An Interesting Twist
I had my top to tail procedures on Friday. The prep was miserable – the procedure wasn’t that much fun either. But, meeting with the gastroenterologist was worth it.
As I was prepped to be knocked out, I had the chan e to speak with the Gastroenterologist. We went over my entire case history. This most recent episode – foods I can eat, foods that bother me, exactly what happened and when, etc. The egg allergy idea (which he didn’t seem to buy into). My history of recurrent pregnancy loss and the in-depth analysis I had from Dr. Braverman. My history of drug induced lupus 15 years ago.
While talking he pulled up my 2009 gastroscopy results when I was formally diagnosed with gastritis and commented on how at that time it was microscopic mild gastritis found through a biopsy. And there is no evidence from that report that I had an ulcer – not sure where I got that from. He pulled up my first and second colonoscopy reports – he commented on how excellent the last GI was in finding a 2mm polyp last year.
Needless to say, the Gastroenterologist was intrigued, and in my experience having an intrigued doctor is a good thing!
Here are the key things I got out of that discussion:
- He does not believe all my stomach pain episodes since 2009 are gastritis related. The 2009 diagnosis would not cause this level of pain and this frequency.
- He thinks this is all immunological. In fact, he’s pretty much convinced of it. He promised to take multiple biopsies and have them test for every single thing, with a focus on rare issues and those related to immunology. Due to the nature of the testing he’s requesting, it will take multiple weeks to get back the results.
- I will forever get 5 year colonoscopies due to the polyps and family history of colon cancer (I already knew this, but he reconfirmed it). My next one is in 5 years from now, not 5 years from the last one. That’s a bonus for me because I get to avoid Colyte for an extra year.
- He is determined to figure this out. He promised he is not going to send the results to my doctor and wait until my next episode in 1 or 2 years from now. He promised to see my in his clinic to discuss results and do further testing if necessary. (In the medical system here a specialist does not have to see me again, they can just send the results to my family doctor, so this promise means the world to me and I plan to hold him to it).
- He agrees with me and fully expects the gastroscopy and colonscopy to appear normal.
- And, he promised to be incredibly thorough. And he kept his word.
- A gastroscopy typically takes 5-10 minutes. Mine was 25 minutes.
- A colonoscopy topically takes 20-30 minutes. Mine was over and hour.
They did not give me any additional sedation after the gastroscopy. So I was one of the fortunate few who was fully conscious for the majority of colonoscopy portion of the procedure. Fun times (note the sarcasm).
But, there is an upside to this. I remember a lot! In fact, I remember him talking with his resident as learned a lot from their conversations about what they were seeing, all of which was normal. In fact, both the gastroscopy and colonoscopy are perfectly normal. Also, there was no sign of endometriosis on any of the organs he saw or typical signs of problems caused by endometriosis on the outside of the colon (I’m glad we didn’t do the $30,000+ surgery Dr. Braverman recommended).
Mostly, what I remember is I begged him to see me in his clinic and not let this just continue. He again, reiterated his promise to see me in his clinic once the results of all the biopsies are in and to search for the answer.
.
So here’s the thing, there is a very possible link between this and whatever this is and our recurrent pregnancy loss. And all I can think is seriously?! Maybe this doctor will solve this mystery? And what if this mystery is something that is easily fixable? I’d never change the path we walked because it brought us Little MPB. But, I swear, I will be so angry if we get the answer now and it was something that could have been identified if any of our doctors ever took me seriously. I’ll mostly just be pissed off because there’s potential that we didn’t have to go through the hell of losing 5 babies way too early.
I just want an answer.
And, ideally and easily treatable answer.
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My Perfect Breakdown 
I’m so glad to hear that you have found a doctor who sounds like he’s going to work with you until you have an answer.
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I am just so hopeful that maybe I’ll finally have an answer to what’s going on!
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I hate to swear, but fuck fuck fuck.
This is unbelievable if there is a link to losing babies and what you are going through now. And more than anything, to be honest, if there was a link, although there will be anger, it will also bring closure. So far you have always just said your body couldn’t carry the babies, but at least now you will get to know why and peace is a beautiful place to be in.
I am so glad you finally met a doctor, who truly believes and walks the talk of caring and healing. I am hoping for nothing but positive outcomes for your butt search 🙂
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Yup, that’s pretty much my response too! If nothing else it’s actually fascinating that he thinks this is all related in some-way-shape-or-form.
And you make such a good point, even if I’m bitter that I didn’t get an answer sooner, I do think there might just be some peace with finally getting a real answer and truly being able to understand why.
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Wow that’s so crazy that there may be a link. This doctor sounds fabulous and I’m glad you got to see him. I’m also glad the procedure is over! Good luck with the next steps.
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I too am so happy the procedures are over! Mainly just the prep, the prep is so horrible!
And, hopefully this doctor is as fabulous as he sounded on Friday. 🙂
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I don’t want to get too excited too quickly, but… I am really excited for you. It sounds like you’ve got a great doctor at last who is committed to figuring out why you have had your particular constellation of bizarre but devastating symptoms. You don’t have to get your hopes up at this stage, since obviously there are no answers yet, but I will get my hopes up for you!!!
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I’m like you, I don’t want to get too excited. Yet, it’s kind of hard not to be. Just the possibility of answers is so encouraging to me right now. 🙂
As always, thanks for your support. 🙂
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Yay for this doctor! I’m also (sorta) glad you were aware during the second procedure. You can learn so much in those experiences. I hope you get the answers you seek!
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Ya, in the end being aware during the second procedure was a good thing! Although, truthfully, in 5 years I’ll still beg for more drugs – I hate pain and discomfort. 🙂
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This is true. I was given the option of an epidural before inducing last year, and I took it. No hesitation.
