Where Will It Lead?

Christmas has come and gone, and now we are quickly approaching the end of 2017 and diving head first into 2018.  New Year's Eve/Day is one of my favorite holidays.  One reason for this is the food involved.

My last post was about taking care to eat in moderation, so I won't go there again but to say that it's probably harder for me to do that with the foods that I truly only see and eat once a year.  And these foods appear on New Year's Eve.  It's food that is not low carb, low fat, low sodium, none of that.  It's more like appetizers and desserts for our family gathering.  This stuff is so good on the taste buds, but so bad for the waistline.  And I love it.  I am adding some fresh veggies to the mix this year though.  Of course, we have some dip for them to make them fit in with the rest of the food we are eating.

Another reason I enjoy New Year's is that we (mostly the family we were fortunate enough to spend Christmas with) have fun.  We let ourselves relax, play games, and that brings joy and laughter.  (And we eat of course.)  How often do you just relax and have fun like that?  I know I don't.  I get into the routine of life.  The house has to be cleaned, food prepared for whatever meal is coming up next, laundry, dishes, taking care of those you love.  Every once in a while, my husband and I will play a card game we enjoy.  But most of the time, having fun doesn't make it on my list of things needing to be done.  It's like I'm just trying to get through one day and on to the next.

And a final reason I enjoy the end of one year and the beginning of another: the reflection of where I've been and the hope of where I could be in another year.  This year, I started this blog.  I had never thought about writing about sharing my Crohn's Disease story before this.  I didn't think I had a story.  To me, my life is rather ordinary and routine most of the time: get up, go to work, come home and take care of my family, go to bed and do it all over again the next day.  Who wants to read about that?  Then, I realized my life now may seem monotonous, but I may look back at this time at some point and find a story to tell like I have with Crohn's Disease.  At that time, I was just trying to get through one day at a time.  I never imagined a story was forming and that it would be worth sharing.  I wouldn't have been ready to share much at that point either.  And what I did share was with those I was closest to and felt okay to share some of the most personal aspects of my struggles.

Where will the upcoming year take me?  I'm ready to see what it will bring to my life and the blessings that await.  May the upcoming year find you all blessed as well!!

Christmas Fun or Folly?

Here we are at Christmas time.  It's a time of wonder and magic for kids, joy, and fun for families, peace and rest for those who have been at the daily grind of work and life.  It's one of the very few days that people allow themselves to enjoy the life they have.  Time is intentionally spent with family and friends.  Gifts are shared among many.  People give of themselves now more than any other time.  And let's not forget the food that is consumed.  Delicious, fulfilling, and dangerous.  Dangerous...?

Holiday foods typically don't lend themselves to the health-conscious side of things.  But to call it dangerous may seem odd to most people.  However, people who have an ileostomy may get the description.  Let's take a step aside from the story of my life that I've been writing and address the wonderful (or dangerous) food we eat for the holidays.

Here's the thing: having an ileostomy has helped my life considerably.  The removal of my large intestine removed the area that would get inflamed and cause horrible flare-ups that in turn would cause the painful, bloody diarrhea to the point that the consumption of water wasn't even tolerable.

A downside of an ileostomy is that blockages can occur.  This, of course, causes much pain.  But if it persists, it can lead to the individual becoming quite ill with vomiting as the contents can't pass through as intended.  This can lead to dehydration.  And the longer it lasts, the more likely a hospital stay is necessary to replenish fluids and get the blockage relieved.

I have not had any blockage experiences to that degree.  Although, I have made poor food choices (or more so the amount that I ate was a bad choice), and that led to horrible pain.  My ileostomy even leaked with one occasion, I imagine from all of the pressure and swelling put on my stoma.

Food for our holiday meals can be chalked full of various types of nuts: peanuts, pecans, walnuts, almonds.  These, for me, are doable as long as I'm sticking to serving size amounts and chewing well.  My mother-in-law makes chocolate covered peanut clusters.  How can I pass up those?  But if I eat a few of those, I probably want to steer clear of other things that might have hard to digest nuts in them.  Moderation, right?

There are lots of fruits and vegetables involved, too.  Again, chew, chew, chew.  And if they can be cooked before consumption, that helps to soften them and make them easier to chew and easier to digest.  Don't eat a ton of oranges or strawberries or corn (or whatever) in one sitting.  Again...moderation.

(Side thought: Why is the healthy food so hard for an ileostomy patient?)

