Throughout our lives, we’re taught that a nutritious diet and regular activity will help our body be at its best. This is even truer for those with Crohn’s disease and ulcerative colitis. While diet and activity aren’t cures for inflammatory bowel disease (IBD), they can help some patients manage their IBD. This is why we are starting the Total IBD Health program.
It’s hard to follow advice and tips from sources when we’re not sure they actually understand what we go through on a daily basis. So we want to hear directly from you – the IBD community – about how you manage your Crohn’s disease or ulcerative colitis.
After you submit your Total IBD Health suggestion, we will review it and put your item in the correct section of the page. Other IBD patients will be able to easily find your tips.
Please click below for the Total IBD Health submission form.
Thank you for your contributions to the page. We look forward to sharing advice from fellow IBDers and professionals for Crohn’s disease, ulcerative colitis, and ostomy patients to see.
Total IBD Health Blog
It’s natural to develop anxiety in a variety of situations with Crohn’s disease and ulcerative colitis. You begin to have natural questions that begin with “What if…” and in a short amount of time, that list can grow so much that you end up staying home to avoid difficulties.
The problem with eating out is that it’s how people socialize these days, so if you stay home you alienate yourself. Before you know it, that one time you stayed in becomes 5, 10, 20 or more times that you’ve avoided going out. We do that because it’s easy and staying home is comfortable.
At the same time, missing out on being with our friends is a real bummer. We see photos or check-ins on social media – it’s hard to see that knowing you could have been there. Eventually, those feelings can snowball out of control into a wide range of emotions that aren’t healthy.
SO WHAT DO WE DO AS IBDers? We have to step out of our comfort zone and eat out with our friends and family. The key words I used are “friends and family.” These people know what you go through and tend to handle your Crohn’s disease or ulcerative colitis in a similar way that you handle it. You just need to have the confidence to know you will be okay. This can be challenging, but we need to allow ourselves to grow to learn how to deal with our disease.
This means that if you are confident, secure, and open about your IBD, your friends and family will likely be supportive and do what they can so you are able to join them. If you are upset, depressed, and closed off about your IBD, they won’t know how to help you, so it leaves them little opportunity to include your comfortably.
When you go out to eat with IBD, remember that that you don’t have to dive head first into a situation you’re terrified about. You can start slowly and ease your way into it, going only to places you want with the people you want. Here are a few easy tips to follow when going out with IBD:
1) Surround Yourself with Good People – If you are like me, you have different friend groups, some of which you are closer to than others. Start with the friends who you are closest and most comfortable with. These are the people who will be happy that you are out with them at all – they’re very encouraging.
2) Be Open About What You Need – When you begin to go out with the people you’re comfortable with, be open about what you need. This might be a certain type of food that you can tolerate and a place that you know which has accessible bathrooms. The list of what you need might be longer than just those two to start but share what you need because there are always restaurants to go to.
3) Plan Your Day – Every IBD patient has worried about going out to eat, so what do we do? We don’t eat. If we don’t eat, there is less chance of pain and less chance of needing the bathroom. We don’t need to starve ourselves for the entire day. If you are going out for dinner, plan your meals for the day and make sure you eat things that you know work with your system. If needed, take anti-diarrhea medicine on an empty stomach before you go out. It works best taken an hour before you eat.
4) Ease Your Way into Going Out – You don’t have to sit down for a 5-course meal with your friends the first time you go out. Start slow and build up your confidence that things will be okay. Maybe go out for a frozen yogurt or something small first, then move on to appetizers, before graduating to a dinner that you are confident about.
5) Say NO – A big problem with IBD is that everyone thinks they understand Crohn’s disease and ulcerative colitis. We’ve all heard “Oh, that feels like a stomach bug right?” Wrong. No matter what anyone says or thinks, you know your body better than anyone. If they offer you a piece of food, to share a plate, or anything else you can say no. It won’t hurt their feelings. Eat what you are comfortable with and say no to anything you aren’t with.
6) Know Your Restaurant and Bathroom – Every restaurant has different bathrooms and different crowds. I’ve even been to men’s bathrooms that don’t have doors on the stalls, which is especially nerve wracking when you go to the bathroom with an ostomy. Do some research, even if you have to go to an area of restaurants you might be attending, and check out the bathrooms ahead of time. Last thing you want is to have to run to a bathroom that only had one stall and has a long line. Suggest a place to eat that has good bathrooms but also isn’t overly crowded.
