In the Big House

Tonight's episode of Pregnancy and Crohn's Disease is being filmed live in front of  a studio audience at Huntsville Hospital.  Yep, I am in the Big House.

The doctor tightened down on my bed rest on Monday and because of the long weekend I decided I would feel better if I had one more check.  Thank God that I did.  When I went in today my cervix was now dangerously low.  Admit now, do not pass Go.  Leave it to me to not have shaved my legs or showered before my early morning appointment.

They have me on an IV drip to calm my uterus and have given me steroid shots to mature the baby's lungs just in case.  Tomorrow they will be doing a cerclage to sew my cervix shut.  Following that will be strict bed rest for at least the next few weeks.

I have been feeling guilty for what all I am putting my husband and family through.  I can't help but think that all of my surgeries and years of chronic illness is contributing to this in some way.  If only I didn't have this jacked up body, maybe I would be out picking out things for the nursery and cooking another awesome meal for my husband and I.  Instead, he has the weight of the world on his shoulders--stress at work, laundry, meals, getting me a drink, getting me a snack, etc.  He is doing a fantastic job taking care of me but I can't help but thinking that now I know what my grandfather must have meant when he always said "I don't want to be a burden."

Here's praying that tomorrow goes well and our baby boy can hold out a little while longer.

Pity Party

There is a pity party going on at my house, attendance 1.  I was officially put on bed rest yesterday--at only 24 weeks.  I am hoping that I will do so great the doctor will ease up some but I need to be prepared for this to be a long term deal.  The doctor says this can happen to anyone but I can't help but think that all of my surgeries are contributing to this in some way.

My cervix is thinning out, thickening, thinning back out, thickening again, and so on.  It just so happened that when I was at the doctor yesterday my cervix was at its thinnest--2.2 cm.  My pity party started before I could even get to my car.  While I was still with the doctor I was trying to take everything in to the point that I couldn't even really conceive what I was facing.  His instructions were that I could get up to fix myself something to eat or drink, go to the bathroom and shower, and change the DVD in the player.  He also said I could work from home as long as I could do it from a reclining position.  He has also put me on progesterone.

By the time I got to my car the party started. Why can't just one medical thing ever go right for me?  How many different ways as I letting down my husband and family by putting this burden on them?  How is my husband going to work and take care of everything around the house for the next few months?  This list is quite exhaustive so I will just stop here.  

So here I lay, in my Cabela camping chair that is like laying on a cloud, with my legs under my tall desk, taking a break from working on Day 2 of bed rest.  I am willing my cervix to grow.

Is that the baby or just the grapefruit I ate?

Life with an ileostomy is an adventure--you never know what fun you're going to have each day.  Today's fun was brought to us by the letter "G", as in Grapefruit.

Who knew something as innocent and tasty as grapefruit could perplex me so?  I spent a good part of the day getting on to the baby (because he can here me, I know it, but he just ignores me) for kicking around in my lower abdomen.  Every "kick" was hurting.  Really hurting.  Hurting so much that I quit working and was laid out flat in the recliner--You've Got Mail was on television so I was okay with it.  Imagine my surprise tonight when it comes to light what the true culprit of all my pain was: grapefruit!

When I first got my ostomy I kept track of everything I ate, making sure to also take note of when it passed.  There's nothing like the first time you eat something with red dye in it and you are convinced you are bleeding internally.  Or when those green peas come out looking exactly as they had when they went in.

Ten years later it rarely crosses my mind of what I ate and when I saw it again.  I will admit, corn on the cob still puts the fear of God me.  And I did make my husband take me to the ER last year after I accidentally ate an entire bag of microwave popcorn--it ended up being a kidney infection that landed me in the hospital for three days, but my first response was intestinal blockage.

My doctors have told me that my biggest risk over the remainder of my pregnancy is blockage or rupture of either hernia.  As the baby grows, he is competing for space with a rather large perastomal hernia and a so-so incisional hernia.  I think maybe I am getting to the point now where I need to start paying better attention to what is going in and what is coming out.  I guess I also need to apologize to the baby for blaming him for causing my trouble today.

Reality Check

I have spent my adult life determined to not let Crohn's Disease define who I am.  I take great pride when people, upon finding out my configuration, say, "I would have never known you had anything going on..."

But I have finally met my match and its name is Pregnancy.  

I used to be famous/infamous for pushing myself to do things I had no business doing, just because no one was ever going to tell me "you can't do that".  There was the time I went whitewater rafting six weeks after surgery while I still had an open wound.  Or during graduate school when I would leave class to run to the hospital for IV treatment before heading back for an evening class.  Or skiing down the slopes at Vail with a terrible infection and open wound on my abdomen.  It was all pretty stupid, but it helped me build up my "nothing is going to stop me" attitude.  

The difference this time is that there is a life on the line and it isn't mine.  Pushing myself at this point in my life has suddenly taken the back burner.  These past two weeks have really been an eye opener for me.  The doctors were actually concerned about pre-term labor (I'm only 23 weeks).  The symptoms I was having were "just" aggravated scar tissue and adhesions, but it definitely scared me enough to slow my roll.  This time I am okay being told "you can't do that".  

