6 months, already?

I seriously did not realize it had been THAT long. So much to talk about, so I will try to jump right in. My writing time is rare now a days, but we will talk about that in a few :)


Alexis is (currently) doing fine. I refuse to say great and jinx anything because the past few months have been beyond stressful. Over the past year we have been battling pouchitis non stop. We would go through the Cipro/Flagyl course and her symptoms would bounce right back. My first indicator of pouchitis was always "holding" (Not sure what else to call it-- this is what Alexis and I refer it to!) Where she will stop whatever she is doing, cross her legs and stand there "holding" herself for about 30 seconds or so. She tells me she feels as tho she has to go to the restroom very bad, and holding is what she does to prevent having an accident. Eventually the symptoms progressed into your more well known pouchitis signs such as: increased frequency, decreased appetite, night time incontinence, fever and pain in her bottom. I always felt like a complete failure every time I had to take Alexis back to the hospital for more meds.

After our last visit to Childrens, I knew Alexis would be put on permanent medication for pouchitis. However, I refused to go down this road without putting up a fight. I spent so many hours googling and reading forums on different methods other people have tried. SO many failures, but I read about so many people who had success in treating their chronic pouchitis. I had so much hope and determination to beat this. I had been so depressed after scheduling Alexis' GI followup, that I was seriously making myself sick coming up with various (horrible) things that could happen because of the chronic pouchitis. I dont know why I do it to myself-- I would give anything to worry about her college fund.. and what career choices she will make.. but I just can't get past the huge IBD wall thats standing in my way.

I hope one day that changes. But until then, I will do everything in my power to keep Alexis healthy. I will try and touch base on everything I have started with her.

Vitamins and Supplements

Fish Oil- 227mg   x4 day
Vitamin D3-2000 iu  x2 day
Turmeric 400 mg x1 day
*B6 2mg
*B12 1000 mcg
*Folic Acid 800 mcg  (all mixed into 1 small tablet that dissolves under the tounge)
Childrens  Multivitamin  x2 day

I have recently purchased Biocidin drops. Not to much info out there from j-pouchers so I will make sure to update everyone on how Alexis does on it.

We have also started giving Alexis her VSL #3 (DS) in enema form. I will say it has not been fun AT all, but I feel as tho this has been the most helpful change we have made. I really feel as tho her pouchitis issues stem from improper emptying of her pouch and the enema really helps clean things out. We recently purchased a "squatty potty" stool as well, so I hope that helps her out even further.


Dietary Changes

I had planned on going full SCD (for a full explaination of the SCD diet, click here! It has been a lifesaver for so many), but after all the other changes we had made I decided I would be a little more laid back as long as we stuck with everything else. However, I did make quite a few changes.

Eliminated unnecessary dairy. Personally, I am lactose intolerant.. so I am well aware of "safe" foods. This was a little touch since Alexis is a huge milk drinker.. but we have been successful in making the switch over to almond milk. We still allow yogurt as I mix in additional vsl into it, but no more than 1 a day.

Limited amount of sugar- Alexis has a huge sweet tooth, so I knew this was a problem we needed to correct. I have been making more of her favorite snacks at home instead of buying them and skipping out on all the extra COMPLETELY unnecessary sugar! We still allow SOME snacks... but in moderation (and defiantly not everyday). No more kool aid, sugary juices or fruit stored in syrup.

Carbs- Alexis has never been a big carb eater, but I still have switched over to organic, whole grain ANYTHING instead of buying the refined, more processed (and unfortunately) more delicious counterparts.

Shopping has become more difficult. I will buy sugar free, gluten free, dairy free and/or organic whenever possible. I shop for a majority of our produce at a local farm that just so happens to be a 5 minute drive from my house.  I am making more clean food at home instead of the processed boxed dinners. We still eat out, but will keep those instances few and far between if possible! I have also been packing Alexis' lunch everyday so I know exactly what she is eating away from home.. and that it is "safe".

Making all these changes have been fairly expensive, but totally worth it since it is not only benefiting Alexis-- but the entire family as well. I hope to update in another 6 months that she is doing very well and has made even more progress!



