crossposted at BlogHer.com
It’s after midnight here in Michigan, where I am visiting with friends and family. Surrounded daily by love and attention and support.
So why am I awake and crying?
Because for many months I’ve been hiding my health issues. Ok, maybe hiding isn’t the best word. But since about …oh, last year Christmas I’ve failed to mention to you – the people whom I tell EVERYTHING- that I’ve been sick.
So tonight I’m awake and crying because yet ANOTHER symptom has appeared in this long and exhausting road of “I’m getting old and my body sucks.”
Tonight my mouth is covered in sores (sexy, I know…stay with me it gets sexier) after months of vomiting and several weeks of rectal bleeding.
Yes, I said rectal bleeding. And get used to it, because I’m going into more detail.
You see, back when I was *just* feeling sick and puking ocassionally, I didn’t bother to see my doctor. After all, I’m a puker. Two glasses of wine? Puke. Nasty smell coming from the trash? Puke. Weather turns and it’s cold and I don’t have a jacket? Puke (I’m not kidding, the cold makes me puke).
Then this started happening more and more often. Sometimes just a gag. Sometimes just in the morning like I was pregnant or something (no, I’m not) and sometimes just over-all nausea with zero puke…I thought, huh, that’s weird. Oh well.
And I went on with my normal life.
I saw many of you as I traveled, and threw up in your conference hall bathroom. I went out with many of you to dinner, and threw up in the restaurant’s toilet. I even walked down some streets with some of you after a night of fun and drinks, and threw up in a trash can while you weren’t looking.
For some reason, I thought this was fine. For some reason, I did not call my doctor. For some reason, life just went on.
Until…
I didn’t see my doctor until one day I went to the bathroom and instead of pooping a blood clot came out. Then another. And then a few more.
Then the next day it happened again. And the next day…again.
Nothing can get you calling your doctor faster than blood coming from places it shouldn’t.
It was 2 weeks before I could get an appointment, and the nice nurse said “well, you know, if it gets worse feel free to go to the ER…”
Uh, thanks.
Of course that doctor had to refer me to another doctor who had to refer me to one more. They ran the usual test. Blood work was fine. Urine was fine. And that’s when you start to think YOU are the crazy one and maybe this all just is normal and life should just go on and you should quit your bitching.
Then finally we had a test that came back abnormal.
It was a fun one. The doctor stuck his hand up my ass- the rectal exam.
That test confirmed I was bleeding. It wasn’t much to go on, but hey…at least we were getting somewhere.
From there I saw the Gastro doc, who looked at me and my chart and my tests and my symptoms for all of 3 minutes before ordering two rather invasive procedures. I didn’t argue. When you are bleeding out your ass and feeling sick, you just don’t argue.
Mind you, the soonest I get to have any of these tests done is August. Because nothing says “health care in the US sucks” like waiting 6-8 weeks for tests you could probably use yesterday.
As the weeks drag on and the tests are done and we wait for results…I still feel like crap. Of course, on again, off again feel like crap. Some days I’m puking, some I’m just quesy. Some days I’m bleeding a little, some days I’m not bleeding at all. Some days I feel fantastic and consider canceling all the tests ordered.
Then there are days like today. I just threw up in my cousin’s bathroom, put canker sore medicine in 6 different spots in my mouth, and wiped my ass to find pink and red dots.
When I finished, throat raw, mouth numb, and ass hurting…I sat down on this bed and began to cry and write.
I cry because I’m tired, and I cry because I don’t know what I’m dealing with. I cry because I’m afraid it’s something simple, like an infection or some “stress” induced illness. I cry because I’m afraid it’s something not so simple, like Celiacs or Crohn’s or Cancer. But mostly…I cry because I’m really freaking tired of feeling like crap, and I’d like that to go away now…please.
Which leads me to why I am finally blogging about this…and why I hesitated to tell you.