An Apple Pie Injury

I have sustained an apple pie injury.  This injury has next to nothing to do with being pregnant and having Crohn's disease, but it is funny/sad nonetheless.  Funny, because I am a third generation klutz, and sad because only a person with a poked out belly from pregnancy that is poked out even further with a hernia, could sustain an injury like this.

On a whim I decided to make a set of apple pies for my father for Father's Day--it is in the top 25 of his favorite desserts, probably close if not in first place.  The incident in question happened while using the apple slicer.   The apple slid, the slicer slid off of the apple, and with the force required to slice the apple, I came down on my hernia, pinching it between the counter top and the slicer.

Thirty-six hours later and I am still walking hunched over and in pain.  I remember asking my surgeon a couple of years ago if I was at any increased risk of injury with my intestine being "right there" under my skin, without the protection of my abdominal wall.  He said no.  I think he might have been wrong.

You don't know what you are getting yourself in to...

I had my first "can I touch your belly?" recently.  I know that it is every little old lady's desire to rub a pregnant woman's belly, but before letting her go in for her rub I simply said "You don't know what you are getting yourself in to..."  Before I could finish, her hand had already touched down.  I didn't have the heart to tell her that her rub of the baby was actually my incisional hernia.  Too bad that my bowel wasn't working at the time so she could have thought she felt the baby kick.

I don't have that glamorous baby bump that has both young and old clamoring to touch and see what the feel.  I have more of the "what exactly is going on here" baby bump.  I look like a more traditional pregnant woman from the left side because my parastomal hernia rounds out my bump.  But from the right, even I have to admit I looks ridiculous.  I guess I should be prepared to have my Demi Moore naked on the cover of a magazine shot made from the left.  I hope no one minds the Coloplast ostomy bag hanging.  Maybe they can photoshop that out.

I wish

I wish there was somewhere I could go online, or in town for that matter, to compare notes with a woman that is pregnant, has Crohn's disease, has hernias, and has an ostomy.  I wish.

I was talking with my sister-in-law a couple of nights ago, comparing pregnancy tales--she is 37 weeks and I am 22 weeks.  It dawned on me that while helpful, there is really no way for her to give applicable advice because my configuration is so different.  That said, I think I am going to change to direction of my blog, at least for the duration of my pregnancy.  Why?  Because there is no where out there for me to get information about what I am going through.  Maybe this way, I can be that person for another pregnant woman that comes along needing to know what to expect.

Today's "something I didn't expect" is bowel sounds.  :)  

I'm not sure if what intestine I have left is squished by the baby, or if my expanding belly is pressing on my parastomal hernia, but the bowel sounds coming from around my ostomy are quite entertaining.  I have heard from "regular" pregnant women that gas is an issue during pregnancy, but they don't have a broadcast system on their stomach.  I have tried any number of things to lessen to bowel sounds but nothing seems to do the trick.  Early mornings, church and long meetings around a conference table are the times that my faithful friend Junior likes to play his tunes.  I realize that this falls in the category of "you'll just have to live with it" so it makes me laugh more than anything else.  Mostly because the folks I work with have no idea about my configuration.  It is quite entertaining to watch them try to figure out what on earth they are hearing, and why it is coming from "there".  

On that note, I am off to the OB to hopefully hear good news.  Bad news would be that I have to go on bed rest.  Let's hope I hear good news today.  

Hernias, Scar Tissue, and Adhesions, oh my!

Hernias, scar tissue, and adhesions are my enemies these days.  I have been having a great deal of pain where my rectum used to be since the baby has started getting a little bigger.  I had a total proctectomy in 2006 after my GI doc found pre-cancerous cells during a colonoscopy.  He said at the time that this is often the case for patients that have had Crohn's/UC for a long time.  By 2006, I had already been living with an ileostomy for nearly six years, and my rectum had been causing me so many problems that I was ready to have the surgery.

Other than trying to avoid hard seats, I haven't thought twice about my rectum in years.  That was until the last two weeks or so of pregnancy when I started feeling pressure and pain "down there".  It feels very much like it used to feel when I was flared up in my rectal stump before surgery.  The fact that I am zipped shut didn't seem to make a difference.  I feel like if I tried hard enough I could actually pass something from my rectum at this point.

My OB says that two anchors for the uterus during pregnancy pass right over the rectum.  Apparently, those anchors are putting pressure on the scar tissue and adhesions that are where my rectum used to be.  I don't think it was a real issue until the baby started growing more, putting more weight on that area.

So, what do hernias have to do with my scar tissue/adhesions problems?  The baby is limited in where he can grow and where the uterus can expand because of the two hernias I have--one perastomal and one incisional hernia.

Hernias, Scar Tissue, and Adhesions: 1            Crohn's Disease:  1             Alison:  0

Ugh.