Now, and update on our everyday life.. Can you believe Alexis is almost 8!? (I can't! Seems as tho she was only a baby just yesterday..) She is in the second grade and recently started gymnastics! She is around 4 ft tall and is weighing around 60 pounds. After being stuck in size 6 for the past few years.. she has finally graduated to a size 7/8 and sometimes even an 8/10! She learned how to ride her bike without training wheels a few months ago and has become quite obsessed with making normal everyday objects for her American girl dolls. She loves watching youtube video tutorials.. so I was planning on making a video to post directly to the blog with all of her personal feelings regarding her jpouch to date.

We recently moved into our *forever* home and Alexis finally has her own bedroom, which she is ecstatic about. Hard to believe we went from a 1200 sq ft house  ( 1 and a 1/2 bath) to a 2500 sq ft house with 2 full and one half baths! As a family of 5, we were bursting at the seams so this move has been such a blessing. I felt as if giving Alexis her own space was important, and the extra full bath has been (and will continue to be) a lifesaver with 3 girls :)


Hope to update more soon!

Thanks for reading!!

Donations-- and a quick update!

Alexis is almost 2 years post op total colectomy and 1 year 7 months (to the day!) post op jpouch takedown. Despite the anal stenosis, several rounds of pouchitis, and emergency surgery... things are going well. I was so scared and overwhelmed during my last post that I immediately just regretted everything I ever put Alexis through. Somehow, we all prevailed, and believe the outcome to date was (for the most part) worth the wild ride. She is doing great currently! She is finishing up her 1st grade year (and is excelling at it! Top of her class, despite all of the days she missed!) and she is finally well enough to learn how to ride her bike WITHOUT training wheels. A little late to the game, but I know she will get it in no time!

We are back in gear raising money for the Crohns and Colitis Foundation of America! Currently, TEAM ALEXIS, has THREE ways you can help us out!

You can donate to our team page directly here!!!

Or you can place an order for a Bravelet right here! Cute purple colored bracelets. Each bracelet yields a $10 donation!

You can also go for lunch or dinner May 16th-May 18th at Uno Pizzeria & Grill in Pickerington on 256. A portion of your total will be donated to Team Alexis. We will have a booth set up right in front with a display of Alexis-- also we will have a ton of flyers in hopes random patrons will grab one and increase sales even more! Make sure you submit the "dough ticket" (flyer) to your server, so your meal will count!! Spread the word!!

Alexis' wish trip to Disney has been postponed until around the end of the year sometime. She is looking forward to it more than anything, and we cannot wait until it is our turn to take off. This girl deserves the world handed to her on a platter, but to a 7 year old girl-- this trip and everything the foundation is planning for her is a pretty close second! I just hope the next few months go by fairly quickly for us (specially since we are selling our home!)

so, until next time...:)

Wacky Day at school!

St. Patricks Day!

Visiting our local dam!

If I only knew then...what I know now.

One of these days.. I will make myself sit down and go over all that has happened over the last few months. I haven't been updating because I am so busy with my 3 girls (although, I wish it was because I had nothing to say.)

I will say that at this point, I wish we never had the colectomy. I wish we would have pushed further and tried more medications. I know once UC patients get to a certain stage in the disease, that there isn't anything left to do but remove the colon.. however, I feel that I was so uneducated on various methods that are out there at the time that I felt as tho I had no other option. I fooled myself into thinking the colectomy would be our saving grace, and that it would allow Alexis to live a NORMAL, HEALTHY life... because, like they say..she would be CURED! Unfortunately, it has only lead to a whole other slew of problems. More surgeries, PTSD, anal stenosis (that includes at home dilation done by yours truly :/ ) and long term antibiotics.  We are currently hoping and praying we aren't dealing with Chronic Pouchitis.

If anyone has any immediate questions, email me. I will respond and share as much info as I can.


Until next time!

1 year 3 months post total colectomy

Sorry for the serious lack of updates. As a mother of 3 kids (Alexis will be 7, Kyleigh is 3 1/2 and Kennedy is 6 months old) , I can never find the time to sit down and just write without someone needing something -- and by the time I can get back to it, I can't collect my thoughts enough to make any sense! I am always up to answer any questions via email...ANYTIME! I may not update, but I am always checking in :)


So, lets get down to business.

Alexis has been doing fabulous for the most part. She averages about 5 bathroom trips a day, and manages to sleep all night! We are not giving her any medication besides a probiotic (VSL #3) and she can eat everything besides popcorn, as it causes major stomach pains! We have also limited the sugary drinks as it also upsets her belly, and milk at bed time is a huge NO-NO. She was having some problems with incontinence overnight and we finally figured out that milk played a huge role in that. We took away the milk, and the accidents stopped. She still drinks it throughout the day and handles it just fine.

