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Crohn's Disease Forum » Your Story » I almost killed myself


03-12-2016, 02:37 AM   #1
everthin
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I almost killed myself

I have so many symptoms, I have a running google doc that is 80 pages long that I only started two years ago.
In learning to heal the gut, I have done quite a bit of recollection, on diet, family who have gut problems (won't admit it), and all my own gut nuances along the way. I still have worse days but 2015 was like heaven compared to 2014.
I've had itching and pain under my right ribs 1-2 hours after eating (not always, well the under the rib is always), symptoms vary, since 2010, things became worse as I tried to improve diet, having no idea. Then these jerks at the UW GI clinics took their time (two years) to talk me out of my perfectly healthy GB, that's when I went from ok this really hurts, to crying like a baby every day, no longer being able to sleep through the night, I went all the way down to 122 lbs. doing these different diets, I missed quite a bit of work for awhile.

I would go to the hospital and just sit in the ER day after day, after day, the health care system alienated me, told me it was all in my head, taking a pain pill just makes it worse. They gave me a colonoscopy, well the kids at the UW Madison teaching hospital did.

One of my main symptoms is time of day, between anywhere 11:00AM through 8-10PM I get pain under the right ribs, this pain can get into my joints, right hip right arm, when I'm gassy, oh I know that too, the bottom of my feet get itchy to let me know. I can take a super hot epsom salt bath to decrease inflammation for some relief and I do every single day, although the bath hurts, having the chest submerged hurts too, after can be better.

Last year I got into just taking my meals and throwing them into the vitamix and going more towards a liquid diet. I'm doing brasco broth but for some reason my liver or URQ aread does not like brown stuff, not even some teas. I make soups, everything from scratch, organics, I don't buy meat at the store, I carefully source that through private farmers. And, I became a gardener, it feels good to just go hang out at the garden and work outside.

All I know is I'm better than I was for all of 2014, but many foods I cannot have, if I have even a quarter of an apple I may as well just be sticking an air hose down my throat.

I'm not even sickly looking, people hate me for this, I'm thin, nearly 50, look like I'm 30, active, not very social anymore, won't go out to eat, won't travel, ignoring my family now, I had a girlfriend but she was just trouble and stress for me, finally met some people through FB who are sick too, and at least we get each other. And, I live in WISCONSIN where most people are either fat n happy or they drink and smoke. Yes, the summers are better than the winters for pain. It's just that the pain is horrible most every single day, I had a couple good days this week then got into this coconut buckwheat bread that I make I'll never make that again, guess I'm stuck with the almond bread which is fine as I'm tired of eating things that hurt.

Everyone seems to think this is related to fungus so I chase this low carb no grains paleo diet and take anti-fungals. Digging through Rubins book now, but now I can't digest fats very well. I hope to find some help in this forum, thank you all for having me. I have a coworker who was diagnosed, he's finally missing work all the time just like I did in 2014 but he hasn't changed his diet one iota from what I've seen, nothing I can say or do, people actually believe in the health care system, they made my health worse, I'm hesitant to go back, after my colonoscopy I had worse symptoms!

I'm able to sleep at night, I put a heat pad on my chest and that really helps, if things get bad I go back to the hot and cold bucket of water and do compresses to get to sleep at night.
03-12-2016, 08:07 AM   #2
ronroush7
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Hi. Welcome. I am glad this last year was better for you. You have a lot of zuppoe in this forum. I am sorry for all you are going through. What is your doctor saying?
03-12-2016, 08:48 PM   #3
everthin
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Thanks Ron, I spend all my time on this, and now it's time to research Crohns to no end.
Doctor? Well, the first thing I did when I changed insurance plans this year was to go to the ER to get that into my record that I'm suffering and in pain, again they send me kids, then the same day I went to the other version of the ER called the urgent care clinic where I suggested that besides the regular tests which find nothing do an iron panel which showed I'm anemic, so wow they finally found something wrong with me at my request. I had a follow up with my regular doctors physicians assistant, told me my sickness was in my head, that guy was a real ass, then finally had an appointment with the "real" doctor who said I'll see you in two months and see if your iron is up, that's it. No acknowledgement by anyone of all my symptoms. So, 4 appointments and nothing, I have a follow up with this really nice doctor again April 23rd but I think I'm just wasting time here, our health care system is no longer health care, these guys are just walking around with medical license to kill. I'm in self treatment, it's my only choice. LDN, soft foods, brasco broth, Nystatin, today I picked up more astragalus tincture, some boswelia capsules, olive tincture, something called intestinal calmpound tincture which has about 6 different herbs in it, and some Vallerian tincture.
03-12-2016, 09:10 PM   #4
ronroush7
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I meant you have support in this forum. At the same time, I don't think self treatment is the right thing to do.
03-13-2016, 01:02 AM   #5
Jennifer
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Hi everthin and welcome to the forum!

