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Sadie’s Journey with Lymphocytic Colitis, Statesville, NC (2025)

07/02/2025

💜Update time💜
This morning Sadie had her 6month GI follow up. We were a little worried because since the end of May she has been going downhill a bit symptomatically. However at this point she is dealing with some bad constipation that has mimicked some of her pain symptoms. With LC you usually get this opposite and Sadie has not dealt with constipation in many years so it was something we did not even think of. At the moment she is having to do an abbreviated clean out to see if this helps her symptoms altogether if it does not then we may have to consider going back on meds for a short period or another scope. Clean outs are always very hard on Sadie so I am sure she would appreciate some extra prayers her way this evening.

12/28/2024

It’s been awhile since we’ve given an update on Sadie. We wanted to wait until everything was figured out before giving the update though.
After her GI visit yesterday Sadie is considered to be back in symptomatic remission🙌🏻 She is currently experiencing zero LC symptoms and her BMs have been normal long enough to be considered stable.
We also visited the Gynecologist and have a plan to manage her cycle in a way that should allow her a better quality of life and have less of an effect on her LC. She started that plan of treatment this week and is currently working through some side effects, we are hoping that these will lessen as she gets use to the medication so we do not have to go back to the drawing board in this area.
Another big piece of news, Sadie is officially beginning her homeschool journey! After many conversations and much prayer we decided that this is the best way for Sadie to achieve the most out of her education. Her immune system just cannot keep up with in person school and at this point in her education missing so much school even with a 504 in place just isn’t an option. It’s not fair for her to always be playing catch up. We are very excited for her to start this journey because we just know she is going to rock it!

09/27/2024

Update::
Unfortunately we started noticing that on the days that Sadie did not take her Budesonide the day following was full of symptoms. She ended up missing school all together or having to come home early. That is not a road we want to go down again. So her GI called her in the non steroid medication, Cholestyramine. Sadie is going to try this out for a month and if this helps we will continue with it indefinitely. Unfortunately the first day she tried we epically failed with making sure she had the right drink to mix the powder in and it made her very sick nausea wise. This morning we made sure she had some orange juice to mix it in and it is going much more smoothly. Praying this helps her and that we do not have to go back to the drawing board🙏🏻🙏🏻

09/16/2024

Sadie had her GI follow up last week and it went great! Symptomatically Sadie is considered in remission at this point. What we have learned this go around with a better GI on our team is that with LC you can’t know if you are in remission without a biopsy and obviously we like to avoid colonoscopies if at all possible. So, that is why we now say she is in symptom remission meaning she is currently not experiencing LC symptoms. For now our plan is to extend the taper process by 2wks on the Budesonide by taking it every other day. Last night was her first night not taking it so anxiety is a bit high for Sadie considering her last experience coming of the Budesonide was far from pleasant. However, her GI has done extensive research and has found a non steroidal medication for her to try if her symptoms return. The goal is to not have her become dependent on a steroid. Lymphocytic Colitis is considered an autoimmune disease so her immune system is already a bit out of whack & dramatic then add on a steroid which suppresses the immune system and it’s just risky especially with her being in school around all the gross middle school germs😅 So in the event of return symptoms we may or may not depending on symptoms & severity confirm with biopsy but we will start on the non steroidal medication first. We also learned at this appointment that the perks of becoming a woman will potentially have a big affect on her LC. It triggers her symptoms big time. If this becomes a significant issue we may have to make some decisions about how to handle this in the next year or so. Her GI has also done a good bit of research on this for us as well and said we will more than likely have to work with a GYN to help manage this as a team. We are so very thankful for the HUGE blessing her GI has been and the confidence she gives Sadie to fight this fight!

08/18/2024

It’s dose down night for our girl! 🎉
So far this round of Budesonide has been good to Sadie with no crazy side effects and it has been doing its job! Last night she finished her round of the 9mg dose and tonight she started her 6mg dosage round. She has not been feeling great today so hopefully it’s just the insane weather we’ve been having and she’s not coming down with something. The Budesonide being a steroid weakens her already noncompliant immune system so it’s much easier for her to catch things and now that school is back and everyone is sharing their germs in close quarters again, it’s something we have to be very mindful of and she has to be vigilant about.
Praying for continued amazingness from the Budesonide, that she tolerates the dose down well and that the germs stay away! 🙏🏻🙏🏻

08/06/2024

It’s been a while since we’ve done one of these. So, we thought with school starting back this week and her first dose down coming in 2wks now would be a great time for a Q & A! We will record her video on Sunday so get your questions or words of encouragement in by then and Sadie or myself would love to answer them!

