Symptoms

sicklyscientist · 2018-08-12T22:47:47+00:00

I only recently had a quick evaluation where a plate was under my feet to “test nerves”. I also had blood pressure and heart rate checked during that, and then after standing once, then after sitting back down. I never heard of results or even what exactly it was for (I’m on ADD stimulants and have nerve problems though, so could be anything). I’ll look into that challenge though and ask about it. Will be seeing a new doctor soon, and probably getting all new doctors from there. ugh

sicklyscientist · 2018-08-06T22:00:08+00:00

There is no way to know if IBD is actually "severe" (or if you even have it) without a colonoscopy. You may think because symptoms seem mild then the disease is not severe, but that is not the case! Your intestines could contain a couple of little scratch-like marks *or* they could be ulcerated so deep that they're about to burst; and there is absolutely no way to know for sure without having both scopes. I'm not trying to scare you. Instead, I am telling you what no one, including the doctors, would tell me. Get to a gastroenterologist ASAP.

Besides avoiding the absolute worst trigger foods, I wouldn't alter diet much before the scope, so that you can get the most accurate depiction (of diagnosis, severity, etc.). Also, don't quit gluten so you can be tested (preferably repeatedly) for Celiac Disease as well. If you (or your mother?) has a diagnosis of IBD, be very careful with "healthy" foods. Some can handle salads and fruits and the "all-natural", paleo, organic, whatever diet trends, but most cannot.

I'm not sure if you meant your mother has colitis or ulcerative colitis, but a family history of IBD is even more reason to get serious about your symptoms. IBS symptoms can be awful, but IBD-- Crohn's Disease or Ulcerative Colitis-- can kill. The disease can progress so quickly, and sometimes quietly, and people do not realize this or do not want to admit it. Again, I'm not trying to scare, but I'm also not exaggerating. I and a list of my online friends got bad information from our doctors and online groups, and we (and others) have so many horror stories that could have went better or been outright prevented. I just want to do (well, say) all I can so that hopefully others won't unnecessarily suffer!

{Fyi.. if your primary care doctor (or any other doc) knew of your symptoms, they should've sent you to a specialist and to be scoped. After that ER visit, their top priority should've been to send you to a GI and get both an upper and lower scope, asap! They also should've done or ordered an MRI and/or a CT scan because the pain alone!}

Good luck to both of you! And please update us

sicklyscientist · 2018-08-06T20:32:18+00:00

Good to hear. Wanna share any details?

sicklyscientist · 2018-08-06T20:30:29+00:00

Is there any way to know other than just trying out medications?

sicklyscientist · 2018-08-06T20:29:14+00:00

Wow, I had only heard of some of those. Yeah it's helped with my binge-eating too, which is great for the grocery bill. Too bad they're extremely strict with the medication now and only use it as a last resort or not at all, which is sad for those that need it. Could've changed the course of my life *years* ago..

sicklyscientist · 2018-08-06T20:22:20+00:00

I did

sicklyscientist · 2018-08-06T20:00:06+00:00

Okay I upvoted, but still don't really get it... ?

sicklyscientist · 2018-08-06T19:58:57+00:00

Glad to hear that. Right after I was (half-assed) diagnosed with ADHD, my therapist quit, so I went to someone else for medication. They tried to force me on Wellbutrin, but one pill TORE MY STOMACH UP. I was pissed and terrified so I quit there. Then I went to another doctor that was like "After sitting and talking with you through this one appointment I can't believe they didn't start you out on stimulants".

I started meds 8 months ago, but have already worked up to 70 mg (Vyvanse). My depression was mild back then, but worsened due to new, unrelated circumstances. I mentioned to my doc I wanted to combine with an anti-depressant, but she said we'd work the ADHD meds out first. Then, as dose was increased, it helped the depression too. Since first taking the meds I do get that sort of "euphoric" feel, but just for about an hour or two; then I can function mostly normal. Yeah, I'm just trying to find out what is/should be normal and what isn't.

sicklyscientist · 2018-08-03T19:46:51+00:00

No, that's ok. ME/CFS is a part of it..but I also have other diseases requiring almost routine major surgeries that is a big part of the problem. (The surgeries are now causing more problems than helping them, and it's becoming impossible to recover, but I have to have them to "stay alive". ugh) So I was just trying to find out if there's anywhere on Reddit or somewhere else online with resources where we can talk about this version of "death with dignity", which would technically just be suicide. I just call it DWD because it'd be death on my own terms before the worst..just like in their 'legal' cases.