I've been to teaching hospitals as well many times but I never had a bad experience. They do have professors higher up that they answer to and who make sure that you're getting the treatment you need. There are many doctors out there who are worth seeing and are willing to work with you even if you prefer to not take more mainstream medication. They can run tests for you to make sure that you're doing ok and at least screen for colon cancer which IBD patients are more at risk of getting. I hope you can find a GI that you get along with well and who's willing to work with you.

A lot of times we do have to do a lot of research ourselves so we can request certain tests and treatment just like you had to do with the blood work. At first it can be frustrating but in a way it's good because then you learn a lot more about your own illness and how to treat it. It's also good to stay up to date with the newest treatments available so you can find what works best for you sooner rather than failing many treatments for months to years until your doctor finally suggests trying something that was approved recently. Many members share the latest research and news here: http://www.crohnsforum.com/forumdisplay.php?f=29

I'm sorry I'm not quite clear, were you diagnosed with Crohn's or are you still undiagnosed? What did they find when they did the colonoscopy?

We have a section on the forum for LDN here: http://www.crohnsforum.com/forumdisplay.php?f=32 Which of your doctors prescribed LDN for you?

I'm curious about your thread title. I was concerned when reading it but there's no mention of it in your post. Is there anything I can help with?
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-13-2016, 02:52 AM   #6
everthin
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Kids gave me my colonoscopy at a teaching hospital, it was a rushed procedure, I was awake during the whole thing. They found white stuff near the end and that's it. Then this other idiot who gave me my endoscopy, I wake up from the procedure and he's yelling at me to have my gallbladder removed. I'm like out of it or else I would have said wtf does this have to do with my gb.. I have been told by people like Lisa Bain that poor doctoring misses this even more than the 30% estimated that it is missed.
I used to call her up crying.. She was so supportive. She gave me hope, got me to promise to hold on..

The G.I. doctors I had misdiagnosed me i.e. GET YOUR GALLBLADDER REMOVED! OOOPS THAT WASN'T IT!, OH NOW YOU HAVE WAY MORE PAIN!, SO WHAT, IT MUST ALL BE IN YOUR HEAD, NOW GO AWAY!

People don't seem to get what happened to me, the discussions with patient relations, the things they said to me, and what I had to live through as a consequence, and now my chances of colon cancer are another 5-10% due to losing my gallbladder. I missed a ton of work in 2014, spent over $10,000 last year in private medical expenses, massage accupuncture, supplements, alternative doctors.

I am undiagnosed, I am alienated by the health care system. I am not a good advocate for myself, I trust people and as you know the health care system is for profit, they want me to be sick, obviously .. when they made my condition worse, I no longer trust them.

I ordered my own naltrexone through the power of the internet, just like my own Nystatin. I self diagnosed myself by looking at image studies and wondering what all the white stuff is up and down my esophageal and in my stomach, on my tongue.

When you have pain from your throat all the way down to your anus something is definitely up. Believe me, I was concerned too, when I went from somewhat normal bowel movements to bleeding, cramping, bloating, constipation, bleeding fissures, blood in general, more joint pain, total diarrhea, it's a miracle that I made it through 2014. I'm glad I self-treated, and turned away from the traditional American food industry (can't eat outside my own home anymore anyways now), got into bone broth, gardening, herbal teas, anti-fungals, 100% organic, etc. I just spent another $85 today on tinctures, Boswellia, Vallerian, Olive, Astragalus, and something called intestinal calmpound that has some 6 different herbs in it.

At this point in time, I'm actually glad they alienated me, at any given time in 2014 if they had told me, lets cut this here out next and you'll feel better I would have let them cut anything else out they wanted.

