Crohns, thanks for the laughs!

Disclaimer-don’t read this if your eating and if you are eating send me some right NOW! 

This is gonna sound crazy (I know your thinking like about every third thought that comes outta of her mouth?) but I’m actually kinda thankful for getting Crohns. Yup, go ahead leave me some comments I’m ready! 😝

Crohns has humbled me.  It has shown me  that I can persevere through some pretty gosh darn awful circumstances and still laugh. I’ll tell you what, you haven’t truly lived until you have your big white ass in the air with one guys (surgeons) hand literally submerged, a “fellow” (which is medical speak for a guy that can’t afford his own practice yet) pointing out scar tissue paths to your husband (like he hasn’t ever been down in that area 😉) and a couple of student docs peering into your “cavities”. Yes Sir 5 grown men all looking and touching my backside and not in a “Hey lets tape this and make some money on-line” kinda way.  I know your laughing right now, and so am I. AND I did then to, because if I hadn’t I think I actually could have cried myself to death. 

AND speaking of death, Crohns has brought me to the edge of that particular “ride” 2 times. AND what people say is so true, it really does put some stuff into perspective. 

Number 1-who cares how much money I have it’s all gonna go to medical bills anyway LOL  Money is no longer my barometer for sucess. Seriously Crohns has broke our wallet. 

Number 2-I’m STRONG, stronger than I ever thought I was. Don’t get me wrong just cause I’m strong doesn’t mean I turn down the good drugs! Which I’ve been cut off from FYI- never tell your doc you “NEED” your opioid prescription “NOW” that’s apparently trigger words for “possible pain medication abuser” which I’m not by the way. It only took me 2 months to “dry out”. I’m totally kidding! Or am I???😁

Number 3-I can keep my cool and act “normal” even when shit is rolling down my leg under my jeans cause after 4 surgeries that involve your sphincter muscles sometimes you just don’t feel IT till IT hits you mid thigh. 

Yup I’m strong, my families strong and my faith is strong.  What else could I ask for? 

  

Advertisements

“What’s an autoimmune disease anyway?”

So glad you asked 😉

So the technical definition first:

A disease in which the body’s immune system attacks healthy cells.

My definition:

So one day your cells are all chill and happy doing their respective jobs moving oxygen, making tissue and keeping their organelles all satisfied. Then out of the blue for reasons unknown (it truly is unknown lots of theories but no concrete “Here’s the reason” exists) a group of your cells see their long time neighbors and are like “Who are you jerks? You don’t belong here!” And the neighbors are like “WTF we’ve lived next to you for years Andre?” And Andre says “Your not Sheila your an imposter and must DIE!” AND then BOOM it’s on! 

Yup it’s a cell rumble in the jungle and the apartment building (that’s you and your jacked up body) are going down! 

See isn’t mine better 😜

  
Here’s a statistic that will blow you away-ready?

According to some really scientific study done in 2011 (I honestly can’t remember which one but it was totally legit-I promise)

1 in 12 women and 1 in 20 men will

develop an autoimmune disease in their lifetime.

SAY WHAT???????? 

There’s currently like a butt load of autoimmune and autoimmune related diseases recognized- LOOK!

Acute Disseminated Encephalomyelitis (ADEM)

Acute necrotizing hemorrhagic leukoencephalitis

Addison’s disease

Agammaglobulinemia

Alopecia areata

Amyloidosis

Ankylosing spondylitis

Anti-GBM/Anti-TBM nephritis

Antiphospholipid syndrome (APS)

Autoimmune angioedema

Autoimmune aplastic anemia

Autoimmune dysautonomia

Autoimmune hepatitis

Autoimmune hyperlipidemia

Autoimmune immunodeficiency

Autoimmune inner ear disease (AIED)

Autoimmune myocarditis

Autoimmune oophoritis

Autoimmune pancreatitis

Autoimmune retinopathy

Autoimmune thrombocytopenic purpura (ATP)

Autoimmune thyroid disease

Autoimmune urticaria

Axonal & neuronal neuropathies

Balo disease

Behcet’s disease

Bullous pemphigoid

Cardiomyopathy

Castleman disease

Celiac disease

Chagas disease

Chronic fatigue syndrome**

Chronic inflammatory demyelinating polyneuropathy (CIDP)

Chronic recurrent multifocal ostomyelitis (CRMO)

Churg-Strauss syndrome

Cicatricial pemphigoid/benign mucosal pemphigoid

Crohn’s disease 💩💩💩

Cogans syndrome

Cold agglutinin disease

Congenital heart block

Coxsackie myocarditis

CREST disease

Essential mixed cryoglobulinemia

Demyelinating neuropathies

Dermatitis herpetiformis

Dermatomyositis

Devic’s disease (neuromyelitis optica)