7) Be Mentally Prepared for Anything – Something I’ve learned is that adversity makes you a stronger person and if you can deal with the worst situations with strength and grace, everything will be okay. I’ve been out in public when I’ve had an accident before my ostomy or a leak after my ostomy surgery. It can be HORRIFIC. We just have to take a deep breath and deal with the situation as it unfolds. I’ve had to walk up to my friends and tell them, “I’m really sorry, we need to go now.” You know what they’ve said any time that happens? “Okay, let’s go and get you taken care of.” Be calm, handle the situation and then regroup once you have the time to reflect and figure out what happened. Once you have done that, hopefully you can fix the problem and enjoy the next time you go out.
8) Don’t Miss Out – Even if you have a bad experience, it doesn’t mean that it will happen every time. You only live once. You don’t want to miss out on living this life and being with your friends. Learn from mistakes, problem solve, and continue to go out to be social with those you want to spend time with.
In the end, we need to do what is right for us. If you are flaring, not feeling well, and in pain, just be open about it and let those around you know that tonight isn’t the night but that you will be joining them next time you feel up to it. But if you are feeling well or even just okay, it might be time to figure out a game plan and venture out, even if it is just for a little while. Who knows, in time you might just realize that going out and eating with friends is more doable than you thought.
I grew up in the days of mental health being taboo. I didn’t want to take any antidepressants or see any type of psychiatrist because I equated that to people that were nuts. I thought I’d be thrown more medications to take and appointments to attend. I imagined I’d be laying on a couch experiencing a one-sided conversation; this all while being analyzed by someone looking over their reading glasses. Over the years, I’ve changed my views 180 degrees. I’m not inferring I’m completely nuts, but I’ve learned the needs and benefits of having a mental health team coinciding with IBD.
I fought back the cloud of stigma when my anxiety was at an all time high. I didn’t know what was causing it or that it even was anxiety. Then, the door literally opened to a tall male whose spouse has an autoimmune disease. He would be one of my most beneficial additions to my care team. Immediately, there was an underlying understanding that this male knew what my daily life was like because he lived through it personally, through his spouse and as a caregiver. Each time I would have a scheduled appointment with him, I knew, for at least that session, I’d have someone that would interact with me on a level of understanding and care that I could relate.
I’ve learned through this third party outlet, where minimal venting is allowed as it’s deemed unproductive, that antidepressants don’t do the whole job. The root of the causes in conjunction with medications aides in daily life.
Anxiety can be in many forms.
For me, my anxiety attacks were my body’s way of stopping me in my tracks and saying “Wait! Pay attention to me. Give me a voice.” I thought I was going through the motions and dealing with my health, until I randomly couldn’t breathe on the tennis court, an outlet for me. Another time, I had to stop an airplane from closing its door so I could escape. I knew something had to give. Discovering I wasn’t giving my inner body the attention and voice it desired, along with a little help from medications, resulted in a huge weight lifted off of my chest.
Many IBDers are stuck and tethered in a hospital facility with no escape, or at home with extremely low abilities for activity. I was very active and still having 20-30 of these anxiety attacks a day and they were debilitating. What was it? How could I make them stop? Will they ever go away? Do other people have these too?
Anxiety can come about from fears of the unknown. Fears of not fitting in. Fears of no answers. Fears of medicinal side effects, which is a large trigger for me. Fears of changing specialists due to many factors. Fears of losing friends. Fears of not measuring up to the expectations in your mind of how you imagined your life. Add the fear of missing out on events due to how you’re feeling, and many times you have no choice but to miss important events; which leads to states of depression and angst towards yourself, that once again you missed an important event. The list goes on and on.
I learned my body needed a voice. I could raise funds for non-profits, do events, work, etc., but was I really in tune with my body? Was I just doing what I was comfortable doing and what the specialists requested, no questions asked?
I try to work on myself on a regular basis. I try to be on top of any signs of a depressive state and make sure to be as open and honest with my care teams as possible. Holding things back only builds it up internally, and the cycle of not giving my body a voice begins again.
Do you ever get emotional when IBD keeps you from doing something?
I have – and still do for that matter. There are times when Crohn’s disease and ulcerative colitis can feel like it has completely taken over my life. Constant trips to the bathroom, cramping, pain, bleeding, emotions take a toll on a person. When a patient’s IBD is flaring, there is almost nothing that can be done. But what about times when it isn’t flaring or is relatively controlled?
