Lately I have been thinking about how lucky I am in the food categories, compared to many others with IBD. I see people on TPN or liquid diets and think, “Well, at least I can eat solid food”. Even though I have some restrictions, every day I feel like I am lucky to be in the position I am in.
But today, I really thought about it and I have started to question, “Am I really lucky”. After my major flare, eggs which were a safe food for me became an enemy. So did bananas. I also realized that gluten products were not helping me to get well. I went gluten-free and cut out eggs. But, cravings would hit. I found the egg issue was a big one. After talking to others with digestive issues, I found out about Papaya Enzymes. I started taking them every time I ate eggs and they really helped. I would get no pain, wouldn’t have to rush to the bathroom 10 times a day and my outlook on food changed.
But now, there is a shift in my life. I take 5 enzyme pills when I eat eggs (bottle recommends 2-3). They used to help but now lately I have been getting some pains when I eat eggs. I know that means my body is adjusting to the pills and the efficiency of them is diminishing. Along with eggs, salad has now also become an issue. I used to be fine with any leafy vegetable. But now within less than an hour it runs its course and comes out almost as fast as it goes in. Slowly, my dietary choices are getting slim. I am back to trying to lose weight so I have to watch what I eat and my choices are shrinking.
So I was sitting here this morning, eating scrambled eggs and thinking, am I still lucky. As many of you know, I love food. I enjoy the flavors and smells. I love the entire experience surrounding food. I don’t feel I can survive on a very strict diet but that is where I am heading. Things I onced love to indulge in I can no longer eat. It has been almost 2 years since I had a slice of NY pizza or a bagel, chinese dumplings or pastries. So many foods that I took for granted I might never eat again. And that scares me. I am trying not to feel depressed over this but it is hard. I went to school originally to be a chef and I work in the hospitality industry. I buy food every day for work. It is my life. To look at a bounty of great looking food and know that I can’t touch it really saddens me.
Some of you might think this is self pity, and part of it is. I know there are others worse off than me. But most people don’t realize just what food means to me. It isn’t just a nutritional, life sustaining thing. It is a way of life and is a part of mine. I feel like today, a part of me has died.
So where does this leave me know. I am still struggling with my weight and trying to eat healthier. I am trying to diet. But this latest development hurt things. But I can’t give in and I won’t. I am done with excuses. I will find a way to get to my goal and overcome my obstacle. Hopefully, my passion for food will rise like the phoenix and renew itself. There are so many new foods out there to try. It might be time to explore options and see just what my diseased body can handle.
And worst case…as I am sure a friend of mine might suggest…there are always gummy bears to live off of. But that, is another story.
This is definitely not self pity–it’s reality. It’s okay to feel unlucky. It doesn’t mean you don’t hurt for the people who are on feeding tubes or in worse pain. Sometimes it’s okay to say, “This really sucks!” I’m right there with you. I miss so many things and my diet has narrowed incredibly (along with the narrowing in my gut!) The only fix is surgery, but I wonder how long that will last. It’s hard being a Crohnie and I’m over it! ~ Christina
Awe. Before I became sick I started to really like cooking and was becoming interested in different health foods. It was hard staying on a restricted diet emotionally before my ostomy surgery. One of my roommates would laugh at me for making egg salad all of the time. I did so because I didn’t know what other low-fiber healthy foods I could eat…I hope your exploration leads you to a healthy diet that your body can handle.
I’ve been doing that dreaded diet with too many restrictions.It’s called SCD and i love it.
SCD is way to restrictive for me. I have problems eating now. To cut out even more would really depress me.
Yes! I love food too! Was just talking about this to my husband. Food is my passion. Being on a bland diet is really really depressing to me. I have to decide whether I want to live my life like that or running the risk of a flare up. My big trigger is sugar combined with an irritant. Pastries, white bread, chocolate covered almonds, tequila sunrises…etc. Hang in there, buddy. You’re not alone. Trying to find stuff to eat makes you just not want to.
I tried the FODMAP diet and found it awful. I love food to, a real foodie. I can’t eat bread anymore. I used to take bread for granted now I crave and miss bread like no tomorrow.
I have the occasional treat but generally avoid it. I used to eat a whole loaf in 3 days.
I think perhaps ‘they’ pick people who love food to give crohns to just to be cruel.
I hope you can still enjoy some of your big food loves. I can still have ice cream, i count my lucky stars I can.
