Lessons learned two years down the road...

When I got pregnant with Wylie back in 2011 it came after a year of wicked flare brought on by a stupid GI doc that decided that I should come off ALL of my meds and go on steroids before trying to get pregnant.  Who knew that was the worst possible thing to do?  I certainly didn't, and I trusted my doctor.  I went in to what I thought was the flare of a decade that resulted in pain, tests, hospitalizations, etc.  The fact that we even got pregnant with all of that going on in my body is amazing.

Something to think about...

27 hours of labor and 7 hours of pushing revealed something to me and my team of doctors and nurses that we had never considered:  the scar tissue at the rectal site prevented the birth canal from stretching to the point it needed to in order for the baby to come out.  We had all worked so hard to prevent a c-section in fear of dealing with scar tissue that we never considered the obvious.

Every time I would push the baby would come down just a hair and then go right back to where he had been.  This went on for SEVEN hours.  All of this after he spent the last four months of the pregnancy sitting on my cervix begging to come out.  One of my two OBs in the room had spent part of the day searching for literature on post-protelectomy females and vaginal births and found absolutely nothing.  That's not to say there aren't women out there that have had their rectum removed and had a vaginal delivery, but there is nothing in medical literature to guide an OB through the process.

You would think that after such a traumatic labor for both me and the baby, as well as after 3 months of strict bed rest, having another baby would be far from my mind.  But a mere six hours after the baby came I said to my husband "next time we do this I'm going to have a GI surgeon identify where we can safely cut for a c-section".  My husband was speechless.

Sorry to leave the blog hanging

I realize that I left this blog hanging way back at the end of July but August was a doozy and September trumped  August.  I was in and out of the hospital throughout August with kidney stones, kidney infections, evenings of contractions, etc.  Add to that what was our third move during the pregnancy, and the blog fell to the side.  I cannot remember if I ever shared this or not, but the rental house we were living in during the construction of our new home was hit in the 27 April tornadoes that hit North Alabama, forcing us to move again before our final move in mid-August.  The cherry on top was that by late August I was so swollen and miserable that I couldn't even reach my laptop to type.

Everything paid off on 8 September when our baby boy arrived six weeks early.  He spent 10 days in the NICU in part because of being premature and partly because the birth was quite traumatic for him and me both.  I was in labor for 27 hours and actively pushed for seven hours.  By the time it was all said and done he and I were beat up pretty badly.

Here we are now with him home safe and sound.

Stomas during Pregnancy

I have finally gotten to that point. That point in pregnancy when my stoma goes off and changes.  As if there aren't enough other changes to deal with already.  I am proud that I made it all the way in to my seventh month of pregnancy using my same "cadillac" bag---Coloplast Sensura but the time has come to move on, at least temporarily to a much larger wafer.

I have ordered the new Sensura Pro system from Coloplast and have had mixed results so far.  My stoma is rather large and oval shaped under normal circumstances requiring a large wafer to account for the ovalness (is that a word?).  As my belly has expanded with the baby, the largeness and ovalness has only increased.

The Sensura XPro wafer that I am using is the largest they make and it is MASSIVE.  So large that right edge hits my scar and will not adhere.  This is forcing me to tape up my wafer with waterproof tape every time I shower--which I forget to do about half the time, forcing bag changes sooner than necessary.  It appears they skip from large to XXL on the wafers without a middle ground.  I am convinced this reduces the effectiveness of the convexity of the wafer as well because the convexity is not centralized on the stoma like in the smaller sized wafer, it is instead displaced over a larger area.

I went to change my ostomy last week and realized that my supplier, who shall remain nameless, sent me umpteen boxes of wafers with the new adhesive to attach to the bag rather than the click n' lock that I prefer. Of course all of my bags were the click n' lock type.  So far I have to say that I am not loving the Flex adhesive attached bags.  The adhesive part of the bag that attaches to the wafer is so large that it reduces the amount of space for output, forcing the user to empty more often.  I'm also not comfortable with the large ring that is part of the wafer that the bag attaches to.  It is almost larger that the perimeter of the wafer itself.  I'm curious how the massive ring will adapt when I lay on my side, especially with my belly getting so big.  I'm curious enough that I have done it because I am scared there will be a leak.

Life on Bed Rest has gotten crazy

I've been missing in action the past couple of weeks because "Pregnancy with Crohn's Disease" has turned in the "Pregnancy with an Incompetent Cervix" and I could not really find anything relevant to Crohn's to add.

On top of that, we're headed in to what will be our fourth move in nine months, requiring me to shop online for a refrigerator and new bed.  After a meltdown over bed shopping online my husband agreed to sleep with the mattresses on the floor until I am either off of bed rest or the baby comes.  How on earth am I supposed to buy a bed sight unseen?  I'm not sure if I have mentioned this on here before, but we live in North Alabama where the terrible tornadoes of 27 April passed through and the rental house we had just moved in to was hit.  That house is now known as the "Tree House" and the house we are in now is the "Summer House".  The house we will move in to next month is called "The House".

I have noticed over the past week or so, after entering the third trimester, that the baby seems to be growing at a much faster rate.  As he has grown he has made himself at home behind my ostomy (and hernia), making things interesting.  I know his head is over there and from the best I can figure he is punching near my hernia/ostomy.  It is the weirdest feeling I can think of to have a person in there "jiggling" my intestines.  Maybe he is reacting to bowel sounds?

Add to that the changes I have noticed at the top of my abdomen, and I have become hyper-aware of my intestines.  As he has grown up in to my abdomen I have started noticing sharp pains after I eat.  The best I can figure they are strictures that are being further confined by the growing baby, making them more sensitive. I have been dealing with strictures for years simply because this many years of disease has left my intestines looking like a war zone.  But I have haven't had this many incidences back-to-back that I can remember.