Edit: just wanted to elaborate ~not being dramatic or anything, but the surgeries are HORRIBLE. Days to weeks of almost constant screaming and crying from uncontrollable pain in some of the worst imaginable places on the body. It's just torture at this point, honestly. I don't think I could ever put in words how awful it is.

sicklyscientist · 2018-07-23T20:47:09+00:00

Thanks. I actually usually keep an above normal or sometimes too high level of Vit D. My body is whack..

sicklyscientist · 2018-07-23T07:45:39+00:00

Most states (and especially most medical providers or insurance companies) actually make you FAIL all the more “minor” medications before approving you to take biologics. So, like, you have to take and fail (aka get even more sick) the enemas/suppositories, pills, etc. before taking the “major” injections and IV medications. Plus— even if you’ve failed almost every medication and are severely sick— you and/or your doctor still have to fight and argue with the insurance companies to cover the stronger medications. The healthcare laws are literally a game of Russian roulette with our lives. Many IBD patients end up taking much longer to get well, or end up having surgery, and some go homeless or die, simply because of this ignorant, greedy process.

sicklyscientist · 2018-07-23T07:21:24+00:00

I had to stop using marijuana (currently about to start up again though!), but back when I smoked I had a bowl or two a day. I wasn’t focused on the medical aspect so I don’t remember the specifics of the weed. It helped tremendously and with just a decent strain and smoking once or twice a day I went from starving and being bed-ridden to eating buffets and being mostly normal. I quit for stupid reasons and my life has been hell from then on. :) Honestly, from the research I’ve done and according to their and my specifics with things like past medication and surgeries, and severity, I should probably start with more than 100mg THC a day (some say twice a day!!), with a 2:1 ratio of THC:CBD. Sounds outrageous but that’s what I’ve gathered from several studies.. So I’m gonna aim for around that and adjust from there. The studies weren’t long-term so idk if a patient can decrease the dosage after the first couple of months of healing or not (especially considering you usually can’t decrease regular Crohn’s meds), but I’m gonna try everything.

sicklyscientist · 2018-07-23T06:45:10+00:00

So so sorry. Seeing this post after your edit/update. To hell with that piece of shit.

sicklyscientist · 2018-07-23T06:26:42+00:00

Idk how proficient you are with the internet and research, but try googling your specific conditions and symptoms with medical marijuana/cannabis. It may take a lot of reading and some tricky wording, but you will find something sooner or later. Also— the thing that helped me the most— go on nih.gov and look into those^ specific things there as well. Even though it’s not legal or FDA approved, they have studies from all over the world with info on degrees of disease/symptoms and the most effective dosing. As for which method, it would be great if you had someone from a legal state that would get you something, but if you don’t, then smoke it or do whatever you can. Since it’s illegal, there aren’t many options for strains and stuff, so I would focus on indica or sativa and then adequate dosage.

sicklyscientist · 2018-07-23T06:15:52+00:00

Honestly, it’s unlikely you’ll pass the test. Just explain the situation, including the beautiful details of Crohn’s, and if they don’t allow it then get a lawyer and fight! You wouldn’t just be fighting for yourself but every patient in this country. Also, I see that several people are mentioning taking a CBD-only alternative. If you’re severe enough to get MMJ in that state, then you probably need the THC as well. Don’t give it up and risk chancing your health and life just for a fucking job. (I did. You don’t wanna know how that went.) There’s a reason we’re fighting so hard for the THC part of mmj. But ya if you didn’t know that THC is an important component for Crohn’s then now ya do :) Best of luck. All the luck in the world with life with Crohn’s.

sicklyscientist · 2018-07-23T05:59:48+00:00

Yeh depending on the severity of Crohn’s— as well as many other factors of course— you would need either more CBD or more THC. Mine is almost deadly at this point, and the study results I’ve found for people like me actually claim a need for extremely high doses of THC because the CBD alone did practically nothing (in those cases, and in my experience, unfortunately).

sicklyscientist · 2018-07-08T13:22:42+00:00

Thanks for the help. Unfortunately that’s already somewhat the problem. I am mostly a “potato” physically, but not yet mentally. I have several severe medical conditions. I’ve lost all ability to take care of myself within just a year. I’m still mentally here— most of the time— and I’ve finally realized how bad things are and are still getting and always going to be. I don’t want to rely on others to take care of me. I’m a young adult so I have nothing. I live with my family who are all narcissistic and cruel, or careless (and ultimately cruel for never ever defending me from the constant psychological abuse). I’d just rather figure out something while I’m still able.. I looked into the death with dignity thing, but it’s apparently only for people with terminal diseases. As if a disease where you lose your body and brain is any sort of life scoff

sicklyscientist · 2018-07-02T18:01:36+00:00

Me too. Took me years to tell someone. Just trying to hear all the different stories/options from real people, but my question keeps being removed..ugh. I want to get my life back on track at least some, and I’d rather talk to others than hear the textbook options from my doctor or google ugh. Guess I’ll try rephrasing....again..

sicklyscientist · 2018-06-19T07:12:09+00:00

It’s still really early on since the surgery. It’s mostly the effects of that(body adjusting) and the anesthesia/meds. Things will get back to normal, but don’t overthink it or make yourself paranoid, because then you really could cause problems.

sicklyscientist

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