We owe it to ourselves to live life to the fullest, especially when we feel our best. I recently spoke with a friend who told me that she was always happy to see me out and about, doing so much. She knows it isn’t always easy and, more often than not, extra work has to go into the active lifestyle I lead.
The conversation grew and we began to talk about people with chronic illness and the effects it can have on a their life. It’s devastating that so many people with different diseases have their quality of life diminished. Sometimes, it’s hard to see what it has done to their mindsets. It’s note easy to stay positive during such difficult times.
I’ve been low before as a result of my Crohn’s disease and sometimes it felt like there was only a spec of light at the end of the tunnel. I’m so relieved that I held on to the hope that days would get brighter. Without that hope, I don’t know where I would be now. Our conversation then led to us reflecting on my mindset. I truly believe you only live once (YOLO) and I also have a fear of missing out (FOMO). We realized that this is why I do so much with my IBD.
Which leads me to my 70.3 for IBD training. I finally got out for my first outdoor run of the season. I was planning for a short run, but I still had to plan and prepare properly for it. So I prepped my backside with TP padding just in case I drained from the area where I had my proctectomy. Then I prepped my front side to make sure that my ostomy was ready for running. Of course I also had to make sure it was empty before I started. Okay, now I’m ready…right? Thankfully, that was all I had to do today but it’s still more than most people do before a run.
After all the prep for the run, I was a little down. I know how much extra work it takes for me to just get out for a few miles. But then I got going and realized I can do things healthy people can. I proved to myself Crohn’s didn’t have to keep me from being active. I can’t tell you how happy I was to get outside to run – I even passed a few deer along my route. The reason why I was out running was my YOLO and FOMO attitude. I know that if I didn’t have Crohn’s disease, I would love to compete in triathlons, so that’s what I’m going to do.
The highlight of my day turned out to come just after the run. When I was done I walked over to a bench just to relax and take in the fresh air. I sat down on the bench without any hesitation. It was an outdoor wooden bench – I know other IBDers can feel my pain. Butt there was no pain! (See what I did there?) Didn’t even have to lower myself slowly. It’s amazing how the smallest part of the run made the day great and it was something as small as sitting down after.
I beg of my fellow IBDers, don’t forget to enjoy the little things in life. When you’re feeling well remember that YOLO and it’s healthy to have a FOMO, if it motivates you to live a full life!
Please consider a donation to my 70.3 for IBD half Ironman. Your contribution will go towards helping the IIF assist those with Crohn’s disease, ulcerative colitis and ostomies.
Thank you so much for your support. -Brian
During the winter when it is freezing out I want something that is satisfying and will warm me up. What better meal is there to warm up a person than beef stew. The cold will be around for a while so why wait.
Now when I make this dish, I don’t measure out anything. When I did make it using the below amounts, it made about 8 servings. This is a dish that exact measurements aren’t needed and you can add whatever you want. However, to help you in making the dish, I will give amounts for the ingredients which is pretty much what I used.
- 1 1/2 lb cubed steak (I used precut stew meat but you can buy a steak like sirloin and cut it up)
- 3 Carrots – peeled and rough chopped
- 6 Celery Stalks – rough chopped
- 1 Parsnip – peeled and rough chopped
- 2 Large Potatoes – peeled and rough chopped
- 1 Onion – peeled and rough chopped (pearl onions work well also and require no prep)
- 1/2 Frozen Peas
- 64 oz Beef Broth
- 2 cans Diced Tomatoes
- Olive oil
- Gluten Free Flour or Corn Starch
Take your steak and coat in either the corn starch or flour. Heat oil in a large stock pot and sear off meat. You don’t want to cook the meat all the way through, just brown it. You sear it to seal in the juices. Also, you can do this in batches if the pot isn’t large enough.
After the meat is browned and removed from pot, add onions and more oil if needed. Saute the onions until soft and translucent. If you are using pearl onions, do not do this step. They will be added at the end.
When the onions are done, add some flour to make a roux. Cook this for a couple of minutes until the roux starts to brown. Add carrots, celery, parsnip, potatoes, beef, and stock. Stir well. Add any seasoning you like. They can be fresh or dried. I added some basil, oregano, black pepper and salt. Again this is to your preference. Bring the stew to a boil.
When it boils, reduce heat to a simmer, cover and let cook for about 1 1/2 hours. When the stew is done, add the canned tomatoes and peas. If you are using pearl onions, add them also. Bring back to a boil and remove from heat. If the stew is still thin and not to your desired thickness, make a cornstarch slurry to add to it to thicken it up.
