Rowans colectomy operation

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Hope the growth is nothing important and am very glad you are almost home!!!! :medal1:
 
HEY Mary and dear little ROWAN the forum star :medal1:
Happy to read all is going well and you are heading home.

The "growth" sounds to me as you described it, like a bit of necrotic tissue.
 
So fab to hear you are going home Mary! :):):)

I hope all continues to go well hun...:hug:...and I hope the speci is of no consequence. I will put my two cents worth in here and say could it have been a necrotic area that caused by trauma during surgery???

Good luck Mary and mega hugs to that darling girl of yours! :ghug::ghug::ghug:

Dusty. xxx
 
The pathology result is back on the tissue they removed from next to the ostomy. It is fat tissue and is likely from an intraabdominal structure called the omentum which is taken off the colon when we remove the latter. This was likely a piece that was cut off during the procedure and worked its way out of the ostomy site. Nothing to worry about.
:D
 
Oh...am I SO pleased to hear it!! GO Rowan! So wonderful to hear she is doing well.

Izzi and I talked about her surgery a bit this morning. She is fine with her colon being removed but doesn't want to "poop in a bag". I probably brought it up too soon but wanted to give her some time to get used to it...we made some jokes about it and I am hoping she will come around. :)
 
So happy to hear how well things are going !! :)

Is she practicing/playing with her Ostomy Doll? Has she named her own ostomy yet ? It took Gab a bit to name hers, but when she did it made it so much more comfortable to talk about. I don't know what it is about that "name" but it helps for sure! :)
Oh and hey, why not 'bedazzle" the bag ?? Could be a great way for her to get more comfortable with it ~ and with friends and family. How fun right ?! :)
 
My friend Maggie has a vbolg called Let's talk IBD. She has ways of making the bag look good using duct tape with cool patterns... like zebra. Rowan named her ostomy Blubber Butt.:rof: She got it from the movie Happy Feet. So Blubber Butt farts all the time and I say did you fart? and she says no it was Blubber Butt and laughs. She doesn't have an issue with it and if it fill she tells me. I told her they fixed her belly. She just now today noticed the c-section scar. She hates it when I want to remove the bag to clean the site after sleeping. I think it won't be long until she doesn't care about that either. We went shopping today. She loved being out and about. It is like Rowan before UC showed up. I actually forgot for a moment and was living again. She is off all pain meds. I have a huge bottle of acetominephine but she doesn't want it. She says she don't hurt. Compared to the pain from her UC it is all relative to her I think.
 
That is such wonderful news !! Yeah !! :)

Oh, and I follow Maggie on Facebook !! I love what she does ! What a busy girl and so inspiring ! :)

I'm so happy to hear that Rowan is doing so well !! And of course...Blubber Butt just may be the best ostomy name EVER !! :rof::rof:

Love, Love, LOVE it !! :D:D
 
Mary, I have been reading this thread from post #1, and your previous topics.
I swear to god I teared up from joy when you said how well Rowan was doing, long may it continue :)

:soledance:
 
Crohn's Mom said:
That is such wonderful news !! Yeah !! :)

Oh, and I follow Maggie on Facebook !! I love what she does ! What a busy girl and so inspiring ! :)

I'm so happy to hear that Rowan is doing so well !! And of course...Blubber Butt just may be the best ostomy name EVER !! :rof::rof:

Love, Love, LOVE it !! :D:D
Click to expand...

Maggie is a great inspiration. I love her spirit. She offered to Skype with Rowan and dress up ostomy bags. Very sweet young lady. I have met so many great people, I am thankful for each one of you.
 
When the going gets tough the tough go shopping! Go Rowan!

Mary, I have been quietly reading your progress but just couldn't contain myself any longer. God bless you both! The prayers of many have been answered. I am so happy you have your girl back!
 
Oh Mary, reading this makes my heart sing! :):):)

Onwards and Upwards!

:mademyday:
Dusty. xxx
 
Happy news on here makes my day and especially about Little Rowan :pika:
No more pain no more drugs...CURED...typing that word made me tear up...
Only good things ahead for her...this will all be a distant memory.
 
Ohh no we had our first WARDROBE MALFUNCTION TODAY. Or should I say bag explosion. First thing in the morning I hear, OH NO THIS IS TERRIBLE. I fly out of bed. The wafer came off by her belly button, I am guessing from too much gas. Ohhh it so sucked! She had poo in her hair all over the floor her clothes. She was crying, I was wanting to cry. I had just woke up was emptying her bag and she was freaking out about her hair and I didn't roll the pouch back up and let it hang and poo got on the floor and my foot. It was horrible... I hope that never happens again. Awww crap. Literally.

Nw for something positive... Went to Hospital for follow up. All is well, she is doing great. She is making me a gluten free cake at my moms right now. DH and I are going to have date night tonight. So excited. Take care my friends.
 
Oh God...a poo explosion...indeed horrible. Poor dolly. :eek:
BUT minor in the big scheme...she feels good and is doing great...YAY ROWAN. :sheep: :clown: :Flower: :applause: (I just like all these smilies)
 
I am so glad Rowan is feeling better!!! Sorry to hear about the Poo explosion but glad it happened at home. This same thing happened to my friend's son (high school) when he took a swing during golf practice and his belt punctured his bag. He was covered with poo in public. :( He was embarrassed but this kid has such a great attitude, he handled it well.

