I think today will be a two post kind of day. First up: Treatment plan as I had promised
So, remember my last post how I talked about missing my old life? Well LIFE would have it that, that would be the same night where I would react badly to a medication I’m on and projectile vomit twice. Needless to say as I finished puking I bawled on the bathroom floor.
I have never projectile vomited before so that experience itself was terrible. Then you add in that I know this was happening because of a medication that’s supposed to be helping you, and you wind up feeling helpless and so frustrated. Hence the tears. This sickness didn’t slowly creep up on me, it feels like it hit me like a 20 ton truck and I don’t even know how to help myself or how I could have even prepared for it. I find more and more I wake up everyday questioning if I can make it through the day. Every morning I physically feel sick. That sickly body sore. And my head is so foggy from yet another restless sleep at night. I can already feel that my energy level is starting pretty low and usually I have a full day ahead of me, even if that full day just means going to work for 8 hours.
This morning for example I woke up feeling like utter crap because the last two days have been really bad for poop attacks. I laid in bed for an extra 10 minutes debating if I could really get through the day. Could I handle working my 4 hour shift, setting up, cleaning up, and then meet with my friends after to go snowboarding? Should I take my board with me incase later in the day I perk up, or should I leave it at home so I have a reason to come back in case I don’t feel good. It’s always so much easier to just toss the blanket over my head and say “nope, today I just don’t have it in me to participate in life. Breathing and eating is all I have energy for.” And I know there will be days where this really will be all I can accomplish, but right now I’m still somewhat okay so I’m trying to keep pushing and motivating myself so I don’t fall in this rut.
But anyways lets talk about treatment. So at the time of my diagnosis I was told I was going to try out Mezavant tablets and Salofalk suppositories. He was super hopeful that we could avoid doing steroids because my ulcers are superficial. SO YAY. Unless this trend I’m currently on continues. So we went ahead with it, I started my meds and was told it would take a month before I get results.
Well I got results, but not what we wanted. I’m okay with the Mezavant, I just get head aches from time to time and curse myself because Tylenol as I mentioned doesn’t work for me. Salofalk is a whole new story. First off, I have never actually put anything up my butt and it is a terrible feeling. Terrible. Stick up the ass got a whole new meaning for me. I was never sure if it was going in or coming back out. Weirdest sensation. But I had been feeling slightly nauseous every morning since I had started taking it, and looking back now I don’t know why I didn’t put two and two together. It literally killed my appetite. I was on this roller coaster where I was nauseous, then starving, would eat, halfway through get nauseous again, stop eating, feel better, back to being starving, back to feeling nauseous halfway through, ect. Naturally, I’m losing weight now….. But it wasn’t until last Wednesday that my body just decided enough was enough and half an hour after taking the suppository I vomited and had the worst poop attack. I even broke out into the shakes and was so cold. I took the morning off the next day and called my nurse and she flipped. Apparently 1 in 1000 people actually get bad side effects from the drug and 10-15% actually have it where the medication makes it worse and harms your body. And by harms your body I mean this 10-15% can actually have kidney or liver failure, which vomiting is a sign of failure.
Cool. I wish I had these odds when I played the lottery.
So my nurse was super awesome, went through everything to look out for, sent me out for lab work, promised to call if anything came up and was going to talk to my doctor to try and get in before February 9th, when I’m supposed to see him. I mean don’t get me wrong, this whole process of finding your right treatment plan sucks, because I’ve witnessed first hand that medication can make it worse. But knowing I have such a diligent team working with me takes a bit of the stress away.
So at the moment I’m just on the tablets. But then it got me thinking, what else could go wrong? I mean right now I’m just trying to balance my life and working through the colitis itself, but I haven’t actually thought how the disease effects other parts of myself. I mean an autoimmune disorder has to kind of have a domino effect, doesn’t it? Well I scared myself because this is what I found:
At risk for:
- Severe Bleeding: no shit. But it’s why it’s so important not to take blood thinners and I’ve heard some patients during really bad flare ups can’t even shave because of the danger of cutting themselves. This could also be related to your medication
- A leaky gut: a hole in your colon and nasty stuff can actually leak out onto other important organs!
- Severe Dehydration: this can actually lead to hospitalization. A girl I know had to go to the hospital for 10 days because of it
- Osteoporosis: Bone loss
- Liver Disease: it is said to be rare though
- Inflammation in your joints, skin, and even eyes as well as sores in the lining of your mouth
- Toxic megacolon: which is a rapid swelling of your colon
- Increased risk of blood clots: in veins and arteries, which comes in full circle with the severe bleeding with blood thinners especially
- Increases your risk of colon cancer
- Anemia: low iron. Can also cause hospitalization
This is just a few. There’s literally so many things from internal to external complications. Arthritis, skin disorders, urinary problems, it goes on. And I thought, shit I can barely keep track of what my normal flare up symptoms are never mind symptoms related to other complications. It’s all a little overwhelming I guess.
But this kind of transitions into my next blog post I want to write about kind of where I’m going from here so I’ll end here and pick it up next!