Roller Coaster of UC

I got diagnosed in 2011, I believe. My mom died in 2009, and I tried hard for my family to keep myself together and not become a walking disaster because she was my best friend and the one person in the whole world who loved me unconditionally aside from my kids. She died from colon cancer!

Well, about a year after she died, I got horrible cramps in my lower intestines. I went stiff-legged and thought something was squeezing and tearing apart my insides! I went to the hospital where they put me on Dilaudid, and it calmed my issue. It was a sweet relief!!! But after a few days, it was the same type of deal: sometimes not as bad or as long, but still not good!

How my ulcerative colitis journey started

I can’t remember the timelines of everything now, but there were several ER trips (some by ambulance, others walk-in), so much weight and water loss, gushing bloody stools, and unbearable pain. My kids and husband were worried I was firing every day!

I saw two or three gastroenterologists who had no idea about ulcerative colitis (UC) and only knew some info about inflammatory bowel disease (IBD) or Crohn's. I took many tests in my upper and lower GI, and several medications later, I got a diagnosis of IBD, then Crohn's.

Figuring my new life out

I struggled with stress, figuring out what foods to eat and cook for my family, and sadness from my mom passing. I still missed her every day! Adulting and money (or lack thereof) - my husband tried, but it was so hard with kids trying to keep them happy and not worried on top of feeling terrible.

At the worst anemic stages, I had no energy or ability even to do anything. My husband cared for the kids, cooked, and tried to take care of me. I was feeling like a sucky mom, wife, and human in general, but all the while, I was wearing a smile and being positive for them at the ages of 26 and 27.

Finally, a correct diagnosis

Finally, in 2013, I got a good gastroenterologist who had some knowledge about UC and put me on Imuran along with seven or eight other pills a day for cramps, diarrhea, and spasms. He also told me to take vitamins and iron so that I could start to manage the flares. I was also paying VERY close attention to what foods I ate.

Then in 2015, my Dad died. We weren’t close per se, but he was all I had left. I did love him, but we just never saw eye to eye on stuff. It was sad. It still crippled me inside again and set me back, so I had to try new meds. I think that’s when Lialda came into play and worked so well on top food management.

Still, though, for years when I thought was managing flares, I went to the bathroom 15 to 20 a day, could not go on long walks (definitely no hikes), and could not be far from a bathroom. But I thought I at least was moving in the right direction because I had no watery, bloody diarrhea, no real pains, and I got some energy back, which felt like a win. I found out from my last doctor, who is a nurse practitioner, that that was not good enough, so she put me on a HEAVY dose of Lialda at first, and now I just do maintenance doses. Before that, I had to switch meds several times due to insurance changes.

How my diet has changed

I have been staying away from ALL lettuces all the time for almost 10 years now! I also stay away from all fibrous foods (like raw fruits like apples, pears, and oranges with all the white stuff on them). I eat things with lots of seeds (e.g., strawberries) very little, if ever. I may have a few in a smoothie or jam, but I limit any other seedy berries to almost never and am very cautious after I eat them.

I am very careful with large grains and oats. I cook my oatmeal way overdone and chew granola up till it’s pulverized (lol). I don't eat wheat bread or anything like that. I also never touch broccoli or cauliflower in any form because they're gaseous. I thought I’d try a spoonful of broccoli cheddar soup once, and within hours, I was crumpled up in agony...so never again!

I don't eat seeds on buns, and I chew things up very well! Red meat is hard too, but it's not as bad if I can chew it up well. Dairy has no real effect on me, so I’m good with all yogurts, milks, and most ice cream. I tend to eat frozen yogurt - Yasso bars are my favorite!

Oh, and hot coffee or green tea in any form is a no-go, so I drink decaf if I want hot coffee or tea. It’s weird because McDonald's iced vanilla coffee or frappes do not affect me, and neither does a Pepsi every now and then. I tend to get more fountain pop, which seems more doable, but I tend to stick to root beer or Sprite if I drink pop.

Current life update

I’m now on Lialda again and love it. I only take two big tabs (I think they're 1.2 grams each), vitamin D3, and potassium every day, along with plenty of water, stress management, and positive thinking. I’m almost a normal feeling human! Many have suggested enemas (but I couldn’t do it) and infusions (too scary and so many side effects). I focus on food and managing stress the most. I do HAVE to take my meds daily, but my symptoms are much more manageable and almost nonexistent some days!

That’s mostly all of my story! Good luck to y’all, and I hope it helps someone!