First of all…do many people really want to say “Hey, so…guess what…I’m sick and bleeding out my ass!!!” to the entire world? Yeah, not so much. Also, I didn’t know what to tell you. For all I know it’s all in my head and I have a bad ‘roid from pregnancy flared up and pissed off. Sarah knows what I mean, she recently blogged about having a colonoscopy and had the same hesitations I did,
“I’ve been having some strange digestive issues of late (last couple of years) and finally there’s started to be a small (very small) amount of blood so the docs want to check it out (obviously). It’s funny because no one ever talks about this subject, but once you open the door, everyone has some stories. How can one not laugh at it all though.”
But as time marches on, and more and more tests are ordered, I realize it’s been this community that tends to remind me I am not alone and that they too may have some information or knowledge to share.
Over at Post Cards from Yo Momma I found this gem:
“Dad took me to lunch afterwards. All in all, the procedure itself was a breeze. I just wish that bitch with the needle had told me how much it would burn. They did warn me I might feel light headed after the IV meds kicked in, but that turned out to be a sensation I found surprisingly enjoyable. I bet my hiney was the cutest one all day.”
I bet my hiney is cute too!
I also bet it won’t be the one shaking it’s ass ontop of a table at BlogHer.
Yes, this means at BlogHer ’09 in Chicago I won’t need to hide. I won’t try to quietly puke in the bathroom if I need too, and I won’t need to explain to you why I may or may not be having that 2nd glass of wine. If I get up at lunch or dinner or breakfast and excuse myself I can actually say “I don’t feel well” not “I have a phone call, let me take it outside.” It will be nice to NOT hide.
Which means from here on out you get to join me in my journey. It might be too much to hear…I mean, really- who WANTS to know that much about my ass and my bowels? Or it may be just what was needed, because you too have had similar symptoms or you too know someone also undergoing some tests.
On August 4th I’ll be sedated and doctors will drop a camera down my throat and into my stomach to look around.
On August 11th I’ll be sedated and a colonoscopy will be performed.
And I’m going to tell you ALLLLL about it. From the prep to the diagnosis and all the whining and complaining I will do in between (because you know I will).
In a few weeks I will blog my endoscopy. Then I will blog the prep for my colonoscopy (which, dude…clear liquids, enemas, drinking gallons of some crappy mixture..all accounts indicate it’s hell) and then the procedure itself.
By the end I hope to have some answers, and if not…at least I’ll have you.
Other bloggers talking stomachs, butts, and gastro excitement:
Contributing Editor Erin Kotecki Vest also blogs at Queen of Spain blog
***”HUGS*** My mom recently had a colonoscopy and she said that the day before is bad and not the procedure itself. Hang in there mama!
I’m so sorry that you’re dealing with this. I am a chronic denier of my own illness. I’m pretty sure I would give birth on the side of the road if my husband didn’t alert me to my obvious labour, so I totally get just letting it slide.
I really hope that your tests all go as smoothly as possible, and that it’s nothing too tremendously serious. And I hope that you can have a great time at BlogHer now that you don’t feel as if you have to conceal what’s going on.
Brava, brave one. I think moms have a tendency to immediately put themselves second. I am thankful you’re getting this checked out.
xoxo
Gah! Get well soon!
First, I’m sorry you’re going thru this. Second, my husband is VP of a company that deals with GI docs. He knows everybody who’s anybody in the GI world. We live in the OC. If there’s anything he/we can do to help please don’t hesitate to ask.
PS. I never, ever, let him discuss his work at the dinner table! : )
Sorry to hear you’re not feeling well. I hope everything gets figured out and fixed soon!
I don’t have any experience with colonoscopies, but I had several endoscopies for stomach ulcers. And I can honestly say it isn’t bad at all. Whatever drugs they give you to knock you out are *great*. Apparently when I came to, and the doctor brought me pictures of the inside of my stomach, I said, “Hoo-eeey, those sure aren’t going up on the fridge.” (I don’t remember saying that, but my friend who was baby-sitting me swears that’s a direct quote.)
