To start I am back home and hopefully FINALLY on the road to recovery. And my first experience going to the hospital as a result of my disease was probably a lot easier compared to other people.
But let rewind to a week and a bit ago.
I decided to take a leave of absence from work for a week in hopes that the time would allow my body to heal. The weekend before the week started my body was so upset. I had such terrible poop attacks, would go to the washroom well over 20 times, and vomited 3 times. I felt like I had hit bottom and was just not getting better. On Monday I called my nurse practitioner and she was worried about what was happening so my appointment originally scheduled for June 12th got bumped up to Thursday of the same week. Monday and Tuesday were still rough. I was bed ridden, so weak, and my nausea would not go away. The mornings and evenings seemed to be the worst time and the blood did not stop.
But by Wednesday things changed! I felt so much better. I was still slightly nauseous but I overall felt like I was finally on the mend. Even my poop attacks and urgency had gone down. So when I saw my G.I. specialist and we went over my symptoms it was assumed that my infection from a week and a half ago had not fully gone away and my body was trying to fight it off. I was in a fragile state of my health. I was still in an active flare up, still taking Humira (which suppresses your immune system), and just finished taking Prednisone. So naturally I was susceptible to getting more sick and having a hard time to fight it off. I was also told that I had IBS in addition to having IBD, so I needed more water soluble fibre in my diet to help sooth that. It eould explain why my fatigue was so much worse and why my symptoms felt so much worse. But my numbers according to my latest blood work were apparently great and Humira was showing to be effective! I was so excited and relieved to hear the news, as I thought I was going to have to start Prednisone again, after just getting off of it. So I took this news and had a positive outlook for the rest of the week. I assumed I was just finally getting better and the worst was behind me.
Friday came along and I still felt slightly nauseous but I had energy and felt good enough to take my mom to a Def Leppard concert. But again evenings were the worst time and I just couldn’t seem to stomach much food that evening. However, poop attacks were at a low so I didn’t think much of it.
The next morning the nausea just seemed to get worse. I couldn’t bring myself to eat anything and could barely down a tea. But I hadn’t had a bad poop attack, so I thought I was still okay. That afternoon I went to Costco with my mom and I just seemed to go downhill from there. The nausea was out of control, the poop attacks were starting and the fatigue was kicking into high gear. I passed out in the car. When I got home I tried to drink ginger ale, had an apple-pear, some cheese which I quickly fed to my dogs because one bite caused my stomach to churn, and a handful of cherries. I was supposed to go out that night with my boyfriend, and I felt pretty weak so I figured I needed something in my system.
Well not even 30 minutes later I puked it all up. From that point on I couldn’t keep anything in my system. Anything I ate or drank I either puked it up, peed it out, or had a poop attack/diarrhea. I was quickly becoming dehydrated no matter how much I tried to drink. And I just couldn’t force myself to drink because I felt like I was always on the edge of puking. So my date night quickly turned into a visit to the emergency room.
I got blood work done as well as blood culture samples taken to determine if I still had a virus and got 2 L of fluids through the IV to help me get out of dehydration. The big concern became if I was strong enough to handle another Humira shot the following day, because the last thing I wanted was to take Humira with an infection and then that just got worse as a result. Luckily my specialist was working that night and after everything was done my results came back normal. So by 2 am I was able to go back home.
So essentially, it was all because I was in a flare up…….
There wasn’t much we could do until my body settled and started to really respond to the medication. I had mixed feelings of relief and disappointment. I think it would have been easier to know I had an infection and got medication to cure that versus knowing that I am puking and feeling too weak to leave my bed because my disease is just really bad right now. My results were normal and my numbers were great but I felt like shit. I feel so helpless because I don’t know how to make this better for my body.
Yesterday I was still feeling slightly nauseous but had an appetite and managed to eat breakfast. For most of the day I teetered between feeling okay and feeling sick. WARNING: This next section may be a little gross to some. My diarrhea was so dark, almost black, and the toilet water would be florescent green, which is apparently from an excess of bile meaning my body wasn’t digesting food properly and it was passing through my system too quickly. But it was just poop, and I deal with that so much with this illness so I thought, it’s okay I can handle this.
But again, the evening hit and it was like a full moon came about. I broke out into the chills, broke into a fever, and kept puking/having diarrhea. The last thing I wanted was to go back to the hospital. I downed Gatorade and forced myself to at least drink chicken broth. My fever did break at some point last night, but my parents and boyfriend were so worried. Even my brother looked worried.
Today I got my strength back a bit. I nearly winded myself taking a shower, but I have been drinking a lot more today and haven’t puked it up. My poop attacks also have been coming down. It’s mostly been mucus. The only solids I’ve managed to try eating is 4 pieces of salami of all things…. but good news is it stayed down! We shall see how tonight goes because its usually around 6-7 pm that I start to tank.
My hope is to be going to work tomorrow. Fingers crossed.
But I just wanted to remind people that this is so much more than a pooping disorder and it can seriously mess with your body so fast when you are in a flare up. I went from being okay enough to attend a concert to being in a hospital for dehydration in less than 24 hours. You really have no control of your own body when you are in a flare up and that often leaves you feeling helpless and also your support system feeling helpless. God bless my family boyfriend and friends. They have been my rocks through all this, but I know their biggest struggle is they don’t know how to help me feel better. And that’s okay, because I don’t even know how to make myself feel better. At this stage in my health, we’re all a little helpless.
But listen to your body and know when to draw the line. Had I not gone to the hospital when I did, things could have been a lot worse. Dehydration is such a huge culprit for leading people with IBD’s to have serious health complications. It’s better to be over worried at that point than not getting the help you needed soon enough!
Hopefully I can update and write on my blog more once I get my energy back.