Wednesday, January 27, 2016

Well that didn't work...

The whole bile salt acid diarrhea medication thing was a big fat failure.  My body simply could not tolerate the medication.  I was supposed to take it twice a day.  I couldn't even take it once a day for two days in a row because I needed at least three days in between doses for my intestines and rectum to recover from the side effects.  I had pain, I had bleeding, I even had a moment where I passed out on the bathroom floor because of all of that.  It was not good.  I traded a lot of diarrhea for diarrhea, pain, bleeding hemorrhoids, bloating, and a vast supply of never ending smelly farts that exhausted me just to expel.  I think I'll take just the diarrhea.

Now I am onto another type of medication that is said to help those with Irritable Bowel Syndrome with Diarrhea (IBS-D) called Lotronex.  It's a scary drug.  It can cause a whole whirlwind of problems and could eventually wind me up in the hospital if I'm not super careful with it.  I haven't even gotten the prescription filled yet.  I am that afraid of it. 

Of course all my test results came back "NORMAL" and showed no active Crohn's so that can't be the problem.  Dr GI wants to try to control the diarrhea with the Lotronex but I'm not totally convinced just yet.  But the good news is I finally got a referral to a dietitian so I can sit down with someone and actually figure out how to eat and maybe that will help.  I do not advocate or encourage any such diet because all stomach issues are individual and what works for one person may or may not work for the next.  I fully understand that.  I'm not saying that everyone should go out and try what I am trying either because it might not be the thing that helps you.  But what I will be trying is the FODMAP diet.  I'll be posting more about that soon - once I meet with said dietitian.

Stay tuned to see how my body can screw this up too.

Thursday, December 24, 2015

Healthline 2015 Best Blog Contest!

So I got this today: 
Hi Jenni, Congratulations – Your blog, Jenni's Guts has been nominated in Healthline 2015 Best Blog Contest! You can see the contest here: CONTEST   Each year, we recognize and honor the top health blogs of the year with our annual Best Health Blogs Contest. The contest shines light on those blogs that have really made an impact on their reader community and provided them with valuable information and resources to help them live better, healthier lives. We are happy to let you know that you have been nominated in the contest! The contest started this Monday, December 21st and will run through January 21st. We will award cash prizes (up to $1000!) for the top 3 blogs with the most votes. Please share the page with your followers and ask them to vote for you. Users can vote once every 24 hours, so please continue to share and encourage your followers to vote! 
Please vote for me.  It would be so great to win.  Honestly though, being nominated was a huge surprise to me and kinda made my whole day.  There are so many great blogs out there that deserve this and are making a huge impact on the Health Community.  I didn't even know anything about this at all.  I've stayed off the Internet so much lately I'm out of the loop.  I can't even vote for myself because I don't have Facebook or Twitter! But YOU can vote!!!  
Thank you to everyone involved in this.  I really appreciate the nomination and votes so much!!   

Jenni and her Guts!

Friday, December 18, 2015

Digestion 101 - The class I missed because I was in the crapper pooping

Your liver produces bile salts which are stored in your gall bladder.  When you eat your gall bladder squirts out tiny bits of these bile salts through the common bile duct along with some pancreatic juices from your pancreas and it mixes with your food to help you break down fats and such so you can digest your food.  By the time your bile salt acid/food mixture reaches the end of your small intestines and the beginning of your colon, your intestines will take any of the excess bile salts and and send them back up to your liver where the process can start again the next time you eat a meal.  Your colon then absorbs the excess water out of your digested food and then you poop.  Normal poop.  Solid (ish) poop.  This is the process.  The normal process of eating and digestion and pooping.

Bile salts from your liver are not supposed to end up in your colon because if they do, they cause a laxative effect and you poop - a lot - of yellowish, yucky watery diarrhea. All the time.  Even if you are asleep.  Or driving your kid to work.  Or walking down to get the mail.  Or attempting to make dinner.  Or in a coma. Or whatever.