I knew this tipped uterus would come in handy one day...

Who would have ever thought I could say that I knew this tipped uterus would come in handy one day?

I am one of I'm sure many women that have had a total colectomy that resulted in a tipped uterus.  I learned long after the fact that I should have asked the surgeon to tack (I'm not sure this is the correct term, but work with me), my uterus in to place so that it would not shift after things settled in my lower abdomen following surgery.

During my doctors appointment last Tuesday to check the cerclage as well as the status of my cervix, the doctor said he could feel the baby.  This is my first pregnancy but I am fairly certain that the doctor should not be able to feel the baby when checking my cervix at this point (6.5 months pregnant).  The doctors visit went on as usual and I returned home to my strict bed rest, worried a little about the fact that the baby is SO low that the doc could feel him, but excited that the visit went so well.

On Saturday I was expressing my worry to my husband about the baby being so low and he said "its a good thing your uterus is tipped".  My first thought was, wow, Matt is really becoming medically knowledgeable--a big deal considering he had not been to a doctor for about 10 years before he met me.  Then I learned that while I was still in shock from the cervical exam, and my ears apparently not receiving data, the doctor told us that the tipped uterus is helping with the cervical issue because the baby is horizontal rather than vertical, lessening the pressure on my cervix.  So while he can feel the baby, it isn't nearly as big of a deal as I originally thought.

I could go all in to cervical exams following a total colectomy but I will leave that for another day.  Here's hoping all goes well with my doctor appointments tomorrow.

The Status of my Crohn's Disease

I guess I have been so worried about my incompetent cervix that I haven't taken much time to take stock of my Crohn's Disease at this point in the pregnancy.  My Crohn's disease still appears to be in remission but I have started noticing more and more that foods that should bother me (but haven't in years) now bother me:  greasy foods, high residue foods, etc.  I don't know that this is necessarily a side effect of Crohn's Disease or merely the fact that my system is bombarded with so many hormones.

The most obvious "symptom" (I'm not sure this is the right word so imagine me doing heavy air quotes on symptom) I have noticed in this last week or so is that my hernias are not letting food pass through as easily as before.  While I was in the hospital the doctors gave me two big shots of steroids to mature the lungs of the baby just in case I go in to labor.  He told us that the baby will now act, breath,  and look like a baby that is two weeks longer in gestation than he actually is at this point.  I am convinced that the doctor was right on the money.  They baby's kicks have become noticeably stronger this week and he has grown quite a bit.  I think the baby is taking up so much more room in my tummy that my hernias are pressed for room to do their thing.

Between my hernias working overtime and the baby kicking the daylights out of me, I feel like there is a wrestling match going on in my belly.

Day 7 and things have gotten desperate

I'm on Day 7 of strict bed rest and things have gotten desperate.  I actually just watched Drop Dead Diva off of the "watch it now" from Netflix.  And I've never been so prompt with my thank you notes as I am now.  Bring by dinner?  You have a card on the way by the next day.

On the pregnancy front, the baby is doing well even if he is being a pain in my butt.  Literally.  He is sitting extraordinarily low.  I would almost guess that the pressure I feel is similar, if not exactly like, the pressure a normally configured woman would feel.  I tried sitting on a wedge pillow, laying up on my knees like a newborn baby, side sleeping, etc.  The only thing I haven't tried is standing on my hands.

It might be time to practice my gymnastics skills.

Things are looking up

Apparently my cervix is an over-achiever.  In only four days it thickened back to 2.6 cm from the 1.6 cm it was the day they put me in the hospital.  My big excitement these days is a visit to the doctor, the only time I am allowed out of the house.  It is funny what a week or so of laying and doing next to nothing can do to a body.  By the time I went to the doctor and got back home I was completely drained.

I have the good fortune of being able to do my job remotely.  My boss has been really great with all of this, letting me continue to work, basically having faith in me that I can get things done even while on bed rest.  This is my new set-up.  It involves a 42-inch TV, a laptop, wireless keyboard, a reclining chair from Cabela, and good tunes from Pandora.com.  It has been really nice to have work to do part of the day rather than just watching another TV show.

So here I am, with my over-achieving cervix, my new work set-up, and nothing but time on my hands.  Things are looking up.

Bed Rest

I'm not sure bed rest is all it is cracked up to be.  It probably sounds good in theory--lay around, have everyone wait on you hand and foot, no household chores, no cooking, etc., but in reality it kind of stinks.  I've been trying to figure out what God is trying to teach me through this but I haven't come to any conclusions just yet.  Of course, I often find that it takes some distance to finally see what it is I am supposed to learn.

For example, back in March our house sold and we moved in to a rental home near where our new house is being built.  We had literally unpacked the last of our stuff just a day or two before the terrible tornadoes of 27 April tore through North Alabama, blowing a huge tree down on the rental.   The damage was bad enough that we decided to move out of the rental (we weren't able to live in it anyway) and were offered to house sit for a couple my husband works with, all for free.  Wouldn't you know the "Summer House", (we've lived in three house so far this year and will move in to our final home in August so we have to keep them straight somehow), is about 3 minutes from my OB and the hospital.  Two months out from that terrible day of 27 April and I can see that this is exactly where we are supposed to be.

I have figured out so far that a routine is critical to bed rest.  Even if all my routine involves is moving from the recliner to the bed at a certain time.  Or looking forward to 3:00 for my one shower of the day.  I'm trying hard to not nap during the day because I don't want to become a total bum that sleeps all day and sits up all night watching television. Overnight television is way too bad for that.

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.