Tuesday, February 19, 2019

Traveling and Poop

As a rule I don't travel much.  I can't even go to the grocery without having to sprint through the store like Usain Bolt to get to the bathroom.  I did develop the ERPK (Emergency Roadside Potty Kit - See below on the right for more information) for traveling emergencies, but having that isn't always practical to use and doesn't always ease the anxiety that is associated with traveling.  Especially when you are with other people.

Recently, I have been selected to participate in something that has given me the opportunity to travel and this means not only getting to a specific destination, but also staying in a hotel room - possibly with other people.  Being in close quarters with people you barely know while you suffer from chronic diarrhea is a nerve-racking experience, even if those people understand. My anxiety constantly makes my brain obsess about things like noises and smells.  I wonder: does the bathroom fan work, will the toilet flush, how private will the bathroom be really?  Then there is the walk of shame coming out of the bathroom once I've finished doing my business. Will the other people say something, will they be cool about it, should I make a joke to deal with it or just act like nothing happened? All these things swirl around my head when I just think about traveling with other people.  Even on family trips I always had a lot of anxiety about being in a hotel room because of these very things - and that was with my own family.

I have been asked how pooping still bothers me so much after having Crohn's for this long and I honestly don't know.  I guess maybe it shouldn't.  I have said a million times - everybody poops.  No one's poop smells like roses and no one can have diarrhea without make terrible noises and smell.  However knowing this doesn't make me feel less embarrassed.  Most often when I'm in a public restroom I have to remind myself that I'm never going to see those other people again so it doesn't matter what I do in there.  Who cares if it smells. But that doesn't always work.  I don't have a choice about going to the bathroom.  When and where it happens is all up to the Bowel Gods and I have zero control.  But using a public restroom and using a hotel room bathroom are two very different scenarios.

I think the majority of my embarrassment is my issue though and not other people's.  I wish there were some way to make it not so.  I wish I could realize that it really doesn't matter and anyone who makes it an issue or has something negative to say, more than just a joke to lighten the mood, is not worth even worrying about.  But when it comes down to sitting on the toilet and knowing what's going to happen when there are other people just mere feet from me separated by barely a wall and a thin door, I cannot help but feel embarrassed and somewhat humiliated that I just can't hold it or wait until another opportunity.  It doesn't bother me when other people poop.  It doesn't bother me if I had to stand in the same room with them while they poop, let alone be on the other side of that thin door.  I don't care at all when I'm not the one on the toilet. So why do I think other people care so much?  It's just poop, right?  And EVERYBODY POOPS!

Monday, February 18, 2019

The Mighty

The Mighty is a website that publishes articles about all kinds of illnesses.  I have wanted to have something published on their site for years but never had the guts (no pun intended) to send something in.  Well, I did and within one week they had published my article.  I'm beyond excited.  Big shout out to my cousin, Kimmy, because she was the reason for this article.  Thank you to The Mighty for publishing me.  You made my year!  Check out the article H E R E.

Wednesday, February 13, 2019

In The Mind of Anxiety

I've read a lot of articles about what it's like to have anxiety and a lot of them are very accurate.  Describing the way anxiety takes over your thoughts, almost removing your basic human ability to reason and think of nothing other than worst case scenarios, can be difficult to describe as well as understand.  I am going to share with you how my mind thinks when anxiety takes over and how my train of thought goes off into directions that are not only totally unfounded and completely ridiculous, but also completely logical at the same time.

This is the point where they say ***Trigger Warning***  sooo, there's that.

I was invited to go to a meeting out of state.  My brain distorts how I process this information and makes decisions about it based on anxiety.  I don't just think, "This could be a scam."  I think, "This is a scam.  It isn't real.  You are being catfished into a human trafficking ring and you are going to get taken to some far off land and never heard from again. You are going to get on an airplane and if you don't shit yourself three times during the boarding process, the flight will crash a you will die.  If you don't die in a fiery plane crash that takes out at least nine city blocks and creates an insurmountable number of human and animal casualties, you will be whisked away to a different location than you think, and then you will be forced into slavery. Because here is every statistic you ever learned about human trafficking....   And since that's not bad enough let's not forget that when you are trafficked no one will understand that you won't make a good slave because you are sick all the time and you will get tortured because you are too fatigued and in the bathroom too much. Wait! Will they even have bathrooms where you will go?  Probably not.  No, that's crazy talk.  That won't happen.  You aren't even  going to get through airport security or board a plane without having to use the bathroom 14 times during the times they say you can't.  You know, the half hour process where you have to wait on the plane and let the flight attendants go through and close all the compartments and tell people to put their seatbelts on and their tray tables in the upright position and prepare for take off.  What are you going to do?  You can't use the bathrooms then.  You can't do this.  You are going to have a major accident.  Then you'll make a scene on an airplane and they will call TSA and you will get tazed on the airplane to make an example out of why you shouldn't make a scene on an airplane.  Other passengers will capture the exchange on their cell phones and post it to YouTube and you will become a viral sensation but only so people can make fun of you and laugh at you.  You will be the subject of three new memes and a five GIFs with funny tag lines about shitting yourself on an airplane.  This isn't getting the word out about Crohn's disease in a positive light.  All because you want to go to a meeting out of state.... "

Yes, really.

