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Crohn's Infertility Lyfe Tough Talk

Reality Check (Crohn’s and IVF Update 3/15)


It has been a long week full of reality checks, set backs, and also some good progress. I’ll get you caught up particularly with regards to my Crohn’s flare and what it means for IVF.

The last catch up was about the beginning of my flare and the onset of my illness.

Crohn’s Flare Update

Last we spoke, I had just had my colonoscopy/endoscopy. To recap, we found some active inflammation and ulcers as a result of reflux. Friday was a semi-ok day–I really don’t remember a ton of it, actually, which means it was neither good nor bad. I know I spent a decent amount of time in the bathroom, but mostly in the morning. Alex had clinic, so I was on my own. I picked up my steroid (Uceris) and I went to Strides to see my friends, but I didn’t participate. Like I said, the day was ok. I got my Tarascas.

Saturday, barring a bit of a rough start that morning, I felt like I was making progress. We went to swim, I took a nap, we had family time. I was tired, but I was ok.

Sunday is when things fell apart. I spent the whole day exhausted and in and out of the bathroom (8x). We had brunch and did grocery shopping, but I was kind of just making it through. Seeing enough blood + my exhaustion + the amoutn of tiem I spent in the bathroom meant that Alex contacted my doctor (who happens to be his colleague, fortunately), and they decided that I needed to go on a more pervasive and harder core steroid–Prednisone.

The prednisone gave me back my ME. For 12 hours, I felt so much better. I had energy again, I didn’t go to the bathroom. Thanks to Alex’s urging and the new influx of health-feeling, I went to strides. I scaled the workout and took it easy, but I made it through and doing so gave me a lot of confidence back. Plus it felt good to be with friends and move my body. Even if I looked like death doing it, I no longer felt like death afterwards. We even went to the Nature Museum after so that Emmie could run around, and I finally was able to play with her and actually interact, rather than just letting Alex do everything. I made chili for Alex’s lunches for the next few days. I made enchiladas from scratch for dinner.

And then, 12 hours after I had taken the steroid, my got reminded that I am not out of the woods. And the floor fell out from underneath me. Back to the bathroom. Here come the cramps (unlike many other flares, the cramps this time have been rather minor. Mostly I’ve been dealing with urgency).

Tuesday I headed down to the hospital early to have labs drawn before Remicade, I got my infusion, and then I saw my doctor. Originally, this appointment was supposed to be a Well Child visit of sorts. Not so much.

I am so fortunate with my doctor. Even when/if she wasn’t working with Alex (she didn’t work with him the first years we were here), I just think she is an excellent doctor. Add to the fact that she knows Alex and she knows as well our infertility journey and the fact that we were about to try for another, and she had to make some tough decisions. But the right decisions.

First off, we are increasing the dosage of my Remicade infusion and shortening the interval/# of weeks between infusions. That is a pretty standard reaction, especially due to the fact that I weigh more now than I did before I was pregnant and am now in a flare.

Next, we are going to do IV iron because I have iron deficient anemia. As the inflammation in my body goes down, I should become less anemic. The low level of iron in my body (I’m not in a bad bad way, but it is trending that way) and my tendency towards constipation plus all the nonsense and absorption issues that go along with flares = do IV iron so that you can still go to the bathroom and also actually absorb the iron.

We can expect me to be on the Prednisone for about 2 months, best case scenario. That is because you need to be “perfect” on each dosage before you go down, and the nature of prednisone is that you go down by 5 mg until you get to 20 mg and then 2.5 mg a weekish after that.

I hate prednisone. It makes me crazy, makes me gain weight, and I have really, really bad mental associations with it. But if it can get me back my life, I need it. I will have to be more careful, bones-wise, as this is another bone-tapping drug.

The biggest change, however, will be the return of Methotrexate to my drug regimen. You may or may not remember, but Methotrexate is a weekly injection that I used to give myself. Its job as an immunomodulator is to tell my immune system to chill out and allow Remicade to do its work without having to fight antibodies. It also helps my skin, which has never been the same since I went off of it 3 years ago.

IVF Update

The problem? You cannot be on Mtx and get pregnant. In fact, it is one of the original abortion drugs and a cancer treatment drug. I can expect to be on it a minimum of 6 months, best case scenario. Then I have to wait 3 months after stopping it, have a colonscopy, and then I can get the go ahead to start IVF.

So, at best, I will be able to start another egg retrieval cycle mid/end December. And that is if we anticipate everything and start treatment basically the day after my colonoscopy.

I left the appointment really, really bummed. I just hadn’t thought or wanted to think or believe that I was that sick, or that I had that much potential to get more sick. The two months of prednisone sucks. I hate being on steroids. I don’t care about giving myself a shot-I would be doing that around now if all had gone accoring to plan! But the 9 month minimum means that we will have 5 months to try to get pregnant (we have to before the end of Alex’s fellowship).

