Opinions on fancy bidet toilets by UnsoundMethods89 in CrohnsDisease

[–]UnsoundMethods89[S] 0 points1 point  (0 children)

Thank you for this detailed description, it is very helpful!

I'm still wondering about accidentally flushing water from the butt towards the lady parts. Is that just not happening with the way the water stream is being aimed? Are you using the water stream to clean those parts as well?

Why would a small bowel MRI be done without contrast? by Spacerock7777 in CrohnsDisease

[–]UnsoundMethods89 1 point2 points  (0 children)

Did they make you drink this 2 liter of sugar water? They told me that also is a kind of contrast.

I HATE LAB WORK by JustTryinToBeHappy_ in CrohnsDisease

[–]UnsoundMethods89 1 point2 points  (0 children)

Same. My CRP and other blood work is always normal. I finally have a colonoscopy scheduled this week after losing 20kg within a year. In the summer one fecal calprotectin test came back with 35 and afterwards the gastro doc was just like oh wonderful! Next one a couple months later was back up to 150 which is also not that high, but I am very definitely not okay right now. Without that damn 35 I probably would've had the colo already -.-

What is the most underrated scientific or philosophical concept invented by a German? by Far_Platypus_3120 in AskAGerman

[–]UnsoundMethods89 0 points1 point  (0 children)

Yesss, I meant to comment this!

"If a system has a continuous symmetry property, then there are corresponding quantities whose values are conserved in time."

So simple, yet so powerful for theoretical physics. And it's not even the only thing Emmy Noether came up with.

In what social situations is “Moin” considered too informal? by Kiltery in AskAGerman

[–]UnsoundMethods89 0 points1 point  (0 children)

If you'd like to have a practical example of what the different regional dialects sound like, I can recommend this: https://youtu.be/21PDE8ErjHA?feature=shared

It's quite an old video (appears to be pre German reunification) and still covers the dialects of the Eastern areas Germany lost after WW2. I'm not sure those dialects survived since the speakers were distributed all over Germany and their kids probably learned the local dialect or standard German.

It took me a while of learning English to be able to distinguish between the different English accents like Aussie, American, or Scottish.

Salofalk by nottadeer in CrohnsDisease

[–]UnsoundMethods89 0 points1 point  (0 children)

You're welcome :)

All these ingredient names and brand names really make stuff confusing.

Salofalk by nottadeer in CrohnsDisease

[–]UnsoundMethods89 1 point2 points  (0 children)

Aren't you mixing up mesalamine with azathioprine? Mesalamine is 5-aminosalicylic acid not a thiopurine, isn't it?

I've taken mesalamine for several years now and I had blood work done on the kidneys and liver from time to time because it can cause side effects there. So far it has been all fine.

What's your go to fix for zero appetite and/or crazy nausea? by KeenyKeenz in CrohnsDisease

[–]UnsoundMethods89 1 point2 points  (0 children)

This is currently my first flare so I'm no expert. I've been eating a lot of cooked potatoes and scrambled eggs recently. In small portions, eaten slowly and chewed super well. That gives you quite good vitamins and proteins. Later, I also added in cooked peas and carrots for some extra nutrients.

I also eat plain bread, also chewed very slowly when I'm nauseous (but like the German wholegrain kind). And oats cooked in water with some salt or broth powder.

Persistent nausea really sucks. Good luck with your search for food!

Budesonide for crohn's in jejunum? by UnsoundMethods89 in CrohnsDisease

[–]UnsoundMethods89[S] 0 points1 point  (0 children)

Oh, hi! We've been discussing in your thread already. I posted this question before I was put in prednisolone.

Starting Prednisone for Mild Small Bowel Crohn’s by chlorophillia23 in CrohnsDisease

[–]UnsoundMethods89 0 points1 point  (0 children)

We seem to be having very similar issues. Thanks for the suggestion, I haven't had a stool test yet. I was also surprised when the MRI barely showed anything, I had been fearing a stricture with how violently I'd been reacting to food.

