Saturday, March 14, 2015

Crohn's and IBS - A Duel at Sundown.

While laying in bed not sleeping at 3:30am, I decided maybe I should blog about my multiple intestinal diagnoses.  It might be a thing other people need to know about.

Currently, I have active Crohn's disease in my colon.  I used to have it in my small intestine and colon intersection but now it's moved lower into the colon.  Crohn's is bad.  Hence the blog.  But I also have Irritable Bowel Syndrome (IBS).  Kinda the same but totally not.  Treatment for these two conditions are the total opposite from each other.  One you avoid fiber and anything with a consistency more than applesauce, the other you need fiber to make you feel better and for your guts to work right.  But it will kill you if you take fiber and eat fiber and try the whole fiber thing if you have Crohn's.  So you can see having both is a total win win scenario.  Ok not really.

How do I know what's causing the problem?  Easy, I don't.  Never know.  Hard to tell.  Although when the Crohn's is in remission and you are having gut problems it's probably the IBS.  But it could be the Crohn's flaring so it's best to get nine million invasive tests that may or may not show anything, but do allow you to drink things off the periodical table of elements.  Seriously.  It's a crap shoot basically.

The two different illnesses cause mostly the same symptoms for me.  Crohn's brings a lot of pain and diarrhea.  IBS brings a different kind of pain and diarrhea - constipated diarrhea.  You know, the kind where you have to go but you can't really make anything come out but your butthole is on fire and you know you are going to explode any minute but you're afraid to because you know it's going to burn like fire because you butthole is already burning from the molten lava that won't come out.  Yea, that's constipated diarrhea.  Much different from regular diarrhea where you just spew forth like an erupting volcano that has no shut off valve and can come any time, even if you're not ready.  Like when you are sound asleep.  Yea, that's fun.

The pain is different also.  Crohn's pain for me is a deep stabbing, achy pain that lasts and lasts.  It feels like your insides are burning and I'm lucky because my Crohn's pain radiates from my stomach all the way through my back.  My IBS pain is somewhat bloaty and crampy pain.  Muscle spasms that hit you out of nowhere.  However, I could be totally off base and have them mixed up.  Who knows.

As you can see, trying to manage both problems is a problem.  It's hard, and I know a lot of people who have Inflammatory Bowel Disease also suffer from Irritable Bowel Syndrome.  It doesn't seem fair we get hit with a double whammy.

More exciting topics to come.  I thought of a million since I couldn't sleep.  Here's hoping I remember them all! 

Friday, March 13, 2015

Do the Survey for Crohn's Research!!

Please fellow Crohnies...

Do this survey I got from my buddy over at Crohnological Order,  so they can gather the latest information about what it's like to live with Crohn's.  The more information they get, the better our future healthcare will be!!  CLICK HERE for survey.  I did mine and I thank you for doing yours!!

Much love,

Tuesday, March 3, 2015


I've struggle with severe depression since I was about 12 years old.  I have been hospitalized three times for depression.  The most recent time I was in the hospital was last year after a suicide attempt.  I held a gun to my head and pulled the trigger. 

I wanted to die.  I just didn't want to be anymore.  I knew, not just thought - I knew, my family would be better off without me.  My husband would have my life insurance so money wouldn't be an issue anymore.  My daughter would be better off without my inconsistent mood swings.  She could have a normal life  My mother wouldn't have to worry about my frantic, sobbing, complaining phone calls.  Life would be so much better without me.  It wasn't just feelings. I knew it as fact in my head.  It was a relief for me to think of dying because it was my only way out. 

My depression had taken me to a place that was not only dark and scary, but it fed me lies about myself and my reality.  No amount of talking to me would make a difference.  It only made me feel more like dying when I was told if I killed myself my family would be devastated.  The way I understood it was if I lived they would have to deal with me being so sick and disturbed forever.  But if I died their pain would only last a little while and then their lives would go on. 

Thankfully, the gun was not loaded, and all I felt was this enormous sense of stupidity.  I couldn't even kill myself right. I was too dumb to know the gun wasn't loaded.  This brought on a different kind of depression.  A more desperate depression and a feeling of complete brokenness.  

Now, I am glad that the gun wasn't loaded.  I'm glad I'm living.  But it isn't always that easy for me.  And it isn't always that easy for so many others suffering from depression and/or other mental illness.

