Bag changes...and leaks!

I apologize for the lack of updates. But, everything has been so "normal" lately, its hard to even find a few sentences to write in order to piece together an entire post! Today, I have something to rant about.

The time between bag changes.

I just cannot seem to get it to hold past day #2. I don't know what it is, but it seems every 2 days it starts leaking and we have to rush to change it. Her stoma is very odd shaped. Longer on one side than the other, and her belly is also more protruded on the tip/right side than it is on the left, so I attempted using the paste this time to hopefully get a few extra days in. (For those who are curious, we are using the Holister brand New Image wafers). It always seems to leak in the SAME spot, so I am hoping this works! The only good thing about changing it every 2 days is that I can make her shower with it all off and give her skin a break!

Alexis is just a few weeks away from Kindergarten. I must start working on allowing her to empty her bag. It seemed we had so much time to practice, and time seemed to have reallllly gotten away from me. I know she will do awesome, but I can't help but feel nervous and scared about this transition. I just hope we can start getting decent wear time in between bag changes so I don't have to worry about leaks! She is very excited to go, so I won't burden her with any of my worries. We will get through this and she will do great!

Follow up with the Surgeon yesterday and..

Thought I'd share the little bit of *new* information I have!

Alexis had her follow up with the surgeon yesterday.. We discussed the next step and I explained to him that I would love to have both procedures done prior to March. He took a look at Alexis and seen how well she was doing and said that could 100% be done. He said if all went well, he would be comfortable completing her j-pouch by the end of the year! I wish we could finish the process with just one more procedure, but I know the 3 step will ensure that everything is healed and working correctly before we take the big step into connecting everything. I have no plans on rushing her, and will encourage her to let me know when SHE is ready. The surgeon said we could be back in as early as mid September. Not sure if I am 100% comfortable with going in that soon since Alexis will be starting Kindergarten at the end of this month.

I am sure there will be people who do not agree with how quickly we are moving forward, but this is what Alexis wants and what her Dad and I think is best for her. We want her to feel normal (both inside and out) as quickly as possible. She has expressed to us on MANY occasions that she is happy that she doesn't feel sick everyday, but she can't wait to get rid of her "big red spot".

So, keep the *encouraging* words coming, we could sure use them!

Good Day!

I was contacted by a member of Girls With Guts and asked to write a piece detailing how I have managed to stay strong throughout this entire process, below you can read my article.

As a mother of a 5 year old with Ulcerative Colitis, you would not believe just how many times I have heard people tell me “I don’t think I could do what you do, you are such a strong Mother.” But the thing is, it’s not strength and it’s not exactly like I had a choice, I am simply doing what I must do as a Mother to care and protect my child when I am forced with no other options.

Alexis was diagnosed at just 3 years old. My world shifted and I felt like I was losing control.  As a mother, I felt like I let my innocent baby girl down. Fitting in Doctor appointment after Doctor appointment, to making sure she received her medications on time (at one point I had to give her medicine to her ten separate times throughout the day) was all I could do to ensure she felt as normal as she possibly could.  Many hospitalizations later, I was given the option of Remicade or total colectomy. I wasn’t ready to put her through such a major surgery, but the medication had side effects that scared me to death. That saying “Mommy knows best!” isn’t always true, because I had no idea what to do. Her G.I Doctor talked with me several times and suggested we give Remicade a fighting chance, so we did. It failed.

July 12, 2012 was the absolute scariest day of my life. Alexis was forced to have a colectomy with a temporary ileostomy, and again I felt as I had failed her. The pain I felt while she was in the operating room is simply unexplainable.  Seeing her in recovery was also a moment I will never ever forget.  These are situations you never expect to happen as a parent, but when you are forced to deal with them you must always put your best foot forward and do it with a smile. So we did, and we made it through (sometimes, barely hanging on!). We were lucky enough to prepare Alexis for the transition which made it 100% easier on her. She knew that without the surgery, she would still be sick. She has taken the change so well, and I would like to think that my husband and I had a huge role in that.

So, to ANY parent in any comparable situation: You are allowed to cry, be angry, hurt or sad.  These are our precious kids we are talking about here! What matters most is that you are there for your children when they need you. Talk to them; let them know it will be okay; shower them with your love and attention.  As a parent, that’s really all you can do when you are left with no other options.  Walk tall and they will follow.

“You never know how strong you are, until being strong is the only choice you have.” 

You can click here to visit their site.

I was honored to write for them, and I am very excited to spread Alexis' journey with even more people. 

Now, today was a very exciting day for my family. I found out at the beginning of the month that we were expecting (thus , my lack of updates-- I have been sick..and just TIRED!) I visited the ob and had our first ultrasound today. This little guy (or girl) was there for Alexis' surgery, and made it out a-okay. Another little fighter. All the stress, lack of sleep (and food for the most part!) and here they are. Despite all the hurdles we have faced up to now, I know everything is going to be okay. Alexis is feeling good, and she is BEYOND ecstatic to welcome another sibling!