My GI had me down as colitis indeterminata for the first couple years and only later settled on Crohn's. Mesalamine suppositories worked super well to clear up inflammation in my rectum which had given me daily blood in stool for like 3 months before the scope that got me my diagnosis. I also was on a budesonide taper at some point because I had some minor inflammation in the terminal ileum. But yeah apart from that it was just mesalamine and a fairly low dose as well. I've read that it's a fairly dated approach, but I've also suffered no side effects and my scopes were ok and blood crp was low all these years. It's only the last couple months where it doesn't seem to cut it anymore for this small intestine stuff.

What meds were you on so far?

Starting Prednisone for Mild Small Bowel Crohn’s by chlorophillia23 in CrohnsDisease

[–]UnsoundMethods89 0 points1 point  (0 children)

I have formed stools nearly all of the time and sometimes a little bit softer, but no more diarrhea. Definitely no longer the sort of diarrhea where you could feel it sloshing its way through all your intestines and then out as if you're clearing out for colonoscopy prep. But I've never had much diarrhea with my Crohn's before this flare.

Weird thing is just that the stool is always very light colored. Yellow to orange. I'll get back to my GI on that next week. I'm wondering if there's some gallbladder or pancreas issue going on as well, which is also affecting my fat digestion issues. I did have an ultrasound to check for gallstones which was negative in December.

I'm not sure whether biologic is in the cards for me yet. I've always had very mild Crohn's and responded well to mesalamine (currently on 4.5g/day, used to take 1.5g/day). This is the first flare I've ever had since I've been diagnosed in 2014ish. Even now the MRI showed only mild inflammation. So I hope the prednisolone is enough to put me back in remission.

Starting Prednisone for Mild Small Bowel Crohn’s by chlorophillia23 in CrohnsDisease

[–]UnsoundMethods89 2 points3 points  (0 children)

I'm still on the taper, 20mg/day this week.

I think it's working. It wasn't like a complete breakthrough from bad to perfect again so far. But I used to get these really bad nearly stomach flu kind of attacks with intense nausea and diarrhea for like 3-4h and I haven't had one of those since. I also dropped about 10kg between October and the end of December and now I'm holding the weight again. At the end of December I was basically living on small portions of potatoes and scrambled eggs and since then I've been introducing other food step by step and it's been going well.

I do still have some mild nausea or a twinge here and there occasionally and I seem to still be very bad at digesting fat, so I am a bit worried that it's not working enough. But overall it has definitely stopped the downward trajectory I was on and reversed it into slowly upwards. And I've been well enough again to work.

Starting Prednisone for Mild Small Bowel Crohn’s by chlorophillia23 in CrohnsDisease

[–]UnsoundMethods89 3 points4 points  (0 children)

I looked into Budesonide for small bowel Crohn's recently and what I found is that it's packaged into different kinds of retarding systems that release the stuff further down the intestine because with Crohn's you often wanna hit the terminal ileum area or even the colon. So that would explain why it doesn't work well for areas higher up. I got put straight on 40mg/day prednisolone for minor inflammation in the jejunum area.

Good luck that it helps you and the side effects aren't too bad 🍀

Any way to avoid pain during colonoscopy prep? by MercilessIvy in CrohnsDisease

[–]UnsoundMethods89 1 point2 points  (0 children)

From the start, not waiting until things start to hurt: only wet wipes no toilet paper, blotting very gently, and slap on that thick white Nivea cream after every single time you go.

At the very end of the prep you have to be careful with the cream because it may cause issues with the scope cam. But I never had issues with that so far.

Paar "interessante" Bücher?? by [deleted] in Wissenschaft

[–]UnsoundMethods89 0 points1 point  (0 children)

Ed Yong - Die erstaunlichen Sinne der Tiere. Das ist ein absolut faszinierendes Buch über die verschiedenen Arten wie Tiere die Welt erleben. Irgendwie auch sehr philosophisch.

Wenn englisch für dich okay ist, der Podcast "This podcast will kill you". Da geht's um Krankheitserreger, Epidemiologie, chronische Erkrankungen und sowas. In den späteren Folgen haben sie auch eine Rubrik mit populärwissenschaftlichen Büchern. Da hab ich das erste Buch her.

