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IVF with an Ostomy

Obviously this is not an outdoor adventure post. But the fertility journey definitely impacts outdoor adventure, so I think it’s relevant information to share. I also didn’t realize ahead of time that due to the risk of ovarian torsion during IVF, you have to be careful with activity. So December ended up being a very chill month for me activity wise because I’m paranoid about worst case scenario situations happening to me. I’m sure I could have gotten a way with a little more activity than I did, but I walked A LOT so that helped.

Anyway…

Tyler and I recently went through the IVF process to freeze embryos for the the future. I want to share about our fertility journey (thus far) because we learned a lot in the past few months and had to make difficult decisions based on many unknowns with my Crohn’s and ostomy.

About a year ago, I was coming out of anesthesia from my annual jpouch scope, and my surgeon told me I should consider freezing my eggs. The reason being, that she felt I needed to have my jpouch removal surgery sooner than later (my jpouch was not looking so great that year). Jpouch excision surgery can complicate fertility by causing scar tissue, so she wanted me to have all options available in the future.

Decisions, decisions…

The tough part about making the decision to do IVF, is that there is so much unknown when it comes to fertility with an ostomy. There’s just not enough research in the area. And my surgeon was 100% open with me about that. It is absolutely possible for someone with Crohn’s and/or an ostomy to have a completely normal, uncomplicated pregnancy. But that’s not always the case.

My situation is somewhat different and could lead to complications if I were to get pregnant in the future.

I’ve talked to multiple providers including my: colorectal surgeon, GI doc, primary care provider, reproductive endocrinologist, and physical therapist. Medically, they all said I could likely conceive and carry a pregnancy. But I could also have a lot of complications that would impact my quality of life. This is because of the amount of surgeries I’ve already had, my history of complex peri-anal disease, and the fact that for some unknown reason, my stoma is plagued with the ability to retract and cause bowel obstructions over and over again. Oh and that I still have at least 2 surgeries ahead of me in the next couple years.

Basically what I took away from the discussions is that a pregnant Charlotte could be a recipe for disaster. So to prevent disaster, we decided to take some steps in the direction of IVF with the thought of working with a surrogate (i.e. gestational carrier) in the future.

Oh this is also probably a good time to mention that Tyler and I are definitely not ready for kids. Hence, the fertility preservation idea. We still have many adventures and things we’d like to accomplish before heading in that life direction.

But, since I have to make some decisions about my jpouch and my retracted stoma (again), we began the process.

So, here’s how things have gone so far:

We completed one round of IVF back in December and have 4 “normal” embryos to use in the future. The whole process from when we first saw the provider to embryo freezing took 4-5 months. Sounds so simple, right? It definitely is not. And I would say we actually had a pretty smooth experience. There were many moments of frustration and questioning decisions (mostly on my part). It feels like there are about 1,000 steps involved in IVF from finding a provider, to figuring out funding, to managing all the medications, and actually going through the semen analysis and egg retrieval processes prior to the lab doing their IVF thing. And that’s only the start of it. We’re in a nice lull of ignorant bliss for the next couple of years while we ignore our frozen embryos in Seattle (other than paying for their lodging in the cryogenic freezer). But I’m sure time will fly and then we’ll start down the surrogacy journey which is a whole other complicated process.

Overall, I’m happy with where we are at with our current batch of embryos. Now, I have to focus on upcoming surgery decisions which I’m also trying to ignore. And of course, I’m distracting myself by fitting in as much fun as possible, like heading to France to ski next week!

Two weeks of random IVF moments: Dealing with all the meds, learning the injection processes, enjoying easy walks and skis, amazing Alaska sunsets, stealth injections at the clinic, hanging out in the fancy clinic atrium, going to the National Nordic museum (did you know there are more saunas in Finland than cars?), figure out how to use a bottle as a portable sharps container, and finally receiving a positive ovulation test.

If you’re interested in learning more about my nitty gritty IVF details, I’ll share our timeline and specific thoughts below. IVF can feel very overwhelming and complicated, so hopefully this timeline of events and tips can simplify the process:

Our IVF Timeline

Fall 2021:

  • Began to discuss the idea of IVF with colorectal surgery

Winter/Spring 2022:

  • Researched IVF and Gestational Carrier processes. Reached out to folks who have been through the GC/IVF process. Forgot about the whole process while attempting to climb Denali.

Summer 2022:

  • Scheduled a consult with Seattle Reproductive Medicine. It took about 2 months to get an appointment for an initial consultation. All of our initial appointment and monitoring were virtual. We highly recommend Dr. Dudley. He is very down to earth and compassionate, but also provides the facts in a very accessible manner. He’s definitely a straight-shooter which I appreciate.
  • We were assigned to a nurse and a financial counselor (IVF is freakin’ expensive!!)