I have been living the high life the last five months with both the pregnancy and Crohn's.  As the baby has gotten bigger and more active the fact that I am not a normal pregnancy has become more and more evident.  My hernia under my ostomy is keeping the baby low and on the right.  That hernia is also getting pressure on it from me getting bigger.  I've noticed a great deal more noise coming from that area, which can be a little embarrassing when sitting in a meeting (like all day yesterday).  The hernia on the upper right side of my abdominal incision is really starting to poke out but other than being unsightly, it is not hurting.

But the thing that is really getting to me is the area where my rectum used to be.  I feel like I did six years ago--"back when I had a butthole" and had active Crohn's in the area.  I actually think it might be worse.  The area throbs and there is a lot of pressure.  My high risk OB and my GI agree that this is something I will just have to deal with for the next few months.  Apparently some of the "anchors" for the uterus run right along the rectal area of the normal woman. These anchors are hitting scar tissue, sensitive nerves, and adhesions on me.   They have given me some low grade pain medicine but I am trying to avoid taking it as much as possible.

I think my usual "I'm going to live life and not let Crohn's get in the way" attitude is going to have to be put on the back burner for a while.

Crohn's Disease: 1                        Alison: 0

Do you ever?

Do you ever blame Crohn's for far more than it deserves?  My husband and I have a running joke in our house that "the Gremlin did it".  Who ate all of the ice cream?  I bet the Gremlin did it.  If someone splashes water all over the bathroom floor, I can bet that darn Gremlin had something to do with it.

I find the same thing to often be the case with my Crohn's disease.  Feeling queasy?  Crohn's disease.  Fever and chills?  Crohn's disease.  I will admit that many times over the years Crohn's was the culprit.  But there have also been many times that I blamed a flare on whatever symptoms I might be having at the time only to find out that no active Crohn's could be found.  I remember a time or two of actually being disappointed.  Like maybe I was crazy.  Why would I have this combination of symptoms if it wasn't Crohn's acting up?

I think it is a slippery slope having Crohn's in my back pocket to blame.  If I blame every pain, twitch, or gurgle on Crohn's disease, I can also fall back on it as an excuse for any number of things.  Made a bad grade on my exam?  I think my Crohn's was starting to flare and had me distracted.  Can I go on a ski trip?  I better not, my Crohn's might flare or I might need to go to the bathroom while out on the mountain.  Road trip?  I can't, what if I need to go to the bathroom and cannot find a decent gas station?

I used all of the above mentioned excuses and many more over the years.  I happened to be sick enough that no one ever questioned my handy Crohn's excuse.  But I got tired of letting it define me.  I cannot deny that I have Crohn's but it is way down on the list of things I think of when I describe myself now.

Finding the perfect GI doctor

Finding the perfect GI doctor has always been a challenge for me.  It seems that a good number of GI docs want the simple, let's scope the 50-something patient every two years and collect payment, kind of patient.  I realize that I may be lumping a lot of doctors into a pile here, but in my 26 years of Crohn's disease, trying to find a doctor that will stick with me through the ups and downs, has been hard to accomplish.  I had one GI doc, that came highly recommended I might add, that said "I don't do hospitals.  If you are going to need to be admitted, I am not the doctor for you."  What kind of doctor doesn't "do" hospitals?

I have discovered that the best thing to do is interview your prospective GI doc.  I have also concluded that university/research hospitals are the best bet.  My all-time favorite GI doc was at the University of Chicago.  I am in north Alabama.  So that wasn't very realistic.  My new GI doc is at Vanderbilt in Nashville, TN and in my first meeting with her I asked as many questions of her as she asked of me. It also helped that when I name dropped my U of Chicago doc that I love, she knew exactly who I was talking about.

My favorite thing about my new favorite GI:  every other GI I've ever had is always chomping at the bit to put me on steroids.  My GI doc at Vandy has told me to expect a flare immediately following the birth of our baby.  I asked her if they would be putting me on a mega dose of steroid following the birth and she looked at me like I was crazy.  That was so refreshing.  Her response: "Why put you on steroids until a flare reveals itself?"   YAY no steroids!!

Pregnancy

I'm noticing that my blog seems to be more about pregnancy than Crohn's so far, but since I have Crohn's disease, and I'm pregnant, I feel it is pertinent.

Getting pregnant was something my doctors had always told me would be near impossible. In hindsight I actually think Crohn's saved me/us a great deal of heartache.  Rather than trying for years to get pregnant, only to be disappointed month after month, year after year, we went in knowing that we would need help.  Showing up in the fertility doctor's office every week and seeing the desperation and anxiety on so many faces revealed to me how fortunate we were to know from the get-go that we would need medical intervention to get pregnant.  It ends up I wasn't wrong at all.  Multiple abdominal surgeries had created so much scar tissue that it was most definitely impossible for us to get pregnant naturally.  After years and years of medical disappointments related to my Crohn's disease, handling the fertility problems were relatively easy.

So here we are five months in and we found out yesterday we are having a boy.  It was funny to see how perplexed the ultrasound tech was by my ostomy and two hernias. I found out that the baby is lying completely on my right side.  I don't know for sure but I am guessing that my perastomal hernia is preventing the baby from shifting to the middle of my abdomen.  This should make for some interesting pregnancy pictures here in a couple of months.