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  • TDS Moderators: AlphaMethylPhenyl | Eligiu | deficiT | paranoid android

I'm dying

^Same here. I remember your posts in P&S were always very interesting, unique, insightful.

Not sure what else to say...
 
Thanks everyone for your feedback. It's hard for me to get online because the chronic fatigue is killer, but today I have a burst of energy (prob due to the B12 shot I just gave myself), so I thought I'd post an update.

I've outlived the several weeks that Asshole a.k.a my GI doctor gave me, and I'm improving, albeit very slowly. However, it's not without risks and complications. Last year the BC government also eliminated the majority of homecare access, cutting funding to cooking, cleaning and laundry, while only leaving services for personal grooming. Because of this, I've had no help in my home while being bedridden. The government claims that this is part of community planning to encourage people to work together more, but as usual it's just a conservative load of crap to justify social spending cuts. The local community here has banded together I'm now fortunate to have a collective of people stepping up to help, for at least a few hours per day. Thank god.

My family has setup a fundraiser to help ensure I don't go homeless, and that food is paid for. A retired doctor has offered me 30 free sessions in a hyperbaric chamber in exchange for consulting work once I get better. I just need to find cheap accommodation on the Island, plus somehow get there without keeling over. I've looked at the research on this modality and it has good results for healing intractable wounds and ulcers, although they don't usually use it in the mainstream for my particular condition. Nonetheless I'm willing to try it. It has the ability to reverse necrotic tissue damage from things like diabetes and severe burns, so I figure it could help with bowel ulcers and GI inflammation. I'll try anything at this point.

I still experience severe pain, and I have other symptoms which concern me... primarily, tachycardia. My blood pressure is normal but my heart rate is over 130 at rest. I'm concerned that somehow the inflammation has somehow spread and is causing myocarditis. I'm also a bit concerned that the gastritis I've developed is actually due to pancreas inflammation, a side effect of the evil prednisone I'm still on -- which would also explain why I'm not digesting food properly. However, the most basic explanation is that my massive diarrhea and bleeding has caused iron and B12 deficiency, both of which can cause tachycardia and mild pancreatitis. I need to get blood work done, but I have been avoiding my asshole GP who won't respect my choice to avoid surgery and tells me I'm going to die at every turn. They just can't help but insert their non-scientific thought viruses whenever possible.

So... in a nutshell, I'm not dead, but I'm not recovered. I'm still refusing surgery. I've connected with a UC support group online and I've learned that surgery is usually reserved for people that have this very long term (5+ years of frequent flaring and no remission) or there are major secondary complications like perforation or bowel obstruction. It's not common for it to be done during a first-time flare, and a first flare can last as long as a year! I'm hoping I don't have to wait that long to get better, cause fuck.

The thing that frustrates me the most is that there's a modern medical chemotherapy that was already working for me but the system opted for surgery clearly for financial/business reasons. The drug is about $22,000 per year (covered by provincial health care in my case), whereas the surgery is a one shot deal costing about $15-20,000. However, with the drug I could end up in permanent remission after one year. Compare that to the lifelong maintenance of a colostomy and its potential complications.

I still don't know if I'll live or die, but I'm not attached. I realize my life is precious but my spiritual beliefs are such that this body is ultimately disposable. I know what my work in this life is to be, and I can't accomplish it if I've been hacked up. Operating at 70% for the rest of my days is not an option. I either recover from this in tact or my spirit moves on to the next chapter.
 
FOREIGNER,

Have no fear of death my friend for we all meet it one day in this dream of a life, the 3rd dimension, if you think of it we are all slowly dying...


I'm here to remind you of who you really are... and who YOU really are is the whole UNIVERSE pretending to be a human playing out a "play" in the 3rd dimension..

There is no true death; one of the greatest aspects about leaving your physical body is the relief that you still exist just outside your body...

I wish you the best for I am just another incarnation of YOU.

We are ALL One.

The universe is INFINITE.

Your sir are INFINITE.

You are eternal, whole, magnificent, and complete...


