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.

08/09/2026

✨Scope Results✨
Sadie's post op was this past week and it actually went really well and gave us some much needed hope! None of her biopsies showed evidence of Lymphocytic Colitis. This means at the very least she is in remission! However, her GI attended a conference about colitis specifically with Sadie in mind because as we know Sadie doesn't fit the typical LC mold. (Reason 1234567890 I LOVE her GI) Anyways, in that conference she learned about new studies that showed in some people Lymphocytic Colitis can be a reaction to medication that person took or a trauma response to an injury or illness. In those cases the body over time can actually heal itself of the colitis and the person would go into essentially permanent remission. Based off of Sadie's last two scopes and her other testing over the last year, her GI truly thinks that Sadie will fit into this category.
Now on to what they did find in her scopes. There was evidence of acidic damage in her small intestine and esophagus which indicated that she was dealing with some acidic reflux overflow basically as those areas don't have a lot of protection for that. The area in her small intestine that was affected is where she has been having all her pain. Her GI said that this definitely consistent with her pain and nausea she has been experiencing over the last several months.
Plan of attack: She is going back on a different reflux medication for 2 months and then we will have another check up to see if she is improving and then we will go from there.

Neurology update: We met with a neurologist who is very perplexed by Sadie's symptoms. She feels that her symptoms are more indicative of a regulatory problem than a nerve issue. So we decided to start with an MRI of her brain and cervical spine. On that we are looking for any damage to her brain stem, any type of nerve compression, or something that isn't suppose to be there if you catch my drift. Her neurologist said that if they do find something this could also explain her sudden onset of POTS. Not really sure what to hope for here, obviously we prefer answers and not more unknowns or just "this is your life, learn to manage" but we also don't want to find something crazy and scary. So I'm praying for answers with a quick, simple fix. Her scan is on the 25th at night and once the neurologist gets results she will call us and we will go from there!

07/07/2026

💜💜Long overdue update💜💜
It has been a year since we’ve done an update and to be fair until recently there wasn’t much change.
Sadie has had a really rough past 6months and we weren’t sure if any of it was related to her LC but now we are finding out it’s all kind of connected. She was having bouts of tachycardia that we were unable to control, dizziness, chest pain & nausea. After many hospital visits & tests we found out that she has a mild form of POTS. It is considered mild because she has never passed out thankfully! For those that don’t know POTS is a disorder of the autonomic nervous system, the part of your nervous system that unconsciously controls your basic bodily functions like heart rate, blood pressure, digestion, etc. This is very common in teen girls and those with autoimmune/GI disorders. Sadie unfortunately checks all those boxes. We learned that for her, her POTS is also triggered by pain and sometimes she doesn’t realize that she is in pain but her body will have a pain response, so when she has a tachycardia episode one of the things we have to check for is pain she may not be recognizing. Unfortunately when having an episode it isn’t always easy to get your body to calm down on its own because the autonomic nervous system is in overdrive basically and your body feels like it is under attack. Those episodes often end up needing medical intervention, thankfully that has so far only happened once with Sadie. In the midst of getting this diagnosis she also started experiencing extreme stomach pain, after 2 ER trips in 24hrs we found out that her clean out a few weeks prior was not completely successful so we ended up doing another clean out which came with some complications & not completely relieving pain like they usually do. So, her GI has ordered her an endoscopy & colonoscopy procedure to see what is going on. We will be doing this on the 21st, praying for some answers!! We also accidentally learned through X-rays that were confirming constipation that Sadie has mild scoliosis in her lumbar spine. This in combination with the POTS diagnosis helps explain why she gets constipation with LC instead of diarrhea. POTS and lumbar scoliosis both affect digestion & can cause constipation. With POTS staying hydrated is an Olympic event & the scoliosis compresses everything so it’s a perfect storm. As of now it seems as if her flares are going to be going hand in hand which sucks. However, we are working on managing things. Her goals are to drink at least 100oz of water a day, eat all the salt, and get 30min-1hr of exercise 5days a week. We have also gotten her a new pillow set that has helped with sleep & just getting comfortable in general (I’ll add a picture & link for those that want to try it out).
She is still doing homeschool, we discussed the possibility of her going back to in person next school year but with all this new information she isn’t sure she wants to add that stress. Which is totally fair, I could not imagine being in school around a bunch of people all day dealing with invisible illnesses while trying to keep up. We have given her full autonomy with the decision as long as she is keeping up with homeschool.
One positive in all of this that has had her very excited is that she has gained & maintained weight. There were times where she lost a lot and couldn’t gain anything and it was very hard on her and hard on us to watch. She has loved stepping on the scale to see gains & going up sizes in her clothes!
I will definitely update after her results of her scopes! In the meantime as always please feel free to ask any questions! I will also be updating her Amazon list soon to include some things to help with her additional diagnoses!

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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