Tuesday, October 4, 2016

Because he loves me

Against everything inside me screaming to give up and be done and pretty much just lay down and succumb to whatever happens to my health, I can't.  I can't give up because my husband won't let me.  He loves me.  He wants to help me in whatever way he can, however he can.  He wants to find a way to make me better.  He won't give up so I won't give up.  I won't give up because he loves me.

We went to a new sort of doctor last week, a naturopathic doctor, an acupuncturist actually.  She does all sorts of "alternative" therapies, not just acupuncturist, and sat down with my husband and I for over an hour discussing everything going on with me.  I meet with her at the end of this week again, after she has a chance to look over all my information and develop an actual plan of care that will take more than three minutes to put together. When I left that appointment I felt something that I haven't felt in so long.  I felt hope.  And hope is a powerful thing.

Let's see what you got, Eastern Medicine.  Please don't disappoint me like Western Medicine has.

Wednesday, August 10, 2016

Giving up

I went to Dr GI last week.  I saw the doctor for approximately 9 minutes.  Long enough for him to question me (again) about why I can't tolerate bile salt acid medication - because he obviously never wrote it down or he thinks I'm lying.  Either way, it's bullshit because after all this time the man should know exactly what it does and why my body doesn't tolerate it.  After the same questions were asked, he ran down the reasons why he doesn't think I have active Crohn's disease causing my problems.  He said, yet again, that he feels my problem 'could' be bile salt acid diarrhea. He even said he thinks it 'could' be some Irritable Bowel Syndrome, but 'definitely' not Inflammatory Bowel Disease because the colonoscopy, EGD, CT Scan, Small Bowel Follow Through and blood work I had done last year didn't show anything.  My doctor looked at me square in the face and said, "go home and do what you can on your own to control your diarrhea with Imodium since you can't tolerate anything else. Your abdominal pain is from chronic diarrhea. There is nothing else to do."  And he walked out.

There. Is. Nothing. Else. To. Do. 

Control your diarrhea On. Your. Own.

Nothing. Else. To. Do.

I can't even write this without tearing up.  I can't even fathom that this visit to the doctor really happened.  The doctor I have trusted for years, the doctor that I chose after having gone through several other doctors, the doctor I trusted, the doctor I needed, that doctor literally gave up and walked out on me. 

So that's it then.  This is the best my health will ever be.  Nothing can be done.  No cause can be found.  No more treatments can be tried.  This is it.  How is someone supposed to handle it when they've been totally given up on?  Fight? Throw a fit?  Go somewhere else?  Why?  Why bother?  Why go through it again?  It's pretty clear that I'm some kind of medical marvel that defies the odds of all current Western medicine and the educational capacity of the field of Gastroenterology on a whole.  So who would be able to help?  I've been doing this dance for over 20 years.  I've been through, at least, 5 doctors that I can remember, not including random doctors that have seen my history or treated me at a hospital.  No one has been able to help or figure it out and now it's all been left up to me to fix myself. Control your diarrhea ON YOUR OWN.

Go somewhere else and fight you might say?  Why fucking bother?  I give up too.

Friday, July 15, 2016

Folks Magazine Features Young Man's Struggle With Crohn's Disease

Everyone should check out this online magazine called FOLKS (http://folks.pillpack.com) that publishes great stories about people who are living with chronic conditions but without reducing them to their conditions.
They are featuring a great story about John Capecelatro's Crohn's Disease which left him unable to eat and bedridden for weeks on end.  But this computer programmer has learned to savor his friends, family and every moment of health.  Read it HERE!

Jenni's Guts gives a big THANKS to the folks at FOLKS for their amazing work!

Thursday, June 23, 2016

Gettin' Ink Done

Check out this link from Healthline featuring fellow IBD'rs who have chosen to get tattoos to show their support, struggle and strength in the face of Crohn's and Colitis.  (My tattoo just happens to be on page 7 of the list!)  I hope you enjoy these as much as I have.  Seeing all this great ink just makes me want to get more!!  IBD INK

If you want your IBD Ink featured on this list, Healthline is looking for new submissions.  All people have to do is send in a clear photo of their tattoo with a short description, with the subject “My Crohn's tattoo,” to nominations@healthline – Then they’ll then feature them on the site! 

Wednesday, June 1, 2016

A Slap In The Face from Entertainment Weekly

After posting about my distaste for social media and explaining that the only social media I'm involved in is Instagram and this blog, I think the Instagram may also have to go.  Simply because there is no reason I would ever want to come across something as disgusting, appalling and just downright rude as what I saw this weekend!