I have no gall bladder.  I have no end of my small intestine or beginning of my colon.  I have a messed up pancreas.  I do, however have a liver that is apparently continually excreting bile salts acid 24/7 that goes directly into my intestines because there is no gall bladder to store it.  There is no part of my intestines to reroute this excess bile back to my liver.  There is no part of my colon to absorb the excess water out of my food. The bile salts are in my colon where they should not be, causing that laxative effect and  I am left with constant (and I literally mean constant) diarrhea.  It doesn't stop.  It doesn't matter what I do, this process of the bile salt acid is trying to work but I'm lacking every part to make it work properly.  Crohn's disease - active or inactive - is going to exasperate the situation.  There is scar tissue.  There is inflammation.  There is a complete and total catastrophe of chaos happening inside my body every second of every day.  Something called Bile Acid Malabsorption (BAM!)  I'm still researching and learning. 

This information was finally explained to me today by my GI in a way that made sense for the first time in nearly 20 years.  It makes perfect sense really.  This is probably what is happening inside my body.  This may be why I feel like I am actually shitting myself to death.  Well, it's either this or a Crohn's flare up.  Blood work has been done to check for inflammation but that will come back always does.  (UPDATE:  12/23/15 - Blood work was normal.  Go figure!)

Dr GI compared bile salt diarrhea to cholera or dysentery - the absolute worst kind of diarrhea one could have.  I swear, those were his words.  But there are these pills, these new type of bile salt binders that I am willing to try and with some changes to my diet (diet change being my choice - not any advice given to me by my doctor) I am hoping work.  I've tried bile salt binders before.  I didn't have good results.  But maybe I couldn't give them a good enough of a chance.  Maybe because I had a job where I sat at a desk for 8 straight hours and couldn't really get up and move around a lot, they caused a lot of gassy bloaty pain.  Now that I'm home and can move around and stretch and walk around and try to fart it out if the gas gets bad so they might work.  I'm willing to try.  I'm willing to try anything.  At this point I have absolutely nothing to lose. 

So maybe I'm not really dying.  Maybe there is a way to slow this bile salt acid diarrhea mess.  Maybe these pills can help.  Maybe I'll feel better.


I received a letter in the mail yesterday from a wonderful lady who started a little business called The Mailing Spoons Project.  She is a Chronic Illness Advocate and she mails letters and cards to the chronically ill.  She herself is a Crohn's warrior.  In her note she included a quote that has just resonated with me.  I love it.  She made me feel strong again just by sending me a little card to let me know she cared.  I'll leave you with the quote and her information.  Thanks again, That Bailey Gal!

"She made broken look beautiful and strong look invincible.  She walked with the universe on her shoulders and made it look like wings..."   ~Unknown

Twitter:  @_thatbaileygal_
Instagram: @TheMailingSpoonsProject

Thursday, November 26, 2015

Happy Thanksgiving!

I have finally received some GREAT news!  I received the letter in the mail and my Social Security Disability claim was finally given a FULLY FAVORABLE decision.  In just a few more months I should start receiving the help my family and I have waited so long for.  I had my hearing back in October.  It was the most nerve wracking day of my life, I think. 

I fully intended on walking into the hearing, sitting down like a BOSS, and being all like...

This is what I actually looked like...

But now, I'm just totally and utterly relieved.  The waiting, the struggling, the worry and regret, it's almost over.  I'm truly thankful.

Friday, November 20, 2015

The Uncomfortable Side of Chronic Illness

I need to say some things so others know and also so I can remind myself.  Sometimes I get so lost in what others think and their misconceptions and preconceived notions that I forget the truth of what life with multiple chronic illnesses is really all about.

Let me enlighten you as to what it is like for me lately.  This morning, around 4:30 am, I was awoken from a very good sleep - which doesn't regularly happen a lot because of insomnia, and I didn't actually get to sleep until well after midnight - by the urge to move my bowels.  Cramps, diarrhea, painful wiping and the anxiety of how much longer I will have until it happens again consumed my sleepy mind.  I managed to get back to bed and laid there, uncomfortably and not sleeping, until around 7:00 am when I had to run to the bathroom again.  Now this time there was much more anxiety.  You see, we only have one bathroom.  My sixteen year old daughter has to get ready for school and is usually in the bathroom around this time.  She keeps her time in the bathroom very short and accommodates me when it's possible, but damn, does that make me feel bad.  A girl needs her bathroom...poop issues or not.  I'm stealing that from her.  Immediate thoughts of how much I suck as a mother and how she must hate me started filling my already anxious mind.  Self hatred and depression creep in and are coupled by complete and utter frustration at my non cooperative body.  I really hate myself.  For so many reasons.

