What is happening to me

[Zebediah]

Something very unpleasant is happening to my body, and I really don't know what's going on. I am hopeful that maybe someone here can give me some assistance.

Relevant background information:
- Crohn's is mainly gastroduodenal.
- Recent steatorrhea, at times passing nothing but oil.
- Stool has been covered in mucus for a while, but it seems to be getting worse.
- Chest pain for the past week or so, mainly on the left side, but sometimes feeling like a sort of band across my chest.
- Upper GI gas issues.
- Recent pyelonephritis, which I am still on antibiotics (cephalexin) for. I also think I have a kidney stone on the move, but I think it is currently staying put. I know what a kidney stone feels like, and this is not it.
- Weird arm parasthesias in both arms (okay, this might not be relevant, but whatever)

Pretty sure I'm in a flare, but the past few hours have been unacceptably ridiculous:

- Started out as just feeling generally unpleasant. My body feels kind of like there is a weird electric current running through it, and this was one of the first symptoms.
- Lurching abdominal pain. Feels kinda like my abdomen is trying to turn itself inside out in bursts. It is not constant, but abdominal "discomfort" is--think like stomach flu discomfort.
- Consistent burning pain, generalised in abdomen
- Progressively climbing fever (currently at 100.4--still seems to be going up, though)
- Very, very dizzy. Partially in really intense bursts, but also just generally feel like my equilibrium is messed up. I've had to lie on the floor numerous times writing this.
- Periodic stabbing back pain


I don't know. There is probably other stuff. I am having difficulty focusing between all of the awful things that are currently happening to my body.

My friend is coming to take me to the hospital now because I feel incapable of driving, but I'm sure I will need some sort of entertainment in the waiting room.

My only guess is pancreatitis. Currently I am not taking medication for Crohn's because it all makes me horrifically sick, but I have been on hydrocodone/apap and cephalexin for the pyelonephritis. I have not taken a lot, and largely it seems to have not affected my digestive system at all.

Thoughts?

 

[nogutsnoglory]

I'm sorry to hear things are taking a turn for the worse and it's important a medical professional see you to ascertain what is going on.

Two things you could try that come to mind from what you wrote are electrolytes and magnesium. Are you bleeding or having a lot of diarrhea? You may be dizzy and need replenished fluids. The magnesium may help with any electric current feelings, and pain or cramps if you have any. These may be beneficial till you see a doctor but you definitely need to find out what's causing your symptoms.

 

[Zebediah]

Thanks for the suggestion; I am already at the ER, so i can't really try those things, but they probably are related. my diet is made up pretty much entirely of toast, since everything else makes me feel like I'm dying. There are occasional exceptions, but i definitely don't have a balanced diet by any means. i have been taking a multivitamin, but I'm sure the effects are not even remotely close to enough to compensate for the combination of lack of intake of nutrients coupled with awful absorption. I did pass blood earlier, and though it wasn't a lot, it was noticeable. I can't tell if the taste in my mouth is blood or bile. it's pretty unpleasant, to say the least.

 

[nogutsnoglory]

Just be sure to let them know all your symptoms and I'm sure they will get to the bottom of it. Good luck and keep us posted.

 

[Zebediah]

Well, they're admitting me. They think it's from a flare, and are blaming the shocking sensations on hypokalaemia, currently--not sure if they tested magnesium levels or not. The chemicals are pretty entwined, so I wouldn't be surprised if both were destroyed. I've never been hospitalised for a flare before; I guess it was bound to happen eventually, haha.

At least the morphine is doing its job...

 

[723crossroads]

Hope you are doing better today, drop us a line and let us know,OK?:ghug:

 

[MEgal]

Hope you're feeling better! Potassium has some weird effects both when it gets too high and too low, so I'm glad they're correcting that (have they checked your sodium and Ca?? those need to be corrected really slowly-esp Na). The pain sounds like pancreatitis-which is the WORST, so I hope hope hope they keep you on pain meds and you're feeling better today! *hugs*

 

[nogutsnoglory]

Glad the painkillers are helping. Keep us posted. Are you staying in the hospital?

 

[Zebediah]

Yeah--I am currently still in the hospital. They are going to do an EGD and possibly a colonoscopy. Thankfully, I do not have pancreatitis. The combination of morphine and ondansetron does wonders and lasts for a reasonable amount of time, which is a plus. They also supplemented with oxycodone at one point, which was considerate of them.

