Gut Feelingz

After all of the side effects with the Prednisone, etc, I was understandably desperate for some respite. It seems that Prednisone is a necessary evil, and while I will hopefully taper off of it eventually, I am looking at months (at a minimum) of this garbage in the meantime. I scoured the Internet, asked around in those Ulcerative Colitis FB support groups, and read as many scientific journal articles I could get my hands on. While most everything is super individual-specific with this disease, one common remedy continued to come up: Cannabis. A lot of people take it for inflammation. Many take it for pain. Several swear that it reduces gut upset altogether. Some even have stopped taking pharmaceutical drugs at all and rely purely on Cannabis to control their symptoms. I was intrigued. So I researched further. After a good deal of study and pondering, I decided to pursue it. First, I spoke to my bishop. As a member of the Church of Jesus Christ of Latter-Day Saints, I am asked to foll...

Oh man. Where to begin? The last time I posted, the doctor had put me back on a higher dose of Prednisone and started me on Sucralfate again. Basically rolled all the meds back to where we’d started. I was discouraged to be moving backward, but mostly I was immensely relieved to have the symptoms taken care of again.  I’d had a girls’ weekend planned with some friends over Labor Day weekend - spa day and shopping and a long weekend away in the city. I was so excited to go, but so nervous about what that would look like for me. Thankfully the medicine had started to work before we left. I still had to eat only safe foods (mashed potatoes, instant oatmeal, tuna with mayo, bone broth…) and have decent bathroom access at any given time, but was okay enough to give it a shot.  Saturday was fun and relaxing and fulfilling, but by the end of the day, my body was feeling pretty broken. I was starting to hurt a lot and my gut was getting angry, and I was starting to feel pretty emotion...

So the doc had me adjust down the meds I was taking (reducing the Prednisone and doing away with Sucralfate) at my appointment last Monday. I was so excited. Maybe I didn’t have actual Ulcerative Colitis but had just damaged my colon due to an allergic reaction. That was a much easier fix!  But everything started to fall apart as of even that evening. It got worse and worse until I was crying in a public bathroom this morning (yay for being that girl). Lots of pain, lots of blood, lots of urgency and frequency. I called my GI’s office and spoke to his nurse. She said she’d update him and see what he said. Dr. Habib just called. He wants me to increase the Prednisone back up to 40mg. And start taking Sucralfate again. And avoid all dairy. If things do not improve by Tuesday, he wants me to come in. If they do improve, he wants to see me at the end of the month. He said that he doesn’t know if the NSAIDs damaged my colon or if they just triggered an underlying Ulcerative Colitis cond...

I had a follow-up appointment with Dr. Habib on Monday (08.30.21), and he gave me some baffling but potentially really great news. He said he didn’t think I had actual Ulcerative Colitis; I may just be severely allergic to Ibuprofen! ((?!)) He said he suspects this because of three things: 1) While I have severe Pancolitis (ulcers and inflammation all through the colon), the rectum is fine. He called it “rectal sparing.” 2) My stomach is also ulcerated and inflamed, which isn’t typical of UC (and it’s not Crohn’s). 3) My colonoscopy/EDG biopsies found a large amount of eosinophils- which can indicate cancer (tested negative), bacteria/parasites (tested negative), or allergy (which is basically what’s going on… your body develops an allergy to NSAIDs). I kept insisting it couldn’t be that because I don’t abuse Ibuprofen or anything. I don’t take more than the recommended dosage nor take it often. But I guess if you’re allergic, it doesn’t take much.  But it also could be that the NS...

It took me a good couple of weeks to work through what I can only describe as grief. I was and had been in so much pain and misery for so long, and I just found out that I’d have it the rest of my life. Ulcerative Colitis is an autoimmune disease that has no cure and no definitive treatment. There isn’t even a reliable diet you can try to improve things - what works for one person may put another in the hospital.  I grieved the pain I was in and the pain in my future. I grieved the control and ambitions I worry I’ll have to let go of. I grieved the fact that I’ll be a burden on my family, that I won’t be able to be the kind of kick-a mom and wife I aspire to be. I don’t want to be fine; I want to be amazing! And I couldn’t see past the current moment to even hope for something better down the line. Eventually, I cried all my tears out, gained comfort and love from family and friends, learned a lot more about the condition (thanks largely to contributions/info from a few IBD Faceboo...

My mom stayed home to take care of babies, and Tori drove me to Safford for my colonoscopy/EDG. I wasn’t able to eat or drink anything after midnight the night before, so I was super dehydrated and headachy and miserable.  I checked in at the hospital around 2pm. Finally they gave me some IV Tylenol and fluids, which helped tremendously. I hadn’t had a great experience at that hospital thus far, so I was super apprehensive, but the nurses were excellent which helped a ton. Then they took me back, put a bit in my mouth, made me breathe scary drug air, and then I was out.  I remember being kind of pissed when I woke up because I was sleeping so well! Someone needs to let you stay sedated just a bit longer. Turns out Sleeping Beauty had the right idea - butt probe or not.  Tori said I was really funny coming out of the anesthesia. I kept asking the same questions over and over again, not remembering that I’d just discussed it. My nurse apparently deserves an award for being ...

I called first thing Monday morning (8.16.21) and was told to come down and they’d squeeze me in. They were concerned that there was an active bleed, etc. So I dropped Hazel off at preschool and headed to town. Tori was amazing and willing to pick her up for me so I could go.  I was apprehensive because I knew there wasn’t really the possibility of any good news, unfortunately. Based on labs etc, it would likely be either Crohn’s or Ulcerative Colitis, neither of which are fun diagnoses. But moving forward with figuring out what was going on felt positive, so that was good. I met with Dr. Habib and didn’t even have to wait long to be squeezed in. I don’t know if he could tell I was in pain (and emotional) or if he was just hooking me up because the ER had called ahead and requested he save a spot for me, but either way - I left the office with a colonoscopy (scope from below) and EDG (scope from above) scheduled for the next day.  I was scared but grateful to be able to get in...

So here’s the deal. I’ve had GI issues (tmi: urgent, watery diarrhea that started out as intermittent then escalated to like 12xs by breakfast) and pretty intense abdominal pain since freaking Thanksgiving, but the doc here hasn’t been able to figure it out. **Edit to add:  I initially went in asking for thyroid blood work because I assumed I had something wrong there. I was experiencing overwhelming fatigue and brain fog and even had some strange neck strain and pain. These issues along with the gut problems could very well have indicated a thyroid issue. My doc ordered lots blood work and a stool sample and saw that my fecal Calprotectin levels were elevated not nothing else of particular note. When he told me about the Calprotectin, he explained that it indicated inflammation in my gut. I basically rolled my eyes and thought, “No duh. I’ve been pooping my brains out for months! Of course things are inflamed.” I was so convinced it was thyroid related at that point that I mostly ...