Gut Feelingz

My stomach has started hurting again. First, it was just that left-of-the-navel area (which was the location of the worst of the pain before), but now it’s starting to spread. I know I’ve been stressed, so I’m trying to rest and find joy and say “no” when I can. I’m not sure what else to do. I don’t want to tell my doc because I don’t want him to up my Prednisone (I’m at 5mg now… so close to the end). Hopefully it will pass. I’ll eat safe foods and baby my body and hope things heal and don’t get worse. Fingers crossed.  Update: It worked. I was able to baby my belly enough for this to pass. At least for a time.

Middle of the night musings:  Friday night: Ugh We\"re on vacation and I feel so sick. I must have gotten RSV (one of my kids tested positive for that a couple weeks ago, negative for Covid and Influenza). Idk. I\"m not congested just super sore and achy and headachy. Fevered and convulsing. I wonder if it\"s from going off prednisone. Some diarrhea but not really watery or urgent (could be curry), no blood or pain (besides the extremely achy joints/muscles). Googled. Could it be Prednisone withdrawal? I just went from 10mg to 5mg (doc said to just stop after 10, but I didn’t want to risk a flare so I tried to taper more slowly).  Currently (Sat night / early Sun am): Stayed on Tylenol (reg dose, 1000mg) all day so I wouldn’t feel too crummy, but I was still weak and light headed. Then I woke up in the middle of the night FREEZING and convulsing (no exaggeration) from a fever - whilst in blankets etc. I did have a cough Fri evening, but it wasn’t extreme and was mostly a...

Oy. I swear. This disease is such a carnival ride. Once things finally start working or making sense, once you finally get a little comfortable, something jolts you in another direction, and you have to reassess the plan all over again. The twist this time was side effects. I called this morning to report a few concerning things. My main concern was the headaches. For the past few days, I have had horrendous headaches/migraines that wake me up in the night and keep me up for hours. Just awful ones. I take Tylenol. I take THC. I press my pressure points. All the things. But the headaches persist. At first I wondered if this was cannabis withdrawal, because I wasn’t taking a gummy every day or trying not to if I could help it. Nothing online seemed to indicate that that could be the case. Then I wondered if it was from Prednisone - from tapering down too quickly or something. It seems like a lot of people get headaches from that, but they also get nausea, chills, vomiting, dizziness and ...

I saw my doctor again on Sept 20, and it was a really good visit. I explained to his nurse that I was frustrated because I felt that I needed a doctor who sat down and explained things to me - the what, the why, all of it. I needed to understand more about the game plan - both immediate and long-term. I didn’t know if that meant I’d need a new GI doc, or if Habib was capable of giving me this. She said he typically was really good at that sort of thing and is all about the patient and helping them understand. He hadn’t been with me thus far; he’d been pretty brief and to the point and thankyouhaveanicedaybyeee. She said she’d mention to him that I wanted/needed more thorough explanations etc so I felt more informed and less confused and scared.  When I went back to see him, you could tell he was trying to slow down and be more thorough. I asked him a few questions (What exactly is Ulcerative Colitis? What does this med do vs that med? What happens if this plan fails, what’s the nex...

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...