And it only takes about ten seconds for my brain to explode into this kaleidoscope of random events that will, more than likely, never happen. It's no wonder I don't sleep. All this anxiety is just one big, long run-on sentence with no real beginning or end.  It continues in a circle of potential "what if" scenarios but also backed up with facts and statistics that I somehow know.  It's confusing and frustrating because I know when my anxiety is causing irrational thoughts, I just don't know how to stop it from happening.  It's a continual fight just to keep myself in a basically rational state of mind and not fall down the rabbit hole into panic.

It isn't just one day of anxiety either.  It won't be me sitting in an airplane fretting until the flight is over.  For me, it isn't just sucking it up and doing something I don't want to do for a minute like emptying the cat litter or getting that pesky flu shot. It is literally all the days leading up to that one day. It's the fret and worry and concern and over thinking that is involved in mentally trying to prepare for every possible scenario that might occur in that one day; but also knowing I will never be fully prepared enough so I start freaking out about that. Then it's the actual event itself, which is almost never as bad as it seemed like it was going to be all the days, weeks, or sometimes months before that I worried about it. Except even knowing that doesn't ever stop the worry and it doesn't end there. It's also all the days after the event suffering extreme exhaustion and the need to come down from the high levels stress and anxiety and all the interaction with other people. The physical fatigue and genuine body pain from having to endure such a distressing ordeal coupled with the havoc that it all wreaks in my gut puts me out for days after.  It's all of those days of anxiety and it's fucking exhausting.

That is just a small glimpse into the mind of my anxiety and how it causes me to think.  I'm getting on the plane though, because I need to conquer the fear and prove to myself that I can do it and nothing terrible will happen.  Anxiety be damned.  So here's hoping I escape being human trafficked because I don't know anyone with "a particular set of skills". 

(Note to self, make friends with someone with skillz!)

Friday, February 1, 2019

The Perfect Cure

I cannot tell you how many emails and comments I get providing me with information on cures. Cures for Crohn's, Colitis, IBD, IBS, Gluten Intolerance, Celiac Disease, Diabetes, and even Cancer and HIV/AIDS.  I don't know if it bothers me more because I know there probably is a cure or because maybe honestly there isn't.  Or because if it was as easy as taking the supplement or herbal remedy, trying the diet or reading the book then no one would be sick and the world would be such a better place.  Anyway, this meme sums up how I feel about getting these messages pretty nicely. Enjoy.

Monday, January 28, 2019

Weighty Matters

I saw Dr. GI the other day.  He walked in an looked at me and said, "Jen, you're disappearing!"  I just put my head down.  Yea, I get it, I've lost weight.  But disappearing?  Not really.  I'm just not eating very much. I can't.  I have recently been told by friends I am "tiny" and I "eat like a bird" and now my doctor said I'm "disappearing".  It's been decades since I have heard these kind of comments.  I haven't been "tiny" since shorty after I was diagnosed with Crohn's.  I still wouldn't describe myself that way.  I honestly think that the clothes I fit into now are mis-sized because there is no way I am that small now.  I think I just still view myself as a plus sized girl.  And there isn't anything wrong with being plus sized.  I'm sure I'll be there again one day.  My weight just goes up and down.  Right now it's down.

Dr. GI realized that within the last year I have lost nearly 8 stones without trying, he actually said "Holy shit that's a lot of weight to lose not trying!"  My doctor actually said "holy shit" about my weight.  Then he said that if I still weighed what I did a year ago and walked into the office with the same symptoms I am currently having, he wouldn't think twice about it.  He would chalk it up to my body doing it's normal thing.  But now that I am thinner he said he cannot be so "cavalier" about my symptoms.  Wait, was I just fat shamed or skinny shamed?  I don't know if he is looking at the issues and including the weight loss as a symptom or if he actually can see me as a Crohn's patient now because I don't weigh well over 200 pounds anymore.  Either way, I think that comment was bullshit.

I had several legitimate flare ups of my Crohn's disease when I weighed more than I do now.  My weight didn't make me suffer any less and it didn't make my symptoms any less important or any less real.  Every patient should have the doctor treat them based on their symptoms, not based on their weight.  Aside from Crohn's related issues, I don't know how many times I would see a doctor for my Fibromyalgia or depression and their advice was to lose weight.  Now the doctors are concerned because I've lost weight.  I can't win.

