Newly Diagnosed with IBD? 5 Things to Know

53 Comments

  1. This is a great idea for a column – thank you.
    A few tips:
    Make sure your GI doctor specializes in IBD. When I was diagnosed, I thought being a GI doctor was the specialty. It isn’t. GI doctors can specialize in all sorts of things like livers, etc. Also, find an incredible doctor and even if the wait list is a year out or more, put your name on the list. The one great thing is that well, you’re not going to be cured, so you have all the time in the world to wait for the best doctor you can get. And once you’re in, you’re in. Even if you’re healthy when your appointment comes up, just go! And as Tina said, keep looking till you find the right one. It took me years to find a great doctor and I’m so glad to have him. PLUS, he’s 100 times better than any other doctor I’ve had before.
    It’s OK to try and get better via diet and lifestyle, but be aware that the more you try to fix your situation, the more you’ll ultimately end up blaming yourself for not getting better. The reason you are sick is not because you are eating gluten or drinking milk or exercising too much – it’s because you have an autoimmune disorder. Please remember this. When people offer you advice, play a song in your head and just nod. They mean well, but if you’ve never experienced something, frankly, you should just relax and not talk. Or as someone once told me “just worry about you”.
    For those who are not sick but think they can help, as someone who has had IBD for over 15 years, there has rarely if ever been a time when someone has said to me “Have you thought of doing _______?” where I haven’t thought or already tried what they are recommending. So you don’t have to worry.
    Also, be your own advocate. Most often, you’re on your own, so make sure you look out for yourself.
    And most importantly, be kind to yourself. If you have coping mechanisms that you can no longer use (eating well, exercising), please find new ones Your mental health is as important as your physical.

    1. @laura: Great great advice. Having a specialist in the type of disease that you have is so important. Don’t see a hepatologist (who is technically still a GI!) if you have IBD. Find an IBD specialist, even if you have to travel, who takes the time to really do battle with you. Surround yourself with scientific and emotional support. Some people might not be ready to help–give them time and concentrate on those who can step up to the plate now. And while you may be on your own, remember that you are not alone!

    2. @laura: So true! Great advice. I wasted 2 years blaming myself, and now I am at the stage where if it doesn’t get under control and the Entyvio doesn’t work, I’ll need surgery.

  2. This is very timely. Thanks for sharing! My son was recently diagnosed with Crohn’s and my daughter is being tested soon for it. It’s been so overwhelming. Any pediatric IBD resources? Would love to find holistic pediatric nutritionist too. Thanks for all you do, Tina. Hope you do well with the meds and reach remission.

    1. @Leah: PLEASE please seek out a pediatric registered dietitian who specializes in GI issues. I’m a pediatric RD and there is a HUGE difference between a nutritionist and dietitian (have completed a university education + practicum experience in the medical setting). Only Dietitians (not nutritionists) are permitted to work in the medical field and hospitals. In addition, within the pediatric world we specialize to certain areas (e.g.: GI, diabetes, ICU, etc).

    2. @Victoria: @Leah: BOSTON CHILDREN’S HOSPITAL!! They have the #1 pediatric GI team in the country. Their IBD team is incredible. Full wrap around care. HIGHLY recommend them.

  3. I don’t have any advice to share/experience with IBD but wanted to say how amazing I think you are! The grit you have to not let this disease keep you from living your life is inspirational! I have a chronic genetic disease and don’t fully follow the recommendations…I’ve decided the benefits/fun I gain are worth a little extra risk 😉

  4. Your blog has helped me immensely- I have been a reader for a few years, but was truly helped when my 17 year old son was diagnosed with ulcerative colitis last December. As I was sitting there is the recovery room after his colonoscopy, listening to the doctor tell me what he had, I swear the only thing holding me together was thinking of you. Knowing that you were still active, and living a full life helped. My son is currently on Remicade and doing so-so. He is also struggling with pancreatitis ( which seems to be finally getting better after stopping his 6-MP – likely it is am allergic reaction to that). My fingers crossed for you that you hit upon the right combo of men’s. If my son ends up in Boston for college in a year ( he loved Boston University!) I may hit you up for your GI MD name for him

  5. Wow, I’m sorry you’ve had to go through so much over the last 5 years. I don’t know very much about IBD, but it sure sound like a tough disease to have. I hope they find some combination of medicines and diet to help you very soon.