They gave me a one liter bag of potassium chloride, which has been transfusing slowly for probably about nine hours now (and still has 1/5 of the bag remaining, whoo). I also have gotten a round of ciprofloxacin, two rounds of metronidazole (Flagyl), some sort of steroid that I can't rememeber the name of, etc. I was also offered lorazepam and zolpidem (Ambien), whcih I declined--the former due to lack of necessity, and the latter because I don't want to start on an anterograde amnesia-laden deliriant escapade in a hospital. lolol.

I am confident that they will work to find the problem if they've already put this much time into it. I am currently waiting to be squeezed in for an EGD. The doctor said thwy may also keep me for a colonoscopy, depending on the results of that.

I feel way better with the morphine and Zofran, but once they wear off, I'm pretty screwed again, so I really hope they can figure out what's wrong before turning me loose into the cold, unfeeling world of not-morphine. the electricity sensation has gotten loads better, at least. thank god--that was just horrible.

thanks for the support, y'all--i know you don't really have a whole lot aside from empathy to contribute at this point, but it's nice to have someone able to comprehend what I'm experiencing to some point. my friends are great, but very few of them know what a chronic disease is like.

 

[Zebediah]

as a plus, i've been using my morphine loopiness to make ridiculous portraits of my friends, which has proven amusing to all involved.

 

[Hope345]

Sending lots of support too.
It is so good to hear they are treating you so well and trying their best to help. You are certainly in a flare and need lots of treatment to help you get it under control.

I bet your pictures are hilarious

 

[723crossroads]

:ghug:Hope they get you all squared away before they send you home and make sure you get scripts for more painmeds, as you will need them for well, who knows how long? I always keep some on backup for these days. May God bless. Plz share some of your funny pics on your profile page under "Albums" when you can!!!

 

[Ribo]

I feel way better with the morphine and Zofran, but once they wear off, I'm pretty screwed again, so I really hope they can figure out what's wrong before turning me loose into the cold, unfeeling world of not-morphine. the electricity sensation has gotten loads better, at least. thank god--that was just horrible.

In my experience (which ncludes recent experience) they will give you more Zofran and morphine on a fairly regular basis, if you really need it and let them know that you do. Don't be afraid to tell them your pain is on the rise again, and they will usually keep it coming. The idea is to stay ahead of the pain curve.

IV Meds like morphine and dilaudid are great for very quickly cutting the pain but don't last very long, and usually they will readminister them once you are sure your pain is moving back up the scale. Tell them what's happening and they will usually treat the pain, so long as doing so won't interfere with a procedure they want to get in.

 

[Zebediah]

May as well update... enjoy a wordy post, because concision is for losers.

It has been rough since my last update.

On Thursday, I had an IV site reaction to cipro. This happens to me with quinolones sometimes. They decided to give me intravenous diphenhydramine to combat it. It did what it was supposed to, but... if any of you have ever taken/received a very large amount of antihistamines, you might kind of know where this is going. I am pretty intolerant of such chemicals, so the deliriant effect was pretty excessive. I was hiding under my blanket for a while. I could still communicate in shorts bursts, but I really wanted to not be conscious or be experiencing perception. Even though diphenhydramine is sedating to me, I was too freaked out to sleep... and then they took me for the EGD.

I woke up after anaesthesia being informed that the EGD did not happen, but my nurse wasn't sure why. I found out later that after they put me under, I was very "agitated", but my heart rate was around 150bpm and my blood pressure was very low--so they couldn't give me more sedatives. I am pretty sure that combining diphenhydramine with anaesthesia-strength sedatives did my psyche in... my heart rate climbs on antihistamines, and my blood pressure is generally low. Apparently I had a really bad time, but hey, at least I don't remember, right?

They had me do a colonoscopy prep later that night, and today I got an EGD and colonoscopy at the same time (apparently they used much stronger sedation... haha). This would have been good and fine and all, until I regained consciousness because of stabbing pain and the doctor telling me that the scopes looked completely normal...