Scrolling through my daily dose of baby animal pictures and motivational sayings I saw this post from CCFA.  This picture, taken from Entertainment Weekly Magazine's special double summer issue, is nothing more than a slap in the face to the whole IBD community. 

Where to begin...

First off World IBD Day isn't on May 23, it's on May 19.  That in and of itself is an insult because if you are going to make fun of something at least get your facts straight.  (Fun Fact: May 23 is actually Lucky Penny Day.  Don't think anyone would be offended if that day was substituted for World Crohn's and Colitis Day in this "joke".)

Second, whose joke is this?  Entertainment Weekly's, Beyonce's or Minnesota's?  Who actually is the one trying to make a joke about World Crohn's and Colitis Day? Which misinformed source is trying to say it's the "Joke of the Week"? I don't read this particular magazine, however I'm thinking the blame falls on Entertainment Weekly.  Minnesota is just a state trying to pay homage to a celebrity for some reason I really don't care about.  Beyonce is just a celebrity who will be put in the news at the whim of the paparazzi for no other reason than the fact that she's famous.  Entertainment Weekly, however, is a magazine that is supposed to have writers and editors and fact checkers and I really just want to scream,  "WHAT THE HELL WERE YOU THINKING?!"

Third, take that?  TAKE THAT?  Really?  This is how Entertainment Weekly chooses to word this?  Why would anyone deliberately try to oust a disease?  Why would that be funny?  How does Beyonce being recognized by the state of Minnesota in any way relate to or have anything to do with Crohn's and Colitis?  It doesn't. It just doesn't.  It almost seems as if this slam was deliberate.  Why?

So many comments flew around on Instagram (and I can only assume Facebook, Twitter and the like - though I did read that Entertainment Weekly shut down the comments section on Facebook but I personally don't know that to be true) and most of them stated two main things.  1.  No one would ever think to make fun of 'popular' diseases like Cancer, Diabetes, or ALS.  2.  Crohn's Disease and Ulcerative Colitis are not a joke.

People know about Cancer - every form of Cancer.  People know about Diabetes.  Celebrities come out of the woodwork to advocate for these conditions and many others.  But Crohn's Disease and Ulcerative Colitis are not well known; to the general public or to Hollywood.  I think maybe Shannen Doherty may (or may not) have Crohn's Disease though she won't publicly acknowledge anything about it.  She was quoted once saying it wasn't "sexy".  Mike McCready of Pearl Jam does have Crohn's Disease and he does a lot of advocacy work to raise awareness of IBD, however if you don't follow this type of music chances are you aren't going to know who he even is.  Those of us in the IBD community don't have a super popular celebrity endorsement for our disease.  We are nameless, faceless warriors who fight for our lives every day behind closed doors - literally.  Those who have feeding tubes, ostomies, surgery after surgery, complications, pain and more.  The endless medical debt.  The endless trips back and forth to doctors and hospitals.  We lose friends, relationships, jobs and even family because of our diseases.   We even lose ourselves.  But we do have a voice.  A small little voice screaming from an Instagram post and a little blog with 136 followers.  That little voice is saying, "Hey! I'm here, Entertainment Weekly, and what you did to make fun of us was wrong!"

I joke about my condition.  I joke about pooping.  I have funny pictures on the side of this blog and laughing is a healthy coping mechanism when dealing with the harsh realities of living with a chronic illness.  However, this joke was done in very poor taste.  It was done in a way that was hurtful and makes it seem like a day about a celebrity who has it all - money, fame, beauty and most importantly her health - is much more important and should be celebrated and acknowledged over a day to build awareness and recognition about Inflammatory Bowel Disease.  God forbid Entertainment Weekly use their powers for good to help people understand what IBD actually is and how it effects people's lives.  That would be informative and tasteful journalism though - obviously way too much to ask from anyone in 'the business'. 

Entertainment Weekly's website says "Smart. Funny. First."  They were none of these things when it came to this. At least Entertainment Weekly did do one thing I can't be pissed about - they spelled Crohn's correctly.

