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.
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.