I totally broke down at her. I had no idea what to do with the information that they found nothing acutely wrong with my gastrointestinal tract. She gave me fentanyl for pain since I was still in the recovery room, and when I came back to my hospital room, I burst into tears and explained that I just didn't want to have to deal with living like this anymore, and that it was not worth it if I had to be in constant pain forever. She asked me if I suffered from clinical depression, and I responded with "I'm pretty sure if anyone had to live like this, they would be pretty upset at least every once in a while as well." Eventually, I felt better, but only after some revelations took place.*

I hadn't eaten since I was admitted (almost 48 hours) until about twenty minutes ago. I just kept refusing food... I couldn't really even think about eating without getting sick. They have me on an all-liquid diet now, which is of course an adventure, especially since I'm also vegan. My choices are pretty limited to vegetable broth and fruit juice, lol. The last thing I ate was some non-vegan soup they brought me (cream of mushroom) becuase I didn't want to waste it--that was the twenty minutes ago thing--but you guys probably know how dairy tends to work with Crohn's, so I won't get too far into that subject. I was lactose-intolerant way before being diagnosed. Morphine has made it easier to tolerate, but uuugh. They decided to just put lactose as one of my allergies to avoid something like that happening again...

I am not sure what they are planning for me now. The scopes were clear. They are basically just keeping me here and giving me pain and nausea medication. I am wondering if they are trying to keep me to control my diet or something, but I am not sure. I think they were concerned about my abject malnutrition and anaemia, so perhaps they are trying to improve on that. I have been on a potassium chloride drip the entire time I've been here aside from when I was being scoped, and they continue to switch between antibiotics for some reason or another. Last time I was tested, I still had hypokalaemia (albeit much more mild). They have also been giving me a multivitamin and Prilosec as of yesterday. Too bad I despise prilosec :/

Not sure how long I'll be here, but I am fine with at least having someone to make sure I don't die for a while. When the morphine and Zofran wear off, it's back to square one, and when I was off of the potassium for less than an hour, I felt the electric sensation coming back. I just want to feel better, but they are really just not sure what is wrong at this point. Hopefully they can figure it out before I get discharged and have to go back to feeling awful again.

*One good thing came from how upset I was earlier, though, and that was this, which is an excerpt of something much longer:

If I am going to be sick and cachectic anyway, I might as well get back to exploring the world instead of putting it off until the fabled day when my poor health doesn't rule my life.

I have put off leaivng America permanently because I get Medicare and disability checks due to Crohn's, but I am starting to realise that I am just holding myself back for a safety net that isn't really all that safe. I don't gain much by staying here. Hospitals can't really fix me any more than I can fix myself if they can't find decent clinical signs. Thus, I think I am going to immigrate elsewhere once I can figure out specifics on that subject. I just need to see more than what this place has to offer. I have known this for some time, yet it has been six years now since I came back to this country from Japan, and I have not left since... it doesn't sit right with me.

I truly think I could work if I had a prescription for narcotic analgesics--they really fix just about everything for me--but my age and appearance makes it difficult for doctors to trust me. (All 24-year-old males with long hair are pillheads, obviously.) I just moved from Kentucky, where opiate abuse is a much bigger issue than many places, and I'm hopeful that Nevada is going to be easier to deal with. It has seemed that way so far. Once I have this figured out, I think I can make real life happen. I guess we'll see.

Oh yeah, and I'll be uploading some of those drawings I've been doing later for laughs.

Thank you for your support, everyone... it has made this easier to deal with, at least to the extent that I can ramble forever and not feel like I'm talking to a wall (or not actually BE talking to a wall).

 

[723crossroads]

Hi Zebediah,
I just read your long post and tried very hard to take it all in. I am not as educated as you on any of what you obviously know alot about. The whole crohn's experience is just a puzzlement to me. I am new to alot of it and am blessed I don't have it as bad as some of you. You obviously have it up higher in your small intestine and the colonoscopy couldn't pick it up. Samething here last time. I am already sick of the whole gambet of tests and diagnosis and then next test, undiagnosis. remission and calling it IBS. No way is it IBS. Just got my CRP results today and my imflammation markers are 16.2. Yes I do suffer arthritis too but they go hand in hand! So no matter what they tell me, I know it is back. I have the bubble pain that goes from my abdomen all the way up to my chest again.Tired all the time and stomach not doing great after I eat. I take cholestyramine for the D and it works most of the time for me. Gerd is always bad too. So we all seem to get these misdiagnosis with this disease and we keep telling our stories on here hoping someone has an answer. But the ones who are trained to give us an answer, never really give us the answers, they just keep giving us pills and sending us away only to return in a few months.
Do they ever really help us in the long run? IDK because you can only take a drug for so long and it quits working. That's why I won't risk taking biologics. Already had cancer and am in remission for almost four yrs. I'll stick with my diet changes as much as possible and take the med for D and come on and talk to you all. Works better this way, don't you think???:ghug:

 

[Zebediah]

Hey 723,

I used to be a biology major with a firm interest in medical science and pharmacology, so I find myself sort of inadvertently rambling about somewhat technical things without giving it a lot of thought. Many people here have enough first-hand (or research-based) experience to easily understand what I'm talking about, but don't feel bad if some of it can be confusing. I would not be able to understand these things as well had I not made pharmacology and medicine my interests of utmost pursuit over the past decade. Medicine is complex, and so is the human body. Plus, I suck at being concise and speaking with clarity (I'm even doing it now!), so for anyone to be able to comprehend what I say is kind of astounding... especially when I fail to remember that "potassium deficiency" would probably be a little bit more easily recognisable to most people than "hypokalaemia"--I am all about medical terminology. It's a little too fascinating for me

I do not know a lot about how remission works; I do know that clinical remission (where there are no directly observable clinical signs such as inflammation) and symptomatic remission (where you or I do not observe symptoms of Crohn's) do not necessarily overlap. They found no inflammation in my upper and lower endoscopies yesterday, or on the CT scans I have had recently, but obviously I am still symptomatic. Conversely, when I had the most obvious clinical signs (many ulcers, high degree of observable inflammation on CT scan, positive inflammatory markers in the blood), I was not as sick as I am now.

I was upset when they told me they found nothing in my GI tract yesterday, because in Kentucky, I would have basically just been ejected from the hospital and labelled a drug-seeker forever. Obviously, the unexplained pain was/is horrible too, but feeling like the care I was receiving was suddenly going to stop was equally disheartening. I am still surprised that I have not been discharged yet, and they are continuing to work with me on my pain and other needs until they deem me worthy of going home (whenever that'll be).

I understand that sometimes doctors can describe Crohn's/IBD and IBS as occurring simultaneously. It is my (somewhat uneducated) presumption that the damage IBD causes to the gastrointestinal tract predisposes us to functional disorders similar to IBS, even outside of the context of a clinical flare. Either way, IBS can be debilitating on its own. An oft-overlooked important aspect of a physician-patient relationship is symptomatic control even in the absence of clinical signs. It has been my experience that this can be very lacking in healthcare. For some physicians and nurses, numbers and images mean everything. There is often a strong disconnect between the caretaker and patient, and I personally find this unacceptable.

Biologics can be scary. I was on Remicade for about four months, and it gave me inconceivably horrendous migraines, and I got strep throat maybe three or four times in those four months...! Medication can be questionable, that's for sure. I am glad you have found comfort in supplements and dietary modification. The latter has also worked well for me--cutting out processed food was one of the best decisions I ever made.

I don't think I'd want to go on biologics with a history of cancer, either. Some immunosuppressants may be more suitable, but there is still risk. I imagine it depends on the type of cancer you had whether it'd be notable. Budesonide (Entocort) is often an effective medication. It may be a steroid, but it is different by mechanism than many other steroids, and the effects felt outside of the GI tract are typically pretty limited. You generally don't even have to taper to stop taking it--I know I didn't, and I had no problems. Still, if you are feeling well enough off of body-assaulting drugs--by all means, continue on your current regimen. I wish you luck in such endeavours; I wish that I could simply take supplements to fix my deficiencies, but my body seems to suck at absorbing nutrients, so I'm at a bit of a loss.

 

[MissD]

Different countries can be a nightmare when it comes to crohns I think Ive discovered. Im in Australia, and I read these nightmare stories of people from other countries who have to have health insurance to get anything, and if they havent got it they dont get medications they need. But here I can pretty much get whatever I need, and usually at a price I can afford. Sure I might have to wait on the public wait list for free surgery but if I need it sooner than the waitlist would allow, then I get bumped up the list and get it when I need it.

Moving to a differnt country would scare the crap out of me, possibly literally.

