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.  

Tuesday, January 20, 2015

Welcoming a New Year with the same old problems

With this new year starting I am feeling like I always feel every year, hopeful.  Every year that hope slowly fades though, as most things never change when it comes to my illnesses.  This year it has happened so quickly though.  I'm feeling no hope already.

To recap what I am struggling with :  I have a history of Crohn's disease, however it has decided to not show itself on any of the tests I have. No raised inflammation levels, no thickening or blockages in the intestines.  Nothing.  Which technically is good, however I still have all the symptoms.  Pain, nausea, mass quantities of diarrhea.  Problems with no cause, no cure, not relief.  I also have Fibromyalgia which completely overruns my life.  I'm sore all over, totally exhausted and I get winded just walking to the bathroom sometimes.  Unfortunately there isn't much they can do about the Fibro.  Just live with it.  Cue the depression.  I am still very, severely depressed.  I have panic attacks walking to the mailbox and I rarely want to get out of bed.  That's the basics of what is happening to me.

I went to hospital last Thursday because of the stomach pain, nausea and diarrhea.  They did a CT scan which showed nothing.  They sent me home with the diagnosis of chronic gastritis.  This seems to be all that they can come up with that is wrong with me.  It's not my first diagnosis of gastritis but it is the latest one and that got me thinking. I need help but the doctors don't see it that way.

Here's the thing.

I got home from hospital and called my GI office and let them know what happened.  They called me back several days later and told me that Dr. GI wants to schedule me for a colonoscopy and an EGD. Why?  The CT scan showed nothing.  They want me to endure these two tests every six months and they NEVER, EVER show anything but an inflamed stomach lining.  That's it.  Even when I had three feet of massively inflamed and infected active Crohn's disease in my guts these two tests showed nothing.  Why do I need to do this?

Here's my idea - put me in the hospital for three to five days.  Keep me on clear liquids and IV fluids, pain and nausea meds and let my intestines rest.  Don't aggravate the situation by putting me through a colonoscopy prep and shoving tubes and cameras in places that already hurt.  Help me out and let my insides rest.  Well, my idea was shot to hell because apparently my doctor cannot do that.  I have to go see him in the office tomorrow and defend the reasons I am "refusing treatment" or so they called it.  Excuse me, but a colonoscopy and EGD are not treatment.  They are torture!  Being in the hospital on fluids and pain/nausea meds is treatment.  Why won't they listen??

This, in turn, causes the depression to seep deep into my bones.  I lay awake at night listening to the cars driving on the highway, deep in the distance, trying to lull me to sleep.  I cannot get comfortable but I am too exhausted to re-position myself.   My body aches.  There isn't a place inside that doesn't feel pain.  Even the places that shouldn't hurt do hurt.  My heart aches for any kind of relief.  One questions rolls around my mind over and over, "is it going to be like this forever?"  From what the doctors say - or don't say - the answer is yes.  How do you have hope when the answer is yes?

Thursday, December 25, 2014

Look for a new look in 2015!

I cannot quit this blog.  I apparently just needed a break for a while.  I am going to be making a few changes but please look for the new and improved Jenni's Guts Blog this new year!  I'm excited and have tons of topics to write about.  I'm looking forward to this new year like never before.  I've always dreaded a new year, but this new year seems to be different.  I can't wait to share it with you.

See you soon!!
Jenni 

Thursday, December 18, 2014

Moved...finally

We finally got occupancy of our new little house in the beginning of November.  We had to clean everything out because no one lived there for over a year.  The man that lived there prior had passed away and everything he owned was still in the house.  It was full of junk, furniture, food, everything you can imagine.  The hot water heater had leaked or exploded (or something) but we knew that going in.  It took several days to just clear out some of the junk so we could be able to move around inside.  The outside became our trash pit. I have so many before and after pictures to post.

We had to completely rip up our bedroom floor because of water damage and so we could fix the hot water heater. This was all up to my nephew to do the plumbing and my brother in law to do the floor.  Jay, the hubs, got a crash course in everything and helped everyone.  Once that was done we were glad we had hot water - or any water for that matter, and a floor.  We went about a week with a huge hole in the floor from where the water heater went.