But I have to be healthy in order to even think about getting pregnant. Thank goodness we weren’t already in the middle of a retrieval cycle! I need to be healthy to be a good mommy, to have my best life. I was already lucky enough to have my little unicorn, and we started IVF on NYE and got pregnant with Emmie May 7, so miracles can happen in 5 months!

The process has been delayed, not aborted. At least that’s what I keep telling myself.

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  • Reply Maureen @ Maureen Gets Real

    Oh Suzy, I hope the new treatment plan works to get everything under control so you can get healthy and start IVF when you want to.

    The process isn’t aborted at all. Delayed is better than aborted!
    Maureen @ Maureen Gets Real recently posted…A Walk, Fetch, Mexican Food, And A MovieMy Profile

    March 15, 2019 at 6:43 am
  • Reply Michelle

    Sending prayers for you!!

    March 15, 2019 at 6:49 am
  • Reply Suzlyfe’s mommy, Clare

    I know you are bummed, we all are bummed for you.
    When I heard about the flare and the scopes, my first thought was, oh Lordy, here comes methotrexate again, and I knew what that meant with regard to IVF.
    When I asked you, about going back on it, you hadn’t considered it yet and I was afraid I’d really scared you.
    Maybe, I’m glad I asked. That was just before your appointment when your doctor did put you back on the drug,

    Your third year at UVA, your doctor started talking methotrexate b/c your crohns flare was so violent and had lasted so long.
    You asked me what I thought about your taking it, and I did my “read everything I could find” on methotrexate.
    I knew it was a Black Box drug and absolutely contraindicated for pregnancy. But that topic wasn’t on the table and you were SO sick.

    Well, I told you I’d read, studied and knew the risks, but I also had to believe it would help you, and it did.
    It was a very tough call to make then, but it worked.
    I certainly hope it does it’s magic dance with Remicade again.
    At that time when you were in college, I was in MOM mode. I may be Emmie’s Granmommy, but YOU are still my child and I’ve gone back into mom mode, again—I want you to feel better.
    So, we will hope that these miracle drugs will step up to the dance floor again and get you dancing ( but not with the stars on TV, please!!!)

    March 15, 2019 at 7:26 am
  • Reply Christina

    You are one of the strongest people I know. This too shall pass , you became a mama once and you will again – you just need to guild your strength. Hang in there !

    March 15, 2019 at 7:45 am
  • Reply Julie @ Running in a Skirt

    Oh girl! I’m so sorry! That really sucks. Sending healing vibes your way. You are in my prayers.

    March 15, 2019 at 8:29 am
  • Reply MCM Mama

    I’m so sorry about the setback. Sending positive thoughts that everything goes perfectly and you are back in the IVF saddle at the earliest possible moment. (And will be sending lots of positive IVF thoughts when the time comes.)
    MCM Mama recently posted…Tips for Staying Fit in your 40sMy Profile

    March 15, 2019 at 8:35 am
  • Reply Megan @ Skinny Fitalicious

    Oh sweetie! I’m sorry about this. I know you will get through this though and you are so lucky to have an amazing husband and medical professionals who will help you with this.

    March 15, 2019 at 9:26 am
  • Reply Jess

    Oh Suzy!! Thank you for being so candid and open about your journey. Not only does it cause me to cry for you but also it causes a major gut punch reality check! I’ve been so fortunate. So healthy. (Minus head colds ow whatever) and here I am COMPLAINING way too often about ‘being stuck at home, inablr to train as much as I would like, not able to “work” as much as I’d like’. Blah!! Reading this inspires me to get off my butt and find the JOY that is in the ‘daily child rearing’ grind. I’m praying a miracle happens so you don’t have to wait too long for baby #2. Oh how delays are so miserable. Ha! It’s like whyyyyyy must I wait? What for?! Growth? Maybe? *hugs*
    Jess recently posted…Protected: From 14+ Minute Mile to Sub-3:00 Hour Marathon?My Profile

    March 15, 2019 at 9:31 am
  • Reply Kelli @ Hungry Hobby

    I’m so sorry to hear you are so sick girly hang in there prayers to you!

    March 15, 2019 at 10:48 am
  • Reply Sarah Rosenblatt

    Aw Suz, I’m so sorry you’ve had such a rough couple of days/weeks. But I’m glad you at least have a plan! Even if it means delaying things… I’m rooting for you!

    March 15, 2019 at 11:53 am
  • Reply Emily Swanson

    Wow Suz, I had one bad day today with my digestion, but reading this makes me realize how I have nothing to complain about; you have been going through so much; I”m definitely continuing to pray for you;; you’re such a warrior my sweet friend.

    March 15, 2019 at 4:32 pm
  • Reply San

    Ugh, how very frustrating. I am so sorry your plans got derailed. It’s so hard to accept when things are out of your hands and there is nothing you can do to improve the situation 🙁 Keeping my fingers crossed though that it’ll just be a short delay.
    San recently posted…On sleepMy Profile

    March 22, 2019 at 5:42 pm
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