My Journey Through Pregnancies With Ulcerative Colitis: Part 1

DISCLAIMER:  I am not a doctor of any sort.  This is just my story with information I have collected through my 15+ years living with Ulcerative Colitis.  The medical information is written in lay terminology, which is how I understand and explain it the best.

 

Before my second pregnancy is over (in just over a week… eeeeek!), I wanted to write about my journey with ulcerative colitis during both of my pregnancies.  Maybe somebody out there will read these posts and find some comfort knowing they aren’t alone.  When I became pregnant, I scoured the internet to find stories of people in my position, and it was difficult.  Since it can be so hard to find up-to-date blog posts, etc regarding chrohn’s/colitis and pregnancy, I am hoping to get a little bit of a first-hand account out there in case anyone else finds it of interest.

A flashback from my first pregnancy:

I felt great throughout my pregnancy with Ashton.  The doctors knew of my history with Ulcerative Colitis, but we decided that I wouldn’t take anything for it during the pregnancy unless I started to have trouble.  I hadn’t had a flare in a while before I got pregnant, so this was fine with me.  The high-risk doctor I saw said if I would have a flare during the pregnancy, there were safe options (prednisone) to take to get it under control.

{During pregnancy, your immune system is VERY low (why it is easy to catch bugs during those 40 weeks) so that it won’t attack the baby (something that is foreign to your body and something a properly running immune system might try to get rid of).  Ulcerative Colitis and Crohn’s Disease flares occur when your immune system is running at full-force, sees your colon as a foreign “object” and attacks it.  So a lot of times during pregnancy when your immune system is low, people with Crohn’s/Colitis find relief from the disease.}

I sailed through the pregnancy without any problems and without taking any medications for the Ulcerative Colitis.

My delivery with Ashton was rough to say the least.  I’ll spare the re-hashing of all the details now, but it was a three-day induction, 4th degree tear and a (surprise!) 9lb 10oz baby.  Needless to say, I started off my motherhood journey exhausted and ripped in half.  I was pumped full of Motrin and stool softeners (which I now know can aggravate Crohn’s/Colitis) and was too distracted by the pain, healing process, breast feeding and new baby to notice or think about a flare.

Fast-forward about five weeks postpartum and I was in a bad spot.  I had ignored/not realized little signs and found myself in a full-fledged flare-up.  I had lost about 40 pounds and  I guess I just kept thinking the flare would go away as I healed from the delivery, but it didn’t.  I wanted to keep breast feeding (it was going so well) and taking medication might keep me from being able to continue.

It was around this time that I wasn’t sure I could even make it to my gastro doctor appointment that I realized I needed to get healthy in order to be any sort of mother to my new baby, even if that meant not breast feeding him anymore.  So I started Prednisone, re-started Lialda and even used a prescription enema.  I also weaned off of breast feeding (which wasn’t hard between the medications and the rapid weight loss I experienced) and easily transferred my baby to formula.

I had a colonoscopy which showed my colon was “very angry.”  I was instructed to stay on the medications but when things got worse the next week (fever, dehydration, more flare) I went to the ER.  I wasn’t able to eat anything, and what I did (a piece of toast or even just water) would aggravate my system.  I was admitted to the hospital after my second ER visit and was there for nine days.

Oh yeah, and I had a 6 week old at home.

I was missing my new son and my husband, and not feeling any better.  I was being pumped full of fluid for my severe dehydration, steroids, etc.  My heart rate was in the low 40s.  I was on a liquid diet for the first few days, and then on really soft foods (like pudding.  Lots of pudding).  Lots of bloodwork was done and lots of waiting was happening.

I saw a few gastro doctors who were on call at the hospital, and they talked about different medications, etc.  When my actual doctor came to see me we discussed Remicade.  I had heard of it and heard of a few people on it.  A sweet girl who’s blog I read had been on it in the past, so I chatted with her about it via email when I was in the hospital.  After some thought and lots of discussion with my doctor and family, I decided it was the best choice.  My doctor said some people get relief within a couple days of their first Remicade infusion.  Yes. Please.

Unfortunately to start the medication, there are a series of tests you have to do to make sure it is safe.  One of these would take three days to get the results.  Ugh!  They did the test, and a few days later I was given the green light.  They gave me tylenol and Benadryl (via IV) 30 minutes before (standard procedure), and then started the Remicade infusion.

Side note:  Benadryl via an IV will knock your socks off!  It was like I had chugged a few stiff drinks and then took a great nap, ha!  The whole thing was about 3 hours.

By the next day I was noticing a little bit of a difference, and then the day after that I was able to go home!  I was weak and underweight, but I was home and on my way to regaining my health.  By about the fourth day post-infusion I was feeling about 90-95% and so, so thankful.  It was amazing how much easier and enjoyable motherhood was now that I was feeling healthy.

I continued my Remicade infusions every 8 weeks (sometimes longer) and learned LOADS of information about the disease and the medication.  When I had a follow up with my doctor he was so impressed by how I was doing.  He also admitted that he was pretty nervous with how bad my flare was in the hospital.  I had a colonoscopy months later to check on everything, and I was in full-blown REMISSION!  I now only needed to go and see my doctor once a year or if something came up.

Whew!  Are you still reading?  If you are I am giving you a virtual fist-bump.

That’s it for Part 1.  I am hoping to get Part 2 written and posted later this week.

(I promise it will be shorter)

(I think)

(Don’t hold me to that)

 

2 thoughts on “My Journey Through Pregnancies With Ulcerative Colitis: Part 1

  1. Pingback: My Journey Through Pregnancies With Ulcerative Colitis: Part 2 | Jacquelynn's Corner

  2. Pingback: Friday Favorites: My Posts on Pregnancy With Ulcerative Colitis | Jacquelynn's Corner

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