I wouldn't say to avoid any one certain food unless you know it causes you problems with your health in whatever situation you deal with.  For me, the one food I don't touch (and absolutely love) is a bowl of chili.  I've eaten it in casserole type dishes in smaller amounts and have been fine.  But a solo bowl of chili, as much as I love it, the pain just isn't worth it.

One thing that can upset my stomach is just the variety and abundance of foods that are not normally a part of my diet: the peanut clusters, the wonderful casseroles covered in cheese, and the delicious desserts that appear only once or twice a year, so you feel like you have to eat as much as you can in one sitting.

Don't do that!  Even if you don't have an ileostomy.  It's not good for anyone's digestion, but especially so with an ostomate's digestion.  It may not cause a blockage, but an upset stomach may soon follow.  So let me say it again: moderation!  Plus, your waistline will thank you later.  I may need to read this again before Christmas dinner to keep myself in check this holiday season...

Merry Christmas!

The One I Loved Already

My husband and I went to our first appointment with the fertility clinic in early 2014 (the exact month escapes me).  I'm not sure how my husband felt at this point although I know he is reluctant to go to doctor's offices and hospitals.  But I imagine he was a little on the nervous side.  I sure was. 

Going to the doctor's office usually has the power to make me a little on edge.  I probably should be used to the process after going to the doctor so often with having Crohn's Disease.  It seems like there would always be an unpleasant test of some sort awaiting me.  What surprise tests would we have here?

With this visit to the fertility clinic, we were looking at potentially large medical bills coming our way as insurance would provide little to no assistance in the process.  We had saved up money, but how long would that last?  And would we get the results we wanted after spending that much money? 

And the biggest cause for my shaken nerves: the end result.  Either way it went.  I was nervous it wouldn't work; that the baby I longed for, of mine and my husband's own flesh and blood, would never be, and I'd be left with a massive hole in my heart.  On the other hand, if it did work, if we were to be blessed with a child...well, having a baby makes everyone nervous!

The waiting area at the office provided a slight calming of my nerves.  The environment was open and quiet.  But then we were handed the new patient paperwork to fill out.  That's hard to do when you keep thinking of the potential life change awaiting you.

Once we were called back, we went through the new patient preliminaries.  The staff was great.  It was helpful that we already knew one of the staff members prior to our visit (my husband knows someone everywhere it seems) which, for me, is calming as it provides familiarity.

When we met with the doctor, we heard a trusting voice.  He brought knowledge and confidence to a room that was filled with a sense of possible hopelessness.  He explained what was currently happening with me physically with the information he had from the tests that had been done prior to this point.  Further tests would be needed in order to get a better understanding of what my body was doing (or wasn't doing).  He also addressed what tests would be needed on my husband's side of things to eliminate issues there. 

I had thought that my modesty within the medical world had gone out the window by this point in my life.  How many times have I had to have invasive testing done with strangers present in regards to having Crohn's Disease?  And once I was of age to start going to a gynecologist...there's not really any explanation needed there, right?

The testing needed for this battle with infertility: It's a well advanced, in-depth trip to the gynecologist; throughout the whole process.  It's like modesty went out the window, tried to come back to thinking the coast was clear, and then saw the actual situation and said, "Why bother?"  There were times I'd think my life couldn't just be simple somewhere in the health spectrum.  (Of course, that was just me having a pity party on top of being tired of having to see doctors.)

I'm fairly certain I could have donated a decent amount of blood over the years (if I were medically cleared to do so) with all of the lab work I've had done in my life.  I think I had lab work done every time I visited the fertility clinic. 

And you know what?  I would have had even more lab work done, filled out enough paperwork to write a book, went through even more tests, worked more to be able to pay for all of this if it meant sharing the love that God had put in my heart for a child.  Some people say they love the child they are carrying but is not yet born.  I loved a child that didn't yet have life inside of me. 

Love, Marriage, and...

There's a saying "First comes love, then comes marriage, then comes baby in the baby carriage".  My husband and I had the love part.  We had the marriage part.  Next, we wanted that baby carriage.

At this point we had been married around three years.  It seemed like a good time to expand the family, bring new life and joy into our home.  But something strange had happened to my body.

My menstrual cycles started off as normal as possible for a teenage girl.  But then Crohn's Disease happened and wreaked havoc on my body.  I had lost a lot of blood over time due to my illness that the "gift" had disappeared.  My body was doing good to pump enough blood to keep my heart going, I'm sure.  Functions that had to do with reproduction were not important.

