Superstition and Anxiety

[ARSalerno3]

Hey, I have a random question, been meaning to bring it up. So in January 2023, I was on my way to work, was TOTALLY fine ahead of time, but my Crohn's kicked in and I got sick. To this day, I will not go to the intersection I got sick in. I'm too afraid of it happening again. However, since then, I have gotten sick....3 more times on my way to work, generally along the same road, but I go a real round about away now to avoid the spot I got sick at, out of SHEER paranoia. Does anyone else do this? Like, there are 4 Wendy's in my area, 2 of them have made me sick, one landed me in the hospital....well, let me rephrase that. I ate at the one and then 6 hours later, got sick and had to go the hospital (Crohn's just deciding to attack me I guess as food clearly wasn't a component). Because of those experiences, I will not eat at those Wendy's. Because I got super sick on the 4th of July 2015 and 2016 (one was before I even ate), I will not eat at ALL on that day. Anyone else do these little things? My parents think I'm nuts, my closest confidant thinks it's understandable, my therapist thinks it's totally normal behavior for this type of disease as it is capricious and has no rhyme or reason.

If anyone else does this, let me know, I'm actually super curious. My coworkers know, and they think I'm quite superstitious, hence the title here.

Second though, since I've gotten sick so much on my way to work (almost wrecked once, no one would come pick me up, that was fun, good to know I have no support to lean on lol), and have gotten sick at work and needed to be sent home, how often does this happen to you guys? At what point do you get fired/quit? I used to be invincible and could work 6pm to 4am shifts back in the day but 9 years later, Crohn's has destroyed me. My therapist says I am too hard on myself. I feel I should quit so I can be replaced with a more reliable worker, despite having the best job I've ever had (best in terms of amount of hours, to wage, to free time to have a life ratio, not in terms of income, I don't make enough to survive lol, another source of anxiety). I have deeply considered quitting, just because I am ashamed of getting sent home so often. That's the anxiety piece here.

How do you guys deal with it? Just curious, really wanna know I'm not the only one lol.

Final add-on, the specialist doctor I see will not give me any medication for my Crohn's, he said we are at the end of the line, and has refused to call me back now for 5 weeks (I am counting on my calendar). He denies I have Crohn's. My PCP, another doctor at the same practice, and the radiologist who did my tests all certified it with Crohn's but no one will actually treat me. I don't know if I'm doing something wrong. Should I beg? Like, kowtow? I don't know how to get it to work lol. I have insurance so like, money isn't the problem there. I get more help from strangers at work, there's a big hospital near my work and nurses come in to shop all the time, one was like "sir you're having a medical emergency" and I'm like "Yeah, I have Crohn's." And she was like "oh...yeah can't be helped."

Thanks for reading my lengthy nonsense, sorry if it wasn't worth the time.

 

[J100]

@ARSalerno3 - the way to diagnose Crohn's disease is via a colonoscopy and endoscopy and a biopsy. Colonoscopy is done by a Gastroenterologist. I suggest you schedule an appointment with a gastroenterologist.

 

[ARSalerno3]

@J100

I already had those back in June. I don't need to do them again in September, like one out of three doctor's "demands." I didn't think I had to explain that in this thread, do you need a copy of my diagnosis paperwork too? Endoscope, this year, confirmed Crohn's of the large and small intestines. Fluoroscopy, done in June, same month as endoscope and colonoscopy, all confirmed Crohn's. ONE doctor wants to redo the colonoscopy, the other 2 says it's a waste and the doctor suggesting it is an idiot. I've had 2 colonoscopies in 3 years, one of which already said Crohn's, repeating that would be redundant.

Now that I'm done talking about something irrelevant to this topic, as it was about the little rituals, I guess ritual is the correct word, that one, like myself, does to avoid this capricious disease. Or am I just swiping at the wind? My closest companion says there's no point in trying these things since for no reason, I can just get sick, even without food. She says try to enjoy life and stop being afraid of intersections you got sick at or, be afraid of getting sick while driving and wrecking. That was the ACTUAL topic of my thread.