Friday, May 27, 2016


Sleep.  Sleeping.  Slept.  To have slept.  I miss sleeping so much!  I used to sleep a lot.  I used to be able to sleep a lot.  Now I'm lucky if I get more than three consecutive hours of sleep in any give day or night.  The irritating part is there isn't even anything on my mind.  I'm not over thinking things, I'm not planning things, I'm not brainstorming, I'm not having made up arguments in my head, I'm not having racing, word salad thoughts.  I'm not balancing the checkbook or trying to solve problems.   I'm just... awake.  Uncomfortable.  Itchy.  In achy pain that isn't enough to be excruciating but enough to be annoying.  My muscles feel like they need stretched or pulled.  My joints and tiny bones in my wrists and hands ache.  My shoulders kind of feel out of socket or like they need popped.  My calves feel kinda crampy when I try to stretch.  I'm getting enough water I think because I'm constantly in the bathroom peeing all night - which also isn't helping anything.  When I'm not peeing though, I'm all with the diarrhea; but that's nothing new.  I'm just uncomfortable.  Is it my Fibromyalgia?  Possibly Restless Leg/Arm Syndrome that I've never been diagnosed with?  Is it something totally new that I can add to the list of stupid crap that's "wrong" with me that no one will ever be able to affirmatively say what it is and what causes it and actually give me something to stop it?  Is this normal?  Does everyone feel this way?  Am I going insane from lack of sleep?  All these questions are what I think about.  Not any actual problems. And I'm fairly certain I will probably...

(All ya 80's kids gonna get that Freddy reference! HA!)

I'm trying lavender essential oil in a little diffuser.  They say it's calming and can help you sleep.  It's natural.  I'm undecided on if it works.  It hasn't been long enough to tell for sure.  But at least I'm trying.  I just hate not sleeping.  I hate this uneasy feeling in my body.

I've tried all the drugs too and nothing works.  I just end up with headaches the next day that aggravate my current nausea situation.  And they don't even help me sleep.  That's the part that is so stupid.  Why doesn't my body want to sleep?  I hate insomnia.

I apparently posted almost this exact same rant back in July last year.  Weird.

Friday, May 20, 2016

No Social Media for me...

So I actually checked the email I have associated with this blog and found a ton of messages.  I apparently had/have/had a Google+ account I have no idea how to use.  I got a Hangouts notification on my phone today and realized people have been reaching out to me about my blog and other advocacy opportunities for months.  I've not gotten ANY of those messages and I am SO sorry.  I'm not deliberately ignoring anyone.  I just don't know how to use any of these things.  I do not have social media.  I do not use social media. I typically do not even like social media. I do have an Instagram account but that is all about pictures - nothing else.  Please be aware that if you need/want to get ahold of me either leave a comment on the blog - any post will work because I do get all the comments. Or you can email me at JennisGuts at Gmail dot com but I do not check that very regularly so it might take awhile to get a response.  I do not use Google+ and don't even know what it is or how to use it.  I don't understand a thing about Hangouts so if you have sent me a message that way please know I don't know how to retrieve it or respond to it.  Please just resend in a comment or regular email.  I'm so sorry if you feel I've ignored you.  I haven't.  I'm just not good at all these forms of communication.  I don't like technology at all really.  I hope this message reaches all of those who have tried to reach me.  Please let's try again...

Thursday, May 19, 2016

World IBD Day and Reality

I jacked this picture off of Instagram to post on here because today is World IBD Day! This meme states what the biggest problem with knowledge about IBD is - people generally think it's just a pooping problem.  Even I, a seasoned Crohnie, used to think that my biggest problem was diarrhea but really it isn't.  It's one of the biggest problems I have, yes, however it is only one of an all encompassing disease that has me constantly rerouting my life.  Fatigue, nausea, insomnia, cramps, bloating, bleeding, hemorrhoids, anxiety, eye problems, skin, hair and nail problems, nutritional deficiencies, back pain, joint pain, pretty much constant pain somewhere in my body, the list of problems associated with having IBD is endless.  I hate it.  I hate everything about it.  But it is who I am.  I am a what a person with IBD is.  I'm what they look like.  I'm what they feel like.  I am Crohn's Disease.

The saying goes - "I have Crohn's Disease but it doesn't have me".  Well, that's bullshit.  It does have me.  I live with it every day.  I have had to change my whole life because of it.  I had to quit working because of it.  I'm on disability because of it.  I am constantly trying to find relief in all kinds of ways from the problems associated with it.  My daughter has been effected by it, as has my husband.  My life is different because of Crohn's Disease.  My body is not the same - inside or out.  My whole being is changed forever because of Crohn's Disease.  It will never go back, it will forever be broken and damaged because of surgeries and drugs and disease.  I have been able to carve a life out around the illness.  I am quite happy with my life by and large - outside of being sick.  But Crohn's Disease does have me.  It always will have me in it's clutches slowly, quietly destroying my insides.  Waiting to cause a full blown attack, to destroy what happiness I have found in life.  But it's really just a matter of perspective, right?  Don't think about it too much.  Don't focus on it too much.  Concentrate on other things.  Work around it.  Plan around the unplannable.  Do what you can.  Get by.  Be positive.  That's also a huge part of living with IBD.  People generally don't understand how difficult that is to do day in and day out either. 

