Alex's Ulcerative Colitis Journey

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Alex's Ulcerative Colitis Journey This page is where I will update everyone on Alex's UC journey to keep everything together.

18/05/2023

Haven't updated in awhile but Alex's treatment isn't working as well as they'd like and his levels are still not where they're supposed to be so they've moved his treatments up to every 6 weeks instead of 8 and we have to visit his GI every 4 months instead of 6. He also wants him to get a booster shot bc of his immune system. They're going to continue to monitor his lab work plus they're going to do blood work to check for diabetes bc apparently there's an issue with his urination. So praying n crossing fingers that everything gets better soon.

11/01/2023

Alex was most likely misdiagnosed with asthma and it may actually be something wrong with his vocal cords so they're running test and we may have to see a speech doctor for that but they are also running an allergy test on his back. I really wish this kid could catch a break.

23/11/2022

Treatment day with more blood work

21/11/2022

Haven't posted in awhile but Alex has his treatment coming up soon, then his usual check ups with all of his doctors but everything is going well. He was running a fever Wednesday and Thursday with vomiting, headache, and body aches but he refused to stay home Friday bc he had a competition Saturday for JROTC. His voice still sounds raspy but hasn't had a fever since and says he feels OK this kid continues to amaze me with his commitments and determination.

His GI called today and said that the results from the scopes and the biopsy all look beautifully. He said the treatment...
20/10/2022

His GI called today and said that the results from the scopes and the biopsy all look beautifully. He said the treatment is working and everything looks great so that's the best news we've received in awhile. Now to get his migraines and breathing in order and we will be right as rain.

16/10/2022

Alex is having an endoscopy and colonoscopy done tomorrow morning so today is prep day. I feel so bad for him and helpless bc there's nothing I can do to make it easier.

16/10/2022

Fast forward six years. We have learned a lot about this disease but still learn more everyday. He is on his third different treatment because after awhile his body builds up an immune to it so it stops working. He has had two colonoscopies and one endoscopy. We visit his Pediatric GI in Lexington every four months and visit UKCH every eight weeks for his infusion. He has also been diagnosed with chronic migraine, so now he has a neurologist. He has a daily medication for that now. He has also seen a neuro ophthalmologist, and a few other eye specialists at UK Advanced Eye Care. This child has seen more doctors in the last six years then most see in their whole lives and when he gets sick he's down for the count. It's never something simple with him. But he takes it like a champ very rarely complains or says why me. He amazes me everyday with his strength and attitude about everything he has to go through.

13/10/2022

Continued
So of course we pack a bag, call my mom to pick up Hunter and then rush to UKCH. After spending close to two weeks, countless tests, lots of tears and prayers we heard the words NO person ever wants to hear. The team of doctors had ran out of ideas of what it could be they were at a loss. They wanted to do an upper and lower GI to check for cancer. So of course there were LOTS more tears and praying. Luckily and thank God when they did the procedure they didn't find cancer. At this point we didn't care what it was. He informed us he had Ulcerative Colitis and some basic information about what that meant. He said it's a disease without a cure that he would have for the rest of his life but we could treat it and possibly manage it with medication and a specific treatment plan.

30/09/2022

Continued
So after panicking a little I called his doctor to get an appointment to figure out what was going on. Our appointment was on Monday after I got off work. We explained everything and she collected blood to run some labs and test. She sent us home with a kit to collect stool samples so she could send those to the lab as well.
The following day I had to stay after work to attend a meeting and of course had my phone on silent. After the meeting I headed home bc it had been a long day. When I got home I checked my phone and realized I had several missed calls and voice-mails from numbers I didn't recognize. The voice-mails were his doctor telling us that his blood count was extremely low and that I needed to get him to UKCH (UK Children's Hospital) right away. The second was UKCH telling us that he had already been admitted and that his room was ready waiting for his to arrive and the last was the pediatric GI team telling us how serious it was for him to get there asap. To be continued....

29/09/2022

To start off we'll begin with how it all started.
In June of 2016, right before Alex's 8th birthday, he came to me saying that when he used the bathroom there was blood. I didn't think to much about it and told him that it was normal. I figured he was straining to go. Fast forward about a month, I had completely forgotten about it. He came back saying it was still happening but way worse. This got my attention. I told him that next time he went I needed to see. The toilet was full of blood, I was horrified at what I saw. That was NOT from straining and definitely not normal for a 7 year old little boy. To be continued....

28/09/2022

I'm going to start using this page to put Alex's journey with dealing with Ulcerative Colitis or UC. I will update about treatments, procedures and how hes feeling. I think it'll be easier to have everything in one place instead of people having to search my page for updates. I hope this will also create awareness for this awful disease and how it affects children. I had never even heard of UC until Alex was diagnosed.

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