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So as I was reading, before I got to the punchline, the second you said “immunological” I literally got tears in my eyes and a feeling that this was what was coming. Oh my. I’ve been one with a mysterious illness before and the feeling of being taken seriously after so long still (2 decades later) can take the air from my lungs. May you find your answers at last. And may they be treatable. I’ll be thinking of you.
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I realized my first stomach issue like this as an adult that I distinctly recall was in 2005 – that’s 12 years of this! So your right, the idea of a doctor taking this all seriously is literally breath taking. All my other specialists have said they aren’t related and I just don’t believe it.
Thank you for your support. I do hope the answer is out there and this doctor is the one who will keep searching until he finds it.
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Wow. It sounds like you finally found a doctor to help actually treat you. I hope you get real answers soon beautiful friend.
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I sure hope this doctor keeps his word and keeps looking into what’s causing all these weird issues in my body. Also, I thought of you when he confirmed no evidence of endo from this test (which I know isn’t as conclusive as the procedure you went through, but it helps confirm something I’ve always suspected).
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So hoping for an answer for you! This doctor sounds amazing. As someone who is married to a doctor I know that so many of them are overworked and worn out so finding one that promises to go the extra mile is amazing! Good luck!
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This doctors promise to go the extra mile made my day! (Not something I expected to say going into this type of an appointment!). I truly hope he keeps his word.
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Hoping that you get answers soon, even if they are hard to take in. My best friend has a gastrointestinal disease that effects everything these her body does. It took years to get diagnosed after constant pain and inability to eat solid food. One way or the other, may you get some relief!
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The story about your friend is really encouraging for me to hear. Do you happen to know the name of her disease (if you don’t mind sharing)? I heard the doctors talking but the one thing I cannot remember for the life of me is the names of possible rare disease they wanted to have the pathologist look for (I’m guessing I cannot remember the names because they were long and complicated words and I was still slightly drugged). I guess on the plus side because I cannot remember the names, I have not been able to consult Dr. Google.
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She has Ehler’s Danos Syndrome, Dysautonomia (specifically postural prostatic tachycardia syndrome), gastroparesis, and small fiber neuropathy.
I should add that she’s a rockstar! She’s dealing with all this, being a mom, and is a Doctoral level student. The struggles have been very real and she’s been to hospitals all over the country to get a solid diagnosis and some relief.
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I just did a very quick google on each one of those and wow! To be dealing with all of that and living the life she is leading, she is clearly a rockstar!
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This is highly interesting as I have many signs of EDs and dysautonomia and have not been able to get doctors to take me seriously and look for answers. I have celiac, chronic EBV, migraines, orthostatic hypotenstion, hypermobility, and many food intolerances. My son has global hypotonia, poor reflexes, hypermobility, and food intolerances. My biggest relief has been from diet changes and CBD oil.
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She ended up going to Mayo clinic to get the ED diagnosis. She spent ten days doing testing. She’s been on tube feedings at times but gets the tube out soon!! I have a friend with Daughter who has gastroparesis. I’m finding these diagnosis more common!
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Oh wow! I doubt my Michigan Medicaid would cover a specialist trip like that. Gastroparesis is scary. I thankfully do pretty well on my current diet and have never had to be hospitalized or tube fed.
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She’s from TN. I’m not sure what insurance, if any, was used. It’s been quite the road for her
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I’m glad she’s been able to get to some good doctors and get a diagnosis. It is hard living with a mystery illness and being turned away and called crazy.
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It makes total sense that it could be immunological and related to your fertility issues. There’s a big link between the two! And endo, and celiac, and food intolerances, and leaky gut… I hope he stays good on his promise and helps you for real.
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Wow – you just be so relieved to finally have a doctor that will keep going until he has an answer! If it makes you feel better, I also had 5 miscarriages. Later, I was diagnosed with an immunological problem that had caused those miscarriages. However, there was no treatment that would have made me able to carry those babies. It would have made a difference to my overall health, but not my overall fertility. It made it easier on me once I knew that. Fewer regrets about not persisting in finding an answer then.
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Wow! Truly a twist! I wanted to say that due to my ‘immunes’ ,( which actually wasnt the reason for our infertility, in the end it turned out to be sperm fragmentation for us) I used to chug down turmeric powder with water and it is the best form of remedy for immunes related issues. Why dont you research if it can help you? It is a great remedy to lots of health issues anyway. Kindly look into it maybe it really helps you!
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That’s just crazy that things might be related!! I truly hope that you get some sort of answer, and also are finally able to figure out if things are related and maybe have some fertility answers as well. You don’t have to answer this if you’re not comfortable…but if they DO find something that is related to your IF, and figure out how to “fix” it, do you think you will try growing your family? I feel like this all opens up so many questions now!! I wish you the best of luck with this, and really crossing my fingers and hoping that you get some resolve to all of this!!
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So, I’ve been thinking about this question a lot and decided to answer it in a post because I need to flush out my thoughts a bit more. So, that’s coming. 🙂
Also, I’ve been meaning to email you, and never seem to have 10 minutes.
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I’ve been meaning to email you too!! Life has just been crazy…even though it kinda feels like we haven’t really been doing anything lol!
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The right doctor just makes so much difference!!
Really hope he finds you some answers! Good luck!! xx
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Wow this is fascinating. I am looking forward to following how it all turns out.
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Oh wow. This must really be playing on your mind and has probably created even more questions for you. I really hope you find some answers soon x x x
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This doctor sounds really amazing. I’m very happy about that!
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