It was time for my routine check to see if my Crohn’s disease is still in remission. Taking care of this has been a real roller coaster, but after starting a new treatment and overcoming the first side effects, I’m feeling a lot better. But of course, we need to prove it with some regular checks. Which ones, you ask? So, let's talk about some fancy scans!
So, MRI. Picture a giant magnet and some radio waves teaming up to create super detailed images of your organs and tissues. MRIs are like secret agents for spotting fistulas around the anal area (thanks, pelvic MRI) or the small intestine (shout out to MR enterography).
First day, I had the MR scan. I'm not sure why I can't do this at the same time as the CT, but hey, who am I to question their rules?
Let me tell you how this works. When you get there, you need to take off your clothes and remove all your metal stuff. I’ve lost so many piercings due to this, I just don't put them back anymore. I have these exams twice a year, and I’m pretty clumsy with losing my stuff.
Because it’s a stomach scan, I couldn’t eat for 6 hours beforehand. A contrast medium is injected into your vein so that everything can be seen even more clearly. Not a problem for me. Then you lie down on a movable table that leads you into the round opening of the device. You must lie still and breathe evenly. You also get headphones because the device is very loud, and since the exam lasts more than half an hour, believe me, the noise can get on your nerves. Someone told me they play music through the headphones, but I haven’t had that luxury yet. Not sure why. Anyway, I don’t mind too much. I’m not claustrophobic, so I can lie there in peace. Sometimes, I even doze off, and when the table starts to move because the exam is over, I’m completely lost. That's it. Some patients need to wait half an hour to go home in case the contrast has side effects, but I’ve had so many that they send me home right away. No side effects so far. Woohoo!
Now, onto the, the CT scan. Imagine an X-ray on steroids. This bad boy gives way more detail than your standard X-ray, checking out your whole bowel and even the stuff outside it. It's like the Sherlock Holmes or Hercule Poirot ( Poirot for me:) of the medical world, leaving no stone unturned.
Then there's CT enterography. This is like a CT scan that’s had a Red Bull. You drink this special contrast material and get an IV contrast, giving us a VIP tour of your intestines. It’s cool to see inside me, but oh my, this liquid tastes awful. But, what can you do? Drink it and shut up, that’s my motivational speech when I see them bring the liquid.
So, yesterday, it was CT scan time. First, no eating again for 6 hours before the exam. For imaging the abdominal organs, I have to consume the contrast liquid. So, you have one hour to drink a liter of this disgusting liquid.
The preparations are the same. They send you to the dressing room, you remove part of your clothes and all metal and magnetic things, and wait to be called. They also inject contrast into your vein. The X-ray tube is supposed to rotate around you, but thankfully, you don't notice it in the tube. You have to lie still and get headphones again. This time, you have to listen to the doctor's instructions: inhale, hold your breath, and exhale. If you follow the instructions, the exam takes about 15 minutes, but if you mess up your breathing, it takes longer. So now, whenever someone tells me to breathe in and out, I’m like, “Dude, don’t do that, I feel like I’m in a big tube, and it only makes things worse.”
So, there you have it, our high-tech peek inside your body, with all the bells and whistles!
Last stop of the day, finally my morning coffee ;)
Now I'm waiting for the results to see if the situation has improved. Next week, I have a colonoscopy and a gastroscopy. Believe me, I’ll share my experiences with you. These are two tests I hate with all my heart, but unfortunately, I can’t avoid them. I have to do all these tests every year. It's painful, but if I want to know what’s going on in my intestines, I have no other option...
“A healthy outside starts from the inside.” – Robert Urich
With love, @tinabrezpike ❤️
Thank you so much for sharing your experience! Your breakdown of MRIs and CT scans is super helpful, especially for those who are newer to these kinds of tests. Don't worry, we've all been there with the "awful tasting contrast" struggle. Sending good vibes for your upcoming colonoscopy and gastroscopy - you got this! Looking forward to hearing about the results and your journey to staying in remission.
I skimmed most of your posts and all of them are very interesting. Nowadays I am a little bit busy and unable to reply to all of your posts but for now, after this post, I become your follower.
My prayers and best wishes are always with you. Take care, help others, and have a nice life journey.
thank u so much for your nice words. It's means a lot when people are reading my posts and supporting me on my journey. Have a nice day and thank u for your nice wishes. 😊
Yes, you are right. Your viewers are a lot. Your hard work compels and attracts people toward you. Take care. Try to improve. Help other. Share your best post with us. Our best wishes are always with you.
Regards Dr. Ubaid Ullah @ubaidkhan
thank u so much for your nice wishes :)
I hope you continue to recover mentally and feel better.
All deserve a better and fuller life 🥰.
Thank u, and you are right, everybody deserves a life like they want it!
Ugh... I've already had a colonoscopy and a gastroscopy... both excruciating... but I hope and cheer that you're getting better.
Oh, and I believe you had it in Slovenia? So no anesthetic drug for you? ;) thank u!
An anesthetic drug is an option if you want. I don't like it. The colonoscopy was really painful for the first time in Izola Hospital. But next, after five years in one Ljubljana medical center was smooth if I compare :)
You had a choice and you said no? What are you, Hulk? They told me that since I'm 21, they don't give it to anyone over 18. This was my first time, so I didn't know what pain in the ass this shit was (literally). The second time in UKC Ljubljana was just as bad. I asked about it, and they said, "Miss, you need to ask for that two weeks before the exam." I was furious. No painkillers, nothing... just "come here, lady, we’re sticking this tube in you now." Never again in Slovenia. I bow to you, sir! 😂
It doesn't have to hurt. No one was in pain when I talked to friends who have been through it. It depends most on how messed up your bowels are. Thin, tall, and thin people have more knotted intestines, and anesthesia is recommended for them, but not for the rounder ones (like me). But in Izola, the first time I went, it wasn't very good, and in Ljubljana I almost didn't even feel it.
