Delayed Update
In support of
Kayla Bowden
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Kayla Bowden
I apologize it has been so long since I’ve updated. I’ve had so many appointments and life has just been exhausting.
As far as formula goes, the Peptamen didn’t work out. But thankfully the Kate Farms Peptide is wonderful and I am not having any issues with it! I also got the feed and flush bags, but unfortunately my body isn’t tolerating the fluid through my tube as we expected. I’m still getting a little, but it is about the equivalent of 8-10oz of fluid per day. I’m waiting to hear back from my team on what their plan is for this.
For the tube pain I was experiencing, I did see the IR team at Emory who confirmed my tube was still in my stomach and small intestine. They weren’t able to check for buried bumper but the tech did say it’s been too soon for it to be really bad, and he told me to push my tube inward toward my stomach a few times a day for a few minutes each, and that has helped tremendously! I still occasionally get the pain but it’s way more manageable now.
I saw my GI doctor at Emory on 7/10 to discuss the MCAS medication along with other issues. Unfortunately he was not agreeable with putting me on the MCAS medication I researched (he thinks the side effects would be worse despite the reviews stating otherwise), and instead put me on one that has a reputation for making symptoms way worse. However, I know every body is different so I agreed to give it a chance. Today was my first day taking the medication and I took 1/4th of the daily amount and it has knocked me out all day and I woke up with severe stomach pain and nausea. I’m planning to give the medication about a week to see if anything improves and then reach back out to my doctor.
I would greatly appreciate prayer for my dehydration situation, the MCAS medicine situation, and my health in general. I’ve been having a lot more bad days than good the past month. All of these things are tanking my mental health (along with other stress in my life) and it’s difficult to battle this without the proper help. But I appreciate everyone who has reached out to encourage me and of course all who have prayed.
Hopefully I’ll have a better update for everyone soon. Thanks for reading ❤️
As far as formula goes, the Peptamen didn’t work out. But thankfully the Kate Farms Peptide is wonderful and I am not having any issues with it! I also got the feed and flush bags, but unfortunately my body isn’t tolerating the fluid through my tube as we expected. I’m still getting a little, but it is about the equivalent of 8-10oz of fluid per day. I’m waiting to hear back from my team on what their plan is for this.
For the tube pain I was experiencing, I did see the IR team at Emory who confirmed my tube was still in my stomach and small intestine. They weren’t able to check for buried bumper but the tech did say it’s been too soon for it to be really bad, and he told me to push my tube inward toward my stomach a few times a day for a few minutes each, and that has helped tremendously! I still occasionally get the pain but it’s way more manageable now.
I saw my GI doctor at Emory on 7/10 to discuss the MCAS medication along with other issues. Unfortunately he was not agreeable with putting me on the MCAS medication I researched (he thinks the side effects would be worse despite the reviews stating otherwise), and instead put me on one that has a reputation for making symptoms way worse. However, I know every body is different so I agreed to give it a chance. Today was my first day taking the medication and I took 1/4th of the daily amount and it has knocked me out all day and I woke up with severe stomach pain and nausea. I’m planning to give the medication about a week to see if anything improves and then reach back out to my doctor.
I would greatly appreciate prayer for my dehydration situation, the MCAS medicine situation, and my health in general. I’ve been having a lot more bad days than good the past month. All of these things are tanking my mental health (along with other stress in my life) and it’s difficult to battle this without the proper help. But I appreciate everyone who has reached out to encourage me and of course all who have prayed.
Hopefully I’ll have a better update for everyone soon. Thanks for reading ❤️
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Heather Pitts