Daily Living With Crohn's Disease

So I got a call from my nurse a few weeks ago after being seen and he said that my doctor wanted to do a liver biopsy.  Well, this just floored me.  I had been sick a few years earlier with a hepatis from a drug that made me very ill.  I would sit up all night not being able to sleep, feeling like I had the flu but nothing much becoming of it other than being very sick.  I called back the next day and asked how they do it, well he went on to explain that they put a needle between the rib cage and biopsy.  Well, needless to say I don't have enough faith in my doctor to let him do that.  Then a week later I called and wanted the full results of all my labs and she said everything was fine.  Now wait a minute?  A week prior they wanted to do a liver biopsy and this week it's fine.  When I pointed that out to her she didn't have much to say.  That was when I lost all hope in getting decent care in the area that I live in. The major clinic in my dept is inundated with patients and you cannot get a return or initial appointment for months.  So, is my liver sick?  I cannot tell for sure.  I have been sicker than usual this week with most of my time spent in bed.  If it continues I will go into my local family doctor who has earned my trust and respect.  With all of that said, these big gun drugs are hard on your system so nothing would surprise me.

Living Daily with Crohn's Disease How many is too many?

So what is an average day of bowel movements.  I can go up to 20 times a day.  I have been awake 2 hours and have already had 3 trips.  You wonder with as little as you eat to keep the pain at bay where all of this comes from, but somehow it's there.  Early on in this disease it was mostly in the morning when I was trying to get the kids off to school and on to work.  I remember telling the kids to hurry get out of the car I had to get to a restroom, then going home and then finally leaving for work with a change of clothes.  After having to go and buy clothes to wear once at work, I learned a valuable lesson to carry a change with me.  Then as this disease progressed I can no longer have a reprieve during the night, it's all hours and all times.  Ask any Crohnie and they will tell you every restroom within a short radius of their house.  You have to know as it can be crucial at the most critical times.  For a crohn's patient, it's not oh I need to have a bowel movement sometime soon, it's oh I need to have a bowel movement now and it will not wait!  In line at the grocery store, getting your hair cut, at the doctors etc..., so you find yourself cutting out the things you can do without.  I cannot make appointments and keep them, sure enough I will be sick and flaring when I need to leave or be there.  Hopefully people will understand the need to isolate ourselves.  We are not rude, we are not trying to dwell in our disease we are just living the life with way too many trips to the restroom.  It is after all our reality.

Living Daily With Crohn's Disease

Okay this may be a somewhat minor issue, but I am going to talk about it anyway.  After years of infusions and being stuck many times just to find a vein that may or may not collapse I am now very proactive at speaking up when I need to have an IV or blood draw.  Fist of all, most of us Crohnies are usually somewhat dehydrated because of flaring, so finding a vein can be even harder.  Many of us our probably like myself and have had so many draws or pokes that the places to choose from are becoming limited.  I put up with just anyone in the Chemo room trying me and then finally always having the head nurse come over and take charge.  I was going there for IV treatments.  She would immediately do what everyone else should have, heat up a bean bag in the microwave and let it sit to enlarge my veins.  Once I realized my hands were the best place, I would literally offer them up first.  A few times they put the IV's in my lower arms and that hurt like a bitch.  Now when I go for draws I explain that I have crohn's, I am a hard draw and they take the appropriate measures before they draw.  So my thought is just this, speak up, you should not have to be poked 5 or 6 times while they practice on you, we know our body best and need to speak up and take charge.

Living Daily With Crohn's Disease

I am sitting here waiting for a pain pill to kick in so I can function.  I made the mistake of eating some real food yesterday, two pieces cheese pizza and paid for it on the white throne.  When I mean pay for it, crohn's patients just don't have extra bowel movements or diahrea, the reality is pain so horrific you cry and hit the walls to get through it.  With that said, how can we be expected to work.  If you can get through these horrific bowel movements then going back and pretending it didn't happen doesn't work.  I am in so much pain afterwards that lying down and taking something to ease the pain is the only solution. I applied for disability 4 times and gave up and I'm sure many others have.   The anxiety alone in going to work and knowing this will happen is over the top for most people yet you are expected to do so.  I am appalled, dismayed and saddened that not only are you sick but the assholes who make the decisions based upon their educated opinion decide these factors for you.  How about they come spend a day in your shoes and then decide, see first hand if you are really sick or not, seems fair huh?  If it takes them 6 months to decide, surely they have an extra day in those 180 days that would allow them the time. Again just saying, my humble opinion.

Living Daily With Crohn's Disease

How many of us keep track of what our bowels look like.  It's true, it's an indication to us of our flaring.  When we go to the doctors they have a 1 to 5 scale and want us to describe what our bowels look like.  If we don't look, how will we know.  My first indication that something wasn't right with me was way back many years ago and I told my doctor that I thought mucous from my sinuses was coming out my bowels.  She told me to eat more fiber.   Hello!  How many healthy people have green or otherwise mucous coming out their bowels.  For me this is a sign of CDiff.  Very hard to get rid of and very miserable.  Mostly found in nursing home or hospital patients, crohn's patients are known to get this problem too.  Of course blood is very common for me and no longer is alarming to me.  The big D is regular and I even find times when constipation is a problem.  Sometime it can really run a whole gammit (if that's even a word) of symptoms.  One common thing with all of these descriptions is the accompanying pain.  Sorry for the descriptions today, but if you too need to look you are not alone.  

Daily Living With Crohn's Disease and Colonoscopies

So lets talk about what we don't want to talk about.  The dreaded Colonoscopy.  My last experience one of many was horrible.  Before I had always had to drink down the dreaded gunk and make love to the toilet.  Last time they gave me pills that you drank with liquids.  I kid you not, I had to take a bucket in our van and use on the way to my procedure.  Now they wanted me to have another one done recently and I am just so disgusted with my quality of care and the fact that they called me and told me I had to figure out how to get it approved that I cancelled it.  I was warned by a friend whose father had crohns and ended up getting punctured on one of his routine procedure, not to let them use it as a regular routine on me.  Furthermore, I explained that last time I had a procedure it was over the top with the big D, that I had to bring a bucket.  They really acted like they could care less.  Well lets see one of them or their loved ones drive 45 miles using a bucket and see how big of a deal it is.  Needless to say they said I could take the medicine till I ran clear.  Oh really, after how many procedures and now you tell me.  There is a lack of understanding of our daily lives with the people who are in charge of caring for us.  Before becoming a GI they should have to live with a flaring crohn's patient for 24 hours and really see what it's like to be in our shoes, I think the quality of care would be a lot better! Sorry, just saying. 

Living Daily With Crohn's Disease How to Tell Who Your True Friends Are

Quickly upon getting Crohn's Disease you can tell who your true friends are. Family members included.  People who constantly take from your energy run for the hills when they realize it will no longer be about them only.  Not intentionally either..  But the takers will not want to give and given their nature will slowly drop off the planet.  Even true friends, the ones you invested the most in are the first to go.  Family members that you thought truly cared about you, no longer are involved in your life.  God forbid that you complain, I'm sure they are thinking can't you handle a little bowel problems.  I mean really!  How bad can it really be.  Even when you hold back and don't complain or let them know truly what's going on, just in the sheer fact that your energy isn't there and available will change the dynamics of your relationship.  How to tell who your true friends are including family, it's the ones who say how are you doing?  You say, fine and they say, no how are you really doing?  They are saying to you, it's okay to complain, go ahead and tell me the truth, I am here for you.  The friends that call and say I haven't heard from you in a while are you okay?  And it's okay that I have learned this lesson as I spent many wasted years giving my time and energy to people who truly were not what they seemed.