After my issues with Crohn's were addressed, then my menstrual cycles (or lack there of) were addressed.  I was prescribed birth control to get my body to have cycles.  A woman's body is meant to have cycles once a month.  The monthly visit seemed annoying at the time (and sometimes still does), but it's unhealthy for the woman's body to not go through the process.  Birth control resolved that issue; at least on the surface.

When my husband and I decided to take the leap into parenthood, I just assumed it would happen.  No issues could possibly interfere.  The only medication I was taking was the birth control medication (my Crohn's was under control after my ileostomy).  Obviously, I stopped taking that.

Then the issues started.  A month went by, and I didn't have a cycle.  I'm all excited and go and get pregnancy tests.  They were negative.  That was disappointing.  But it didn't seem terribly odd to me.  I'd been taking birth control for several years at this point.  My body probably just needed time to adjust to not taking it.

Well, months went by and then almost a year had passed since I had stopped taking the medication, and still, my cycles hadn't returned and unfortunately, I still was not pregnant.  It was time to go to the doctor.  He reinforced my idea that it could take some time for my body to get back into order after stopping the birth control.  But he actually put me back on it for three months thinking that it may jump start my body.  It didn't.  At the end of the three months trial, my cycles still hadn't returned, and I still was not pregnant.

I found myself trying to will my body to do what it was supposed to.  If I could just have my cycles back, we would be able to conceive.  But there was nothing I could do of my own accord.

We took it upon ourselves to get more in depth help for reproductive issues.  We made our first appointment with a fertility clinic.  The emotional roller coaster would start here.

Make Them Aware

December 1-7, 2017 is IBD Awareness Week.  This is a great time for those who have Inflammatory Bowel Disease or those who may know someone who has it or those who work in gastroenterology to bring awareness to the forefront of people's lives.  It's a time to share information on the disease and how it affects different areas of the body in various ways.  And it's a time to share experiences of dealing with what can be a vicious illness that takes over the ability to live in comfort.

IBD (specifically Crohn's Disease in my case) isn't something you can take an antibiotic for 10 days (or however long), and the affliction goes away.  It isn't a scrape on the knee where you just clean up the injured area, put some ointment on it and a bandage, and the scrape heals.  IBD is...well...forever.

With IBD, medical tests are commonplace.  Fortunately, for me, I can now go two years between ileoscopies as I've had good results from my previous scopes over the past few years.  Every year (at least), I see my gastroenterologist.  But there was a time when my Crohn's was active that my visits with him were much more frequent.  Medications (that aren't always budget friendly) have to be taken regularly.  But there is no guarantee that they will help the individual that is taking them (for me, they did not).

Some people face multiple surgeries due to the impact their illness has had on them, such as removal of parts of their intestines or even removal of their colon completely like with me.  And though its been a blessing to my health, I have to admit that sometimes I wish I didn't have to wear an ostomy bag.  When things are quiet around me, that's when my stoma wants to be the noisiest.  It's not very lady-like.  I attempt to muffle the noises by putting my hand over my ostomy bag, but it's still noticeable, to me anyway.

There are costs involved with IBD as well.  Monetary costs are big due to expensive drugs and sometimes extended (or just frequent) hospital visits.  And of course, doctor's office visits.  With an ostomy, supplies can be quite pricey.

There's a time cost.  People with active disease are likely to miss time at work due to those hospital visits, doctor's appointments, and just feeling unable to work.  They miss time with friends and family when they don't feel well.  Being a part of society gets pushed aside as one just tries to get through the daily pain.

Family and friends pay a price, too.  They may miss out on the same things as the family member that is struggling with their illness: time at work, spending time with other family and friends, and just having time for themselves.  They are doing their best to support the loved one who is sick; but their free time may be turned into a time of care-giving.

And lets not forget the emotional toil IBD can have on a person.  The uncertainty of if and when one is going to get better (or the if and when is the next relapse going to happen) can really take a person on a roller coaster ride. They are on top of the world when the disease has calmed down and one is able to go out of the house pain free; but then the ride goes way too fast in a downward spiral when a relapse occurs and the painful symptoms reappear.

As this week of awareness goes forward, my hope is that the awareness of IBD doesn't end on December 7th, but that it will carry on each and every day.  People can't be a part of something they know nothing about.  Bringing awareness of IBD is part of why I started writing this blog.  I'm hoping that it's doing just that.  Please continue to share my story with those that may be affected by IBD.  We all need the support of others.