Have you thought about going with whole foods and avoiding anything (even if it’s GF) that is pre-made or boxed? I healed my 5 year old son of Crohn’s. Talk about having a hard time with not eating foods! As a kindergartner, he was surrounded by the other kids who were eating all of his favorites! Now, he has gotten used to the diet and when we sometimes go off of his routine, he’ll feel awful so he goes back on it. I guess it’s good for him to learn young. He was diagnosed in Oct with Crohn’s and through tests, we learned that he had erosion on his small intestines. We did a blood test to test for sensitivities, took out those foods (which pretty much eliminated all pre-made/boxed food), and repeated the test 4 months later. All erosion was completely gone and he was healed of Crohn’s. Of course, the doctors don’t believe that we could do that with food. Every doctor we talked to told us food had nothing to do with his Crohn’s. You can choose each time you put food into your mouth if you want to heal yourself or not. It’s in your hands and no one else’s. We also do probiotics every day and double up if he’s going to a birthday party and having pizza or a hot dog with a bun and he doesn’t show any symptoms. Good luck
First I want to say that I am happy that your son is doing so much better. It is not easy being a kid with IBD.
Now, with that said, there is something you should know. IBD is not curable. Your son is what we call in remission. That means he has no symptoms of his disease. His intestines might be healed, but he still carries the disease within his blood.
I agree that food does play a big part and that eating healthy will help anyone, sick or not. Our bodies weren’t made to eat processed and sugary foods. It is good that he learns healthy eating at a young age.
I did hear that from the two GI specialists that we saw as well as his pediatrician. I believe that things happen for a reason because I happened to meet someone with Crohn’s who had her intestines removed and she introduced me to a clinic that specializes in helping people heal autoimmune disorders. She has never felt better. We immediately sought their assistance the week after my son was diagnosed (and hospitalized for 4 days). We changed his diet and wanted to see if it was working so we went to Mayo for another endoscopy and colonoscopy. Results showed no signs of erosion so the Mayo GI specialist said that because food cannot change his GI tract like that, that my son never had Crohn’s to begin with. This has lead me on the path to help others who believe the MDs. There is not clinical research out there to support that by having a healthy gut (where 80% of our immune system is), that we can live healthy lives. I’m now working with someone to help coordinate a coordinated effort to get funding so that clinical studies can be done. Studies have been done on drugs because the drug companies pay for the research.
With that being said, I truly hope that you do well. I feel for you. I haven’t been there myself, but I can tell you that I was the team captain of “Team Zack” as we like to say around here. It broke my heart when he would be in tears because someone was eating something he couldn’t or when he’d go to birthday parties, he’d have to eat something different. As a mom of a son who was sick, it was heartbreaking to see. So, I did whatever I could to make it easier. I felt like I was America’s test kitchen because I’d try a cookie or cake recipe 6+ times before I could get it to work without eggs, dairy, yeast, and using alternative flours like quinoa flour, chickpea flour, potato starch, and so on. I wanted to give up and tell him that he just couldn’t have it, but I didn’t because I knew it meant so much for him to have a treat like the others. I told him that we just had to find what his body could handle and we finally got into a routine but it took a long time. Thank goodness we live in an area with a co-op that carries so many products that he can have.
Lastly, my comment was intended to help others who were told the same things we were told over and over again by both general MDs and GI specialists. I believe that our health stems from our gut where our immune system is so I’ve focused on healing that by taking out foods that cause him harm and putting in good bacteria so we can improve his gut flora and overall health.
You are not alone and I love that you blog so you have continued support. I wish you the best of luck.
I tend to agree, that there is the strong possibility that he doesn’t have IBD, and is problems were from something else, like an allergic reaction or maybe even Celiac disease. So many people are misdiagnosed with IBD. Even those with it get misdiagnosed. I was originally told I have Ulcerative Colitis, only to be told some years later, nope it is Crohn’s. There is a genetic test that can be done to find out if he has IBD. It just involves taking some blood and most insurance companies will cover it. It might be worth looking into just to get a definitive answer. Ask his GI about the Promethius test.
Eating in America these days is not easy feat when you need to lose weight or be on a certain diet. So many products are unhealthy and processed. I have slowly learned to eat more healthier foods…and I don’t mind it. I just hate that my body can’t tolerate those foods. I miss a good salad. I used to crave salad as a kid and always enjoyed it. Now I can’t even think about it. It will turn my stomach to mush.
Lastly, I agree that the gut is important. Some say it is like a second brain. Us Americans treat our gut like druggies treat their brains…they love to kill it. I have slowly been trying to nurture mine, but it isn’t easy for us Crohnies. I know it will take time and I have to be patient. The good news to all of this, is something I am doing is working, as I lost 2.8 lbs this week for a total of 3.8 in 3 weeks. Last week I gained a pound but I knew that was because of poor eating for 2 days at the end of the week. It wasn’t a real weight gain.
hang in there. Our bodies are sure strange. Some foods that I was unable to even look at a few years ago I can enjoy in moderation now. Fingers crossed this will happen for you too. When in doubt I also go for soup. I have some great recipes if you need inspiration.