I have died completely LEFT and came back to the 3rd dimension...

Ive been to the true reality the spiritual realm;

You are LOVED, and everything is going to be alright.

Trust me.... You are gonna be all good. Love you and I love everyone here.

We are all ONE.

Also realize Miracles are real and Miracles happy everyday.

Everything happens for a reason; YOU will know what to do brother.

Love you and I am always with you <3




(On a side note my brother had Chrohns Disease and had many flare ups over 3 years before finally getting his small or large intestine resected and then re attached) its been a few years since that surgery and he has completely recovered. He only now takes Humaira as a precautionary measure)
 
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Also Foreigner If i were you,

I would go all eastern bro Ayurvedic, holistic, medicine that has been around for THOUSANDS of years longer than western medicine...

Western Medicine - few hundred years old

Eastern Medicine- Thousands of years old

Since we are obviously ALL one and Im a healer I will attempt to heal you fully from long distance.(I'll do the best I can)

Love you and hope you feel better...

Just realize you are the AWARENESS experiencing everything; you are not the mind nor the body.

YOU know who YOU really are......
 
I just checked back to see if you'd updated before I head to bed. Thank you for the update!

I'll write a better reply tomorrow (well, technically later today as it's 4:01am as I write this), but wanted to send you my Positive Energy and wishes for your body, mind, heart, and Soul to be soothed, eased, calmed, and restored from weariness before I go to sleep.

I'm so happy - and touched! - to hear that you've got people helping you out, even a little bit of help must feel like such a welcomed relief while it's there! It's lovely that you've got caring and compassionate people around :)

About your fundraiser: Is it GoFundMe online that they're doing, or something else? If so, are you allowed to post the link? If it's not GoFundMe, maybe check them out. Couldn't hurt :)

From a favorite prayer or meditation of mine:

May you be happy. May you be well. May you be peaceful. May you be liberated.

Peace.
 
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Hey Foreigner-

You said," Because of this, I've had no help in my home while being bedridden. The government claims that this is part of community planning to encourage people to work together more,but as usual it's just a conservative load of crap to justify social spending cuts."

Ugh. Are you fucking KIDDING ME, I hope???? "Community planning to encourage people to work together more"???? That makes me sick. What a transparent load of bullshit....like they're not even TRYING to convince you...I'm so sorry. Unless you have insurance or are filthy rich (which, if you're filthy rich, you have insurance) in America, you're pretty fucked, too, if you happen to get more than.a cold or something common and mild. Yeah, there are sliding scale clinics, and I'm sure there are a *few* gems (dr's) hidden in a few clinics, but that's a needle in a haystack...mostly you'll get a new doctor and/or a really shitty one, whose ego will tell you "it's in your head" or "it's only xyz" instead of,"I am outside of my expertise here...let me refer you to a specialist." The few referrals you'll get ....you can't afford, anyway, as specialists don't seem to often perform charity work!

I don't have the same exact health issues as you do. But I do have LOTS of them, and they're all unusual or advanced for my age, pr difficult to diagnose. I question one of my.diagnosis, and from tons of research feel I may have a different condition...if I can get up the cash I'll try for confirmational testing. If I'm correct, my prognosis isn't so good...and I already more than likely have a wheelchair in my future with another inherited condition. And I'm in a lot of pain. A. Lot.

Not trying to selfishly ramble on about myself....just trying to identify with you, let you understand that if ever you need or want to talk/cry/vent/get angry, I'm here, and am capable of "getting it".

I, too, face surgery as an option one day for my spine...but given the risks and the fact that it's not even a "success" statistically, not enough to reassure or convince me, I too am not really considering it as a good option. Maybe when I'm worse I'll change my mind. I do know I'll either never have it, or will wait until I literally cannot walk anymore, and it's my only option...and even then, I may refuse it. I watched my Mother go through it. Not really sure it was worth it...her pain and mobility aren't better. They're worse. Regardless.

