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
Potatoes
Rice
Couscous
Noodles
Crackers
Apples
Bananas
Cantaloupe
Kiwi
Strawberries
Cheese
Chicken
Fish
Beef
Pork
Chicken noodle soup
Luncheon meats - turkey/chicken/ham/bologna
Carrots
Avocadoes
Humus

Foods I can only sometimes eat
Spaghetti (sauce)
Pizza (sauce)
Taco seasoned meats
Yogurt
Milk
Iced Cream
Bread
Eggs
Tomato Soup
Popcorn
Lettuce/salad
Broccoli
Cauliflower
Corn
Refried beans
Chinese food
Fast food
Fried food
Chocolate

Do not eat unless you want to pay for it foods
Onions/Peppers (I don't like them anyway)
Anything spicier than mashed potatoes
Chili
Oats
Granola
Nuts
Pop/Soda
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. 

HAPPY EATING!

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

Confirmed

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.  

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.