Happy & Healthy

Sorry for the hiatus. I have been feeling horrible the last week or so. Good news is Alexis has been feeling great! She has adjusted so well, I truly cannot complain. Even when I am feeling down about the situation, it  seems as there is ALWAYS someone there to remind me just how much of an inspiration Alexis has been to everyone. I checked my mail yesterday and there was a package from a man in California (who also had a colectomy) he sent Alexis a stuffed piggy some lip gloss and sticker earrings (and yes, both of my girls got them EVERYWHERE!). Today I check the mail, and we received a $530 gift card to Toys R Us and a $50 gift card to Olive Garden, courtesy of our friends Brandon & Liz (and from the awesome users of the Howdy Inc forum & Pearl Jam's 10 club forum.) She has seen her fair share of bad days, so its so amazing to be able to watch her enjoy herself. What kid wouldn't love spending that much money in a toy store!


The Great Bowel Movement contacted me and offered to send Alexis a shirt! They seen how much of an impact she made on the IBD community and decided to start a new program called "SponserShirts." By "buying" a GBM SponsorShirt, they will be able to send IBD patients who are in the spotlight, making a difference, or simply fighting an extraordinarily brave battle with their disease. Such a great cause, so if you can, help them out. I know Alexis will absolutely love her shirt--and I hope they know how much we appreciate their gesture.


I still receive multiple emails a day too, letting me know how much Alexis has inspired people around the WORLD. It still gives me butterflies and makes me extremely happy to know that Alexis has touched the hearts of so many.


Today marks 2 weeks since Alexis had her surgery. Hard to believe she has bounced back so quickly! She is finally happy AND healthy (and looks better than ever!)

I can't complain..

Just wanted to drop in and update everyone. I have been extremely busy over the last few days, and just couldn't find the time to get on here.

Alexis is doing very very good. Eating, drinking and back on her regular schedule. She feels good and I have no complaints.

So to everyone who has emailed me; I WILL respond. I enjoy the feedback and love the personal stories. I am very interested in talking to those who have decided to go with the j-pouch and how they feel about their decision and how the surgery itself went for you.

Thanks for checking back; I will attempt to have a better (longer) entry for everyone next time :)

7/19/2012

Shortly after my last blog post Alexis started vomiting. Since she was hardly drinking or eating to begin with I decided to take her right back to Childrens Hospital. Once there they did some blood work, gave her some meds, preformed a CT scan and pumped her full of fluids. It was a loooooong day, but we are finally resting back at home.

Her CT came back clean, no blockages or abnormal adhesion's whatsoever. Her blood work looked normal (I haven't been able to say that in over 8 months!) except for her white blood cells, but they are slowly but surely coming down from what they were pre op.

So all in all, we have no idea why she was vomiting. Maybe it was too much too fast? Maybe she caught a bug? Maybe she was just too dehydrated? Who knows. It's so hard to pinpoint vomiting in a child; as (like the Dr said.) "you can look at them wrong, and they will puke) I will pay extra close attention to her,and if anything is off-- back she goes.

Just keep her in your thoughts, that she continues to heal properly and stays OUT of the hospital!

P.S- Alexis made the Huffington Post-- so awesome! Huffington Post Article. I love that the IBD community is getting the awareness they so much deserve!

Two steps back?

One week ago today, Alexis had surgery to remove her colon, and a temporary ileostomy was created. Since the surgery itself was done laproscopically, she seemed to bounce back fairly quickly.. pushing herself to walk to the playroom the day after surgery, going to the bathroom all by herself just a few days after that, and eating real food just 4 days post op.  She absolutely hates when I tell her shes a tough cookie, but she really is.

Alexis and Stoma Sue

But, here I am, just trying to make it through the day with my head still attached. Alexis has little bursts of energy, but for the most part she spends most of her day laying around. She still isn't eating and I still find myself forcing her to drink(pre-op, she would drink ALL day long!). Her output has slowed down, which is nerve wracking..but I am trying to remind myself that she isn't necessarily taking much in. She doesn't have a fever, and she isn't vomiting or in pain.. but it's hard not to be concerned. Against her wishes, I have changed her opaque pouch to a translucent one so I can monitor her stoma color as well as peek at her output when I see fit. I know I can be a little overbearing at times, and she hates it, but I want to know the second something is wrong (if there is something wrong, that is)

I just wish I had someone to tell me that all of this is normal. I called and talked to the nurse and she said that loss of appetite it normal, but why all of a sudden is she drinking less? At the hospital she was running around non stop, and now she is laying around more.  