07/18/2024

It was brought to our attention that Sadie’s Amazon link was no longer working.
We spent some time today updating it and it is now live again. This is a life long disease for her with many unknowns and having comfort items available is extremely helpful during the “tough it out” moments.
Please do not ever feel obligated to purchase anything off of this list. We only have it because people have asked how to support her beyond prayers. We are fortunate enough that her insurance covers quite a lot of her medical needs so we have not had that need. So for those that want to support beyond prayers this is a way that you can do that.
It is updated as we find things or are told things that are helpful or will be helpful for her.
Thank you all for your love and support for our girl💜💜💜

^link is pinned at the top of the page^

07/18/2024

Another unfortunate ugly side of LC is rearing its head for Sadie.
Something that is not often taken into account about chronic illnesses is how much it affects every little thing in your life, even things that are not directly related to the illness itself.
Sadie is starting the process of getting a palate expander and braces applied. That seems simple enough, sure it’s a little painful/uncomfortable for a bit but you take Tylenol & Motrin and tough it out. (Well so I’ve heard, I have never had either of those things) Here’s the thing about that though, because Sadie has Lymphocytic Colitis she is not able to take NSAIDs which means next to prescription pain medication her only option for pain management is Tylenol. With that Sadie has to be very selective about when she takes Tylenol so toughing it out happens a lot unfortunately as we mostly reserve it for fevers. Today Sadie had the separators placed to prepare her teeth to fit the palate expander on Monday. This did not go as planned as there was quite literally no space between her molars and they had to do some unconventional things to get them in which caused a LOT of pain for her. Only being able to take Tylenol, which we all know may as well just be sugar water when it comes to real pain, has her still toughing it out on the couch needing help to get comfortable enough to fall asleep. This also has her anxiety going full force for the pain/discomfort she knows is coming Monday and the days/weeks following as she adjusts to all the hardware. Seeing a child (although she is almost a teenager 😭) have to endure so much and the only thing you as a parent can do is hold their hand is so freaking hard. I always thought having a high pain tolerance and tolerating pain well went hand in hand but seeing Sadie go though so much has helped me realize that some people have no choice but to tolerate the pain even if their tolerance isn’t high, they just suffer and that’s just not fair. Now yes, as far as the pain scale goes this isn’t at the top but it just puts those things into perspective and breaks my heart.
Please send all the prayers and good vibes Sadie’s way over the next few weeks as she continues toughing it out. 🙏🏻

06/11/2024

Back on the Budesonide we go.
At Sadie’s follow up appointment we learned that her lymphocytic colitis is back with a vengeance😞 Unfortunately if we had not decided to get a second opinion she would have ended up with some serious damage from this because she would not be getting proper treatment & her symptoms would be getting ignored. As angry as it makes me to think about, we are choosing instead to thank God for this new team of doctors working together for Sadie to be able to live her best life. For now the plan is to get her back to a baseline with the 12wk tapper of Budesonide. After the 12wks she can decide to try to go off of it completely or to continue on the low maintenance dose. We plan to leave that decision mostly up to Sadie. This is a disease that she will be battling her whole life and we feel that it is important to encourage her autonomy and practice advocating for herself so that it is second nature to her by the time she is an adult.
So tonight was her first dose back and we are praying hard for minimal side effects & enough relief to be back at school in August🙏🏻

06/03/2024

It’s colonoscopy day for Sadie. She’s reppin her purple for LC awareness & the shirt her Nana made her. Praying for nerves and for some answers today🙏🏻

05/05/2024

I realized I did most of my updating on my personal page and forgot to update here.
Long story short we are seeing a new pediatric GI specialist tomorrow. After her endoscopy things just didn’t add up with the results and we had her pediatrician follow up on it and see her. Turns out the GI specialist we were seeing was not giving Sadie the care she deserves. Her records were contradicting what we were told and were even vastly different from one document to the next. We decided that starting over with a new GI specialist that comes highly recommended was what is best for Sadie. Due to how much of a toll this is taking on Sadie’s body and mental health we also worked with the school and were able to get her put on a home bound program for the remainder of the school year. Being able to do that has taken a huge weight off of our shoulders for sure! We are praying hard that we are able to get things figured out soon because she is so exhausted and it is very hard to see her this way. More than that though we just want everything done right and the right diagnosis.

02/23/2024

We FINALLY got stool sample results back for Sadie. They were normal which means her LC is still under control so that’s a good thing! However, she is still having symptoms that include pain, nausea and trouble eating which have lead to weight loss that she can’t exactly afford. So, we are going back to the drawing board for a potential duel diagnosis starting with an Endoscopy on March 4th. Depending on what those results show she will most likely have additional testing. We are just hoping we can find the source of all of this quickly and that it’s something with an easy fix🙏🏻

Sadie’s Journey with Lymphocytic Colitis

07/02/2025

12/28/2024

09/27/2024

09/16/2024

08/18/2024

08/06/2024

07/18/2024

07/18/2024

06/11/2024

06/03/2024

05/05/2024

02/23/2024

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