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04-13-2015, 01:35 PM   #1
queenmeeny
 
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Join Date: Apr 2015
Location: Boise, Idaho
My rope endeth...

First time poster, ok if you tl;dr I'm venting and I just want to send it to the universe...

I'm a 37 year-old woman at the end of my rope. Here's my story:

I've always been "unhealthy." As a baby I got chronic earaches and I was hospitalized at four for Scarlet Fever. My childhood was pretty messed up and (adopted in secret until I accidentally found out at age 14, divorce, drug, alcohol and sexual abuse) I came out the other side with severe emotional problems. I was diagnosed as "manic depressive" at 16 and put on anti-depressants.

My stomach issues started a little before that. Excruciatingly painful gas after lunch period that would have me pale and sweating, and caused concern with the teachers. I missed a lot of school. My adoptive mother didn't really seem to take issue with it, her only concern being that I was too fat. She put me on a crash diet (coffee and cigarettes, but she was a little mad I refused the cigarettes) that put me into a mildly anorexic state by the time I graduated. The good thing was, if I didn't eat ANYTHING I didn't get as sick at school.

I left home right after graduation and got married at age 20. About three months after my wedding I stopped trying to be my mother's ideal and started to eat normally, and at six months we started trying for a family.

I gained about 50 lbs rapid fire, but I was so happy I didn't care at all. Unfortunately I started to get the gas again, along with the dreaded D. The diarrhea was so ridiculous we joked I might as well just eat on the toilet. The pain wasn't super intense until a few months after that, and then there was no more joking.

I started to get migraines anytime I had to evacuate. Terrible migraines that would give me tunnel vision, confusion, shaking, sweating and occasionally loss of consciousness. The headache would then last two or three more days. Along with my fertility doctor I started seeing a neurologist who told me I had early signs of Multiple Sclerosis (abnormal lesions on MRI). I also ended up being infertile. We tried IVF once after extensive testing but after that we were tapped out.

My stomach issues intensified and my GP referred me for an ultrasound which seemed to show an inflamed gall bladder and an enlarged spleen. With all of the issues I was having my GP also asked that the surgeon take a look around while I was having the gallbladder removed. I went to an outpatient surgery mill (this was before Yelp and WebMD. If I knew then what I know now I would have never had my gallbladder out with so little evidence it was necessary), and met with the surgeon who was extremely rude and refused to sign a work release form to allow me three days off after the surgery because in his opinion "it is not invasive surgery and you should be back to work the next day." I ended up having complications and had to stay out of work two weeks (unpaid because he wouldn't sign). I ripped open my stitches so many times vomiting that I have really awesome scars now. Also when my husband asked the surgeon if everything else looked OK (since he'd said he would take a look around for what could be causing the issues) the surgeon said he hadn't had time to do anymore than pull out the gallbladder, which was normal (no blockages/stones).

As you can imagine, things did not get better, but worse. Without a gallbladder now I could digest NOTHING. I went to several GIs and they did an upper GI on me and determined I had an ulcer but refused to do a lower and gave me sample packs of an IBS medication new to the market which caused me to be so severely dehydrated from diarrhea that I was again hospitalized. And because I wasn't losing any weight (maybe because I ruined my metabolism by being anorexic, I'm not sure, but my body clamps onto every dang calorie), and my blood work was only slightly off (white count high, high Eppstein-Barr) the doctors weren't concerned it was serious. Having had my gallbladder out was also a problem, because at that point having diarrhea was normal for about 20% of people.

The depression and anxiety of having these issues in a new marriage was very real. I ended up attempting suicide and my husband placed me in a mental hospital for several weeks. I was put on five different anti-depressants, and three mg of Klonopin three times daily. I was a zombie. I became agoraphobic, I couldn't leave the house without my husband. My overwhelming guilt at having to quit my job caused me to self-isolate and my husband, saddened at the issues and under pressure by his parents to have a biological family, kicked me out after 9 years. I was so sick at the time I couldn't even leave bed, I contested nothing and received nothing. He took my house, my car and my dog. I had to move in with my adoptive mother, and get a part time job. I lost all insurance coverage and dropped all of my medications.

After two years of hell, I had a full time job and I moved out of my mother's house (the abuse didn't stop just because I was an adult, she quite often reminded me to kill myself whenever I was too down). I went back to the doctors and tried to get help again.

Here's the quirky thing, if you say you have a history of depression (or if your doctor has time to read your chart) and you have diarrhea issues, you just have a nervous tummy (IBS). It will go away when you are happy, right? NO DOCTOR, NOT RIGHT. The doctors flat refused to treat me for anything but depression, while reminding me that being sick after having a part taken out is my Karma for drinking soda.

Finally I got frustrated and demanded more blood tests and was told my immune system was jacked up so they sent me to a specialist who LAUGHED IN MY FACE and told me I was faking (the assisting nurse actually left the room she was so upset by the mistreatment and apologized later). The joke was on her though, turns out I had the anti-bodies for West Nile Virus (which had just hit our area that year).