Let's all try to be like Tim's loved ones and understand that having IBD is much more that just pooping a lot.  Let's remember how devastating having a chronic illness is on a person in all aspects of their life.  Even if it isn't something visible.  Keeping IBD in the bathroom is the worst thing we can do.  Because honestly, all of the problems associated with IBD spill out into every other room of the house and I don't just mean the smell.

Wednesday, May 18, 2016

Best of the Best ... Still

Big thanks to Healthline for choosing Jenni's Guts for one of the 13 Best Crohn's Blogs out there.  I've consistently won this award and it surprises me every year.  Thank you all so much!  I am really glad to see that I am helping others with Crohn's and Colitis and other "spoonie" problems.  Here is a link to all the other winners who should equally be as happy and excited at me.  Lots of great blogs out there and I'm proud to be among them!  Congratulations everyone!

Monday, April 18, 2016

The Category 5 Shit Storm - An Autobiography

I really do try to think positive.  I always try to remember that bad times can't last forever and that things will eventually get better.  But why does it seem that the more that I think this way, the more powerful the shit storms of life seem to become?   It started roughly two months ago.  Just a few little things at first.  But it all spiraled out of control so fast I'm still not sure it even happened.  I am only writing this all down because one day I hope to look back and see that yes, it all actually did happen, and we made it through - somehow. 

Picture it, Ohio, March 2016

Our one and only form of transportation broke down.  Our poor little vehicle needed some work and was officially dead to us.  A vehicle was able to be borrowed and we were fortunate to have that so my husband and daughter could make the trek back and forth to school and work every day which happens to be about 40+ miles one way.  A friend of ours was able to take our car and try to fix it.  But the part it needed wasn't easy to find - or get.  (It's actually just now on it's way to Ohio from California.)  No fault of anyone, just generally a broken down car.  It happens.  Okay.

About a week later, "What's that weird smell?"  My husband asked one afternoon as we walk inside from being just down the street at his parent's house.  After some investigation it was discovered that the wall where our furnace sets was burning hot.  You couldn't even touch it, it was that hot.  We turned the furnace off and tried to figure out what was happening.  After two hours of being off, the furnace was still emitting heat and the wall was still hot.  Not good.  My husband flipped the breaker off to the furnace and in twenty minutes it was cooled off enough to finally touch it.  Odd that just turning the thermostat off didn't cool anything down.  It was evident that our furnace could very well have burned our house down while we were down the street and our daughter was asleep in her room.  Thank God we came home when we did!!  With it being March and knowing it would be warming up soon (Haha Ohio - great joke by the way - it's been in the 30's until 2 days ago!) we decided we would just keep the breaker off and worry about the furnace when we had the money to fix it - (the Social Security money that is probably NEVER going to come.)  We have some little electric heaters that have been doing a great job of keeping us warm so please don't think we're freezing in this stupid Ohio weather.  Alright, just a little bump in the road.  We can deal. The house didn't burn down.  Everyone is fine.  It's okay.

The next week, still waiting on the car part with the total inability to be able to do anything to rush the process (still, financially limited so taking it somewhere else was out of the question) the borrowed vehicle had to go back to it's owner so we were left with no transportation.  Well, shit. 

The same Sunday we returned the borrowed vehicle I decided to end my evening with a nice hot shower...that was strangely only luke warm.  "Honey, I think the hot water heater is acting up."  So we check the hot water heater, no leaks, nothing weird going on visually.  My husband decided to check the breaker to make sure it hadn't somehow gotten flipped.  As soon as he touched the breaker to the hot water heater it sparked.  He jerked his arm back and as I was trying to make sure he wasn't totally shocked, the main breaker to the house popped with a huge flash and all the power to the whole house went out.  I screamed in a panic because I had never seen anything like that in my life and thought for sure everything was going up in flames.  Not to mention I was sitting about one foot from the breaker box watching it when it happened.  After a string of vulgarities were spewed from my husband's mouth (and mine) we realized we had no electricity.  No hot water.  No furnace and also now no car.  We also had basically no money to fix any of these situations.  This was not okay.  That's twice now my house has almost burned to the ground - with my kid in it!! There is not enough anti-anxiety meds in the world to help this kind of situation.  Not that medicating myself would have solved anything anyway.