  6. Thanks for this post Tina. I appreciate your honesty and openness. I have read some of the judgmental comments on your blog before regarding your food and lifestyle choices and I just cringe. How dare people think they have any right to judge you or your choices?!
    I admire you and give you a lot of credit for living such a full life despite your disease. Being a mom is super hard and I can’t imagine having to worry about flare symptoms while trying to care for a baby and toddler.
    I agree whole heartedly that you need to live your life in ways that make you happy. Otherwise you would be letting the illness control you and you would go crazy.
    I really hope this drug works for you and you can finally have some time free of symptoms!

  7. Your honesty and true caring for others shines through. Way to keep a positive attitude, I love your blog and wish you only continued strides in health, thank you for a beautiful heartfelt post.

  8. Hi! I was just reading about another blogger’s struggles with judgmental comments. She was explaining how she feels hesitant to be so forthcoming about her life because of negative responses. Since I read this I have been thinking about how hard it must be to open your life up to everyone like you do. I do not have IBD, but I am a mom to two young children and I try to live a healthy life for them and myself. I just wanted you to know that you are an inspiration to me and I appreciate your blog. Actually, I joke with my husband, “Oh, you like these KIND bars? My friend Tina turned me on to them!” I hope you are able to get a handle on your disease soon – I truly believe being positive helps and how can anyone have a positive outlook if they’re not having any fun?

  9. If you are open to natural solutions, I know that therapeutic grade essential oils have made a huge difference for a lot of people suffering with this, without any side effects. You just have to make sure that you are using high quality pure essential oils. Most of the oils you find in the grocery store are synthetic (even if they say 100% pure on the bottle). I have read that some sufferers find success with a digestive blend, frankincense, thyme, oregano, …. If any of you are interested in learning more or want to know how to get them, let me know.

  10. Thanks for the update. I saw an Entyvio commercial on tv last and was wondering how you were doing. Good luck with the bridge

  11. It is great how you are sharing your journey and experiences with the world – so strong of you! I cannot believe you are five years into IBD, keep pushing forward!

  12. I have had UC for about 18 years; I got diagnosed at age 19 after 2 months of going to a thousand different doctors trying to figure out what was wrong with me. I cannot back up enough what you said about finding a doctor you love. It makes the biggest difference finding someone who truly cares about you and your health. And I agree about the medication. There have been a couple times I’ve been in remission for a while and I’ll think I can back down on my maintenance meds, but it always leads to flare up. Keep up with those medications! I love that you are sharing your journey with UC.

  13. Great advice, ensure = the worst! I have been stuck in a crohn’s flare for a year now. You are totally right, you have to do you and live your life (as best as you can) to keep happy during the tough times.

  14. Instead of IBD, I have Celiac disease. Although it’s very different, it has the same puzzling autoimmune basis and has damaged my intestines to the point that absorbing nutrients is difficult at best. I’ve been gluten free for over two years and still have symptoms of malnutrition. Could you do a post on what particular suggestions Nicole has for nutrient absorbtion/what to add to your diet? I’m afraid that my area doesn’t have very enlightened RDs.

  15. I saw my dad suffer with this disease for most of my childhood and into adulthood until he lost his colon to colon cancer almost 20 years ago. It is a horrible disease and I don’t wish this diagnosis on anyone. All I can say is that your advocacy for living with and treating this disease, especially to active, healthy women, is HUGE! This is a disease that shouldn’t be swept under the rug just because it’s embarrassing! Thank you for sharing your story and experiences. I hope the best for you and hope that you can achieve remission SOON!!!

  16. I can’t believe someone came on here to try to sell you essential oils. I am feeling stabby for you! UGH!

  17. Sending lots of good vibes your way that the entyvio kicks in! Your blog was very helpful for when I was diagnosed with Crohn’s disease. I appreciate the openness. I was lucky that Remicade put me into remission – and I was able to taper off the foams and steroids. We have even now half the dose from the max and am keeping my fingers crossed that I stay in remission. I am probably the opposite where when everything failed and I got worse I embraced Remicade with open arms. I was so tired of steroids.
    As for advice…listen to your body and what works for you. If I had a dollar for every time someone attempted to tell me what my miracle cure would be I would be rich. IBD treats everyone so differently. I am unlucky to have IBS on top of the IBD so that complexes things as far as diet but it is all so individual.