Of course, West Nile is vomiting, diarrhea and fatigue so issue resolved for that doctor. I was too scared of her to remind her that her chart showed that this issue was ongoing since before the damn disease was discovered.

Let's skip forward to three years ago.

I'd started to think maybe it was just all in my head (until that mosquito feasted). Finally things settled down and I got back to work and was making good money, met a wonderful man and moved in with him. Happier in life than I'd ever, ever been.

BANG

Every single day, diarrhea, and now with a side of "pain-so-bad-you-vomit." I was blacking out on the toilet, bleeding out of both ends. My migraines were so bad I couldn't see. I started missing work and was informed I needed a doctors note. This was a chance for me to find a new doctor, and since things had advanced so much I was very hopeful.

I'm sorry did I say things advanced? Because the first doctor I saw (a very heavyset woman) walked into the exam room and SHE laughed. The first thing she said was "you aren't having a stroke."

Backstory: my biological sister died of an aneurysm two years before that appointment. Her neurologist advised us all at her bedside that we should be checked as they are often familial. I mentioned this to the nurse who checked me in, she said that loss of vision and confusion were signs of a stroke and she would make sure the doctor knew.

Without even looking at me or touching me this doctor had the gall (ha) to tell me I was being hysterical... when it wasn't even me who made the suggestion, I was just following what every site tells you and telling them everything. She advised me my blood pressure was very high causing my headaches (again this was all from chart she asked me no questions, and did not examine me) and I needed to lose 20% of my body weight before I came back and then we could get down to business (At the time I weighed 200lbs). She put me on a high dose of beta blockers and omeprazole and set a follow up for six months.

I'm not an idiot, I realized immediately that this wasn't health care, and I started to research the office, which literally closed for malpractice three weeks later due to the primary physician (different from who I'd seen) misdiagnosing a broken ankle as an overweight stress injury and sent the man home with an order to lose 20% of his body weight.

So we laughed it off and found a new doctor. This lady came highly recommended, and she at first seemed very concerned about what I was going through. I tried to explain that the anxiety/depression cycle was started by being sick, but she again chose to focus on my mental issues, because that was the most likely cause of my nervous tummy, which she stated was IBS (without the benefits of any tests other than blood work). She also highlighted the fact that since my blood tests were only a little abnormal, and I wasn't losing mass amounts of weight, whatever was going on wasn't serious, I wasn't in any sort of danger, it was just unfortunate and embarrassing to have diarrhea constantly and pass out in the stall at work.

She did help me to get FMLA for three hours a week maximum to use the bathroom when I was scheduled at work or to handle anxiety attacks (caused usually by being up all night on the toilet). I finally had to leave my job 12/2014. Everyone told me to wait and get fired so I could get unemployment, but I couldn't do that to my employer. After having a flare that caused me to be bathroom bound for several days I called my boss and let him know I couldn't return. I lost insurance coverage, and with my income loss (I was the breadwinner) we can't afford to get Obamacare. I'm still waiting to hear back on financial assistance for insurance, my food stamps were denied because my boyfriend makes $10/hr and we only have part-time custody of his son, and I refused to lie on the application.

I'm back to being housebound, the thought of leaving the house and being away from my toilet/bucket/bed gives me instant panic that I don't have the emotional tools to control. I don't know if you guys are versed in "manic depression" but it has been reclassified bi-polar disorder and runs through my biological family. I have a tendency when overwhelmed with the typical guilt feelings of a chronic sufferer to self-harm (I don't cut).

I became desperate in January and emailed my doctor's office and letting them know how bad things had gotten, and that I needed to have a referral to a GI immediately. I was told to go to the ER, that they wouldn't refer me even though I had documented evidence of a medical necessity to see one, they STILL felt I was exaggerating. I'd already filed medical bankruptcy, we couldn't afford the ER and I pretended to feel better so my boyfriend would stop trying to make me go.

Hoping that I'd just caught the answering nurse on a bad day, when I started to file my disability documentation in February I contacted the office and asked if there was anything in my history which would be considered derogatory (the claims rep will go through and check if you've done anything AMA or have an otherwise negative history that would cause them to believe you aren't sick). I was told that no further questions would be answered without an office visit, and was referred to a free clinic.

Currently I've been what I would consider (being that all the information I've been able to receive is from online, since a doctor won't even consider that it might not be all in my head) flaring for about a month. I've finally started to lose weight, which has been wonderful for me because it feels like I'm starting to look on the outside like I feel on the inside. It's rough to wish for weight loss not for the bikini season but just so people will know you are truly sick. I've lost the majority of my hair from malnutrition, my skin is so dry that I've literally scratched bloody furrows into my legs, and of course I'm exhausted.

I've been up pretty much every night around 2 am and on the toilet with a bucket in my hands for several hours. I've been eating mashed potatoes and scrambled eggs and drinking gallons of sprite because those are the only things that occasionally stay down (I know I shouldn't have processed sugar but I need to hydrate and water doesn't settle, I know, weird). The pain is so intense that I quite often worry that it is an aneurysm and I'm going to die on the toilet. I can't wear pants most days because the bloating is too painful.