Discoid lupus

Dressler’s syndrome

Endometriosis

Eosinophilic esophagitis

Eosinophilic fasciitis

Erythema nodosum

Experimental allergic encephalomyelitis

Evans syndrome

Fibromyalgia** 

Fibrosing alveolitis

Giant cell arteritis (temporal arteritis)

Giant cell myocarditis

Glomerulonephritis

Goodpasture’s syndrome

Granulomatosis with Polyangiitis (GPA) (formerly called Wegener’s Granulomatosis)

Graves’ disease

Guillain-Barre syndrome

Hashimoto’s encephalitis

Hashimoto’s thyroiditis

Hemolytic anemia

Henoch-Schonlein purpura

Herpes gestationis

Hypogammaglobulinemia

Idiopathic thrombocytopenic purpura (ITP)

IgA nephropathy

IgG4-related sclerosing disease

Immunoregulatory lipoproteins

Inclusion body myositis

Interstitial cystitis

Juvenile arthritis

Juvenile diabetes (Type 1 diabetes)

Juvenile myositis

Kawasaki syndrome

Lambert-Eaton syndrome

Leukocytoclastic vasculitis

Lichen planus

Lichen sclerosus

Ligneous conjunctivitis

Linear IgA disease (LAD)

Lupus (SLE)

Lyme disease, chronic

Meniere’s disease

Microscopic polyangiitis

Mixed connective tissue disease (MCTD)

Mooren’s ulcer

Mucha-Habermann disease

Multiple sclerosis 👹👹👹

Myasthenia gravis

Myositis

Narcolepsy

Neuromyelitis optica (Devic’s)

Neutropenia

Ocular cicatricial pemphigoid

Optic neuritis

Palindromic rheumatism

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus)

Paraneoplastic cerebellar degeneration

Paroxysmal nocturnal hemoglobinuria (PNH)

Parry Romberg syndrome

Parsonnage-Turner syndrome

Pars planitis (peripheral uveitis)

Pemphigus

Peripheral neuropathy

Perivenous encephalomyelitis

Pernicious anemia

POEMS syndrome

Polyarteritis nodosa

Type I, II, & III autoimmune polyglandular syndromes

Polymyalgia rheumatica

Polymyositis

Postmyocardial infarction syndrome

Postpericardiotomy syndrome

Progesterone dermatitis

Primary biliary cirrhosis

Primary sclerosing cholangitis

Psoriasis

Psoriatic arthritis

Idiopathic pulmonary fibrosis

Pyoderma gangrenosum

Pure red cell aplasia

Raynauds phenomenon

Reactive Arthritis 💆

Reflex sympathetic dystrophy

Reiter’s syndrome

Relapsing polychondritis

Restless legs syndrome

Retroperitoneal fibrosis

Rheumatic fever

Rheumatoid arthritis

Sarcoidosis

Schmidt syndrome

Scleritis

Scleroderma

Sjogren’s syndrome

Sperm & testicular autoimmunity

Stiff person syndrome

Subacute bacterial endocarditis (SBE)

Susac’s syndrome

Sympathetic ophthalmia

Takayasu’s arteritis

Temporal arteritis/Giant cell arteritis

Thrombocytopenic purpura (TTP)

Tolosa-Hunt syndrome

Transverse myelitis

Type 1 diabetes

Ulcerative colitis

Undifferentiated connective tissue disease (UCTD)

Uveitis

Vasculitis

Vesiculobullous dermatosis

Vitiligo 

AND I apologize if I missed a few…
CRAZY-RIGHT?

Disclaimer-My true cells names were changed to Andre and Sheila to protect their identities. Like I would really publish their true names-this is the Internet!!!

History finale – woohoo

So everything was going well, I felt great and finally had been able to kick the prednisone to the curb after being on and off of it for 2 years. I was thrilled because anyone who’s been on the PRED for an extended period of time can tell you it’s a miracle drug and a curse rolled into one little pill. 

Right before Thanksgiving last year I started feeling crappy, dry hacking cough, body aches and just overall gross. Went and saw my wonderful PCP, got a breathing treatment and scrip for an antibiotic and went on my way. By mid December I wasn’t getting any better in fact I was getting a lot worse. Shortness of breath, coughing like I’ve never coughed before and severely congested. Went back to the doc and got a nice big shot in the rear after a chest x-Ray revealed I had pneumonia.  Started another heavy duty antibiotic STILL didn’t get any better. Talked to my PCP who told me to get my butt to the ER, I said NO WAY!  It was Christmas time I had a ton of stuff going on and lots of mom duties for the school blah blah blah. Saw the GI doc for a follow up during this same time who also told me to go to the ER, again I said nope. I’m STUPID! Really really hard headed and I never learn. 

Christmas Day, made it thru presents and feeding  everyone lunch then BAM an elephant sat on my chest. That damn elephant made another hasty trip to the ER necessary. 

5 days hospitalized -yuck! Thank God for my wonderful husband, son, mom, and in-laws! I’m blessed!

