My IBD acting up takes a toll on my mental health...

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Fireblossom
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02 Nov 2021, 12:17 pm

I'm gonna first give you a long(ish) rant of the situation and then ask for the advice that I'm here for. If you aren't in the mood to read whining, just skip to the "ADVICE, PLEASE" -part. Skipping the rant won't really keep you from understanding what I need.

RANT:

So here's the thing: I have an inflammatory bowel disease and it's the more serious type that needs daily medication. I got in to really bad shape in 2019 before it was finally diagnosed since the doctors didn't take me seriously. At the end of 2019 I got diagnosed, got meds and those fixed things pretty much completely in under two months. Of course, I still kept taking the daily medication, which is a pretty strong one too. All was good until a few months ago, when my symptoms started acting up. At first I was more worried about if the doctor will listen to me instead of worrying about the problem itself, and after the doctor did listen and gave me the meds to take for the period of eight weeks, same ones as last time, I more or less stopped worrying because they'd already worked once and brought no serious side effects. But the thing is, my eight weeks is up tomorrow and the symptoms aren't gone. They went away for a little while, but came back. I called the doc again and he told me to keep taking the meds for a month longer and that he'll get me an appointment before the end of the year where we can discuss the possibility of stronger medication. And that's the root of my worry.

I've read a little about these stronger meds, from an official handout given to me by a nurse that specializes in IBD mind you, and it listed side effects and that for safety reasons, a person who takes those strong meds has to have blood tests taken often, first as often as weekly or every two weeks, before it apparently eventually goes down to once in two months. And that's really high risk... isn't it? Of course, I haven't googled how dangerous the thing they're checking for is, as in if it does happen can it be fixed with antidotes if noticed soon enough or does it need hospital treatment, but the thing is, I don't wanna google it. If I could be sure that google gave just one kind of clear answer to one direction or the other then I'd check, but if one rather reliable source says one thing and another reliable one says the other, I'll just get more stressed. So I'll just wait until I can ask the doc. I could ask my mom, who's a nurse and has less serious IBD symptoms herself, but I don't want to since she'd just downplay the risks or downright lie in order to not to worry me. She's done that before. I just hope that the doctor will actually be willing to tell me about how high the risks are in percents. I mean, I know they can't know the exact numbers, but there's no way they don't have some kind of statistics. The handout I got says that about 85 % of the users use the medicine for a long time without any serious trouble, but it doesn't say what counts as serious. Anyway, if the doc doesn't even bring up that 85 %, then I can't consider him to be trustworthy when it comes to how high the risks are.
I actually already asked about what the next step is if my current medication stops working when I had an appointment with a nurse in order to learn about the condition in 2020, but she said there's no point in worrying about it beforehand. Since the meds were working at the time, I accepted her answer (with gritted teeth, of course), but now I feel like that was a stupid move. If I already had some information on the matter, I could prepare better mentally and would stress less. So, if I do end up taking the high risk medication, then this time I'm gonna put my foot down and demand to know what the next step is if this doesn't work, either. If I have to, I'll bring up the fact that I'm on the autism spectrum (he can check if he wants; it's official) and knowing what may happen will make things easier for me. With that, he should at the very least give me some kind of pamphlet on the possible next medication or something... or not; medical staff can often be really stubborn about not listening to their patients.

Another thing that worries me is the financial part of the whole mess. The appointment's gonna be an annoying extra expense, but I'm pretty sure of the sum and it's not budget blowing. Not nice, but my wallet's not gonna starve. The fact that I'll probably get some money for my birthday in December is gonna help, too. What I worry about are the meds. How expensive are they gonna be? Would they replace my current meds or do I have to take both? My current meds are expensive, and if the new ones would be even more so, I'd be in trouble. Same if the price is the same. If they're significantly cheaper, I'll survive. If they're cheaper than the current ones and would replace them then that would at least be one good thing in this mess.