Have a great night out, you guys deserve a date night. :)

(((Hugs)))) to Rowan.
 
Rowan fell at my moms yesterday. Her stoma bleed pretty badly. I cleaned it up and it looks bruised on the bottom half:( called the on call ped surgeon, she said it is normal for they bleed pretty easily. Still stressed out about it. Date night wasn't cancelled but was delayed an hour. I have to change the bag agin today bc of the gf chocolate cake she had last night. It is a mess. What a day stoma issues. I hope today is better.
 
Oh no Mary. So sorry you had a rough day yesterday and that today already seems to be starting out rough. Sending you lots of wishes for a pick up to your day!
 
Awww...Mary...I hope today is a better day too. (((HUGS)))

I never even considered the issues with falling on it/injuring it...it must be scary!

Sending love from Isabelle...

Johnnysmom...what a story...I can imagine in these instances it must be great for kids with stomas to have friends with stomas...to commiserate with when something embarrassing happens. I am glad he took it so well.
 
It doesn't help that Rowan is very clumsy. The apple doesn't fall too far from the tree. She runs one way while looking another. She toe walks still. I constantly am a broken record about the toe walking, bc it weakens her stomach muscles. Flat feet, flat feet. My two year old says it too. Hopefully she will get some balance soon. One week home and already an injury.
 
Ha Mary, my second one now age 28 toe walked until she was SIX. It really looked strange. I had her checked of course for tendon issues, none were there, she was just an oddball. :ylol:
 
Well Rowan has been doing great. She had an accident yesterday. My mom took her over to a friends house and she played with the dog. The dog punctured her bag and yes D on the carpet. Rowan handled it pretty well and my mom thanked me for giving her an emergency kit. She managed to change the bag and was very proud of herself.

Last night after I fell asleep my DH went to check on Rowan as we do every night and she didn't want to get up to empty the bag. She started crying that urgent cry. I woke up and was in terror. When will this feeling of the sky is falling go away. I know she doesn't have ulcerative colitis anymore. My adrenaline was pumped up and I couldn't fall asleep for an hour. She was fine just was tired and didn't want to wake up.

Rowan said to her great aunt yesterday, "I don't have ulcerative colitis anymore, I don't poop with my butt either, one day I will poop with my butt again. I don't want them to touch me, but I want to poop with my butt again." This is the first time she acknowledged the actual disease. Now I know she has been listening to me try to explain things. Sounds like she understood. Glad for that.
 
What a cute kid! It's funny how they just say it how they see it. Glad she is getting better. I'm sure you will slowly start to relax, but it will take time as you have certainly had a really hard time with it all. She sounds like my daughter being the one to get hurt all the time. The school keeps calling me and I get the "It's nothing to worry about but ..." :ybiggrin: and if I hear a scream at a playground, I automatically assume it's her!
 
I am so glad to hear Rowan is doing better! Hopefully things will continue to go smoothly. I have a good friend who just went through the whole thing with UC and he just had the reattachment and is doing great! I am also glad to hear she is understanding and processing everything that is going on. These kids are so smart and such troopers it is amazing!
 
Scheduled Rowans take down operation today for Week of July 16th. We do barium xrays July 2nd to check for leaks. I asked the doctor about the rectal dilation and she said she rarely does a dilation on children with UC. Dilation is usually crohns. She also said most kids Rowans age that are diagnosed IBD usually have crohns and not UC. That didn't make me feel any better about the take down operation. 4 day stay, no bowel prep, food after the first day is over.

Ordered Rowan a stoma guard today and the equalizer from stomaplex. It was $180 and not covered by insurance. :( better safe than sorry.

Everything is going well. She is happy and playing. The doctor said everything looks great. Haven't had any blood work drawn.
 
It all sounds very scary - but sounds like she is doing really well at the moment - good luck with everything xxxx
 
I am so glad to hear she is doing well! I will be praying it is UC and not crohns. I hear that they often tell parents that in order to CYA themselves.
 
Good luck hun...:hug:...I hope all continues to go to plan and Rowan goes from strength to strength...bless her...:wub:

Dusty. xxx
 
kimmidwife said:
I am so glad to hear she is doing well! I will be praying it is UC and not crohns. I hear that they often tell parents that in order to CYA themselves.
Click to expand...

I spoke with a friend who is a doctor too and she think maybe the surgeon was bringing it up to let me know how lucky we are. Could be possible for both. I need to quit analyzing and just be thankful. Which I am but I don't think I can ever get over the fear factor. My brain is still tramatized. I am the queen of what if and hindsight. Back to the great advice of crossing each bridge as I get to it. Too much of a A personality control freak is a bad thing.
 
hmmm...yes maybe but remember it was that control freak, type A personality that got your daughter the proper care she deserved and got you all on the right track! You amaze me and just typing this now I am brought to tears by your strength.

If you figure out how to get over the fear factor write a book and you will be a millionaire!
 

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