Luckily this morning, the fates allowed me to slip into the bathroom, die from the diarrhea, and slip out before the kid needed in there.  However as soon as she was finished, I was back in there for the third time this morning.  More painful cramps, more acidic diarrhea that burned my whole perineal area, and more self deprecating thoughts.  I thought I could just go back to bed.  I am just so tired and weak.  But as soon as I get comfortable it happens again.  Back to the bathroom.  I'm so drained from doing this over and over and over again. 

Now I'm up.  I am obviously not going to be able to go back to sleep.  I can't take a shower yet because I might have to poop half way through.  Alright, I'll blog.  So here I am.  I've had four more episodes of this diarrhea and it's only 9:30 am!  This will only continue throughout the rest of the day because this is my life lately.  All I can manage to do anymore is poop and mentally tear myself apart.  The doctors seem to think I'm totally healthy.

My furry little baby dog Loki is sleeping beside my on the couch snoring away.  He's curled up on his favorite blanket without a care in the world.  Meanwhile, I'm sitting here trying to keep the thoughts I want to write straight in my head.  My head is pounding with a dehydration headache.  My butt hurts.  My lower belly hurts. I'm nauseous.  I'm so tired.  I'm exhausted actually.  I need to take a shower but I have no energy.  It's all I can do to type this.  I weighed myself today.  I've lost seven pounds this week alone.  I'm not exaggerating. This is Crohn's disease.  This is bowel disease.  But the doctors won't acknowledge it.  Not that I can go see the doctor anyway.  No money for the copay. Waiting on SS Disability to come through...still.

I'm hanging by a thread, but the world thinks I'm okay.  The doctors think I'm okay.  My parents think I'm okay.  My friends think I'm okay.  I try my best to portray okay but you know what, I'm NOT okay.  Nothing about this is okay.  This is why I cannot remain positive.  This kind of illness just destroys you, physically and emotionally.  I don't think regular people realize that.

I recently had a post about my Game of Perfection and how I continually have to put all the pieces of my life back together again and again. It's changed me so much.

Most people who knew me just one year ago probably wouldn't even recognize me today.  Not that my looks have changed that much.  But I have changed.  I have had to endure way too much.  My husband and daughter and I have been through so much in the last two years alone that I don't honestly know how we have made it this far.  But to all the people who think I've changed, lost my faith, am not who I used to be, seem bitter, or have completely "backslid" guess what, you're right.  And the reason is because I have had to manage this, all of this, all of the chronic illness, pain, depression, anxiety, financial ruin, waiting, not receiving the help I need from doctors and the government, all of this and more - I did it alone. Aside from my husband and a few key people in my life (and I mean about three other people literally) I have been abandoned by everyone. I'm must just be too much of a problem that they can't be bothered with.  Too many people believe that if it doesn't affect them directly, why bother with it at all.  My "Christian" friends have taken to the "I'll pray for you" route.  That's all well and good but how about a loaf of bread?  How about a can of soup?  How about you call me on the phone, or better yet, come to my house and check on me.  Ask me if I'm okay and if I need something.  Because I do.  I need a lot of things.  I need help.  My family needs actual tangible help.  Not prayers.  Not good vibes.  Not good thoughts.  And definitely not sayings like: "Everything happens for a reason, in God's time."  "This too shall pass."  "Things will get better." And my personal favorite,  "God's got great things in store for you." ( For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and future." )  Yea?  Bullshit.  I'm already harmed, I have no hope and seriously, can I have just one peek at these remarkable plans God has for me?  Because so far, they suck.  His plan sucks.  I hate his plan.  His plan is stupid.

Chronic illness does not work like this:

YOU say:  You're depressed.  You sit at home all day. Come over to my house and I'll tell you all about the wonderful things in my life.  We'll do something fun.

I think:  I really don't want to leave my house.  I haven't showered in four days.  I'm too exhausted. I have no way to get there and if I did I can't afford gasoline for the car I have to borrow.  I don't think I'll make it there without having to stop and use the bathroom along the way and what if I can't get to one fast enough. I'm entirely too tired to drive safely.  I've been up all night with pain and diarrhea.  I'm not sleeping.  I'm scared. I don't want to come and hang out and pretend to be okay.  I'm not okay.  My body hurts and I physically cannot do anything. But I don't want to hurt your feelings even though listening to all your stories and looking at all the stuff you spend tons of money on will make me even more depressed.  My husband is struggling to work and shuttle our daughter around to her special Nerd school and her job and do everything for her because I'm a deadbeat parent.  My husband is doing the best he can to do just about everything, but we don't have enough money to buy groceries this week.  He needs help.  My husband needs a break.  He needs to be taken care of too and I can't do it.  Chronic illness is hard on the caregivers too.

