This morning the hubs and I got to make the 3-hour commute from Georgetown to Indiana University, for yet another consult. We had a 20-minute consult, this one with Dr. B, a digestive disorder specialist, to discuss my Crohn’s and plan for the Double Balloon.
Couldn’t we have done this over the phone?! Sure. But instead, we got to spend 6 hours in the car and we got to visit 3 different states today-Ohio, Kentucky, and Indiana!
And, it looks like the Double Balloon Endoscopy is definitely going to happen, with the doctors entering through my mouth, for a better chance of seeing the inflammation in my Ileum. No ‘rear entry’ this time, haha.
The Double Balloon Endoscopy, DBE, for those who don’t know about this procedure, is an extra long endoscopy or colonoscopy, where further investigation of the small bowel can be done, with another tube attached. This procedure, unlike the other scopes, can help to see more of the stomach and intestines that would be unavailable before.
After seeing Dr. B at IU and receiving his feedback, I am a little flustered and bothered with the care I have received before now because it all feels like a waste of my time.
So many appointments, tests, doctors, with my symptoms and issues getting worse, when we have suggested Crohn’s the entire time.
Why can’t the doctors take our opinions on our own bodies seriously?
We have ‘known’ for years that it’s Crohn’s, and they’re just now figuring it out?
With Dr. B’s interpretation of my Pill Capsule results, both # 1 & 2, all he could do was shake his head and question me about my history.
The medication’s I’ve been given so far do not target the areas of my inflammation, so everything we have tried this far has either been a waste or a placebo.
He stated that if I was his patient, that he would have thought I had Crohn’s Disease from the beginning, considering my peri-anal disease and fistulotomy, all mixed with my symptoms, Crohn’s made sense to him. Finally, a doctor that understands!!!!!!!
He also said if I were his patient from the beginning that he would have given me ‘better’ medication sooner, and then check for remission, but that’s not how my VA worked, and moving from doctor to doctor has helped to drag this process on even longer for me.
So the plan of action is, if the VA has to have biopsies, biopsies we will get.
Fun fact – the biopsies they want may or may not show inflammation, and <30% of Crohn’s patient biopsies show Granulomas, a sign for the disease. So, you can have Crohn’s and inflammation, but not show anything specific.
Dr. B planned on leaving a note for my VA doctors, to suggest another steroid, or for me to begin biologics, but we assumed the VA will wait until my biopsy results return to order those intense medications.
It can take up to 2 months for me to get an opening at IU to even have the Double Balloon procedure, but we are trying to get it done as soon as possible. It will require sedation and oxygen, and it could last 3-4 hours, depending on the areas to be biopsied, and how far down they decide to go into my bowels.
My specific ulcers are right on the cusp between the top and bottom, so we are hoping that by doing the top-down route instead of the bottom-up route that we will get more areas for biopsies.
The good news: no Golytely prep is needed, just no food after midnight, with the procedure offered in the morning on Fridays. Dr. B also didn’t think I had a Meckel’s Diverticulum, or at least that wasn’t causing me issues, so that’s good?
The bad news: Sedation and pregnancy don’t really mix. Depending on when we have the procedure, this means our IUI #1 could not be happening for a while. If we have the DBE scheduled for September, then our family plans will definitely be put on the back burner.
The IUI has been on our minds for a few weeks now, because we have had to think about long term care for my Crohn’s and whether it would be ‘worth it’ to spend that kind of money on a chance.
With our chances, it is like gambling on making a family and you don’t know what will happen. We could easily just be giving away those funds for nothing, so we have even been discussing other options like sperm donors and the original plan of ICSI. (See So You’re Saying There’s A Chance?)
Depending on the Crohn’s medications, my remission, and my appointments for scopes and scans, we may not be doing IUI #1 – or anything for TTC- until we can figure out my issues, that is if we ever get them under control. (TTC: trying to conceive)
I won’t get prescribed medication for my Crohn’s until after the Double Balloon Endoscopy most likely, and most GI doctors suggest waiting until you are in remission for roughly 6 months before trying for pregnancy because active Crohn’s can lead to miscarriages, and some medications are harmful toward the fetus.
This could mean we have to wait until next year for us to even try the IUI, and that is only if we can get my symptoms under control, and if we can find medication for long term care, like Remicade or Humira.
So, for now, our infertility journey keeps getting pushed farther and farther away from me. And it’s breaking my heart.
We just can’t catch a break it seems.
In other news, I have my Occupational Therapy Musculoskeletal (MSK) consult this Monday for my DeQuervains tenosynovitis in my hands, so hopefully that’s one issue we can get under control.
But, like always, It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey.
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