Micromanaging Galore Thanks to IBD

Does anyone else feel as though they have to micromanage everything they put in their body? I do and it is so frustrating. I long for the days when I could eat whatever I wanted and know there wouldn’t be consequences. I envy those people who can eat something and then forget about it because their body is just digesting it “normally.”

For me personally, living without a large intestine and an ileostomy, I have so many food restrictions. I want to say for the record that everyone who suffers from a form of inflammatory bowel disease (IBD) has different dietary needs, limitations (or lack of) and there is absolutely no “one size fits all” when it comes to food.

As a side note to that, anyone who tells you that if you just ate this or stopped eating that, ignore them.

They may have the best intentions and they may even have Crohn’s Disease or ulcerative colitis themselves, but that does not mean that it will work for you. In fact, it could have detrimental ramifications so please, please, please (it is worth saying that word three times!) get to know your own body. Listen to others, especially if you feel like they understand IBD or have the disease themselves, but take it all with a grain of salt. Take everything that is said about diet and food as - what works for one may not work for me. If you have that mentality, you hopefully won’t feel as frustrated when a diet is shared with you that apparently has helped another person but isn’t having the desired outcome for you. That, in and of itself, can make you feel hopeless which is why it is important to understand how unique your IBD is. With a chronic illness like inflammatory bowel disease, you cannot even begin to compare your situation with any other patient.

Okay, back to the point.

It is exhausting needing to worry about every single thing I ingest and how it will affect me.

I have done so much trial and error that I have found a good amount of new safe foods that are actually healthy. My old safe food was candy… which still creeps in from time to time. :)

I don’t know about anyone else but certain foods bulk up your stool and others do the opposite. This can mean different things depending on whether you have had surgery, the number of surgeries you’ve had, the type of surgery (or surgeries) that you have endured, plus your current intestinal situation (for lack of better wording.) Those people who have an ostomy need to worry about different things than someone who has had a small bowel resection or who lives with a Jpouch, for example.

I am also so terrified of blockages/obstructions since I have had so many. I have gastroparesis which is slow motility in your stomach. That can happen when a person undergoes many abdominal surgeries. I honestly don’t do a ton of research on that but it is something I have to contend with.

I hate feeling like I have to ignore hunger signs because I have something planned during the day. It is an awful feeling that when I have something a little “off” like a couple of baby carrots that it truly changes the entire consistency of my output (not to be too TMI). Instead of things coming out in a natural way, something like baby carrots, for me, doesn’t digest. It won’t land me in the hospital and it makes me feel so good to be eating something healthy but I often need to weigh the pros and cons.

Weighing the pros and cons of eating a couple baby carrots? Really?! *sigh*

I do remember a couple of times when I didn’t eat “perfectly” (for me, that is) and it absolutely destroyed the following day. Depending how off my diet is, it can make it impossible to even get comfortable in bed at night. I worry so often about my ostomy leaking, similar to people with IBD who don’t have an ostomy worrying about having accidents. This can definitely keep a person on edge. All of this because of food! Before the age of 13, I just ate. It wasn’t ANOTHER stressor in my life. I had no idea it ever would be but alas, here I am.

Have any of you heard of the term “pancaking?” It is commonly used among people who live with an ostomy and it pretty much is when the output is so thick, you really have to push the contents down from the flange/barrier (part that goes over your stoma and sticks on your skin) in order for stool to come out of the bag. It can cause more leakages as it puts pressure on the flange which can tear it away from the skin. It isn’t the end of the world if you are home and not busy so you can tend to it often but for me, it causes me so much anxiety regardless of where I am.

Feeling as though you need to micromanage everything you put in your body can not only cause additional stress and mental angst but it can cause enormous fear.

Fear of eating. Fear of not having your system flushed out. Fear of needing to follow an exact “diet” and not go off otherwise all hell can break loose. I have also learned that the way I eat impacts other people in my life. I have had to cancel plans and have been in awful moods because I may not have eaten perfectly the day before.

That shouldn’t be. None of this should be something you have to deal with. It sucks. Plain and simple. But there are ways to figure it out. It takes time to accept and a lot of trial and error but I have found that knowing exactly what I can eat and what I should stay away from and sticking to it has been the best for me not only physically but emotionally as well. It also gives me a feeling of control and since inflammatory bowel disease (Crohn’s Disease and ulcerative colitis) can strip away any ounce of control you thought you had over your life, every little bit of control you can get back helps in my opinion.

What about you? Are you someone who feels as though you have to micromanage everything you ingest? Or, do you have pretty much a regular diet? How do you handle the food aspect of this disease? Have you noticed huge changes with your eating/diet since your IBD diagnosis? This part of living with inflammatory bowel disease can be very tough for other people who don’t live with the disease themselves to understand so it is important WE SHARE WITH ONE ANOTHER.

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