  18. Thank you for such an honest post. I have suffered with UC since 2007 and definitely can relate to your post about IBD. Just wanted to say thank you for sharing. It really helps.

  19. Love these tips. I’m newly diagnosed with Crohn’s, hyperthyroid, liver failure and a few other autoimmune diseases after TOO LONG of living in frustration, fear, and pain. Having the diagnoses is helpful, but the fact that there is no ‘cure’ for any of my conditions is enormously frustrating. I’m being admitted to a hospital across the country for 4 weeks for my liver tomorrow, and I am having a Crohn’s flare today! It’s like we can’t win. I think it’s important to realize that normal isn’t normal, and that my old ‘normal’ can’t be a reality anymore. It’s about getting used to life like this and realizing that yes, everything does happen for a reason and I can’t have as much control as I would like!

  20. Hi Tina! Long time reader here but I almost never comments lol. But I just want to let you know that I could only imagine what you are going through, and thank you for being so open about your diagnosis. And I love your optimism and persistence! Best of luck to you!

  21. Loved this post. I just want you to know that you are touching people not just with IBD, but with other chronic illnesses too. I have a chronic inflammatory nerve disorder. I used to have to sometimes use a wheelchair when I left my house because of it. It still impacts my life every day but things are much better. SO much of this post resonates with me, and the fact that you are a mom fighting this disease inspires me so much. I have a nine month old baby boy. I’ve been reading your blog for 8 years!

  22. I’ve had UC for over 15 years. I’ve never done infusions, but definitely had to do numerous rounds of steroids. Currently taking Imuran. It has helped. I still have flares, but not nearly as bad as before the medication. I am also gluten free and mostly dairy free. Still enjoy my wine and gin and tonics!
    I agree that it can take over your thoughts. I unfortunately have to take antidepressants to keep from being overwhelmed.
    Just like you, my first GI doctor was horrible and I am so grateful I have found the doctor I currently see. She can tell how I’m feeling just by looking at me. She truly cares about her patients. Finding the right doctor is key to fighting this battle.
    Good luck!

  23. LOVED this, Tina! Especially your point about feeling your worst doing AIP, restricting exercise and coffee. People who don’t have autoimmune conditions or chronic health challenges don’t get that you’re ALWAYS thinking about how to feel better and searching for answers. If you’re doing something (eating/exercising etc.) there’s a reason for it! When someone is on me I usually think “Bitch, you don’t know my life!”. Of course, I usually just smile, nod, and shut the conversation down ASAP 😉 That said, I do appreciate advice from people who are undergoing the same health challenges I am.

  24. Tina, you’re so inspiring. What a positive attitude you have. I am so impressed and wish you the best and appreciate so much all that you share about your health on your blog.

    Also, since I’m an RD I’m happy to know RDs have helped you, and that you included seeing us as one of your tips!

  25. I really hope this works for you!!! I started 40mg of pred and just dropped to 35 this week.. Still not better. Usually steriods work faster according to my Np.. I pray I get relief ASAP. I have improved but still bleeding, feel bloated and you know the rest! Around 20mg I will either start stelara, entivio or clinical trial. I know how you feel and We are playing by ear for now. Sucks! i have two young kids and I refuse to let this control me. We just got back from NYC but I didn’t let it stop me! Gotta live life. I also fought the drugs for years. I was diagnosed w ulcerative colitis then it changed to Crohns last year. Gave into remicade.. It worked nicely and just suddenly stopped a few months ago:(

  26. Hmm, really interesting last point. I wonder how much stress influences this disease? Stress is a huge influencer on our perception of pain/increases sensitivity to the tissues during injury which results in more pain. I wonder if this is quite similar then, i.e. if more stress (whether life, sleep, emotions, diet, relationships, career, hormonal, etc.) equates to increased/painful flares?