 

[J100]

@ARSalerno3. I am not a trained medical professional therefore I don't need to see any of your reports. It is important to find a Gastroenterologist who you can trust. All I can say is I wish you all the best in your journey ahead.

 

[ARSalerno3]

@J100

Yeah, I hear ya. I def don't trust the one I have and my area doesn't have a quote "Crohn's specialist", the closest one is like an hour drive and I'm struggling to find the desire to go. The one gastro who said I have Crohn's and the radiologist who did the tests with him all say Crohn's but one doc says literally "I don't know and don't come back." This is after he got into a fight with my primary doc when my primary doc questioned "why is there no treatment plan?" I don't know if I offended the doc personally but now we're worried about seeing anyone in that practice again, despite 2 of them saying I have Crohn's.

But that is a completely different story. I was gonna call the other hospital complex tomorrow and see if they have anyone who will see me somewhat quick, even if they're not a specialist. I did request a change in gastroenterologists but that was, as of this upcoming Monday, it will be 6 weeks, no call back. I've called them every week for 4 weeks straight. Wrote it down on my calendar. But you know, since this is about superstition, now I am EXTRA afraid of doctors, because what's the point if they're going to fight with each other. My PCP was in the appointment on video, and man that was borderline a screaming match. My therapist says stop trying, which is an interesting take on it lol.

 

[Andersen007]

You have touched on a couple of things here. Clearly you are going through a lot, glad you are seeing a therapist.

This disease challenges each and every one of us. So don't be too hard on yourself, even without a shitty disease like the one we face, staying human can be tough enough.

Remember that our bodies went through hundreds of thousands of years of evolution, when we were surviving in the wilderness eating all sorts of nonsense including occasionally poisonous food - so your mind linking the Wendy's to feeling bad is completely normal, and actually many doctors recommend chemotherapy patients to only eat foods they don't like on the day before and day of treatment - because there is a high likelihood that your brain will subconsciously link the food consumed to the physical ramifications that follow, and start to avoid it or hate it. This is how we learned in the past not to get poisoned all the time, before our conscious brain even developed to properly understand it. So consider it an ancient reflex of sorts. But it's something that could be managed and overcome, via Cognitive Behaviour Therapy among other methods, if you would desire so - not sure if your therapist is certified on that, but I did personally find it very useful in past anxieties. If uncontrolled, it can give the ground to behaviour that others may consider weird, such as not eating at a given day of the year, but nothing inherently abnormal about this either, the only thing to remember is that you can get help for it if it does disturb you.

Getting sick at work - hard for me to comment on that. I have a career where I can work remotely, and my company is very supportive of my disease, e.g. I am not working on Fridays, and can cancel a meeting last minute, as everybody understands whats going on. An environment like this could be very helpful, although can be impossible in some professions. But you might find it helpful to talk about this openly, at least with selected people, whenever you are ready - but before you do so, make sure you know what you want, and then dare to ask for it without making them think you are entitled. You would be surprised how many people are ready to help if you give them the means (that are realistic) to do so.

Lastly it would be very important to find a GI you can trust. The one that helped me the most was just a nice human being, not even an IBD specialist. Without seeing your results it would be difficult to comment more on why the doctor might think you don't have it. I didn't have this experience, as my stool calprotectin was very elevated, and then ileocolonoscopy was not definitive, but together with an MRE these 3 things painted a very clear picture. In general if the doctor doesn't think its Crohn's but others do, he should tell you what it is, explain why your results point to that, give an official diagnosis, or send you to further investigations. This is what they are paid for. If this doctor isn't willing to do that, I suggest being very proactive in looking for a new one.

There are also things you can do yourself that help a lot of people, you can search around the other threads in this forum: CDED, SCD, EEN are all good places to start and brought many people improvement, or at least reduction of symptoms - including myself. These dietary interventions can be strict and demanding but also very rewarding. Also stop smoking if you do smoke as it makes Crohn's much worse. But on the longer term you need to be under the care of a GI, ideally an IBD specialist, I dont see a way around that responsibly.

Wish you good luck!

 

[ARSalerno3]

@Andersen007

Thank you for commenting, it is just very frustrating. I'm superstitious in general so I have really concrete routines.