A few weeks ago we took Alexis and her younger sister to Kings Island.  I was worried how Alexis would handle it since it was so hot out and I didn't know how all the walking would affect her body. She did great! We made sure to keep her hydrated and she had a blast the entire day. When Alexis had her colon and her UC was active, we could never do anything like this! It was so nice and I can't wait to do it year after year.

Forgot to mention that Alexis started first grade, and is surpassing her grade level in nearly every subject! I am so proud of her with all of the school she missed last year. She is so awesome!

Just wanted to give all of her followers an update. I apologize my post is all over the place, but I desperately wanted to update while keeping my kids in line. ha!

You're beautiful baby from the outside in

This picture makes me an emotional mess. Just seeing her "before" picture brings back the painful memories of all that Alexis went through, as well as my family. Totally not fair, but she dealt her hand of cards like a champ-- and came out on top.

Updates!

Alexis is doing great! She is currently on summer vacation, and anxiously awaiting what first grade has to bring. Despite all of the school she missed during Kindergarten, she is still at nearly a 2nd grade reading level and is reading anything and everything she can get her hands on!

We are in the midst of battling her first go round with pouchitis. Bad stomach pain at the beginning but once I got her to the hospital and on the antibiotics, she did a complete turn around fairly quickly! Just a few more days left on her meds, and she is good to go. Hopefully we don't encounter it again for a looong long time!

I will leave you all with an updated picture. Look how good she looks! To all of you parents out there who think getting a colectomy is the end of the world: its not. Alexis was so sick and the j-pouch has seriously given her life back!

Happy and Healthy.... :)

http://www.buzzfeed.com/summeranne/24-small-meaningful-acts-of-kindness

Alexis is #17 in this article! It's amazing to still come across articles regarding all of the Reddit love she received! They really lifted her spirits after her operation(s).

NO news is good news!

So, I sincerely apologize for the lack of updates. There just isn't much to say when things are going so well. According to my web stats, I am still getting several hits a day... so if anyone has any questions on anything.. please feel free to ask!

Alexis is still symptom free. The only medication she is prescribed is a probiotic and she is growing like a weed! She is above average in nearly all of her school subjects (which really surprised me considering how much school she missed out on) and for the most part she is always pain free. We are still dealing with the all mighty butt burn on occasion, but it is not nearly as often as it was in the early days. We also deal with random episodes of painful cramping, but that is also to be expected. Most of the time, taking a breather helps out. Other times a dose of tylenol is needed... either way, she is still happier now than she was 6 months- year ago.

Since my last update, my family welcomed our final member!

Meet Kennedy!

I am off to do some cleaning for this upcoming weekends festivities. I hope you all have an awesome Easter!

2013 Take Steps!

Alexis and our family will once again be participating in this years CCFA Take Steps, Be Heard Walk for a cure. Last year Team Alexis raised around $1500.00, and we are hoping to surpass this for 2013! Alexis is currently "cured" of Ulcerative Colitis, but she will always be a member of the IBD family. I want nothing more than a cure to be found so other kids like her can live a normal life without undergoing the numerous surgeries to remove organs!!

If you can help us out in ANY way, we would appreciate it. I hope we can raise over $2,000.00 this year!!

Personal Page URL: http://online.ccfa.org/site/TR/2013TakeStepsWalk/Chapter-CentralOhio?team_id=120353&pg=team&fr_id=3821

Can you believe she is already back in school? 7 days post op and she was begging to go back!

Going home!

Post-op ileostomy Reversal

Tomorrow!!

I am so excited :)

Alexis has done SO well they feel comfortable releasing her just FOUR days post op! I was not expecting (yet hoping) that we would be leaving so soon. Her tiny body bounced back quicker than I imagined and you would never guess that the girl JUST had surgery! She has only requested Tylenol twice since being taken off of the pain pump. Such a trooper!

The only requirement we must meet before being discharged is meeting (once again) with the G.I department. I will get to discuss how we will treat Alexis from here on out. Not sure at this time if they will request probiotics or anything of the sort-- but we shall see! I will update again within the next few days!

My little J-Pouch Beauty Queen--first post op meal!