The guilt of having whatever this is has become extreme. Not being able to go on a date or even eat the meals I prepare for my boyfriend is sad. I'm home alone all day, and since I self-isolate when I'm sick I've really got no one. My boyfriend is the sweetest man in the whole world, but he worries and very very often stresses out when I can't/won't eat. This causes arguments and crying and the aforementioned panic and self-harm. He tries everything to understand and be patient for me, but I imagine I can see him disconnecting from me like my ex-husband. He's a little younger than I am, and I feel like I'm wasting time for him because he'll end up leaving in a few years. Obviously those types of tangents aren't helping, but without any anti-depressants (which are all acids and kill my gut anyway) I can't control irrational thoughts.

I am at the end of my rope. Being constantly in pain without diagnoses is so tiring. I feel like there is a giant black pulsing mass of evil in my belly. Don't get me started on my time of the month either (you'd think I'd at least get a break since my stuff doesn't work right) I try every day to find new things to keep my attention off of my body and my alien intestines, but I've lost interest in most everything and sleep about 18 hours a day.

I'm sorry to word vomit, it's been a long week (I know it's only Monday). Thanks if you made it this far. Here's the payout:


IF YOU ARE IN PAIN I LOVE YOU
IF YOU NEED A SHOULDER I HAVE TWO
NO ONE SHOULD HAVE TO BE US - BUT I'M GLAD YOU'RE YOU

Thanks for being there.
04-13-2015, 07:41 PM   #2
24601
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Join Date: Dec 2013
Location: London, UK
I'm so sorry that you've been dealing with all these issues for so long and without help.

I know that this doesn't change things for you but it does seem to be a fairly common story to hear from those who have any history of abuse or mental illness that doctors will not pay any attention to their physical symptoms. It's pretty common in people who don't have those issues to get a version of the "it's all in your head" diagnosis - stress, depression, anorexia, attention seeking are all favorites.

It's no less shocking because of that though. And I'm constantly appalled that doctors dismiss physcial symptoms before looking for a cause and will happily jump to these non-diganoses instead of doing the proper tests. And I'm beyond appalled to know that you've had one doctor like this after another

I'm really sorry that you've had to go through so much - and are still going through so much.

I feel that I may only know a bit of what you've been through but I can relate on the frustration and loneliness of being so ill for so long. And feelings of guilt and inadequacy that cause their own issues and make everything harder.

Because I live in the UK I really don't understand the health insurance system in the US or have any advice for how to deal in your current situation - though I hope someone else here on the forum might be able to advise you.

Without access to a GI I would in your situation (and if you can afford it) try drinking a liquid diet exclusively for 6-8 weeks (or at least try for 4 weeks and see if this improves things). It's best if this is a complete nutrition drink like Boost or Ensure since it's important to give your body enough nutrition to heal.

If you were about to get scopes for a potential diagnoses then I wouldn't suggest that as it might affect the ability to diagnose but if you are entirely without help it's what I would do.

I know it may not be possible because of the cost of that too.

Really hoping that someone has a good idea of how to get your healthcare covered and for you to see a good GI who will listen to you and investigate your symptoms.

Sending positive healing vibes your way, fwiw.
04-13-2015, 09:06 PM   #3
Optimistic
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Join Date: Oct 2014

My Support Groups:
I thank you for taking the time to share your journey. I'm at a loss for words other than to say I am very sorry. You sound like a very brave, resourceful, and caring person. I pray that some really good things come your way fast.

I hope this weeks gets better. Hang in there.
04-13-2015, 10:35 PM   #4
Jennifer
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Welcome to the forum!

I'm very sorry to hear about everything you're going through and have been through. Tagging UnXmas.

In regards to your financial situation. When applying for health care, food stamps and cash aid did you mention that your boyfriend is just your roommate (not your boyfriend) who provides no assistance to you whatsoever? I had to do this when getting SSI but now all my payments have been screwed up since we got married.

This support group may also be beneficial: http://www.crohnsforum.com/showthread.php?t=51690

I'm very sorry you saw so many terrible doctors in the past. I really hope you'll find a good one in the near future along with health insurance so you can get the treatment you desperately need.
__________________
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.
04-14-2015, 10:41 AM   #5
queenmeeny
 
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Join Date: Apr 2015
Location: Boise, Idaho
I so appreciate all of the positive vibes, I swear to you I FEEL THEM IN MY BODY!

So much love to you all.

Regarding Boost, we've been trying alternatives due to the cost of it, but we're running out of options and it's looking like I'll be starting it this week.

Regarding the benefits application, I originally filled it out that I was living on his couch, but he felt bad and we changed it. He's a very proud boyfriend and would do anything in the world for me. I think if I can get up the nerve (funny you'd think after being in customer service for 21 years I could make a phone call but talking on the phone destroys me emotionally for days, gotta love my brain's wiring :-/) I'll call over to the local office and inquire about SNAP again.

Thanks again!

QM
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