What I Would Tell Someone Newly Diagnosed with Colitis

Awhile ago I had someone reach out to me that was dealing with colitis. They wanted some advice. They wanted to know if I have found a cure for colitis that works for me.

With all my heart I wanted to tell them that I am 100% great and that everything is good and I’ve never felt better. But that isn’t my reality.

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This is what I would tell someone newly diagnosed with colitis:

Get Frustrated with Research

For me, since I don’t have ulcerative colitis, I have to be okay with not being okay that a lot of research isn’t directed towards non ulcerative colitis (at least now). So a lot of medication isn’t too applicable to my particular condition. But I do check in with my doctor from time to time to see if there are any new medications or treatments available to me and my particular colitis as technology is always developing.

Functional Sick is your Norm

I call it ‘functional sick.’ I can still go about my day, I can still look perfectly normal but I don’t feel normal. Flareups often consist of feeling like my stomach is on fire, feeling like I’m going to throw up with anything I’m eating, painful stomach spasms and running to the bathroom the first part of every day (or sometimes all day) until my stomach decides to calm down. Which could take anywhere from a day or two to several months. If you were to draw my blood it would be normal. I don’t run a fever. I just feel absolutely sick. And if the flareup lasts on the weeks to months end, I grow weaker and more exhausted as time goes on but still the labs continue to show as normal. This functional sick gets so old so quickly. I cherish those moments I feel good. I know that some of the things that cause a flareup. Excessive stress, eating something I’m intolerant to and not taking care of myself are all triggers. But then it gets frustrating that sometimes the most random things that I can’t figure out may cause a flareup. I can even be my own version of Groundhog Day eating and doing the same thing everyday and I get a random flareup that makes me get sick.

YoYoYO Weight Bouncing

I hate and love it. When my ex husband passed away I lost 13 pounds in a little over a week. That’s the bonus side of a flareup. The only good thing. The negative side of it is that I never know how long a flareup will last and once I can start putting on weight again my body as it gets older holds onto that weight more. It seems I end up a pound or so heavier after every major bad flareup. (Thank heavens those only come every year to every few years). But it gets exhausting to loose and gain and loose and gain. I think my body just gets exhausted too.

I’ve Learned To Carry My Fanny Pack of Goodies

I don’t go on vacation without Pepto, Kaeopectate, Imodium, Tums or Rolaids, charcoal tablets, my stomach spasm medicine, anti nausea medicine and other stomach friendly emergency helps. My own personal fanny pack of goodies. Our last trip I got sick twenty minutes after eating dinner (something I eat all the time!) and ended up spending more money on medicine than the food we ate that night! I can’t go anywhere without my helps. And they often are close by in case I start to feel sick suddenly.

I’ve also learned to take my medicine and if able LAY DOWN. If I can take it and lay down for 30-60 minutes, I can sometimes head the sick feeling off. If not, I might be battling it all day long. The kids have been pretty good about making sure that I have that time too if we are able. It’s much better for me to be a little sick for a couple of hours than all day or night.

You Learn Your Body Quickly

One thing I have learned the last nine years of having this is that I have really learned to get to know my body quickly. I can tell when I am starting to get stressed which might trigger a flareup and start to work on relaxation techniques that will hopefully head off the flareup from getting too bad. I’ve learned the foods that I can and can’t tolerate. I’ve learned to get into the emergency room quicker now and get help when I need it. I’ve learned to rest. I’ve learned a healthy balance of exercise. I’ve learned to see my doctor to get help. I’m independent and would rather serve others so it’s been difficult to get help for myself.

And a Side of Patience Too

I’ve also learned about patience. I’m not great at patience but I’m learning. I don’t think that I’ll ever consider colitis to be a blessing in my life but I do see the lessons it has taught me to be more positive ones in my life. I’ve learned patience for myself and others who might deal with similar or other illnesses. I’ve learned to push myself through difficult times and learn to pull back when I need to. I’ve also learned that answers don’t always come when we want them to. (I guess that goes back to patience). After dealing with this from the time I was a teen to finally getting sick enough that I could get diagnosed at 31, I was excited and thought the doctor would tell me exactly what was wrong and give me a pill that cured it. I learned quickly that this wasn’t one of those types of illnesses. I’ve also learned to let people love me even though I’m sick. My kids have showed incredible love and service on those tough days to me. My second marriage has taught me that in addition to him choosing to love and care for the kids, he’s choosing to love me even through this. And while it honestly isn’t something that affects every moment of every day, (most of the time I can hide it pretty well and go about my day), there are those moments that I admire the fact that he chose me even through this.

What have you found helps for dealing with your colitis? Please share here and feel free to read some of our past colitis articles here below:

Colitis ER ButtKicker and is IV Vitamin Therapy Better for a Flareup than an ER Visit?

2020’s Top Diets That are Colitis Friendly

Following the FODMAP Diet Weeks 1-4

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