The next big task was to get our daughter's bedroom carpet cleaned and the walls painted.  That didn't work.  We realized we needed new carpet and new padding.  The original carpet was not coming clean.  So we got new carpet and laid it ourselves.  Well, Jay and my nephew laid it. It looks better than professionally laid carpet if I do say so myself.

Next up, the toilet in our one bathroom needed replaced.  Once we pulled the toilet it was evident that the bathroom needed a whole new floor as well.  Seriously.  So again my brother in law and nephew and husband did the work.  At the speed of sound too because they all know how important it is for me to have a bathroom! These guys are truly amazing.

What about the kitchen walls and floor?  A nice coat or two of white paint made the kitchen look a ton better.  The floor was a different story. It was pretty ugly linoleum, but we could live with it for a while.  Well we decided not to live with it and put in some hardwood flooring.  Myself and the hubs started that job and my nephew helped finish it.  It was a pain getting all those little pieces to fit in properly together.  Many broken pieces, wrong sided sawed pieces and many thrown in a rage pieces later we had a beautiful kitchen floor.

Now the living room.  The carpet was disgusting and if our daughter's carpet wouldn't come clean there was no way this would either. The previous owner smoked, in the house, a lot.  We still had to wash all the walls and paint what we could.  But once we pulled up the old carpet and padding in the living room, don't you know that damn floor needed some replacing too.  Thank God it was just one side.  My brother in law fixed that too.  Then we had to get carpet.  And it was a bigger space so we had to call on a once removed cousin to come lay that carpet.  Knees were injured during the previous carpet installment so we had to find an outside source.  But we did and the carpet looks great!

So finally, after six weeks of constant work on our new little house, blood, sweat, and many tears later, we moved in.  We moved on a Monday night in the cold, rainy December weather of Ohio.

Now in the midst of all this repairing and remodeling we did lose a family member.  Lazarus, our huge black shepherd was diagnosed with an abdominal tumor and had to be put down.  It was awful. He was the third one in the last six months.  But we still have Loki the pup and Ellie Rue the husky princess with us and they seem to be adjusting okay.  Ellie isn't fond of change, but really, who is?

We still have only one bathroom but soon, I hope, we will add another one.  The stress of all of this seemed insurmountable.  I've lost about fifteen pounds just from constantly pooping from the stress.  The sadness of losing our home and a great majority of what we owned, and three of our pets in the last six months, plus all the debt alone should have sent me right back to the whack shack. Mentally, I am  beyond exhausted.  But then trying to find all the supplies we needed, the flooring, the hardware, the help...looking back it doesn't seem that bad; but it was.  There were so many days when I never thought I would be sitting in my own home warm and comfortable with my Loki by my side writing this post.  So much has happened in such a short amount of time.  It's just now starting to feel like home.  We have a beautiful lake right out back and we can see it from our bedroom window.  It's a very stress relieving view.  I can't wait until warmer weather so we can fish and start building our deck.

I just want to express my gratitude to my brother in law, Tony and my nephew, Joel for all of their help.  If it weren't for the two of them I don't know how we would have ever moved in.  The hubs about broke his back to get everything ready for us and still continued to work full time all week regardless of the hours he worked on the new place in the evenings and weekends.  I really thought he was going to just collapse a few times but he didn't.  He's a beast!  Thank you guys!

I also really need to thank my mother in law and father in law for their financial contributions.  Seriously, you will be paid back if it kills me!  We wouldn't be in this home without you two and I love you both so much!  Thank you!

For everyone else who helped with little things or things I don't even know about probably, thank you!  Your help means so much!

The moving disaster is finally over and we are all settled in our new home.  Now if I could just get that disability things would be a lot easier.  But for now I am just grateful.  Very, very grateful.

Friday, October 31, 2014

Halloween tricks but no treats.

Just a quick update.  I got a letter from Social Security the other day that said they can set up my hearing date via teleconferencing.  I was stoked,  I thought this would be a great way for me to actually get my name on the docket in this century.  The very next day, however, I received a copy of a letter from my attorney that she had already sent, prior to my knowledge, to Social Security that stated she will not do the hearing via teleconferencing and she demands an in person hearing because that is her preferred method.  Didn't even check with me, just sent this directly to Social Security.  I figure with that kind of response I am sure to be moved back so far on the docket that maybe the judge's grandchild will actually hear my case.