As for work, I work in a specialized retail (non-essential products) but I used to manage 5 days a week, now I'm down to 4 and the occasional 3 because I have to call off OR get sent home. Almost all my coworkers have seen how sick I get, with one saying she could see the sweat rolling off my forehead and hitting my register's countertop. There was one day during last Christmas I worked with like 103 fever, I got sick the day before but the fever never left. I was SURE that was gonna be my last day alive. Most of my coworkers seem to legit believe it and instead of hiding it, I regularly refer to "before I was sick" and stuff like that. Although it was EXTREMELY embarrassing, I was supposed to train a new kid, and I got my one very capable coworker to take my shift, but I had to tell the new kid that they couldn't catch what I have, so they don't need a mask or anything, or to be freaked out, my disease is my own lol.

Funny thing about the gastro docs, I called the other big hospital complex in my area (there are only 2), and they said I cannot go to the office that is within walking distance because while being a gastroenterology practice, they have no Crohn's specialists, and the girl at registration said at their hospital, Crohn's is a 'tier 1' disease and you must see a specialist there or be turned away, so I was turned away. My therapist thought that would happen as she's semi-familiar with that hospital complex. The recommended the one in the county next to mine, but that place's rules were I need a referral to go since I do not live in the county, so I'm waiting on that. They originally wanted me to travel to the main hospital, and I told them very bluntly, that's a 1.5 hour drive, on a bridge, through a tunnel, if I have to pee, or God forbid, get sick, that's the rockiest of all rock bottoms. It's 10ish miles NO BATHROOM, you can't even leave the highway because 1/3rd of it is a bridge with no side walks.

As for the diet things, I tried all of them when I first got sick around July 2017. I got laid off from my work (not me specifically, my old job went into liquidation and all 33,000 of us got booted) in 2018 and was living off my massive unemployment, so I had time to sit around and try those diets without interruption. My primary doc was STUNNED that I continued to get sick and that's when the Crohn's word was flown around because he said "It's not Celiac, it's not a food allergy, it's not dairy..." We even cut all my medications, and reintroduced them slowly, still got sick, even without them. We played around with my vitamins.

The only thing I haven't tried long term, is exercise, and the reason for that is, Crohn's has decimated my one ankle and my one wrist. They initially thought it was rheumatoid arthritis or lupus till the Crohn's diagnosis became more obvious. My big fear is falling while I'm out doing my walks (I used to walk extensively, like enough to keep me beyond fit), but if I fall, I don't generally carry my phone, so I've started to do so, which is embarrassing, I used to not need it, I used to be invincible, but that was almost a decade ago. I know, personally, I'm not ready to get out there, I'm just still too worried about my ankle, and that's like, my own personal problem unrelated to the disease, just me being a coward.

 

[jadegreen]

Short answer is no: I'm not superstitious about places I got sick. It is normal to feel anxious or uncomfortable, however, in a place where you had something unpleasant happen. Once, on my drive to work, I needed to vomit, and I distinctly remember the spot I stopped and seeing it trickle downhill in that place. Every time I drove past that spot, I remembered the incident--but that place has zero causal relationship to my being sick.

I think that if you would like to kick these ritualistic behaviors, you will need to keep working with your therapist to root them out. Having a spiritual walk and acknowledging God can go a long way for these sorts of anxieties too. Much of what happens in our lives isn't in our own control, but how we respond to our lives is in our control.

Also, you either need to find a better doctor or find a way to get along peaceably with one of the doctors you have already seen (one who doesn't scream--highly inappropriate).

 

[jadegreen]

I liked this work for learning healthier habits for emotions:

https://www.amazon.com/SOS-Help-Emo...swatch_0?_encoding=UTF8&qid=1695231747&sr=8-1

 

[jadegreen]

Okay, well, that's weird, the link showed up as "Amazon.com" but it should still take you to the book "SOS for Emotions" by Lynn Clark

 

[ARSalerno3]

@jadegreen

Thank you for your reply. It comforts me to know I am not the only person who remembers their bad moments regularly. I am beginning to feel more confident with things now.