  27. Thanks for being so open. I can relate to everything. I became dependent on steroids so started Imuran a few months ago and have been gf for a couple months. I am slowly getting better but it’s day to day. The fatigue that accompanies the flare is no joke. I’m a marathon runner and refuse to let this stop me but it has limited my training and racing to shorter distance as I seem to have an increase in symptoms with increase distance or intensity. I feel empowered just to get out the door even if the run involves many bathroom stops. I will only run if I/my Dr feel like it is safe. I will not run if dizzy, severely anemic or dehydrated and I try to keep nutrition in mind as I eat less on days that are bad IBD wise. I agree with living life and dealing with this is so individual so one should try not to judge. What increases symptoms with one person may not in another. As long as we are open and honest with our Drs and they are supportive, go for it! Appreciate the good days and run with it!! 😉

  28. Just found this site. Sorry in advance if this is wrong area to post. Got diagnosed with UC at 48 in 2014. Now after 17.5 years i just lost my job. It’s hard enough just trying to find a good paying job. Then add my UC in the mix . My last job I was able to manage my symptoms since I had a lot of freedom and had a bathroom close and so tenured. Going forward and now i am looking at outside sales jobs etc that require extensive travel etc. I worry I won’t be able to perform at all times. I worry about lunch. Taking people out to lunch. Being taken out to lunch. Staying in car for long periods. I don’t know what to do or how to handle this ? I guess I’m fortunate I only avg 3 BM a day. But I never know when. And I have urgency blood and diarrhea with my BMs. I am on lialda 3-4 a day. Azasan 150mg which was increased from 100mg. Just started rowasa every nite. Have not Been taken consistently , maybe if I do this will help? My symptoms are not that bad but bad enough that scares me how do I work a normal job I’m skilled at?? Often wonder should I start remicade or entyvio when I’m only going about 3x a day sometimes 2 and 4,but still have the usual symptoms. I’m at cross roads. I want to keep fighting but also need to find a job as well. Obviously I can’t tell new employer I have UC. I feel my GI doc just keeps playing with Meds trying to find the right mix. I’m not getting better but not worse imho. Sorry to ramble.
    Any advice would be helpful. Ty

  29. Hello Tina
    Thank you for sharing your experiences online! I been reading your blog for many years and your are an inspiration. I always had digestive issues since I was a teenager, but I was diagnosed yesterday after my first colonoscopy 🙁

    I was given a rx of cortifoam, and Pentasa. Hopefully this will work.

    I hope you and your family are well and have a good weekend

    Wendy

  30. Hi there,
    I stumbled upon this after looking up Entyvio. I am going to start my first infusion in a couple weeks. I am to the point where swearing off all the “bad” meds has gotten me even more sick. I can’t stop losing weight, I am on Uceris and Apriso, but am ready to start something that may actually help.
    Any advice before I start? I am worried about my immune system, I don’t take many vitamins or supplements these days because of the lack of absorption.
    Happy…and sad…to see other UC sufferers out there with their experiences.

    1. I hope Entyvio works for you! Honestly, I know the “bad” drugs are scary, but when you consider your quality of life right now, I assume life can’t get much worse. It look about 5 months for Entyvio to work for me, so hang in there and keep the faith. I’ve been in remission (after 5 miserable years) since July, so I’m happy with my experience so far. Good luck!!!

  31. Thank you so much for this post. It is such a relief. My boyfriend struggles immensely with this disease, also for about 5 years now. He has been “stubborn” (for lack of a better term) with his care. He has wanted to try everything himself first. I cannot say that I blame him. However, he has also reached a point where he is understanding the kind of care he needs. We also live right in South Boston. I wish I had known about your cycling fundraiser over the summer! Do you mind sharing your GI doctor at MGH? We are currently trying to transfer his care from DHMC in NH to MGH.
    Thank you again..you are an inspiration.

  32. This is a great post and I just want you to know how much your blog is appreciated – it is a source of encouragement to me for fitness goals, recipes, and also as a source of hope for my daughter who is 13. She was diagnosed with UC last year and while her first year of treatment was quite hellish (multiple rounds of prednisone and the first oral agent they selected was ineffective), she is doing really well right now! I appreciate so much you advocating for sufferers of this disease!!

  33. My 15 year old daughter was diagnosed with IBD this past Thursday….not sure if it’s Crohn’s or UC. I have a huge range of emotions, especially as I discover more about this disease. Although I feel completely overwhelmed and helpless at this point to help her, I appreciate you taking the time to write this post…I will have to go and look at your others. Thank you.

  34. Thank you SO much for sharing this!! I’ve had an autoimmune disease since I was 12, but just recently got diagnosed with colitis (23 now). I’ve been following a mostly AIP diet for the past month and my symptoms have never been worse. It’s very frustrating but it’s nice to hear you went through the same thing. Everyone is so different and I’ve heard miracle stories from AIP, but I’m starting to lose hope for myself (even though it’s been such a short time, I can’t live with these symptoms!) I’m so happy you’re feeling great!

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