I hope you'll be able to test for nutritional deficiencies so you can take measures to correct them. I'm telling you, GET A NUTRIBULLET or something similar. Digestion and thus absorption of nutrients begins with chewing. Better chewed = more surface area, = more easily absorbed in the gut, as it's got waaaay less work to do of the food is already very broken up. Almost liquifying it in a Nutribullet will absolutely help. A blender or food processor is better than nothing. Might be able to find a gently used NB online, too. I have one. I love it.

About B-12 shots...good for you. Just be aware that too many shots (consecutive days) made my anxiety SHOOT through the roof lol. Maybe space em better than me if this happens to you. It doesn't happen to everyone. I think it's because my body has a hard time handling excess energy.

If you have an online fundraiser, and cannot link it here (dunno if rules permit??), please pm me your email address or ask for mine.

I so hope your day is a good one my dear. Be kind to yourself. Love yourself. I spent too many years HATING my.body and myself for being weak and unhealthy....I realized I'd NEVER be so cruel to anyone ELSE suffering...why to myself? It was feelings of worthlessness, in this rat race world. Now I see differently. I'm valuable and so are you.

Please...if you need some love and help eith taking a positive outlook while feeling so limited and not at "full capacity", don't hesitate to pm me. It took me so long to adjust my thinking, it was an incredibly lonely and sad experience. I wouldn't wish those twisting and painful questions of worth, value, and the meaning of life while debilitated by pain on ANYONE. Anyone. You're not alone, you have much to contribute still...perhaps even a future of Advocacy for others who are ill and marginalized. Sometimes, we think we're no longer useful, when in fact, we are just beginning on a new journey...to help change the world. One person at a time.

Wishing you PEACE and comfort.

<3

Edit: Have you looked into directly contacting the drug company about the therapy that was helping you? Sometimes if you cannot afford the drug/insurance won't cover it, they can help you. I know people who've gotten help this way. Good luck.
 
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I don't have anything useful to add, other than well-wishes.
I hope things work out for you and you can get the treatment you need. I'd hate to see anything happen to you, you are a good person <3

It's a shame they put money before saving or improving lives. That is not the way things should be.

Sounds like in Canada they let people suffer and/or die to cut costs and in the USA people suffer and die because they can't afford to see a doctor, they are concerned with maximizing profits. Obama Care only helps those who can afford insurance, there are tens of millions who aren't covered. I'm one of those but think I'll be able to afford health insurance under Obamacare before long, so I won't have to worry about what happens if I get sick and can't pay to see a doctor.
 
An update would be nice if your feeling up too it Foreigner. I hope your body and mind are healing!
 
Foreigner,
I am Canadian, have severe crohns, am on remicade, and have gone through the surgery. It's not as bad as you think it will be.
Granted yes they should be letting you try the remicade a good 6 months before permanent surgery, but remicade is not usually the panacea you have built up in your mind either. It's a pain in the ass. Infusions all the time, always catching everything, since you're paying $4500 every 7-8 weeks to have no immune system. Etc.
Having IBD sucks large and there are no easy answers. I was told at 20 that my disease was so extensive I would definitely need a colostomy at some point. I sobbed in the gastro's office- not something any 20 yo wants to hear.
But hey, colostomies have benefits, too! Here's a few:

- decreased risk of colon cancer (and with IBD you're at increased risk)
- lots of shoppers points from the $ spent on pouches
- you can poop anywhere! No waiting in long lines.. Or leaving your seat at the movies.
- you can even poop standing up or in your sleep! Big timesaver!
- no dealing with disgusting public bathrooms
- colonoscopy prep??? Montezuma's revenge? Horrible food poisoning? No problem! Saves countless trips to the bathroom and a sore bum
- cost savings from toilet paper!!
 
My plan would be for the remicade to be temporary. Fact is, they never gave it a chance.

About the colostomy... what happens if the stoma gets infected? Post-op complications? If I have Crohns as well, how will I feel when I get another IBD attack further up my GI after getting the ostomy "cure"? How do I go swimming, a passion of mine? Having sex? Traveling and living in foreign countries, something I do?

