov/compound/Chlorophyll https://pubchem.ncbi.nlm.nih.gov/compound/Chlorophyll
    • Terry_Roll 5y ago
      https://en.wikipedia.org/wiki/Chlorophyllin https://en.wikipedia.org/wiki/Chlorophyllin
• upelephants 5y ago
  Others have provided good advice about medicinal management. I know from my own personal experience with a close relation. What I haven’t seen mentioned yet is the FODMAPS diet to control symptoms [0]. This is a diet specifically designed by Monash University, an Australian research institution, to treat IBS and IBD flare ups about one decade ago. It is based from modern science, it is easy to follow (you can run online searches for specific ingredients if you forget), and it allows for quantitative measurements. FODMAPS stands for fermentable oligo-, di-, mono-saccharides and polyols, which are types of carbohydrates that aren’t absorbed well by parts of the GI tract. Another comment mentioned The Specific Carb Diet, but that is outdated and will needlessly restrict your diet and freedom. For example, grains are ok: it’s the soybean oil used in cheap bread that isn’t. The person I’m close to with Crohn’s enjoys a life unencumbered by their disease. They take their medicine once every two months and they eat out at restaurants or at other people’s homes without a second thought. They eat dairy products, which are not immediately FODMAPS friendly, but avoid garlic, onion, and broccoli. They know they can eat green beans, but not pinto beans. Because of the modern research that underpins FODMAPS, they know they can use garlic oil to get the same flavor but without any of the FODMAP carbs. But, because they follow the diet most of the time, they can occasionally “cheat”, too, and eat some of the high FODMAPS foods every now and then. You can take charge and your child does not have to suffer. You have agency. Good luck. [0] https://www.hopkinsmedicine.org/health/wellness-and-prevention/fodmap-diet-what-you-need-to-know?amp=true https://www.hopkinsmedicine.org/health/wellness-and-preventi...
• kromem 5y ago
  Enteral diet for Crohn's pediatric cohorts has roughly the same effectiveness at remission as corticosteroids. The article linked briefly mentioned this, but you'll find more info in this excellent meta-analysis here: https://pubmed.ncbi.nlm.nih.gov/33450982/ https://pubmed.ncbi.nlm.nih.gov/33450982/ Good luck.