Fall 2022:

  • I completed genetic carrier screening (I have a history of Duchenne Muscular Dystrophy in my family, so this was an important step for me) SRM uses the Sema 4 Expanded Carrier Screen (502 genes) which is mailed out. Pro tip, make sure to hydrate because the test requires quite a bit of saliva.
  • I did initial testing locally for ovarian reserve, including lab work of my AMH and an AFC ultrasound.
  • After initial testing, we were provided with pricing options for IVF vs egg freeze
  • We decided to go with IVF because of better outcomes with freezing embryos vs eggs. And don’t worry, we had lots of discussions about what our plan is if we break up or something happens with our relationship down the road. Fun times, right?
  • Before setting a date for egg retrieval, we had to pay for the full cycle.
  • At the time we paid, we were booked 2 months out for egg retrieval.
  • We then received a calendar of the cycle and additional information. Because of my menstrual cycle history (or lack there of) and the fact that I have a mirena IUD, my provider opted for a “spontaneous start” meaning that I did not do any additional birth control priming ahead of the official IVF med start date.

Early Winter 2022:

  • Because we did remote monitoring, I had to establish with a fertility specialist in Anchorage who could perform my FDA physical (required to work with a gestational carrier). I already go to Anchorage Women’s Clinic, so it was easy to establish with their fertility specialist. If we were doing standard IVF, I could have skipped this step because I did all of my lab work at Providence and monitoring ultrasounds at Alaska Family Sonograms.
  • We started discussing authorization for medications, which were all paid for out of pocket. Ultimately, the best deal was using our provider’s discount with New Era pharmacy. We ended up paying about $4,000+ for the medications. We looked into the reunite rx program, but the discount wasn’t any better.
  • Tyler went down to Seattle for a day for his semen analysis/sperm freezing and FDA physical at SRM.
  • My medications finally arrived on November 29th in a large box.
  • Wednesday November 30th: I had estradiol and progesterone lab work, FDA physical, and suppression check ultrasound.
  • Sunday Dec 4th: I had my first days of stims (I was taking Follistim and low dose hcg) which I continued through the 13th. I was on an antagonist protocol, so after my follow-up ultrasound on the 9th, I added Ganirelix Acetate injections to my routine. I was then told that I was approved to fly to Seattle for my appointment in the clinic the following Monday (as anticipated).

Retrieval Week

  • Dec 11th, I caught an earlier flight to Seattle because of snow on the way to Anchorage, and stayed at a friend’s house. I’ve very lucky that Jeanine has wonderful and accommodating friends in Seattle who housed me, hung out, and picked me up from my egg retrieval.
  • Dec 12th, I walked to SRM (about an hour walk) and did lab work and had another ultrasound. My follicles weren’t quite large enough, so they told me to come back on Wednesday for another check. I had about 15 follicles that they could see on ultrasound at the time. I also had a cyst on one of my ovaries which I think impacted follicle development, but it did not change anything about my IVF cycle.
  • In between appointments, I spent a lot of time in the beautiful atrium where SRM is located. I also participated in typical tourist activities and did some Christmas shopping at Pike’s Place and went to Ballard and Fremont, including the National Nordic Museum. I really enjoyed the museum, and learned a lot about nordic culture and immigration to the U.S. They also had some neat images of the first downhill ski boots!
  • On Wed Dec 14th, I went for another ultrasound and estradiol check. I had about 17 follicles that day and the cyst was shrinking. I was tole to give my Lupron trigger injection that night. I was really concerned about developing OHSS because I had a lot of risk factors, but I think the protocol I was on helped. I felt a little uncomfortable the morning of the retrieval, but I was able to walk and take the bus around the whole city the day before.
  • Thurs. Dec 15th: I had a positive ovulation test in the morning which meant that I was on track for my retrieval the next day.
  • Fri Dec. 16th: My retrieval was just before noon. I took the bus most of the way to the clinic, but got out and walked along Lake Union to enjoy the fresh air and listen to my audio book before being cooped up all day. Jeanine’s friend picked me up from the clinic after the retrieval. They retrieved 13 eggs, which at the time seemed disappointing. I was told not to fly back to Anchorage until Monday, but since I was feeling good, I decided to fly back that night. I took the bus to the light rail which dropped me at the airport and then Tyler picked me up in Anchorage.

Fertilization/Freezing

  • I went to work the next day after the retrieval, and the clinic called to tell me that 10 eggs had fertilized normally. There were originally 12 eggs that were mature and inseminated using ISCI.
  • On Dec 22nd/23rd we were then told that we had 8 embryos make it to blastocyst that were frozen.
  • We decided to do PGT testing, so we received those results on Jan 18th, 2023 because they did a send out to an external lab.
  • As I said, we ultimately ended up with 4 ‘normal’ embryos that we froze.