Sadie’s Journey with Lymphocytic Colitis

Sadie’s Journey with Lymphocytic Colitis On March 8th, 2023 Sadie was diagnosed with Lymphocytic Colitis at 11yrs old. This is her journey.

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.

It’s been awhile since we’ve given an update on Sadie. We wanted to wait until everything was figured out before giving ...
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!

Update:: Unfortunately we started noticing that on the days that Sadie did not take her Budesonide the day following was...
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🙏🏻🙏🏻

Sadie had her GI follow up last week and it went great! Symptomatically Sadie is considered in remission at this point. ...
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!

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^

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