thecrohner - Tumblr blog

[thecrohner]

Me when I beat the final boss in chronic illness hell & arise with all of the spoons 🦹🏾‍♂️

[thecrohner]

Contemplative Energy

[thecrohner]

[thecrohner]

Can I rant to you?

my inbox is always open :)

[thecrohner]

Can I get a tattoo with chrons

yes you can! The only thing I would be cautious of is making sure that the place you go to is following best practices for sanitation. if youre concern is due to the medicine you’re taking, i understand.  I would also check with your doctor to make sure that their are no effects with your immune system being affected by the med as well just as a precaution.  In my opinion i do not see that being an issue as I have 5 lol

[thecrohner]

I just read your "is it really no big deal" post and I just wanted to clarify one thing...IBD stands for Inflammatory Bowel Disease, while IBS stands for Irritable Bowel Syndrome. I hope this doesn't come across as rude or judgmental, but it's super misleading to refer to it as irritable bowel disease, which isn't ever a thing that Crohn's or UC is referred to as bc the entire disease stems from chronic inflammation. I have Crohn's and I really appreciated reading the original post, though..

No problem, it was actually a typo that never got corrected but thanks for the input and I'm glad you still enjoyed the post!

[thecrohner]

Remicade and Crohn's is the equivalent to Master Splinter and Shredder.

Thoughts from the Crohner

[thecrohner]

My friend has been suffering from a recent flare up and has been on an all liquid diet for close to 6 months now. I am at a loss and out of ways to cheer her up. What can I do? She only drinks this specialty (very expensive) drink each day 6+ times a day and that's it. I feel awful for her and powerless to help.

I'm sorry I'm so late! In the future, the best thing to do is listen and understand what she's going through. Keep treating her normally and ask questions if you're unsure of something. Watch a movie with her, hang out, etc. Since she's on liquids, see if she can drink her favorite drink and bring it to her, things like that. Showing you care and that she's still your friend will help a lot. I hope this helps. Feel free to send in more questions.

[thecrohner]

Just had to do another C- Diff test. Oh Crohn's. Always full of adventures.

[thecrohner]

IBD and period

IBD is no pooping disease. Every patient knows that. But what’s highly unrecognised even in some patients is that IBD has a huge impact on fertility and the menstrual cycle.

Half a year before I experienced my first severe IBD symptoms I lost my period. I hadn’t even lost a big amount of weight until then because the first intestinal symptoms I had weren’t too bad to influence my eating habits.

I was worried. People kept telling me that it’s normal for a 15 year old girl to have irregular periods but I felt something was wrong. I’ve had a perfectly regular menstruation cycle for over one year…it wasn’t supposed to stop for four and more months within any reason (the medical term for this is amenorrhea).

I went to a OB/GYN for the first time and found out that my hormones were absolutely messed up. Low estrogen. High prolactin. Nothing was like it should be.

And nobody understood. They thought I might have PCOS - but I wasn’t overweight like most patients with this condition. If anything I was on the road to the underweight range. Another thing no one understood. Also a few months later and 15 pounds lighter my thyroid hormones indicated hypothyroidism although I kept losing weight.

My doctors put me on “the pill” to give me my period back which worked just great. But no one knew what was going on. When I finally went into my first real “flare up” nobody made the connection to my unexpected period loss a few months back.

Today I know why I lost my period. My OB-GYN was the first doctor who mentioned that my bowels look like I might have IBD two years before I got diagnosed. Ironically my gastroenterologist back then though I had a gynaecological problem…

Since controlling my IBD thanks to my medication I have my period without taking the pill. Not every 26-32 days like a healthy woman but every 35-45 days. To stay medically correct this is not a “normal” cycle and falls under the definition of oligomenorrhea (period every 35-90 days). But it’s better than it used to be. At least me and my OB-GYN are okay with it. She told me to call her if I go back to amenorrhea because I already have a low bone density and low estrogen levels (that are linked to amenorrhea) increase your risk for osteoporosis.

Possible causes for losing your period/irregular period in IBD patients: 🔺underweight & malnutrition 🔺stress caused by the constant inflammation 🔺 hormonal changes due to medication especially steroids

This also means that every chronic/autoimmune/inflammatory condition (rheumatoid arthritis, ankylosing spondylitis, lupus, hashimoto thyroiditis…) can lead to the same problems.

So if you have abnormal menstrual cycles please be sure to get a bone density scan every once in a while.

What are your experiences?