While in the hospital it was determined after OMG so many blood tests it was unreal. ( I have been tested for every virus, parasite and fungus known to man) BECAUSE the lung infiltrates from the Pneumonia were not going away. After being treated with boatloads of IV antibiotics, see since being diagnosed with Crohns I had been taking Immuran which is a immunosuppressant drug so it totally knocked out my immune system. THUS the pneumonia BUT the antibiotics still should have knocked it out. 

SO, a theory is I have developed Crohn’s in my lungs. WHO KNEW? Apparently it’s very rare but does happen. SO yes finally, that is one reason for Mayo the other I can’t take the gold standard for Crohns which is the wonder drug Humira. You know that drug that you see umpteen million commercials for, I can’t take it. Because 1 the cancer history, Humira can cause more cancer and 2 it apparently can make the MS worse. 😢 SO the hope is the brilliant docs at Mayo can figure it out! 

There you have it COMPLICATED. 

I’m apparently a good candidate for stem cell therapy and that’s my prayer but HOLY MOLY its expensive and only has about a 30% chance of working. My prayer is that there is some kind of miracle drug in trials that I can be a Guinea Pig for, fingers crossed! BUT one things for sure I can’t stay on 40 mg of Predinose for the rest of  my life, my face looks like a puffy pink pillow. AND I’m FAT I mean more FAT than normal. AND I’m vain! in another post I’ll give examples of the horrible things pred can do to you but for right now I’m only gonna complain about my appearance, I’m shallow like that 😉

If you’ve gotten this far, a big thank you for hanging in there. AND a favor if you have any friends, family or colleagues that suffer from one or more of my maladies-send them here. I’m gonna be in front of a gaggle of specialists. I’d be happy to get any questions answered, might as well put my insurance to the test! 

History part 2…

Oh yeah I forgot the Big C which if you think about it is kinda humorous. Who forgets they had cancer 🙋🏻. So yeah I was diagnosed with Papillary Carcinoma of the thyroid in 2011. I opted to have it yanked out! Total thyroidectomy, parathyroidectomy and removal of 4 lymph nodes. I received a big ass(pun intended) 😝

dose of radioactive iodine and so far (knock wood) the cancer is gone. Of course not having a thyroid is kinda challenging but that’s a story for another post. 
Stay with me, I bring up the cancer only because it plays an important roll in the trip to Mayo.  

Turns out apparently there’s not many people that have had this particular combo of crap. I’m unique and like my GI said “complicated”. 

Last year I had another pretty ass fistula (which is just a fancy medical term for a nasty infected tunnel from one organ to another) the human body is really amazing. So my surgeon (really great guy by the way) did me a solid and cut a giant divet out of my posterior. It’s a GOOD thing, he got rid of a bunch of old tissue and placed an amazing new seton drain (we’ll cover those later in the Crohns section) but suffice to say my butt looks better than it has for a couple of years. BUT the best part is it’s almost PAIN FREE! 

SO, that pretty much brings us almost up to date and the reason why I need to go see the brilliant world renown doctors at the Mayo clinic, the original by the way. Heading to Rochester MN in April hopefully we will miss any “Spring” snow. Is there truly a spring in Minnesota? 

One more “History” post and we will all be caught up and when I say we I mean me, my mom and probably like 3 other really bored people 😝 

A little autoimmune history…

In 2005 I was diagnosed with MS and Reactive Arthritis, it sucked but hey with a few really crappy but effective drugs and a walker it was manageable. 
 In 2009 I developed a painful ass issue and by painful I mean 

 PAINFUL! 

Turns out I had developed a Perirectal Abscess (you know the taint area 😉) besides it being horrendously painful (you think I can throw anymore painful’s in here) it was also really humiliating. It took 2 surgical procedures to incise and drain and although it took FOREVER to heal it did eventually close and I went on my blissfully unaware way thinking it was just another medical fluke. In 2014 after 5 years of thinking my diseases were under control I started having severe abdominal pain. I went in to have my PCP send me for blood work for what she thought was pancreatitis which was negative, AWESOME no pancreas problems. I decided to ignore the pain. THEN 2 months later POW a new and OMG even more painful bump right back in the unmentionable place😢

I couldn’t stand the thought of having to go thru that misery again so I did what every busy mom in denial does, I googled a home remedy. Which consisted of sitz baths and compresses. YUP me with my big ass in the tub between explosive bouts of diarrhea and puking up to 10-18 times a day. SO I stopped eating -what doesn’t go in can’t come out- right? Turns out you can live that way for a short time but eventually a middle of the night ride thru a snow storm to the ER is necessary so you don’t DIE of a septic blood infection and anal fistula. 

YUP, denial is never pretty but the hallucinations you have when your temperature hits 105 are rainbowrific! 

SO, I was diagnosed with Severe Crohns a new autoimmune disease to add to my docier! I’ve always been an overachiever 😝

Stay tuned for more icky details. It gets educational, I promise 👍🏻