Good luck. Sorry you’ve been so miserable, and hope the solution is something simple and easy.
*hugs*
I’ve had the colonoscopy and you know what? It’s not so bad. In fact, they give you some pretty damn good drugs.
Insist on them.
On the mouth thing – ooh, that does hurt. On a very practical note, have you tried a mix of maalox and benedryl? It works, it really does.
I am so sorry you have to go through all this horrible health crap. Like quite a few people who have commented, I have also been through a similar thing and it is hell on earth. Sit on the bed and cry as much as you like, it is a great release.
As for the endoscopy and colonoscopy, the prep is pure hell, much worse than the actual procedure. I strongly recommend you buy those wet toilet wipe things and do not use toilet paper at all during the great bowel cleanse. There is nothing quite like the pain of a bowel cleansing when your ass has been rubbed raw by toilet paper. I think perhaps childbirth comes close, but with childbirth you have the option of drugs.
For the nausea, see if you can get your docs to prescribe you with some anti-nausea meds. When I was going through nausea hell, Maxalon saved my sanity and finally put an end to a year of throwing up every morning. Also I found lavender oil really helped with reducing nausea as well. I used to put some on my pillow or on a handkerchief and the smell of it helped ease the nausea. I also found that trying to distract myself also helped, although I am sure my neighbours could have done without me loudly belting out the soundtrack to Rent at all hours.
Best of luck!
Thank you so much for sharing your experience. I will be on the edge of my seat and hoping for a good outcome.
Been there, done that. Different set of symptoms, same feeling of “am I making this up? Is it just stress?”
I have a genetic collagen defect called Ehlers Danlos Syndrome. I was diagnosed at 18 by my neurologist, but the way he talked to me I thought it was just my weird hypermobile joints and migraines, nothing more.
Meanwhile, both before and after, I’ve donated hundreds if not thousands of vials of blood and hundreds of little cups of pee trying to figure out what the heck was the matter with me. I’ve been sick in one way or another since I was a child. I didn’t think the weird genetic thing was it – that was dismissed and no one ever brought it up again.
Turns out that weird genetic thing, due to the nature of things, can affect almost any and every system in countless ways. Turns out that it can cause, oh, dozens of seemingly unrelated things. Turns out that, yes, this genetic thing can cause all the fatigue and pain and joint problems, along with the migraines, cataracts, lightheadedness, horrid horrid periods, spontaneous hemhorraging, and the low blood pressure and digestive issues and IBS so bad that I’ve actually passed out on the toilet. Turns out that it wasn’t my imagination, I really was sick, and it’s not stress. And I’m not a hypochondriac.
By all of this, I’m saying you’re not alone. You really aren’t. I hid how sick I felt for years – I was tired of being called a hypochondriac or lazy or….
I hope you get a diagnosis, and I hope you don’t have to wait too long for it. Sometimes, having a label can mean all the difference in the world, even if there isn’t a cure or a treatment.
**SUPER HUGS** thank you for sharing, my husband went through something similar. We are here to support you!
Dear Queen of Spain,
Thank you for sharing this. I know it was really hard. You will be in my thoughts and I will be eagerly following your journey back toward health.
You’re so brave. And please, try to rest a bit!
I’m so sorry sugar! Does it help if I tell you how pretty you are? And that you should totally get a puppy?
Just don’t twitpic the procedures…*PLEASE*.
😉
Totally twitpicing that shit. Get it, shit?
Laugh with me people
I’m so sorry you’re having to go through this, but I’m so impressed that you’re brave enough to talk about it. Hopefully other people will be more willing to talk about it too. When Farrah Fawcett died (and I am not saying that you will, or that you have the same bad taste in men), the thing that made me saddest was that she felt she had to hide her illness for so long because it embarrassed her. Thank you for sharing, and I hope you aim the next puke at the haters.
I’ll be thinking of you and wishing you strength from afar. As they say, “this too shall pass.”