You are the first one without pain. Everybody else told me it was horror. Also for me. But in Austria, they know how to do it the right way 😊
So many tests, but if they are all for your own good then they are necessary. I was amazed to hear how many tests they do, here it is often difficult to get that kind of tests, a lot. Once I had to have an X-ray of my intestine with contrast and it was complicated.
I hope all your results are positive.
Cheers!
I understand how challenging it can be to get tests done in some places. :/ Regarding my situation, I am truly grateful for the health insurance I have. Without it, I can't imagine how I would manage. The medication I take costs around 2000 euros per month, and the biological drug I need is almost 7000 euros. Without insurance, this would be impossible for me. I'm really thankful that we have this support system in place. I’m curious how it works for you. Do you have to pay, or is it a matter of not having the possibility or technology to do these kinds of tests? Thank you for your kind words and support!
Here medicine is free, nothing costs, but it is more complicated. A lot of equipment is broken, they break and there are no spare parts to fix them and many times we have to end up paying in some way the doctor or technician who is going to do the test to be able to solve it quickly. Currently there is a shortage of everything in public health and almost everything has to be paid for. So free of charge is between " " and " ".
There was a time when everything worked better, but now everything is very depressed and with few resources.
I can't imagine being sick there and needing all those exams but not being able to get them. I'm really sorry to hear about the challenges you're facing with the healthcare system. It's heartbreaking that even though medical care is supposed to be free, it's so complicated and difficult. It must be incredibly frustrating to deal with broken equipment, shortages, and having to pay extra to get the care you need. I hope things improve soon for you and everyone else dealing with these hardships.
Oh my god, I didn't know what you're going through all of this, but you're strong, I'm sure everything will get better. These exams are very scary (especially because of the noise of the machine), I remember when her mother had an MRI and she was screaming because she is terrified of closed spaces.
You just have to wait for the results, and whatever they are, look at it from the positive side, now you are a kind of "X-Women" hahaha, you may acquire some kind of superpower, I hope you soon find out and share it with me (I hope this Even if it seems fun to you, and if you smile, then I have fulfilled my mission).
I will be attentive to your highlights, and I hope that this Crohn's Disease is not something caused by stress, although from the little I have read about you, from the life you lead as a nurse, it is probably from all the stress you are going through. May that be your condition. In any case, I know you're going to get better my new friend.
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Thank you so much for your kind words and support. It really means a lot to me. These exams can definitely be scary, especially with the noise of the machines. But the headphones are helping. I'm trying to stay positive and wait for the results. Thinking of myself as an X-Woman did make me smile, so mission accomplished! I appreciate you keeping an eye on my updates. Crohn’s Disease can be tough, and stress might be a factor. But I’m hopeful ;)
Thanks again, my new friend. Take care!
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STOPOh, my mom has Crohn too! Unfortunately, remission hasn't come to her yet. But we hope everyday for that. Btw, how long ago since you discovered it?
Oh, do you what kind of treatment she has? I think now is around 12 years, but my brother also have it 😔
Your brother has it too, oh my. This disease must be genetic related, I know two mothers and their children who have it as well, so...
Well, my mom's currently taking Vedolizumab once a month to control the immunity, along with corticoids to treat the fistulas in the small intestines. And all sorts of vitamins, 'cause her absorption through food is very low.
What is your treatment, btw?
It's interesting how many people with similar diseases are prescribed different medications. I'm receiving Stelara, a biological medicine, and I must say, it's the first one that hasn't given me many side effects. After 12 years, I've finally found one that works. All the best wishes to your mom.
Oh, my mom also took Stelara in the beginning, when she hadn't had surgery. Actually she changed the biological, like, 3 or 4 times due to the surgeries (I think they stopped working after each surgery, something like that). They're all related, aren't they? All their names end in "mab" (Ustekinumab, Vedolizumab, etc etc).
All the best to you and your brother too! 🤗
I'd be dead after 5.
Seriously though, that's a fair whack of tests to have, reasonably serious ones too considering next week's tests. It must suck but you seem to accept it and get on with it which is all a person could do I guess.
Waiting for the results is a hard part but let's hope that they come back positively and you can move forward from there.
Thank u! The test was at 8 o'clock, so I managed to survive without eating :) But without coffee, I get very cranky. It has been quite a challenging time with all the tests lined up, but as you said, accepting it and pushing through is really the only way to move forward. I've kind of gotten used to the tests, but the liquid you have to drink is still the worst part. No bueno? ;))
I've heard that liquid is noto goodo.
I have a medical condition also, one that affects every moment of my life, every meal I eat and means multiple injections a day, sometimes 8-9 of them. It sucks but I make it work because there's no other viable option. I think about those who have far worse issues though, my brother tarazkp for instance and many others. It's always nice to see someone who takes ownership and shows the discipline to do the right things and deal with the ups and downs of the situation no matter how hard.
Note to self: Tina gets cranky without coffee and that's noto goodo. 😉
Thank you so much for your kind words. It really means a lot to hear that from someone who understands the challenges of managing a medical condition day in and day out. Can I maybe ask what this condition is? Low sugar, diabetes? :/
Your attitude is truly inspiring, facing such difficulties head-on and making it work despite the challenges.I agree, it's always humbling to think about those who have it even harder.
And yes, without coffee, there is not much to live for ;))) Take care and stay strong!
Type 1.
Can I ask for how long already? I know how hard type 1 can be…
Misdiagnosed as Type 2 in 2009 (not treated by insulin when I should have been) and then diagnosed accurately as Type 1 in 2023. The doctors say it's taken 10-12 years off my life. Only when I'm dead will we know for sure though huh?