Because I have been out of work for just 2 months shy of a year, we are barely scraping by on one income.  It is not my husband's fault.  He has a great job and makes decent money, however he has to pay for all the health insurance (that barely covers anything anymore) and by the time he actually brings home the money it is practically half of what he makes.  It's ridiculous. And sad.  And about fifteen cents too much to get any kind of assistance.

We are in the process of losing our house.  We are trying to find cheaper accommodations, but things just don't seem to be going our way.  It's just one roadblock after another.  I'm not sure what we are going to do at this point.  Things are looking quite bleak and I blame myself.  Because it truly is my fault in all honesty.

No I didn't choose to be sick, I know that.  But if I wasn't sick none of this would be happening to us.  My body has literally forsaken me.  I am so angry and so stressed and of course, that only exasperates the situation.  I am having more bad days than good but for some stupid reason unbeknownst to me, I keep waking up every day.  Is it wrong to hope for the zombie apocalypse so money will no longer be worth anything and be as totally useless as I feel?  Besides, I hear brains don't give you diarrhea.

Happy Halloween all!

Wednesday, August 13, 2014

Another year has started, Good bye.

I'm a bit emotional today.  My daughter's first day of school is today.  She's a sophomore now.  I feel like she just finished second grade.  I can't believe she is so grown up.  Taking advanced classes like geometry and biology.  Taking her third year of Chinese - a college course of Chinese so she will get college credit.  She is so smart and I am so proud of her.  She has an internal drive to well; to be her best. I admire that.

So it's a new school year and I've started the school year off by having blood work, stool samples and a CT scan of my abdomen and pelvis.  All came back normal, of course.  Well, sort of normal.  My CT scan showed that my colon/bowels are "flat" which is consistent with someone who has inflammatory bowel disease.  I asked my nurse practitioner about it and she said that it means my bowels are weak; worn out.  That kind of scared me.  It got me to thinking.  I'm sure this is because of the mass amounts of diarrhea I have, the cramping, the gas pains and stretching my intestines endure.  What will my bowels be like in another 20 years?  What if they cease functioning all together, what then?

My Crohn's is in remission right now.  I still have to go to the bathroom 7-12 times a day, but I guess that's just par for the course with me.  No one can seem to figure out why and they aren't treating it with anything other than Imodium, Lomotil and hope.  I continue to have stomach pain which has no cause and no treatment. They won't even give me pain medication for it. So that's it.  This is how I am supposed to live.  I'm done with tests, I'm done with doctors, I'm just done with it.  I'm sick of fighting and struggling and dealing.  I am just going to have to accept that physically, this is how I am going to have to live  If the stupid disability people would just get me a court date and give me my disability things would at least be a lot easier financially.  We'll see what happens with that - next year.

I realize I sound a little less than positive and encouraging and maybe I am.  But when faced with the knowledge that my life will physically never get any better, there is no treatment, no drugs, no surgery, nothing they can do to improve the symptoms,  it is less than encouraging.  It's downright sad.  I'm worried about how my body will continue to deteriorate over the years and how much worse I will get. 

I'm probably not going to blog much anymore, but I'll definitely keep the blog active so people can read it.  I know I have a lot of good posts that may help someone feel not quite so alone.  I just feel like since they cannot pinpoint exactly what is wrong, and can only tell me "It's not your Crohn's", it's a little silly for me to continue a blog about Crohn's.  So many others with actually flaring and active Crohn's/Colitis have blogs that are great.  They can discuss new meds, old meds, new treatments and diets, and all those kind of things that I can't.  I can only say "I don't feel good" and "I have diarrhea", so many times and so many ways before it gets old.  And I really have nothing else to say but that.  So this is the conclusion (for the most part) of Jenni's Guts.  I may post a few things now and then but unless it's something more than my not feeling well, you won't see anything new on here. 

I love you loyal readers.  I am so proud that this blog has had over 55,000 page views.  I'm grateful to my 118 followers.  You've made me feel important and loved.  Thank you for reading and be well.  Much love to you all!!