Erin,
I don’t usually comment on your blog (I’m one of those darn ‘lurkers’) but I read this late last night and you’ve been on my mind since.
First off, I hope you feel better soon and that the procedures in August will set you on a path to a speedy recovery.
Second, you were oh so wise to tell everyone before BlogHer.
Third, I was struck by how long you ignored symptoms. Imagine if this had been your child with the same symptoms. You would have been at the pediatrician’s that first day, right? But you’re not alone. So many of us Moms take care of everyone else but ourselves. Think of how many women ignore their mammograms (hate to confess that I let mine slip way too long before getting checked) or even something as simple as daily exercise (I’m not very good on that one either).
At the end of the day, we all know we need to take care of ourselves, but with the frenetic lives we lead, it’s so hard sometimes.
Hoping you feel better soon and have a great time at BlogHer. I’ll look forward to (hopefully) meeting you there!
I’m so sorry you’re having to deal with all of this! I hope you have a diagnosis very soon so you can start to feel like yourself again. In the meantime, although it’s not much, I can offer some advice with the mouth sores that might help. I suffer from stress-related canker sores and the best thing I have found to prevent them is using Crest Pro-Health mouthwash every day. I don’t know why this mouthwash works and others don’t, but I think it has to do with the fact that it doesn’t contain alcohol (which tends to just irritate the sores). To help heal the sores that are already there, my doctor told me to put a Q-tip into hydrogen peroxide and dab it on the sores multiple times a day. The peroxide will help kill the bacteria in the sore but won’t sting. I hope this offers you some relief, and I hope you get well soon!
i had an endoscopy about 2 months ago, and i couldn’t blog about if i tried because when they sedate you, they mean business.
i say, think of it as a welcome respite from the everyday hustle-bustle stuff.
i mean, we have to find a bright side, right? and i’m just saying, that is some GREAT SLEEP that you’re going to get.
wait, aren’t you in michigan right now? because i’m in ypsilanti and i have a script for zofran that that you can have. i don’t need it anymore and it’s a freaking MIRACLE WORKER on the nausea.
i’m not sure where you’re at, but from past blog posts i gather that your family is from the detroit area, so it’s possible that you’re not very far away from me.
New reader here – Don’t beat yourself up because you feel bad. Chronic illnesses simply SUCK and anyone who’s got on-going problems can relate. I know you’re tired but please don’t let your docs off the hook – make them check the complex system that is your WHOLE body. The sores in your mouth indicate that something else might be going on – I get them often due to stress, being run down andtoo much sugar for too long a period. This stress you’re feeling might throw your immune system off and means that the bad bugs that cause these are thriving. Treat your body overall to take away their food source. Gargling 4 times a day with very salty water will help heal them but in the mean time avoid things with sugars, high fructose corn syrup and those things that turn to sugar in your body. I hope you feel better and I’ll check back on your progress.
Erin,
My thoughts and prayers are with you and I’ll keep checking back on your progress.
@shiraabel
Erin…The colonoscopy is no big deal.. I dreaded it for a number of years and it was easier than having a baby. I have enjoyed following you on twitter. I am the gal from michigan. I am just learning about blogging and social media as I am in my early 60’s and want to keep up with this new world. Getting these tests will ease your burden. Everyday life is problem solving. Look forward to your inspirations. Good luck!
@barbygirl ,ann arbor
I had a colonoscopy just a few weeks before Blogher09. My advice: tell your doctor you want to drink the Halflytely stuff (which I had and is bad but bearable) instead of the TriLyte stuff (which my friend Julia of I Do Things had and compared to elephant semen).
Oh, also. Vaseline. Lots of vaseline.
I was diagnosed with IBS after a trip to the ER. But they immediately sent me to a surgeon to check my gallbladder and she sent me to a GI doctor. The FIRST thing he checked was blood in my bowels. That’s a big concern. I hope all turns out ok for you.