[thecrohner]

Random thoughts: Crohn's Medicine

It's 3:25am where I am and I'm up thinking about my Crohn's and what my life is going to be like when I'm like in my 30s and 40s etc. the main thing that comes across my mind is all of the medicines that are out there for CD and how ****** up they are even tho they work. Right now I'm in a study to show that aggressive treatment, if done early enough, can put a patient in remission. The main reason I agreed to it is to help people because this stuff is helpful. However in all honesty...I'm personally sick of this ****. I've been on Remicade for almost 2 years now and even though it's put me into remission after a short stint with Humira, I do not like this drug and unfortunately I've had a bad reaction to it recently. At my last treatment, things were going pretty normal. It was time to up my dose for the next 30 minute cycle and for the first time something went wrong. I couldn't breathe. I felt the inside of my chest get incredibly warm and I felt my throat closing up on me. I kept trying to gasp for air while staying relatively calm but it wasn't working. My mother came back in the room after taking a phone call and I told her what was wrong and she got the nurses. My nurse went on break so she wasn't the one that administered the new cycle dose, when she came in with the nurse who did, everyone freaked out. My mom thinks the full in nurse did something wrong but we don't really know. They stopped the machine and I was able to breathe again after like 1 minute. After 5 my chest wasn't as warm and I was breathing fully. They gave me more Benadryl and the steroid and started the doses over very slowly and I fell asleep. After that experience, I think I'm done with Remicade. I had a Drs appointment later to follow up about the symptoms I'm still having and to talk about the reaction. During the appointment we talked about medical marijuana as an option to help with my Crohn's and as great as that is, there's still a lot of fight with that so it can potentially be a headache especially with where I live. The next step was to have new scopes and biopsies done (came out fine, we don't know why my stomach hurts so much). Then we talked about me adding on 6-MP or Methotrexate along with Remicade. I'm very familiar with both drugs but I let him explain and he kept talking about my increased risk of lymphoma and some other stuff (which is interesting to me because these are both chemotherapy drugs so how in the world?). That brings me here. I'm aware that all of these drugs come with potential risks that can be rare, or maybe not so rare, but it doesn't sit well with me. I'm still pretty freaking young and the thought of being on one of these drugs forever or until I have a bad reaction to it is not ok with me. It's like we have to weigh the side effects up against an already crappy disease and pick the lesser of two evils. Then to me, it's like the talks of cancer and other weird side effects are thrown around so nonchalantly like it's just normal to have if they occur. I'm not ok with that. I'm not ok with infusions, extra pills, narcotics, steroids, antibiotics, all of the above that come with having IBD. I'm not ok with these cocktails and being a Guinea Pig even tho I do know that these things work. I just worry about the emotional and physical cost down the road. Especially the financial one. Yes, there are 100% up days where I'm happy, healthy, fine, and I'm grateful for them. I just don't like the fact that every time we talk or try a new medicine, there's a warning with it and more medicine to help with the side effects. I research all of my medicines before I decide and it's getting to me. I don't really know what to do right now but I feel kind of lost and I want to stop my infusions and find something else. Well...a cure. The Crohner

[thecrohner]

(via Saturday Morning Cartoons: Baopu #15) by Yao Xiao

words to remember

[thecrohner]

When someone tells me that my chronic illness isn't "that bad"

[thecrohner]

You Know You Have IBD When...

You stress the importance of monitoring health to your friends and family because you know what it is like to lose your health suddenly.

[thecrohner]

HAPPY IBD AWARENESS WEEK GUYS!!!

[thecrohner]

Don't Pity Me!: It's Ok to Care Though

Hello, Class! Today we’re going to talk about compassion, empathy and all of those fun things. Most importantly we’re going to talk about that dreadful word, “PITY“. What it is, what it isn’t, and why we hate it.

Having a chronic illness or just falling short on hard times is something that not only effects us, but effects those around us. Particularly those that love us. Usually when we’re told something is wrong with us, or we get some bad news that may change everyone’s life and usually comes with a lot of sad emotions, the first thing we say is? Ah you guessed it! “I’m ok, I can handle it and will get through this. DON’T PITY ME!” This may all be true but there’s a couple of things that follow that we may or not be aware of. Numero uno mis amigos is that we have no idea what the word pity means, and I’m willing to bet that our friends and family don’t either. So what exactly is pity? Let’s look it up.

According to the Oxford dictionary, Pity is:

The feeling of sorrow and compassion caused by the suffering and misfortunes of others.

Doesn’t sound too bad right? In fact, we do it all the time when we see someone hurt in any kind of tragedy. Especially those in other countries. We feel sorry for them, we have a rush of compassion and empathy, flooded with anger that we can’t do anything to stop their pain or know how to help them. We do it in our every day lives as well. We do it with loved ones when we see them hurting from a broken heart or losing a loved one. We do it to ourselves when we’re grieving something or just sad. Doesn’t look too bad right? It really isn’t when you put it like that HOWEVER, here’s where the problem comes in.

Pity is bad because you feel sorry for someone but you won’t do anything about it, not because you can’t, but because it’s not that deep for you. It’s not your problem. It’s like when you see a missing person poster or something happens all over the world. You feel sad but it’s not happening to you so you don’t give it too much thought. Kind of like when you see a homeless person. We all do it. We walk by, have preconceived judgements on how they got there and we go “how sad” or “the city should do something.” or you just walk by and pretend to ignore them. You’re simply a watcher and your only contribution is pity. You look at a person as if they’re not going to get better so you feel sadness for them and that’s it. You keep them as the victim and never the victorious.