Sure can you help with this? Do they have a thread out here on how to get a doctor to listen to his patients symptoms or to take a patient seriously? I have a ten page document I'm about to send to his office as my symptoms don't fit into a 15 minute doctors visit which is all we get where I live.
03-13-2016, 08:46 PM   #7
everthin
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Assuming no one believe me, some questioned if I had enough weight on my body to go through with the operation but it's an old boys club they make money off cutting, and just pump em full of antibiotics they'll make it..

SPECIMEN DESCRIPTION:
The specimen, labeled gallbladder, received intact is 8.5 x 3.5 cm with
a wall 0.1 cm thick. The serosa is smooth, gray. The lumen contains
green bile and is lined by hyperemic tan mucosa. No stones are seen.
Sections submitted in one cassette.
DWF/kay

FINAL DIAGNOSIS:
GALLBLADDER, CHOLECYSTECTOMY: GALLBLADDER WITHOUT SPECIFIC PATHOLOGIC
FEATURES. INFLAMMATION AND STONES ARE NOT PRESENT.
CODE:2
DWS/kwm

Dennis W Stone MD Electronic Signature 12/31/2013 1:29PM

General Information
Collected:
12/30/2013 2:00 PM
Resulted:
12/31/2013 1:29 PM
Ordered By:
Jacob A Greenberg, MD
Result Status:
Final result
This test result has been released by an automatic process.
04-14-2016, 10:51 AM   #8
everthin
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Location: Madison, Wisconsin
Went to see a young G.I. doctor this morning, all ego, knows it all, showed him my genova test, hair tests showing poor absorption, described my diet, all anti-inflammatory, he suggested I'm eating to many vegetables, rebuffed all my symptoms, told me it was all in my head, suggested nutritional and mental therapy. The guy was an asshole, some #&_:@ prick, said fungal problems are only acute, and that intestinal permeability does not really exist either. Defended the removal of a healthy organ from my body, I could tell he's joined the old boys club already, it was all about how fast he could get himself in and out of the room.

Last edited by Lisa; 04-14-2016 at 07:36 PM. Reason: Admin edit
04-14-2016, 10:59 AM   #9
ronroush7
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I am sorry you got that kind of reaction

04-14-2016, 11:04 AM   #10
everthin
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He could see that I'd been alienated previously so is just doing what the others did, he knows they got away with treating me like shit so he figures he can do that too. Since they won't do anything for me anyways I'll just go through the formal process of filling out complaints to the administration, I think this time I'll go the extra mile and take it to the governmental level, I think OCI, and some other avenues, which does no good either, health care is a monopoly, collectively along with the pharmaceutical corporations they have the FDA and CDC in their back pockets.
04-14-2016, 11:59 AM   #11
Beach
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Ugh! It can be so frustrating dealing with the medical system at times. Every once in awhile I'd run across someone that I found helpful and considerate. Most of the time though most seemed to simply be asleep and going through the motions. I'm another difficult case I suppose in that traditional GI help didn't improve my situation. I was pretty much left to my own after that, told that was the case by a few doctors, and with a stomach that never quite aching.

Hope you find something that helps out in the future with helping further your stomach issues. It isn't stomach related but of late I've been reading Stanley Milgram's book, Obedience to Authority. Lovely book, and explains some of what I've experienced and witnessed. You might get a kick out of it also.
04-14-2016, 07:48 PM   #12
Nicky Furlano
 
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I once went to the emergency room at Markham Stouffville hospital and they told me they'd never heard of crohn's disease. The G.I I went to there was even worst. I nearly died and finally got a new G.I. in Scarborough and he immediately scheduled me for surgery at Rouge Valley hospital.

04-14-2016, 10:23 PM   #13
everthin
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Thank god your ok and you found a competent doctor, some are not so lucky. On March 23rd, just a few weeks back my step fathers wife of 21 years went in for a routine colonoscopy, nicest person you would ever meet, 64 years old, perfect health, just retired two years ago, expert gardener and food preserver, lover of dogs, lover of all people, smiling, loving person.

She came out of it in lots of pain, went to bed that night, did not wake up the next morning. Word has it internal bleeding, I do not know the whole story yet, afraid to ask because it will just upset me.
04-14-2016, 10:24 PM   #14
ronroush7
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