But I did notice something, last time I got sick it was really hot out, like 90+ degrees. Going back in my flare out journal/record, most of my flare ups occur when it is actually quite hot out. Is that just sheer coincidence? Just curious. Sorry for the late reply.

 

[jadegreen]

@jadegreen

Thank you for your reply. It comforts me to know I am not the only person who remembers their bad moments regularly. I am beginning to feel more confident with things now.

But I did notice something, last time I got sick it was really hot out, like 90+ degrees. Going back in my flare out journal/record, most of my flare ups occur when it is actually quite hot out. Is that just sheer coincidence? Just curious. Sorry for the late reply.

There's a chance you were experiencing symptoms of heat stroke:

https://www.mayoclinic.org/diseases-conditions/heat-stroke/symptoms-causes/syc-20353581
Talk to a doc about that possibility as well next time you see one. If your GI tract is already stressed and inflamed, and then you add excessive heat to the mix, I imagine it might make you vomit. It's never happened to me, though.

 

[Aituk7]

Hey, I have a random question, been meaning to bring it up. So in January 2023, I was on my way to work, was TOTALLY fine ahead of time, but my Crohn's kicked in and I got sick. To this day, I will not go to the intersection I got sick in. I'm too afraid of it happening again. However, since then, I have gotten sick....3 more times on my way to work, generally along the same road, but I go a real round about away now to avoid the spot I got sick at, out of SHEER paranoia. Does anyone else do this? Like, there are 4 Wendy's in my area, 2 of them have made me sick, one landed me in the hospital....well, let me rephrase that. I ate at the one and then 6 hours later, got sick and had to go the hospital (Crohn's just deciding to attack me I guess as food clearly wasn't a component). Because of those experiences, I will not eat at those Wendy's. Because I got super sick on the 4th of July 2015 and 2016 (one was before I even ate), I will not eat at ALL on that day. Anyone else do these little things? My parents think I'm nuts, my closest confidant thinks it's understandable, my therapist thinks it's totally normal behavior for this type of disease as it is capricious and has no rhyme or reason.

If anyone else does this, let me know, I'm actually super curious. My coworkers know, and they think I'm quite superstitious, hence the title here.

Second though, since I've gotten sick so much on my way to work (almost wrecked once, no one would come pick me up, that was fun, good to know I have no support to lean on lol), and have gotten sick at work and needed to be sent home, how often does this happen to you guys? At what point do you get fired/quit? I used to be invincible and could work 6pm to 4am shifts back in the day but 9 years later, Crohn's has destroyed me. My therapist says I am too hard on myself. I feel I should quit so I can be replaced with a more reliable worker, despite having the best job I've ever had (best in terms of amount of hours, to wage, to free time to have a life ratio, not in terms of income, I don't make enough to survive lol, another source of anxiety). I have deeply considered quitting, just because I am ashamed of getting sent home so often. That's the anxiety piece here.

How do you guys deal with it? Just curious, really wanna know I'm not the only one lol.

Final add-on, the specialist doctor I see will not give me any medication for my Crohn's, he said we are at the end of the line, and has refused to call me back now for 5 weeks (I am counting on my calendar). He denies I have Crohn's. My PCP, another doctor at the same practice, and the radiologist who did my tests all certified it with Crohn's but no one will actually treat me. I don't know if I'm doing something wrong. Should I beg? Like, kowtow? I don't know how to get it to work lol. I have insurance so like, money isn't the problem there. I get more help from strangers at work, there's a big hospital near my work and nurses come in to shop all the time, one was like "sir you're having a medical emergency" and I'm like "Yeah, I have Crohn's." And she was like "oh...yeah can't be helped."

Thanks for reading my lengthy nonsense, sorry if it wasn't worth the time.

I used to get really bad anxiety attacks cos of chrons, it turned out it was due to a vitamin deficiency. My body just was not absorbing all of the vitamins it needed. Vitamin pills didn't help, they never did find out which vitamin it was either. Beef liver, which contains pretty much everything sorted it in the end. I eat 400g a week and got rid of them entirely