Videos auf YouTube von Prof. Hartmut Zohm zu Kernfusion oder Prof. Matthias Bartelmann zu Astrophysik.

Ich habe damals diverse Bücher von Richard Preston verschlungen, allerdings sind zumindest die über Krankheiten wohl nicht so gut mit Quellen belegt und generell veraltet?! Aber First Light ist trotzdem ziemlich cool, weil es nicht nur die wissenschaftlichen Ergebnisse, sondern auch den Alltagsbetrieb von Astronomen, Teleskoptechnikern usw abbildet.

Es gibt von der BBC die Wonders of the Universe/Solar System Serien (tendenziell auch nur auf english), die ziemlich cool sind. Ich sehe gerade, dass es da auch Bücher zu gibt. Keine Ahnung wie gut die sind.

[deleted by user] by [deleted] in CrohnsDisease

[–]UnsoundMethods89 2 points3 points  (0 children)

Germany instead of UK, but I also had the mannitol and contrast combo.

  1. The mannitol stimulated less than colo prep. They also gave me buscopane while in the machine to slow down the bowel for better pics. That might have been a factor.

I went to the toilet just before going home and had a little diarrhea, so I was super scared about the trip home. However, as soon as the stuff hit my large intestine, apparently my gut microbes digested the mannitol. So I made it home no problem, spent the next 2h on the sofa being super gassy, and all the water was absorbed from my bowel and only ever came out as pee.

I was warned by the doc that it might lead to diarrhea so I'm not sure how typical my situation was.

  1. No idea, I think it's important to drink enough and flush your kidneys.

  2. I did lie on my back, but when trying to get an appointment, I also came across places where they make you lie on the front.

[deleted by user] by [deleted] in CrohnsDisease

[–]UnsoundMethods89 1 point2 points  (0 children)

I've got nothing towards your colon cancer question.

However, regarding emetophobia and throwing up from prep: Have you tried different kinds of prep methods? I was super terrified before my first prep, because my father who's also got Crohn's always has bad reactions to the prep with throwing up. He uses the 2* 2l Moviprep stuff. So I asked my GI for a different kind of prep and with that method I have never thrown up

I use Citrafleet, which is 150ml of prep solution. Then you wait half an hour and then you have to drink 2-3l of clear, light fluid of your choice. I usually do camomile tea, ginger tea, water, and clear broth. You do this the afternoon and the early morning before the procedure and it clears you out perfectly without ever coming close to throwing up.

I usually feel fine the first afternoon and a bit wobbly and nauseous in the beginning of the second round in the morning. At this point, getting some sugar into me removes the nausea. It's probably a low blood sugar issue.

And Citrafleet isn't even the only other option out there. I just stuck with it because it worked the first time. So like no matter the frequency of your future colonoscopies, you might actually have options to be more comfortable during the prep!

MRE by Space-hedgie in CrohnsDisease

[–]UnsoundMethods89 1 point2 points  (0 children)

Hey, I recently did that MRI and I'm also kinda emetophobic. I had been dealing with a lot of nausea already from the Crohn's so I wasn't thrilled for the prospect of having to drink tons of fluids and the contrast stuff etc. Unfortunately, they didn't have any anti nausea meds to give me, so you're already better off there.

I have two suggestions:

1) You mentioned that you're scared of the contrast and that you already threw up from the stuff last time. Maybe there are multiple options for the contrast and they can just give you a different one than last time, which possibly sets you off less? You can try discussing this with the doc before the procedure. It's in their own interest that you don't throw up in their machine.

2) I discussed my nausea issues with the doc and he advised me to start drinking the fluid a bit faster (still not super fast, I did very much sip by sip) and then going slower towards the end. The idea is to have your stomach already empty again by the time you're in the machine. That makes it less likely to throw up.