I actually say:  I'm not feeling great today, can we do this another day?

YOU say:  No, I have plans every other day.  I really think you can do this today.  You're fine.  And get here soon, it's getting late.

I think:  I can't make plans.  I'm unreliable.  I hate myself.  I'll figure out a way to do this for you.

I actually say:  Okay, I'll be there as soon as I can.

This is what should happen:

See the difference?  YOU come to me.  YOU inconvenience yourself because I'm already inconvenienced in 86,392 different ways because I am a sick person. Come to me.  Sit with me.  Lay on the couch with me and watch a movie.  Brush my hair.  Rub my feet.  Tell me all the things you love about me.  Offer to do my dishes or run the vacuum.  Laugh with me about the stupid things my dogs do during the day.  Stay with me at my house, where I am comfortable, and talk to me about things that I want to talk about.  Stop showing off your perfect life for five minutes and focus on me - just me.  I'm sick.  I need help.  I need special treatment.  I need special considerations.  Just hold my hand.  Put your arm around me.  Hold me.  Make me feel like I'm worth something.  Pet my dogs.  Hug my husband and thank him for taking care of me and doing the best he can.  He is doing everything he possibly can and you know what, he has a chronic illness too.  He's had two brain surgeries and has irreversible nerve damage and chronic pain and numbness because of it. There are life long repercussions from nearly dying from bacterial meningitis, staph infection in your blood and a Syringomyelia caused by Chiari Malformation.  He's not in much better shape than I am.  He's a champion.  (Thank a Vet?  Hell, THANK A CAREGIVER!)

No, I don't want your pity.  I don't want you to feel sorry for me. What I do want is your compassion.  I want your understanding.  I want your help.  I want you to know that just because you say "it'll be okay",  right now it is very, very far from being okay.  Just because I laugh doesn't mean I'm not dying inside.  Just because I show you a happy smile and seem interested when you tell me about the new things you just bought or all the great things you are doing, doesn't mean I don't want to punch you in the face because I can't afford to go to the doctor and get my medication right now and I know you could help me but are choosing not to.  It also means that when I am alone I am going to fall further into depression because my daughter will be home soon and there is nothing in the house for her to eat.  It does mean that I am going to cry myself to sleep again tonight because I have only have one roll of toilet paper and it's only Tuesday and my husband won't get paid until Friday and I've been so sick lately I'm using a whole roll myself every day.  Think about what your actions and what you are saying is doing to me.  To sick people in general. 

So that's that.  That's what's in my head, in my heart.  That's my despair and my wish for others to understand. To every other sick person out there, I'm truly sorry you are sick.  And I promise, I'm going to continue saying all the things that most others just keep to themselves.  I'm tired of being the only uncomfortable one.

At least you don't have cancer...

Monday, November 16, 2015

Money makes me really, it does.

Why does the status and severity of my health problems wax and wane depending upon my financial status?  I see the doctor and I'm somehow in devastating peril that will cause me to need many more visits to the doctor, many, many expensive tests and bottles upon bottles of medications.  However, when it's time for another appointment and I don't have my co-pay and I call and let the office know this, I need to reschedule my appointment, I am all of a sudden cured.  "Oh, well Doctor doesn't have an available appointment until three months from now, would you like that one?"

Really?  I thought it was imperative that I saw doctor in six weeks.  I thought doctor wanted to make sure I was doing well and make adjustments to my medications, if necessary, so doctor needed to see me now.  I need a prescription refill of something that doctor said I couldn't just stop, but you won't refill it unless I come in and physically see doctor.  What do I do about my medicine now? Oh, I'm no longer a concern when I don't have my co-pay at the time of my visit, I see.  It isn't as important for my medication levels to be checked and for the doctor to even look at my chart now.  I can immediately stop this medication now because I can't afford to come in and see doctor to get it refilled.  Fantastic.  I'm feeling better already.

If the government would get it together and get my disability started I wouldn't be in this problem and I'd be able to take care of myself better.