ADVICE, PLEASE:

Not looking for any official medical help from here. It's just that this whole thing is stuck in my head and I can't stop thinking about it. I mean, some things can distract me, but in the end, this always comes back. So, does anyone know any mental exercise or something like that that can take one's mind away from the stressing stuff? I really feel like I'd be a lot healthier if I wasn't stuck stressing about these things all the time, so the more suggestions I get, the better. Tried praying as a kid and that didn't work for me so that one's a no go, but other than that, I'm listening.

And yes, I know I could've just kept this short and written just the last part, but I needed to went and was gonna make a post anyway, so I figured that why not? And I did give you guys a forewarning about the whining.



kraftiekortie
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03 Nov 2021, 11:04 pm

I would Google what I didn’t want to Google.

I would take notes (perhaps what you’ve written here can be some of the “notes”).

I would make sure the doctor knows you’re serious, and an excellent advocate for yourself.



Fireblossom
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04 Nov 2021, 11:20 am

kraftiekortie wrote:
I would Google what I didn’t want to Google.

I would take notes (perhaps what you’ve written here can be some of the “notes”).

I would make sure the doctor knows you’re serious, and an excellent advocate for yourself.


Normally I would too, but it tends to make me even more anxious when one source says one thing another source other. Plus, the doctors have told me not to google medical stuff... one would think patients googling stuff would make the doctors' job easier since they wouldn't have to explain so many things, but maybe they've had to use so much time in to correcting misunderstandings or downright false information that they advice against it...?

But yeah, notes. I'm planning on writing all the questions on a paper, hopefully in at least somewhat logical order, and taking that paper along to read them. If I don't do that, I'll likely forget something relevant.

Anyway, I got a letter today that told the day and time of the appointment. Could've been worse; while I should be at work at the time, at least I don't have to go to work, leave in the middle of the day and come back again. Instead, it's at 9.30 in the morning. My workday starts at 9.00, but it would take about half an hour to walk from my workplace to the hospital, so I'll just go there directly and tell my coworker I'll be really that day late. So that's all good. What's not all good is the so called information sheet about the new meds that I got along with the appointment time.

I was told the letter that tells me the time would have more information about the meds, which it sort of did, but I was expecting actual, proper information, like some kind of little notebook or something like I got for this illness when I first got diagnosed, but instead of that it was one one-sided page. The only relevant information it had was the names of the possible meds; the rest it had I could just google now that I had the names. And the so called info sheet made me even more anxious since it mentioned other possible serious sounding side effects that I didn't even know about, yet not any real information about them. Like, how serious are they? How are they treated? How expensive would that treatment be? How common is it? Nothing. Nada.
Well, while finding trustworthy statistics on how many people get those things from these meds would probably be difficult for me on my own, how serious those things are is probably something that's easy to google, so I might do that at least. I mean, if I'm actually overreacting, which I admittedly often do when it comes to my health, and they're things that are usually handled with antibiotics, then great, it's not nearly as bad as I thought. Lots of people have trouble swallowing pills, but I sure ain't one of them. My record is having to take thirteen/day and am currently taking 10/day so that's not something to be worried about. Mostly small ones though but I'm not a stranger to the big ones, either.



aspiemike
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09 Nov 2021, 6:35 am

I am not sure where you are with this as it is now a disease that needs meds. Do any doctors make a suggestion of writing a diary of foods you eat daily? I find my gallbladder condition requires me to stay away certain foods. Considering the bowel is part of the digestive system, maybe perhaps certain foods trigger the condition, and avoiding them makes it easier to manage.


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Fireblossom
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13 Nov 2021, 2:54 am

aspiemike wrote:
I am not sure where you are with this as it is now a disease that needs meds. Do any doctors make a suggestion of writing a diary of foods you eat daily? I find my gallbladder condition requires me to stay away certain foods. Considering the bowel is part of the digestive system, maybe perhaps certain foods trigger the condition, and avoiding them makes it easier to manage.


When I was first diagnosed, I was told to keep an eye on if my stomach starts acting up after eating certain foods and if it does, to avoid those foods. I have done that, but the current problems came so out of nowhere and have been going on for quite a while so they can't have been caused by some particular food.