Serve with some nice crusty bread (Make sure it is Gluten Free), polenta cakes or some corn bread.
Being diagnosed with ulcerative colitis at the age of 8 and bleeding from the backside every other meal was not normal as a youngster. As I grew, I found that exercise made me not just stronger but help maintain my body and mind.
For the longest time I was the string bean (for obvious reasons) but things change. I am now an accomplished triathlete and it has made a world of difference in my health. I know that being an athlete is what pushes your body to the limit. Having the need for a bathroom before, during (YES DURING) and after a race has had it sometimes interesting. I have lost 6 minutes on a run because I had to go, and I did go. I know where every restroom and porta potty is.
With all that being said I will now tell you that being an athlete is good, being a triathlete is amazing. The community of other racers and the camaraderie is just second to none. I have received friendships that will last a life time. I have been given the gift of competition within myself. I have been blessed to have friends to share all of this with.
As we all know there are triggers that set us off for days. One of the best triggers is the one that sets you off in the right direction. I have found that good eating, resting and support from friends & family is all keys to starting on the right direction. Knowing where the bathroom is and having your own toilet paper is just one less stress and can make the difference on race day. But keeping your body moving with the training is an absolute key.
I dare you to come and join me. We can cross the finish line together if you don’t mind waiting. Can’t wait for you to swim, bike and run with me and the IBD and IIF community.
When my son, Tyler now 15, was diagnosed with Crohn’s disease back in 2005 I had no idea what I was doing and how I was going to help him through this journey that has been nothing short of a rollercoaster. I hope by sharing our story will help make your journey just a little bit easier!
Tyler fought hard for years drinking high caloric nutritional shakes then he learned to place a nasal g-tube at night for extra calories at night. When he needed to add to his calorie intake it was suggested to have a g-tube surgically placed. I have to say the shakes were tough running after him at 6 years old to make him drink them, but I bought really cool shot glasses for him to take the shake in and it make it fun for him to pick them out every day. Try to find something to make it a game or fun depending on the age of the child.
The nasal g-tube had its difficulties as well, but knowing he was getting a specific amount of calories per night helped his growth and energy immensely. The bonus was no more drinking gross tasting contrast when he has to have an MRI!!! Yes, we had to bring the machine and he had to place the tube but I never thought I would be so happy that my 11 year old son can place his own tube! You have to cherish the small moments of a being an IBD mom because they don’t always come as often as one would like.
The G-tube came with the same love/hate relationship. He had his g-tube placed in the beginning of July 2012, he had issues where he had to have it replaced and also his stomach was not happy that food was coming in from a different direction. Slowly his stomach got use to it and he was able to go home. I wish that I would have been taught more about how to care for the g-tube site before they sent him home, so if you find yourself in this situation ask for help. Have a nurse come to your home to teach both you and your child.
These are some of the things that I learned about being a caregiver of my son who has a g-tube that I wish someone would have shared with me before they happened. When and if the tube leaks know it is leaking stomach acid which irritates the g-tube tract and stomach area, after you clean the area with saline solution on q-tips, you can place a gauze pad with a piece of medical tape, Mepilex lite with safetac technology, or they make kid friendly gauze- like washable pieces for around the site. For the redness on the stomach use one of a few different things to help with the irritation on the stomach, like neosporine or granulotion which are Tyler’s favorite. He tried 3M Cavilon Alcohol Free No Sting Barrier Film, but found that the gauze pad stuck to his skin after applying it.
When you get your pump, a nurse will teach you how set it up and use it. If it continually goes off in the middle of the night and you have to exchange it because they continue to tell you that the pump is broken, try calling the pump company hotline, they can provide information that maybe the nurse did not know or shared with you. (I can’t tell you how many nights sleep I lost because of that)
If the g-tube leaks it might also move. If it moves, the rubbing can cause granulation tissue around the hole of the stomach that needs to be addressed by being cauterized with silver nitrate sticks. Tyler’s GI gave me a prescription to have them in the house so that we didn’t have to go to the office to do it. He does it 3 times a week to keep it under control.
Finally as a mom, I would be lying if I told you it was easy, but I hope my story and information will help you and your child skip some of the bumps Tyler and I have endured. Good luck, always ask questions and you are never alone!