If anyone can give me some insight, whether or not I should be more concerned than the nurse is letting on..please oh please let me know! I so badly just want things to be normal for her!

Not much to write about today. Alexis is doing about the same as yesterday.. still laying around and not eating much (who am I kidding-- hardly anything at all!) and I am having to force her to drink. Not sure what her deal is really... hoping she gets out of this funk asap.

Alexis all ready for the CCFA 2012 walk!

We encountered our first leak today. Not to bad at all, but I wasn't expecting to have to change her entire appliance after (almost) 3 days. I am going to try and get her used to wearing the ostomy belt, as I know that can improve the amount of time between bag changes. I was definetly more comfortable and relaxed changing the wafer, cutting it to size etc etc.. this time around vs. during the teaching at the hospital. However, I am kind of worried I cut the wafer just a tad too big. I know this is a  learning experience for the both of us, and I am hoping I can perfect it sooner rather than later.

I am on the hunt for a band for her to wear to cover the bag (think of a belly band--very similar). It will hold the bag closer to her body, thus being more secured and it will cover it under her shirts (since most of her shirts are form fitting). They make special ones for individuals with ostomys that you can tuck into a pocket, and I am not having any luck finding them in her size. We ventured out to the grocery store today and she was concerned about other people seeing it, so I want to get one as soon as I can, especially with school starting in a little over a month for her. 

Still no pathology report on Alexis' colon. I am getting a little antsy. I hope it doesn't mean anything bad. For once, I hope we have good news and they find no indication of Crohns whatsoever. Prayers that she is healed of this disease for good!

First Day Home..

and it went relatively well. Alexis had some "leftover" stuff in the lower part of her intestines, so she kept running to sit on the potty throughout the day. I'm not sure if she was just reverting back to old habits, because there were several times I had to go in and remind her she no longer had to go #2! She was also more lethargic.. lots of laying around and not so much eating. I made sure she got her liquids in, and her stoma and output look good, so I think I will take her out tomorrow to pep her up a little. I am sure the excitement of just coming home was tiring for her (as it was for me-- I took a 2 hour nap..and I never nap!) She is so amazing!

I seriously cannot believe all of the attention Alexis has received. I keep telling her she is a little internet sensation! I have almost 11,000 page views.. she received over 500 cards while in the hospital AND I just so happened to be scrolling through my facebook feed today, and out of no where I seen a pic of her that I posted a few days after surgery. It had been shared hundreds of times, and liked by THOUSANDS! Not to mention, all of the attention she has gotten from the Reddit community-- it is simply amazing. Alexis is a complete stranger to them, yet they have connected with her and have supported her 100% . I have said it before, but I'll say it again... THANK YOU.

P.S-- Did you guys get a chance to watch the video I posted in the last entry? Kyle contacted   the guy who made it, and he will be sending it out to Alexis. I am so excited!

Post Op: Day 4

7,125 page views??? WOW! It's hard to believe that Alexis' story has reached so many people. I can only hope that it reaches someone that needs questions answered or encouragement regarding ANYTHING related to Ulcerative Colitis (I believe I am a PRO at that topic) or colectomy. Like I said, we are opting for the 3 stage j-pouch, and just completed stage one on 7/12/12. You can email me at tara.n.blackburn@gmail.com ( or you can find me on fb: https://www.facebook.com/tara.blackburn)

My husband and I will be working on a more "professional" blog here in the NEAR future, but I am having a HORRIBLE time coming up with a sleek, catchy name. I would like it to pertain to (obviously) my role as a parent to someone with IBD who had a colectomy. If you can think of anything catchy PLEASE let me know!!

Alexis is doing great! After a week of no eating, she was given the okay to chow down on some actual food today! She ate so much, and her body handled it exactly as it should. It was nice, because her "output" finally became something other than pure liquid.. which meant WAY less emptying!

Kyle and I finally had the oppurtunity to meet with our stoma nurse today. She gave us an entire months worth of supplies, made our first order with the home health company and taught us the ins and outs of changing and emptying out Alexis' ileostomy bag. Alexis was scared and screaming because she thought it was going to hurt, which made the entire process exhausting, but we pulled through and got it done. I managed to accidently touch the stoma several times while switching out the wafers and that was weird (but, who am I kidding-- the entire process is exactly that) but it still wasn't nearly as bad as I thought it would be.

We are on track to leave the hospital tomorrow morning, and neither Alexis and I can hardly wait! We have packed up everything-- (including the almost 200 cards she received while in the hospital!!)

Tomorrow can't come soon enough!!

P.S-- This is AWESOME! CHECK IT OUT!!

It's amazing how much support Alexis has got from the REDDIT community-- she is absolutely loving it, and we appreciate it ! It has made this entire experience so much easier. It's mind blowing how much support you can get from absolute strangers! THANK YOU!!!!!