 

[723crossroads]

Hey 723,

I used to be a biology major with a firm interest in medical science and pharmacology, so I find myself sort of inadvertently rambling about somewhat technical things without giving it a lot of thought. Many people here have enough first-hand (or research-based) experience to easily understand what I'm talking about, but don't feel bad if some of it can be confusing. I would not be able to understand these things as well had I not made pharmacology and medicine my interests of utmost pursuit over the past decade. Medicine is complex, and so is the human body. Plus, I suck at being concise and speaking with clarity (I'm even doing it now!), so for anyone to be able to comprehend what I say is kind of astounding... especially when I fail to remember that "potassium deficiency" would probably be a little bit more easily recognisable to most people than "hypokalaemia"--I am all about medical terminology. It's a little too fascinating for me

I do not know a lot about how remission works; I do know that clinical remission (where there are no directly observable clinical signs such as inflammation) and symptomatic remission (where you or I do not observe symptoms of Crohn's) do not necessarily overlap. They found no inflammation in my upper and lower endoscopies yesterday, or on the CT scans I have had recently, but obviously I am still symptomatic. Conversely, when I had the most obvious clinical signs (many ulcers, high degree of observable inflammation on CT scan, positive inflammatory markers in the blood), I was not as sick as I am now.

I was upset when they told me they found nothing in my GI tract yesterday, because in Kentucky, I would have basically just been ejected from the hospital and labelled a drug-seeker forever. Obviously, the unexplained pain was/is horrible too, but feeling like the care I was receiving was suddenly going to stop was equally disheartening. I am still surprised that I have not been discharged yet, and they are continuing to work with me on my pain and other needs until they deem me worthy of going home (whenever that'll be).

I understand that sometimes doctors can describe Crohn's/IBD and IBS as occurring simultaneously. It is my (somewhat uneducated) presumption that the damage IBD causes to the gastrointestinal tract predisposes us to functional disorders similar to IBS, even outside of the context of a clinical flare. Either way, IBS can be debilitating on its own. An oft-overlooked important aspect of a physician-patient relationship is symptomatic control even in the absence of clinical signs. It has been my experience that this can be very lacking in healthcare. For some physicians and nurses, numbers and images mean everything. There is often a strong disconnect between the caretaker and patient, and I personally find this unacceptable.

Biologics can be scary. I was on Remicade for about four months, and it gave me inconceivably horrendous migraines, and I got strep throat maybe three or four times in those four months...! Medication can be questionable, that's for sure. I am glad you have found comfort in supplements and dietary modification. The latter has also worked well for me--cutting out processed food was one of the best decisions I ever made.

I don't think I'd want to go on biologics with a history of cancer, either. Some immunosuppressants may be more suitable, but there is still risk. I imagine it depends on the type of cancer you had whether it'd be notable. Budesonide (Entocort) is often an effective medication. It may be a steroid, but it is different by mechanism than many other steroids, and the effects felt outside of the GI tract are typically pretty limited. You generally don't even have to taper to stop taking it--I know I didn't, and I had no problems. Still, if you are feeling well enough off of body-assaulting drugs--by all means, continue on your current regimen. I wish you luck in such endeavours; I wish that I could simply take supplements to fix my deficiencies, but my body seems to suck at absorbing nutrients, so I'm at a bit of a loss.

I was on Entocort after Asacol (Which did nothing) but only for a few months and have never been back on it.If I am not showing ulcers in tests them my Gastro doesn't seem to know what to do with me. Even though I have symptoms. he did give me cholestyramine for D and it helps so much when I take it everyday.He gave me hyocyamine for the bubble pain I call it rising up inside. It about killed me. I was on a short vacation and ended up in bed with the spins so bad, worse than any drunk ever gave me. Then puking for two days! Never again! I'd rather stick with oxycodone for pain, thankyou kind sir!

 

[TaylorLauren]

Thanks for the suggestion; I am already at the ER, so i can't really try those things, but they probably are related. my diet is made up pretty much entirely of toast, since everything else makes me feel like I'm dying. There are occasional exceptions, but i definitely don't have a balanced diet by any means. i have been taking a multivitamin, but I'm sure the effects are not even remotely close to enough to compensate for the combination of lack of intake of nutrients coupled with awful absorption. I did pass blood earlier, and though it wasn't a lot, it was noticeable. I can't tell if the taste in my mouth is blood or bile. it's pretty unpleasant, to say the least.

I'm so sorry to hear about your struggles, Zerbediah. I hope you're doing better. This question has to do more with your general well-being then the horrible experience you're having now: Have you ever considered juicing fruits and vegetables? You get all of the nutrients without dealing with the stomach upset that accompanies digesting fiber. I just know how important a balanced diet is, and even though ingesting healthier foods might hurt now, in the long run you'll feel better for it. Good luck in your healing process!