After calming down we contacted an electrician to come over the next morning and it was decided we needed a whole entire new electrical box installed.  Alright.  Great.  My husband even wheeled and dealed and got a really good price from a trusted company and we scheduled it, got it done, now we had a new breaker box and electricity.  But still no hot water.  Okay. Let's figure that out now.

The next day our county job and family services office called me about our daughter.  She is adopted.  It's a long complicated story about how it happened.  However, this happened over 11 years ago and everything has been finalized and done.  She goes to school, she has a part time job, she's being recruited by colleges, she amazing.  But some uninformed case worker called me out of the blue and told me that "we have a problem."  She went on to say that all of our paperwork was illegal.  Nothing was signed by the judge and it meant that everything we had stating that our daughter was legally our daughter wasn't actually legal.  OH MY FREAKING GOD!  Two phone calls and one huge anxiety attack later I found out the papers are stamped and recorded and TOTALLY legal and have been this whole time - just like we thought.  Apparently different counties do things differently.  Why I know this and the actual county worker didn't is beyond me.  I did however cover my butt and sweet talked the lady at the court into sending me a judge signed duplicate document so that will NEVER happen again!  Crisis handled.

After a few days my husband was able to get a new hot water heater and his brother came over to help us install it.  Really it, wasn't that difficult.  Until my brother in law turned the electricity to it on before it was completely filled up all the way and fried the top heating element in the matter of about two minutes.  Seriously?!  Yes.

The next day a new heating element was retrieved and my husband installed it like a boss and we had hot water.  However, due to the shitty water where we live and the fact that the old hot water heater was so old and gross and full of lime or whatever it wouldn't even drain.  It had to be dragged out of the house completely full of 40 gallons of water.  Now my husband possibly has a hernia. He was able to go to the doctor and they said no but he definitely is having some major stomach muscle pain now.  I mean honestly! The man is just trying to take care of his family.

But wait, there's more...

We still had to get transportation.  We had very little money, even less after the electrical and water heater issues and our car was still in the process of being fixed.  We managed to find a car and went ahead and purchased it.  We knew there would be some problems with it because when you buy a very cheap car it's normal that you are going to be taking a chance.  Well, after some routine maintenance and tuning up and one huge hail Mary shot, my husband was able to get everything running smoothly.  I mean honestly, there isn't much he can't do!  But being backed against a wall like we were with everything doesn't make it fun, or easy.

I'm not going to lie though, with the shit storm we have just gone through I am still scared to breathe.  I'm afraid to move almost.  It's like everything that could go wrong, did. But I also know that it could have been a lot worse.  I've done nothing but learn that I had taken everything in my life for granted.  Electricity, water - hot water, not being on fire, transportation that is reliable and can go a lot of miles and not break down, not having an anxiety attack every time my husband and daughter leave the house because I wonder what will happen at home and if they will reach their respective destinations safely and be able to get back home safely.  Every time we turn around it seems like the rug keeps getting pulled out from under us. 

I have been under so much stress that I had to go to the emergency room the other day because I could not move my head.  My neck/shoulder/arm had seized up and all the muscles would not relax no matter what I did. They gave me a shot and some muscle relaxers and sent me on my way.  It took another full day before I could sort of turn my head to the right.  That was a week ago and I'm still feeling pain and am sore from it.  I often wonder how much stress a person can take before it kills them.  I wonder this because I think I am involved in some kind of weird experiment where I'm being tested and evaluated to find out that exact information.  I just wish it would stop.

I don't want much for my life.  I really don't.  I just want a very simple life.  I don't need a lot and I don't want a lot - not things, not people, not even experiences.  I just want my simple little home with hot and cold running water, electricity, dependable transportation for my husband and daughter, food in my cupboards and refrigerator and no fear of everything falling apart around me - or catching fire.  I will take Crohn's disease, I will take pain and diarrhea and Fibromyalgia and anything physical like that a million times over all the things that have been happening.  Shit happens in life and I understand that, but why all at one time?  I am so afraid my husband is going to have a heart attack or a stroke because of all of this stress.  I pretty much forced him to go to the doctor for a check up and the possible hernia.  They did an EKG and blood work which all came back normal - praise Jesus!  But can we stop pushing it???  Please?! 

I don't want to say something dumb like, what else could go wrong or things couldn't possibly get worse because I know they can - and will.  But I will say - please just stop.  I seriously cannot handle anything else.  The experiment needs to be over now.  Please.