This is my first post for IIF. For anyone that doesn’t know me, my name is Jeffrey and I have Crohn’s Disease since the mid 1980’s. All my life I never thought about my disease and went on living life like nothing is happening to my body.
About 3-4 years ago, I started to get really sick. I went to the bathroom close to 30 times a day and was having really bad cramps. I knew something had to change to get myself better. So, I decided to go on a gluten free diet. Little did I know that this would change my life forever.
It took about 2 months before I started to notice a difference. I was slowly getting back to normal before fully going on the diet. Within the 2 months though, it was like night and day. I woke up one day thinking how the day before I had only went to the bathroom about 3 times. I noticed all my gut pain was gone and I was having more energy.
Now, for anyone that doesn’t know what gluten is, it is a protein found in certain grains like wheat. There are a lot of people who are allergic to this protein. That would fall under someone having Celiac Disease. I have never been diagnosed as a Celiac and I don’t think I am one. What I think I am is gluten sensitive.
Since gluten can be found in so many items, I have to watch what I eat. I have to avoid anything made from wheat, barley, and/or rye. Many may think that it is easy to avoid these foods. You think “Ok, I won’t eat bread or cereal”. Sadly, nothing is that easy. Yes it is easy to avoid the major items like bread. But, what many of us don’t realize is that there are hidden wheat in many items. Most people don’t realize that products like soy sauce is actually made from wheat.
The one thing this diet has done to me is made me more aware of what I am eating. I look at every food label now. I look for things that might have wheat in it. Vinegar for example may contain wheat. A lot of products might not say they contain wheat but might have vinegar in it. There is always a chance of some being in there so I know to avoid it.
After being on this diet for about 2 years I was actually in remission. I didn’t know if it was the diet doing it to me, so I decided to go off it and go back to eating regular food again. Items like NY pizza and bagels that were off limit to me were fast becoming part of my diet again. Then, within abotu 6 months I started to feel sick again. By October of 2014 I was thinking of switching meds again. It was then I realized that the diet was probably really helping me so before I made a decision on medicine, I decided to go back to being gluten free. I started the day after Thanksgiving. Now, as of February, I believe I am once again in remission. Coincidence, I don’t think so.
I am not one to say this or that is a cure for your problems. I know what works for me. I now know being on a gluten free diet helps keep my Crohn’s in check. I feel better when I am on the diet. Is it easy, no. In fact, it is very hard to stay on it. But when I think of what it does to me and how I feel off the diet, the decision on whether I should stay on it or not is easy.
For more info on gluten and a gluten free diet, go to http://celiac.org/. You can also check out my blogs www.aguywithcrohns.com and www.glutenfreegluttonouschef.com
I’m starting this blog post off with some great news: I FEEL BETTER THAN I HAVE IN YEARS!
It’s been a long time since I felt this well and had this much energy. Every day I experience the almost foreign feeling of waking up without fear of pain. My world has changed completely; the good days outnumber the bad ones now by far.
I’ve spent the past few weeks trying to understand why and how I feel so good. I assume It’s a combination of my Humira working better and the low dosage of Prednisone I’ve been placed on. The Prednisone keeps inflammation down and lets the Humira work more effectively.
But, while the medicine has obviously helped, I think there’s something bigger happening here: My 70.3 for IBD training. It’s been a while since I had anything to train for. Having it gives me something to look forward to, benchmarks to surpass, and a goal to accomplish. Knowing I will complete a half Ironman for the IIF, I feel refreshed and renewed.
That’s not to say my alarm goes off and I pop right out of bed each morning. I still wake sore and achey. Sometimes I feel much older than I am. But I get up anyway, eat breakfast, get a protein shake ready, and head to the gym.
My training gives me time away from the distractions and clutter of everyday life. Even better, it’s a time when I forget about overthinking or focusing on joint pain. My mind zeroes in on training and getting better.
I feel great during and after my 60-90 minute sessions. I love that it gets my day jumpstarted. The morning joint pain disappears. Somehow, I feel more energetic the rest of the day! That, combined with healthy eating, and I feel great!
The surgery I had in August to remove my rectum and make my ostomy permanent was a tough time in my life for many reasons, but I made it through it on top. These days, I look back on the pain before I had it and I can’t believe I lived so long knowing each day would be a bad one!
My life has taken a 180 degree turn. I love the fact that I finally feel well and am capable of completing my life goal of a Half Ironman for the IBD community.
Follow along as I continue to track my progress! I’ll be posting my training experiences here regularly.