My sister has Crohns. It’s a difficult disease but you can live with it. You just have to watch your stress and diet like a hawk (and she’s 18).
Hope all goes well!!
Hello. I’m new here. I’m curious about your symptoms so I think I’ll follow you on your journey. Need I say I have suffered some of the same things? Aside from bleeding out the ass that is. But I’ve always wondered why, after so many years of NOT having a weak stomach, I just all of a sudden get nasuas, or just down right throw up, for no apparant reason at all. So yes, I’m going to follow you.
Your post inspired me to open up a little and talk about some of my own health concerns on my blog…. And I have resisted commenting here but feel like I should. I recently was diagnosed with ulcerative proctitis and it has some of the same symptoms that you are suffering from. I, too, had to do the colonoscopy (not nearly as bad as the laxative prep beforehand) and go through the worrying and the cancer fears and the why-the-fuck-is-this-happening-to-me?? fears. It ended up not being life threatening, but it is something that I am still dealing with and get scared about.
I hope your tests reveal nothing serious and that you are healthier for pursuing and getting a diagnosis for what is going on. I’m sending positive thoughts your way. And thanks for inspiring me to share my own issues so that someone else may learn from them.
Erin,
I can’t leave an overly mushy comment about how I understand and empathize with you, because I don’t. Well, at least not the symptoms. I can say that the frustrating doctor visits, referral after referral, are all too familiar to me.
I can also say that I have had many friends with Chrohn’s (sp?) diesease and know what an joy ride, I mean cluster f*$k it can be, IF that is what you have.
I DO want to say that I enjoy your musings on Twitter and have read through your blog for the first time today. I have enjoyed it as well.
I also want to say that I hope you feel better immediately. Hey, I can say and wish WTH I want. Doesn’t mean it will happen, but here’s to good thoughts!
Sure, sometimes a lot of people may think it is TMI and sometimes you do too, but as women, mothers & stressed out folks just trying to make it in this crazy world, we need to share what is REALLY going on in our lives. It’s much better that we be genuine people than fake ass bustas. (Hmm, think I used that right. ;-)) (FTR, I hate the word Bustas. I apologize now for using it.)
I guess that is it. Good luck and best wishes to a lady that makes me laugh with witty words in 140 bits or less. That is tough!
You poor girl! I have been so remiss at reading your feeds that I only caught one tweet about you having to get out of the pool bleeding. And I could have told you that 1)I’ve had a colonoscopy and an endoscopy 2)the cleanout fot the colonoscopy is much worse than the procedure 3)my mother had diverticulitis and 4)the US health care system is far worse than Canada or Europe and that’ why Karoli and I are ranting and raving.
Anyway, I’m here late, but I’ve caught up on your tweetstream and Aaron’s, your vacation, and your hospitalization. And I am here for you with my entire heart. You are too young for all of this trauma.
Much love,
Francine
Because nothing says “health care in the US sucks” like waiting 6-8 weeks for tests you could probably use yesterday.
Really? In the UK, you wouldn’t be getting tested., you’d handed a maxi-pad.
I am a 35 year old female with ulcerative proctitis. I just had a baby one month ago and was diagnosed with proctitis at the age of 21. I won’t lie to you all and say it has been an easy ride. It definitely hasn’t. The stigma attached to GI diseases is ridiculous. There were many events that I missed over the years due to “not feeling well” or being scared I would need to run to the toilet often or not being able to make it on occasion. It is not supposed to be a younger person’s illness but more and more are developing GI disorders at younger ages. I used to teach and found out I couldn’t do it anymore. After 3 years, I resigned.
The stress and the inability to use the bathroroom whenever I needed to were 2 major factors. My friends are now just understanding my condition. It’s not an easy road. I didn’t have many symptoms while pregnant but am starting to feel lousy again. (frequent bathroom trips)
I can tell you that stress is definitely a trigger. Hope you get better soon.
I’m so sorry you’re so sick. You are in my prayers.