Jenni Schaeffer - author of Jenni's Guts Blog

Friday, July 11, 2014

I'm in heroin withdrawal - sort of

When you are sick a lot you stay home and do nothing but watch TV. Thanks to Netflix I have a large variety of very interesting material to watch. I recently came across a series called Drugs, Inc.  Being a nurse, and a patient, I am interested in drugs of any kind and how they affect your body. Not that I want to take these drugs, just want to know about them. I'm weird. Whatever.

While watching Drugs, Inc., I was able to learn a few things I didn't know about heroin; it's consumption and withdrawal.  These were confirmed by research on the Internet.  One particular site states this about heroin withdrawal.

Heroin Withdrawal Symptoms and Warnings

Heroin withdrawals can be very difficult, even impossible to manage without professional medical assistance. A physical addiction to heroin is marked by the withdrawal symptoms that set in once use is stopped abruptly. Withdrawals from heroin can set in within six to 24 hours after you discontinue use. Commonly reported withdrawal symptoms of heroin include compulsive itching, sweating, nausea, vomiting, anxiety, extreme agitation, depression, cramps, insomnia, restlessness, muscle spasms, cold sweats, chills, diarrhea, fever, muscle and bone pain, yawning and sneezing. The severity of these symptoms can depend on the amount of the drug taken and the frequency.

Let's take these symptoms one by one shall we.  Compulsive itching.  I'm not sure if it's due to some of my medication or dry skin, but I am pretty consistently itchy.  I take Benedryl and Atarax for it.   Sweating.  I sweat excessively in the summer and winter if I get too warm.  Could be a weight thing or medication related but I'm pretty sure it has something to do with the Fibromyalgia.  Maybe I will post on that at a later time.  Moving on, Nausea and Vomiting.  Every day at some point during the day I feel nauseous.  I rarely vomit but the nausea is always there.  After I eat, before I eat, while I poop and after I poop - which we know is a lot.  Nausea is a constant battle for me. Phenergan is a staple in this house.  Anxiety, extreme agitation and depression kind of all go together for me. I was recently allowed to lower some of my depression and anxiety medications.  As you know I was in the hospital for my depression and anxiety recently so it's definitely a huge part of my life.  I struggle daily. I get irritated easily with people and their stupid actions.  I don't understand why people do the things they do.  I regularly want to throat punch people but I don't.  It's  hard for me to control my irritation fits but I've dealt with them for so many years now that I can hide them pretty well. Cramps. Please, Crohn's pain, surgery/scar tissue pain, and IBS far surpass anything you can deem as "cramps".  Oh, did I mention that I get bad charlie horses in my calves on a regular basis? Or my intestines will ball up and spasm so bad I can move? I won't even go into what my menstrual cramps were like.  Insomnia.  Unless I am medicated I don't sleep.  Currently I'm taking Trazadone every night. Restlessness.  Goes with the extreme agitation and anxiety I think.  Muscle spasms.  See "cramps".  Cold Sweats and Chills.  I had a hysterectomy in 2007.  I am nauseous every day.  All of this goes hand in hand.  Diarrhea.  Really?  Need I even explain? I have four different medications I can take to relieve or help with my diarrhea.  But they are not without their own side effects and sometimes they don't even work.  Fever.  My normal body temperature is 97 degrees.  If it goes a few degrees up or down from that I am miserable.  Too hot, too cold.  I am rarely comfortable.  Muscle and bone pain.  Hi, I'm Jenni.  I have Fibromyalgia.  Yawning and Sneezing - whatever.  That's normal if you live in Ohio.  Which I do.

Apparently I'm withdrawing from heroin.  Good to know I'm just dope sick.  

Seriously now, far be it from me to say that living with Crohn's disease, Fibromyalgia, severe depression and anxiety is like heroin withdrawal.  I've never used heroin and have no desire too. I've never withdrawn from heroin so I can't say how intense these symptoms are for them but on paper there seems to be a lot of similarities to what I feel daily and what others with the same problems feel and what the heroin addict feels when they need a fix.  Just making an interesting comparison.