I don't want to be reliant on ostomy bags and the medical system the rest of my life. If I can live well with this condition then I plan to stay as far away from modern medicine as possible. After my experience I don't trust doctors. They are lazy, arrogant, and ignorant.

Bliss26 said:
Foreigner,
I am Canadian, have severe crohns, am on remicade, and have gone through the surgery. It's not as bad as you think it will be.
Granted yes they should be letting you try the remicade a good 6 months before permanent surgery, but remicade is not usually the panacea you have built up in your mind either. It's a pain in the ass. Infusions all the time, always catching everything, since you're paying $4500 every 7-8 weeks to have no immune system. Etc.
Having IBD sucks large and there are no easy answers. I was told at 20 that my disease was so extensive I would definitely need a colostomy at some point. I sobbed in the gastro's office- not something any 20 yo wants to hear.
But hey, colostomies have benefits, too! Here's a few:

- decreased risk of colon cancer (and with IBD you're at increased risk)
- lots of shoppers points from the $ spent on pouches
- you can poop anywhere! No waiting in long lines.. Or leaving your seat at the movies.
- you can even poop standing up or in your sleep! Big timesaver!
- no dealing with disgusting public bathrooms
- colonoscopy prep??? Montezuma's revenge? Horrible food poisoning? No problem! Saves countless trips to the bathroom and a sore bum
- cost savings from toilet paper!!
Click to expand...
 
You can definitely swim, have sex, or do anything you want. The pouches adhere well so there are no limitations.
On traveling , just bring supplies with you. If your stoma doesn't retract, you'll only need to change it about once a week
I've never heard of a stoma infection, though you CAN GET A RSH NEAR THE STOMA AND YNDER THE APPLIANCE. There are creams and mess and powder to help.
When u are flaring badly it is possible that with crohns your disease can show up elsewhere like in your mouth or esophagus. If you have crohns colotis it's rare but not impossible for the disease to return in your ileum. That was one of my main concerns too. It really hasn't been a problem except in the mouth and throat which was a problem prior anyway .
If you actually have colitis and not crohns , it's cured w surgery and does not relocate. If you get disease relocation it was never colitis at all but crohns.
 
Funny thing, my youngest was 1 when I had the surgery so he thought it was what all ladies had. Lol
 
Holy fuck man. I knew things were bad Foreigner but I had no idea it was like this for you. I'm sorry to hear how much you're going through. I hope you can hang in there. I've always known you to have a very mature attitude towards life and death and if anything, I think that gives you an edge in survival over a lot of people in your position.

I hope you recover and you're in my thoughts. I'm angry as hell at the pharmaceutical and financial institutions in the world that have the power to prevent this shit from happening but continue to opt not to.
 
Bliss26 said:
Funny thing, my youngest was 1 when I had the surgery so he thought it was what all ladies had. Lol
Click to expand...

Awww :)

You have a great attitude. I have lots of health troubles myself, so I truly can and do appreciate your positive attitude.

Rock on! :)

Peace.
 
Hey man. I have Ulcerative Colitis myself. I'm nowhere near as severe as you, and have no idea what the laws in Canada are, but have you looked into cannabis? Currently I'm on Lialda, imuran, take vitamin b12 along with magnesium supplements, and smoke about 0.5 grams of marijuanna daily. I'm in complete remisson after going through the hospital multiple times being pumped with steroids and all kinds of nasty things. Marijuannas been a life saver for me. I hadn't even smoked before learning about the benefits from a friend, but it basically THC binds to the cannabinoid recepters in the colon and brings down inflammation, brings back your appetite, and has worked wonders for me managing the pain in the past. Just a thought. Good luck!
 
Kobe said:
Hey man. I have Ulcerative Colitis myself. I'm nowhere near as severe as you, and have no idea what the laws in Canada are, but have you looked into cannabis? Currently I'm on Lialda, imuran, take vitamin b12 along with magnesium supplements, and smoke about 0.5 grams of marijuanna daily. I'm in complete remisson after going through the hospital multiple times being pumped with steroids and all kinds of nasty things. Marijuannas been a life saver for me. I hadn't even smoked before learning about the benefits from a friend, but it basically THC binds to the cannabinoid recepters in the colon and brings down inflammation, brings back your appetite, and has worked wonders for me managing the pain in the past. Just a thought. Good luck!
Click to expand...