I am inclined to believe that the doctor is looking at my weight loss as a symptom along with the stomach pain, nausea and diarrhea.  If you factor it in as another issue I'm having, it does appear that I could be having a Crohn's flare up.  He's also concerned that the stricture I had repaired a little over a year ago could be back.  I'll be going in for a small bowel follow through in a few days to reassess that area.  Though the CT scan I had done before Christmas when I went to the ED showed nothing.  If the SBFT takes longer than my normal 15 minutes, I guess I'll know if the stricture is back.  I really hope it isn't because I'm thinking the only other alternative to fixing the problem is surgery.  I won't have the problems fixed during a colonoscopy again because that was entirely too painful.  More painful than surgery?  Probably not.  Scarier?  Yes absolutely.  Fearing he perforated my bowel was way too freaky and I'm not going down that road again.

Dr. GI said that functionally I do have issues that would explain my symptoms outside of the weight loss.  The IBS, the bile salt malabsorption and the lack of a gall bladder are all logical explanations. However, those functionality issues wouldn't cause such a drastic shift in my weight.  Stress also could cause some of the issues and even a little weight loss, but nothing like what has happened. So we'll see.  And I'll post about it.  Bring on the barium!!!

Thursday, January 24, 2019

When things get better

It's been years since I have actually felt good.  I can't remember the last time I had a stretch of days where I felt like a normal human being.  You know, just two or three days where nothing really hurts, you feel a little bit motivated and energetic, you can tolerate food, there is no nausea, and you don't go to the bathroom a million times - nothing major.

Recently though, I actually had a stretch of about three days where I experienced normal bowels.  I don't know what happened. It definitely hasn't happened since and I have no idea how to make it happen again, but it was so weird and so great.  It's amazing what becomes normal to you when things aren't right for so long.  And it's more amazing how quickly you can get used to things being the way they should be - like when you only poop twice a day.  What?!?!

So what happened?  I still don't know.  I had a 72 hour window where I literally pooped like a normal person.  I went over 18 hours without going to the bathroom. A couple times!  I wasn't in pain, I had no blockage, I didn't take any medication, I didn't alter my diet, I was even under a moderate amount of stress.  I just didn't have to poop.  It was the most bizarre thing.  And I really wish I could make it happen again because you can do a lot of things when you aren't tied to a stupid bathroom.

I didn't realize how much I wasn't doing because of my illness(es).  Sometimes I forget how much being sick has impacted my life because being sick is just normal for me.  But for those three days I remembered what it was like to have normal bowels.  Just having a small taste of living like a healthy boweled human has made me realize that I really miss having a life that doesn't revolve around being sick. I miss being able to make plans and decisions based on the things I want to do, not based on where the bathroom might be and how bad I'm going to be feeling that day. Or how many days it will take me to recover from actually doing the things I want to do.  Or how it takes me out of my comfort zone and I freak out.

Having to always plan around a bathroom or what I can or can't eat or what pain level I'm operating at is more than a hassle. It prevents spontaneity and it also affects making plans because my body is so unreliable. Physically as well as emotionally.  Because the anxiety always happens at the worst time.  I swear it's the herpes of mental health issues.  Worst. Possible. Times.

Thanks to my anxiety, not pooping a million times for those few days wasn't easy for me.  I kept wondering if something was wrong.  It was too good to be true and I was suspicious.  I never not go.  It was a shame I couldn't just enjoy the not going. But that is the nature of the mental aspect of chronic illness.  The part that, I wish more than anything, I could let go of and not have to deal with.  I would rather poop twenty times a day than to have diarrhea of the brain and not be able to stop incessant worry and intrusive thoughts that are nothing more that irrational scenarios and rehashing things that can never be undone anyway.  It's all pointless worrying but it can be more crippling than anything physical.

Anxiety has stopped me from doing far more than my bowels have stopped me from doing, and that's saying something.  Knowing how irrational my thoughts are when I am completely overwhelmed and cannot seem to navigate my way out is the worst part for me.  Just because I can recognize when my anxiety is causing me the problem, doesn't mean I can control it. So it is definitely something I'm really working hard on trying to fix.

Hopefully, I will have more days like those three days and I can get used to feeling like a normal person.  But for now, I am really going to try to live around my limitations instead of letting them make all the decisions.  We'll see how well that works.

Thursday, December 27, 2018

Yuletide Scope

My Christmas Eve EGD showed some moderate gastritis - irritation and redness in my stomach.  No ulcer though he did take some biopsies.  I haven't heard anything about the biopsies so I am under the assumption everything was normal there.  I was given a prescription of Bentyl and told to try and keep my weight steady and not lose anymore. It's not like I was trying to do that to begin with.  Maybe if I try to lose I won't, seems to be the way it always works.  Anyway, that's the scoop.  I go back to follow up after the first of the year.  Meanwhile, I'm still having pain after I eat and a lot of the time when I don't eat.  New year, new me?  Not really.

Happy New Year!!!