I recently came across this website - Speaking of Suicide, promoted by this Facebook page I follow called Suicide Shatters.  They posted an article about what NOT to say to a person who says they want to kill themselves.  I've heard every one of these things and none of them helped me.  No matter what anyone said I could always justify why suicide was the only answer. Please read this so you know what not to say, and what to say, to a suicidal person. 

Read article here.  It takes five minutes.  It could help you save a life.
10 Things Not To Say To A Suicidal Person

Tuesday, February 24, 2015

Food and Crohn's

A lot of people have commented on my blog with questions and suggestions about my diet.  Some diets work well for some and not others - this is obvious.  But for me it's a roll of the dice mostly.  Due to the fact that I can eat something one time and it doesn't bother me, then the next time I eat it, it can tear me up.  Every day is a new adventure, but I have found that some foods that are almost always ok or almost always not okay.  Plus, I am a very picky eater.  I don't like a lot of things and just recently added bananas to my diet.  I went for years and wouldn't even taste one.   That's why I cannot and do not follow any certain, specific diet.  I just don't like what's offered in most diets. 

Well, what do I eat?  Here's my list:

Generally Good and Safe Foods
Chicken noodle soup
Luncheon meats - turkey/chicken/ham/bologna

Foods I can only sometimes eat
Spaghetti (sauce)
Pizza (sauce)
Taco seasoned meats
Iced Cream
Tomato Soup
Refried beans
Chinese food
Fast food
Fried food

Do not eat unless you want to pay for it foods
Onions/Peppers (I don't like them anyway)
Anything spicier than mashed potatoes
Cream sauces

That's a brief, right off the top of my head list.  I'll probably add to it. Now you know what I do/do not and can/cannot eat. 


Monday, February 23, 2015

Helga Porter

No one will understand that title but me.  That's okay though.

I'm still on the Entocort and I finally got my Pentasa as well.  I'm feeling better and going to the bathroom a little less than usual.  It's also more formed, not completely but at least not totally watery like before.

It's been super cold and super snowy here in Ohio.  I'm enjoying the weather but I'm ready for Spring.  There is a lot to do outside and with the lake right out back I'm ready to fish!

That's the latest update for now.  I shall post more soon.

Monday, February 9, 2015


Well I ended up having to have the colonoscopy.  It was gross.  But it showed that I have mild ulcerations of Crohn's disease in my colon just past where my anastamosis is .  (Where they hooked my two intestines back together after my resection.)  The Entocort is the best med for me to be on right now, however, Dr GI also wants me to have Pentasa for maintenance but my stupid insurance won't pay for it.  They say that they won't pay for anything more that 4 pills a day.  Pentasa is given at a dose of 4 pills 4 times a day.  Apparently the MDs at the insurance company know something my doctor doesn't.  Oh, what's that?  There aren't MDs at the insurance company making these decisions?  They are just corporate desk jockeys making medical decisions about peoples' lives without so much as a nursing degree?  Oh that's right.  That's how America works now.

Soooo, it's a waiting game that my husband is fighting with the insurance company over for me.  We'll see who wins.  But I'm not bitter.

Thursday, January 22, 2015

If it walks like a duck and talks like a duck - it's Crohn's disease

Today I'm in shock.  I'm utterly surprised.  I saw Dr. GI yesterday and talked with him for about 45 minutes.  He said a few things to me about my medical history that just floored me.  He said that what has been going on in my belly is NOT gastritis.  He said that several of my previous colonoscopies have shown actual active Crohn's disease.  He said that the bloodwork doesn't always show the inflammation going on with active disease.  He said CT scans are not good to look at intestines - solid organs like livers and kidneys yes, but bowels not so much.  He said my CT scans could be showing active disease that is being dismissed as "insignificant".  He said my symptoms are very spot on for a classic Crohn's flare up.  And then he said he was going to treat me for a flare up.  With real Crohn's medicine and not something to just appease the situation.  FINALLY! Real meds to help!

I started my Entocort this morning and will hopefully be able to get my Pentasa later this afternoon. Our stupid insurance is not wanting to pay for it but hopefully that will get worked out soon. I do have to have a small bowel follow through but that's fine.  It's better than a colonoscopy.  After talking with Dr. GI for a while he just came to the conclusion that if it walks like a duck and it talks like a duck it must be Crohn's disease.  He actually said that.  He's really an alright guy.  Kinda funny sometimes too.

I cannot wait to start feeling better.  It's amazing how much better I fell already knowing that I am not crazy  Knowing that the doctor really wants to help me.  I'm happy that my body decided to walk and talk like a duck.