What does it feel like to be pitied?

You feel doubted, or you feel you’re looked at as helpless, lifeless, can’t overcome or do things on your own. When someone “pity’s” us, things change and there’s this feeling of inferiority. The person who does the pitying is usually in a better condition physically, financially, or emotionally, and becomes or puts themselves in a superior position.

Example:

In your typical teen movie, the popular kid will go on a date with the unpopular kid because they feel sorry for them and saves the day. Usually in this plot the nerdy kid finds out it was a sympathy date and not the real deal. It makes things worse and the popular kid gets angry because in their mind they’re doing them a favor. Reality? It’s pity. They acted on the emotion of feeling sorry for the kid with the idea that they’ll never get a date because they’re at the bottom and that it would make their day to be with the popular kid. One, that’s a lot of nerve to think you’re that important. It’s embarrassing and it makes them feel even worse and may even cause them to receive more ridicule. Sure, it probably would have made their day, but it would’ve meant more if it were genuine. Pity hurts.

So where does compassion come in and what is it?

According to Webster, Compassion is:

sympathetic consciousness of others’ distress, together with a desire to alleviate it.

So true compassion is seeing someone suffering, or a need,being aware of what that feels like, and offering or providing help to see the situation get better. It’s without judgement. In the above example, compassion would’ve been if the popular kid sat with the other and talked to them to get a better understanding of who they are and why they’re dateless versus assuming it’s because they’re different.

You can feel compassion for those you don’t know but most of the time we feel it for those we love. So what does that look like? It’s empathy. You feel and identify with their pain.

Example:

Your friend may break their leg in a car accident and they can’t walk or play sports for 6 months. Compassion is empathizing with their pain, and being there. You put yourself in their position and help them see through to the outcome. You may cry with them because you know how important that thing was to them and you hate seeing them hurt. You may pray with them to get better or laugh with them to take their mind off it. You may even just sit with them in silence or listen to them vent. Instead of doing everything for them from the jump, ask them how they’re feeling, check up on them from time to time. If you know they can’t drive to work or school, offer to drive them or make sure they have a ride. You listen. If they can’t get up off the couch, help them up when they ask or you see a struggle. You do this because you want to help and you care, not because you feel like they’re never going to overcome this without you or they’re a hopeless victim. Yes, they’re impaired and they’ll need help but what they don’t need is pity.

In situations like this, there may be times where they will want to try to do as much on their own as possible without asking for help because they want to overcome and be strong. This is good. This helps them grow and learn whereas pity would keep them stagnant. No they can’t run 6 miles but trying to walk to the table 5 feet away may be a healthy challenge. They’ll probably have poor judgement at times by trying to be bigger than their situation and they’ll probably fall on their face. If it’s not off a cliff or life threatening or more damaging to the situation, let them because that’s when they’ll recognize (most of the time), that they need some kind of assistance as well as seeing their progress. Even if you can’t help, because you don’t know how or are just unable because you’re in another country or something, offering a joke or a prayer or token of wisdom, those things are great because it’s done with the other person in mind. It’s the gesture of “this may help them feel better or ease the strain”. If you were doing all of this because you see them as lower, or to pat yourself on the back, it’d not only be pitty, you’d be an asshole.

It’s ok to care. It’s also ok to let someone care for you. What does care look like? It’s a conscious and genuine effort to be there for someone in their time of need. It’s rooted in compassion but most importantly love. It’s not because you feel sorry for them, it’s because you want to see them get through and you believe in them.

I’m stubborn as hell so I want to do everything on my own. Part of that is because I’ve had to do that a lot of times in my life and other times because I myself don’t think I’m worthy of all of this love and attention. So for me as well as some of my friends, it works if you offer to help as well as asking. When you ask, it puts the decision and control in the person who’s “sufferings” hands. It gives them the ability to say “hey yea, can you go to the store for me or can you just sit with me”. Or “yea, I just need to be alone for a while to figure this all out but it’s ok to check on me in a week or two”. Versus just doing something because you see them as a weaker being.

On the reverse, we have to let people that care about us care for us. One because they love us and two, because we’re going to need help. It’s trust. On days when IBD gets the best of us, it’s nice to have someone call and say “hey are you ok? You want any soup or to stare at the sky?”. Don’t block that out or push it away. Love and laughter are beautiful and healing. It’s human.

So don’t pity us. Care for us. Show us compassion and understand that we’ll have a hard time here and there but we’ll be ok and get through. Especially with genuine help, big or small.

I hope this makes sense and helps someone today. Let’s talk about it! Leave a comment or ask a question.

As always,

Better days,

The Crohner