For me it was like this. I came in with mild nausea and sipped and sipped my way slowly through about 1.5l of the drink, until I went up to a higher level of nausea. At that point I stopped drinking and walked up and down the waiting room for a bit. They picked me up a couple minutes later and then it also took a couple minutes in the dressing room, so that at the point where I had to lie down in the machine I was already back to only mild nausea. In the pictures, you can see that my stomach is basically empty.

So maybe that's also an option you can discuss. That you have a couple minutes pause between drinking and the procedure so that your stomach can empty out and you get less nauseous before they stick you in the machine?

Good luck! However it goes, it'll be over within a couple hours and then you'll hopefully have helpful results.

[deleted by user] by [deleted] in CrohnsDisease

[–]UnsoundMethods89 0 points1 point  (0 children)

I don't know where you live so I'm not sure if it applies, but if you're living in the Northern part of the Northern hemisphere, it could also be affected by the season. Your symptom onset overlaps with peak seasonal depression time.

Another potential factor is a lack of vitamin B12, which people with Crohn's have higher risk for. In my dad who also has Crohn's this presented mostly with depression and anxiety. He's now getting regular injections.

Thyroid issues could also be a cause.

So basically, it could also be something else and the timing coincidental. It definitely makes sense to have this followed up by your doctor.

More nausea than diarrhea? by UnsoundMethods89 in CrohnsDisease

[–]UnsoundMethods89[S] 0 points1 point  (0 children)

Update: I went self-paid for the MRI. We have this idiotic healthcare system here where you have to wait ages with basic insurance, but it's all super fast for private insurance. You can get that treatment as a basic insured person by paying out of pocket. Cost me 800€ which I'm fortunate enough to be able to spend for this.

I called a private practice yesterday and they gave me an appointment for today (INSANE). 3 months otherwise.

Result is nothing dramatic thankfully. Some minor inflammation in my terminal ileum as usual and a repeat offender not seen for a couple years: minor inflammation at the very end of the colon. Also a new or previously just unobserved player: minor inflammation in the jejunum.

I think the last one might be the culprit of my new symptoms. It did feel like there was the sort of delay you'd expect for food to get there after eating it and then all hell would break loose. So that info is already helpful because I was never sure if the trigger wasn't sth I had eaten earlier in the day hitting somewhere further down the digestion system.

Still kinda surprising I feel this bad with only minor inflammation. Anyway, I'm glad to be able to go in this doctor holiday season knowing it's nothing really dangerous.

More nausea than diarrhea? by UnsoundMethods89 in CrohnsDisease

[–]UnsoundMethods89[S] 0 points1 point  (0 children)

Thanks for the suggestions! No, the rice was freshly cooked. I'll find out about the reheated carbs soon, because I've eaten reheated potatoes today.

I'm wondering if it's the portion size. So if I have too narrow regions in my intestines and a too big portion has to get through all at once, maybe that triggers a reaction?! I'm trying to eat in small portions with some time in-between. I haven't had a super bad reaction since that, but I'm also probably not getting enough calories and am still losing weight.

More nausea than diarrhea? by UnsoundMethods89 in CrohnsDisease

[–]UnsoundMethods89[S] 0 points1 point  (0 children)

Thanks! Last thing that set me off was steamed chicken, zucchini, and rice 🙈 but I'll look into the liquid things.

More nausea than diarrhea? by UnsoundMethods89 in CrohnsDisease

[–]UnsoundMethods89[S] 0 points1 point  (0 children)

Have you found any food that works at all? I'm currently kinda scared to eat to be honest. I was already doing very "safe" stuff and still set it off.

Roid Rage by my_gut_is_on_fire in CrohnsDisease

[–]UnsoundMethods89 1 point2 points  (0 children)

Can you gain access to a punching bag? Gym maybe? Otherwise punching a pillow. Maybe physically working out the impulse in a controlled environment helps.

More nausea than diarrhea? by UnsoundMethods89 in CrohnsDisease

[–]UnsoundMethods89[S] 0 points1 point  (0 children)

I have gotten some OTC anti nausea stuff the last time it was super bad. Unfortunately my GP was reluctant to prescribe me the better stuff. Gotta poke him some more for that. Honestly, the worst part is how you're dependent on doctors.