My SIBO Journey is a multi-part series. If you haven’t read my first posts, please take a look at my introduction, week 1, week 2 and week 3 to get caught up.

Welcome back to My SIBO Journey. This update covers weeks 4-7. It was a lot of scary and a lot of waiting. I bring you with me into even the most vulnerable parts of “the hospital aftermath”. Due to Dr. Keller’s demanding schedule, she will no longer be participating in this series.

Personal Disclaimer: My SIBO Journey is just that, my very own journey. I cannot stress enough that everyone treating SIBO should have an individualized plan towards healing since it is so specific. I am a unicorn among unicorns. I have multi-layered diseases that can make my journey not look like the typical one. Please keep that in mind as you travel down this road with me.

Recovery

Wow. Uh. I was just in the hospital….twice. Okay. Alright. I feel like I’m the brink of death. I had to miss out on some very special events due to whatever this was, but I’m glad I’m alive, that my husband is home and that I get to LIVE! During this time up until 2 weeks “post hospital”, I kept a list of the “Aftermath” symptoms that I was experiencing. I wanted to share a very REAL, HONEST, NO HOLDS BARRED look into all that I dealt with. I govern myself with a lot of transparency, but this is a very vulnerable snapshot I am about to share with you.

DAY 1 Post Hospital

I still had the tremors/vibrating feeling in my body and specifically in my legs. Muscles were spasming and twitching. I was exhausted but okay.

DAY 2

I woke up in the middle of the night with a bad headache which then over several hours turned into one of the worst migraines I have ever had. After eating a little something I took ibuprofen and it took the severe edge off. I was in bed all day, not sleeping but just could not function. Body still vibrating.

DAY 3-5

High Anxiety

Bad headache in between my eyeballs

Left inner eyeball vibrating periodically

Left arm and left leg felt like I was going to get big tremors in them, but never did

Body vibrating still

Dizzy periodically

Hungry all the time

Ears constantly ringing

Ears felt full of pressure

Heart felt fluttery quite often

Thyroid area hurt

Overall muscle weakness

Even more light sensitive than normal

Neuropathy

Constipated for 5 days, then poop was normal

Very tired and fatigued

Feeling dehydrated but I wasn’t

Muscle spasms in legs and arms

Jittery – my leg was constantly wanting to move and bounce around kind of like when you see people that are nervous, it was like that.

Upper nose pulsing periodically and it felt like a brick was sitting on my nose

Minor sore throat

Eye pressure and pain

Blood sugar drops and leaves me feeling shaky

Left thumb muscle sore and cramping

Head feels very heavy like a bowling ball

Confused in moments can’t recall things

Left side of my face felt numb but no outward signs of that

Hearing in my left ear is muted

Both eyelids are twitching periodically, mostly the left one

My lips were crazy chapped and I kept wiping off layer after layer of skin and almost like a gray film of sorts. (My lips have been chronically chapped, broken, bleeding and peeling since my chronic illness started 13 years ago.) This was a highly concentrated time where they just not stop of me rubbing and wiping away layer after layer.

Sleep was okay overall. Maybe getting 6 hours on average during that time.

DAY 6-7

The headache has gone away and a lot of those neurological issues started decreasing or just going away altogether. The only things that remained during this period were muscle twitching, eyelids twitching and exhaustion. On Day 6 I started getting itchy all over and my face was red and blotchy and super itchy. The skin on the lower part of my face became dry and there were little red dots that appeared. My inner ears felt itchy. My chest was itchy and bumps started to appear. My sciatica and femoral nerve were pinched or inflamed from days 6 through 12. I have had this happen many times before, but this time it was down both legs and very painful. It made sleeping a challenge, although I did get more sleep in this period probably averaging 7+ hours a night. I had a huge influx of pimples all over my body and jaw and my hidradenitis was highly flared as well. Additionally, my scalp was extremely itchy. I’ve had puss and scabs on my scalp since I was 14, so having a itchy scalp is kid of normal for me but this was at a heightened level. Day 6 I had a normal poop. Day 7 I started having explosive diarrhea again. I took 2 Immodium AD and I don’t know if that stopped it or if I was already wiped clean, but then I didn’t have a bowel movement for 4 days.

DAY 8-10

I  felt super revved up and my brain was on hyper speed, my leg remained jittery and always had to be moving. I started having less symptoms overall during this period. I had a very small bowel movement on DAY 10.

DAY 11

I felt great. I had slept good the night before and I had one of my most normal days in well over a month (if  I minus the pain from the femoral nerve and sciatica.) I felt good enough to get up early, clean lots, entertain and have friends over, cook, craft, shower and get myself ready to look presentable to other humans! I did start getting itchy bumps on my left arm and armpits just like the herpes zoster(shingles) I was diagnosed with in September. I did feel like I was coming down with a sore throat but it never went anywhere. No bowel movement.

DAY 12

The bumps got itchier but no other real signs of herpes zoster. More revved today due to a hard time sleeping last night. Still feel like I am coming down with a sore throat but it hasn’t turned into anything. I’m trying out food from a Paleo food delivery service and they do not give an ingredient list, so I think I’ve been eating some things that may be aggravating my joints in my hands to a minor degree. Normal bowel movement.

Standing Still To Move Ahead

During this time Dr. Keller was doing a lot of “behind the scenes” work. She did suspect a potential genetic neurological issue may be at hand and had me do a 24 hour urine test.

 

Here are my results:

I had an item “out of range”. While Dr. Keller was meeting with and calling some top Endocrinologist’s in the field to discuss my symptoms and test results (which left them all perplexed), I waited. I waited. I waited some more. I did come down with shingles again but it was not as bad as last time. Dr. Keller met with more doctors about my case and then I waited some more.

The Emotional Factor

Well, I can say there were LOTS of emotions during this time period…LIKE LOTS! If you want to follow along on my emotional and spiritual journey through trying to heal physically, please continue on to read my post about I dealt with weeks 4-7, read my post about I dealt with weeks 4-7.

UPDATE: To continue reading about my SIBO journey, check out the next article in the series.