Anti-inflammatories seem to cause problems long-term, and I've tried all kinds of cannabis products for this. I'm a legal member of a longstanding medical club here, so I get access to all kinds of things. I honestly can't handle being high right now, it exhausts me. Cannabis has always had a stimulant effect on me, even small amounts, or products like CBD oil which aren't supposed to get you high. Recently I tried fresh pressed cannabis leaf juice... and it made me sky high. But anyway, back to the thing about anti-inflammatories. It seems like when inflammation is suppressed, my flare comes back way, way worse later on. It's like once the local immune system is suppressed, whatever glut flora imbalance or infection is there takes over because it has nothing to worry about. So I need to be careful.

Home made water and milk kefir, home made sauerkraut, and other ferments seem to be helping me. Still pretty debilitated but there is improvement. Fingers crossed.

Bliss26 said:
You can definitely swim, have sex, or do anything you want. The pouches adhere well so there are no limitations.
On traveling , just bring supplies with you. If your stoma doesn't retract, you'll only need to change it about once a week
I've never heard of a stoma infection, though you CAN GET A RSH NEAR THE STOMA AND YNDER THE APPLIANCE. There are creams and mess and powder to help.
When u are flaring badly it is possible that with crohns your disease can show up elsewhere like in your mouth or esophagus. If you have crohns colotis it's rare but not impossible for the disease to return in your ileum. That was one of my main concerns too. It really hasn't been a problem except in the mouth and throat which was a problem prior anyway .
If you actually have colitis and not crohns , it's cured w surgery and does not relocate. If you get disease relocation it was never colitis at all but crohns.
Click to expand...

I appreciate your choice, I just don't think it's indicated here. Some people take many months, or even more than a year, to recover from flares, especially their first flare. Aside from being weak, I don't have any physical complications which indicate surgery. No fistulas, no stenosis, no toxic megacolon, no risk of perforation. I'm just really weak from being underweight. The doctors' proclivity for surgery is really misplaced, and disturbing. They should not be pressuring patients to have it when they might get better with other means. Every day I had surgeons coming to harass me to get a colectomy -- every. single. day... and while I was sky high on morphine, in an altered state. It was unethical and traumatic.

Pharmaceuticals are bad for me and make me worse. Even prednisone has not done a whole lot. They put me on piperacillin-tazobactam IV in the hospital combined with flagyl (metronidazole), both of which obliterated my gut flora and didn't fix the problem. They gave me remicade but inconsistently, then took it away once their shitty anti-microbials caused diarrhea and they presumed the remicade protocol wasn't working. I mean, hello?... you give someone that much abx, and of course they're going to get diarrhea.

Based on the inflammation patterns I'm experiencing this is crohns-colitis, and I will continue to refuse surgery.

I just hope I can recover sooner than later. It's really emotionally painful for me to not be able to work, to be missing out on summer, to watch the world go by and see all my friends progress with their lives in new and interesting ways. My life was changing for the better back in Feb... a lot was looking up. It feels ripped away from me now. But I need to let that go and just focus on getting better. Life will return. I am just a bit impatient, and sad in the mean time. I wish this hadn't happened to me.
 
^I wish it hadn't happened to you, too. Because my husband has been close to death due to illness at least twice in the last four years (and this while still trying to cope with our son's death) I have had a ringside seat to what that does to the mind. One thing that we both have experienced when the threat of immenent death has passed is an almost unbelievable psychic cleansing--an appreciation for each other, for life itself in the most minute ways, that was previously lost in angst and simple physical pain. Are you experiencing that re-setting of the mind? If so, I encourage you to take the gifts it has to offer and build on them. The awareness doesn't last forever but you can learn a lot from it while its there.<3
 
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