Rowans colectomy operation

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QueenGothel

QueenGothel

Joined
Oct 13, 2011
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Location
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Figured I might as well start a new thread the others are getting a bit long.

I spoke with the surgeon yesterday. She walked me through the prep and surgery. They are opting for a Dulcolax and antibiotic prep bc of Rowans constipation history. Antibiotic always give her diarrhea. With a ton of fluids.

The surgery will be laparscopic but there will be a c-section scar :( bc of the size of Rowans colon and the prolapse issue. She wants to make sure she gets a good look at the rectum even though she plans to cut all of it out but a cm.

She will be searching for signs of Crohns before creating the j-pouch and if there is a sign they will not do the j-pouch. They will contact me if they suspect Crohns to give me the play by play. To see if I want a permanent appliance put in for ileostomy.

She said according to all the notes she has read Rowans case present 100% UC. No questions beyond the prolapse and constipation issues which are unique to her case.

She will be pain controlled with a constant drip and have a button for anytime the pain is too much.

She wanted to warn me that most kids do great for the first 3 days and then once food starts to be introduced they either do really well or for the majority start to decline. That this is normal and to expect it. :(

Getting nervous... I will keep in touch.
 
Awww I hope this is easy, and a quick easy recovery for Rowan. My thoughts and prayers will be with you (((((hugs))))
 
Good luck with surgery!! Thinking of you and hope all goes as smoothly as these things can.
 
I will be thinking of you and Rowan, I really hope this puts an end to her suffering. You have really been through the mill over the past couple of months. Good lluck
 
UGH...*hate* reading those words as it really brings it home, but I am hoping for the most wonderful outcome for sweet Rowan!!!

Have you told her?

I finally sat down today to tell Izz that the new doc that her doc is sending her to see is a surgeon. She was a bit upset but we talked about how many surgeries mom has had and how that's how I met her and her brother! She asked if I was awake and she told me she'd prefer to be asleep. ;)

I wish I knew how long I had to prepare...she is going downhill fast, and while I don't want to give her too long to worry about it, I also don't want to end up springing it on her last minute if her surgery ends up being in the same trip as our consult.
(((HUGS))) Thinking of you! :)
 
Thanks Angie, I told her we are going to fix her belly at the princess hospital soon. We marked the calendar in her room and have been marking off days as it approaches. Beyond that she gets really upset and wants it to be fixed at home. I told her she would poop out of a hole in her belly and asked her what she will name it. She has been watching happy feet 2 lately and decided to name it blubber butt. :lol2: lol. I really do not think she understood the information at all though.

They told me they will do a dolly demonstration with Rowan to sort of explain how things are going to go down without too much details. Putting the appliance on the doll and showing how to change the bag mainly.

PRAYING NO CROHNS!
 
Sending lots of wishes that all goes well and that Rowan's recovery is quick! :ghug:
 
I cannot even begin to imagine what you are both going through with your babies right now. What wonderfully strong women and role models you are. :hug: I have absolutely no doubt in my mind that both your girls will grow into amazing women that will go far in life. Kudos to you Mums and to your beautiful princesses. :rosette1:

Mary, I wish, hope and pray more than anything that is "just UC" as well. Your darling girl deserves relief and her life back now. Believe me, the scar will fade to almost nothing, Sarah's is just a hint of a very fine thread of silvery white. If I didn't know to look for it I wouldn't know it was there. The surgeon thought I was going to freak out at the time because she went in for a simple laparotomy and appendectomy and came out with a resection. Since she was so underweight at the time the scar extended across most of her abdomen BUT as she has grown and gained weight it is nowhere near the size it once looked and as I said, I have to look hard to see it. :)

Good luck hun, may this be the beginning of the rest of her life!

Much love and respect, :heart:
Dusty. xxxxxxxx
 
Mary and Angie I am thinking of you and your girls everyday. You are going through such hard times. Rowan's surgeon sounds nice. Good luck with the prep and the surgery!!
 
As I was reading through this, I was thinking exactly what Dusty said! I just cannot imagine your worries. You both should be in the mommy hall of fame!
 
Wishing you the best possible outcome this week. Also when you lookback years from now you think of what a positive change this made in her life. :hug::hug:
 
Praying for you and Rowan! I bet she comes through with flying colors. Can't wait to hear stories of her playing and growing with no pain.

Regarding the scar....My appendix ruptured when I was in the 3rd grade. I was in the hospital for a month and had two surgeries as a result of the rupture. My scar is a good 6 inches long with two 1 inch scars below it where the drain tubes were. It has NEVER bothered me. I don't remember a time when it wasn't there so it's just a part of me. It's noticable because I'm keloid and don't heal like most people (I'm special that way :ybiggrin:) and yet it still has never been a big deal. Honestly, I wouldn't spend any time worrying about that at all.
 
Just wanted to say hi- new here. My LO age 8 has Crohn's but also has constipation and recurring rectal prolapse (over a year now).
I hope your surgery for your LO goes well.
 
I just wanted to say how i've been thinking of you and Rowan, and how I wish the very best for you. I hope that there is a fast recovery and it is soon back to fun and laighter and enjoying every day.

And remember you are allowed to feel very upset if you need to - this is a really difficult time.

Take care,
LilyRose
 
You guys are in my thoughts and prayers today Mary! Can't wait to hear the good news:)!
 
Surgery began at 9am it has been 1 hour waiting for my update at 11am. This hospital is soo nice. They have everything we could possibly want or need. So far all has went well. When they took us down to OR They gave Rowan something in her IV and she was a giggly. It was funny I was so serious before we got there and I was kissing her telling her bye and I love her and she was laughing at me like I was bozo the clown. I said hey can you give her some of that afterwards... I love anesthesiologists... They haves the best job.
 
Keeping Rowan, you and your family in my thoughts today! And looking forward to hearing good news !!! :Flower:
 
Thinking of you Mary !
I know this feeling of sitting and waiting for the "update" all to well.
All the best of luck and love !
Thanks for keeping us updated ~ I can't wait to hear how well things went :)
 
Soso glad she is doing well...j-pouch meaning no signs of crohns??!! If so-fantastic!!! Hoping things continue to go smoothly-hugs mama!!
 
Thanks so much for keeping us updated Mary...:hug:...I hope all is going well with your princess, bless her...:hug:

Sending you loads and loads of love, luck and healing thoughts. :heart::heart::heart:

Dusty. xxx
 
She is in her room and pain is controlled. She has a drain tube out of her bottom to relieve gas/poo/mucus, and a urine cath. Surgeon said everything went as planned. Colon came out with ease it was pretty inflamed looking they sent it off to pathology to test for crohns. Surgeon did not see any sign of crohns while constructing the j-pouch. Said she was very happy with the outcome and the ileostomy rose bud looks perfect but will change as it matures. Rowan is wanting to drink water and they won't let her. She has Fentanyl 500 mc Bupivacaine 156.25 mc Per Epidural catheter and has a button controlled by the nurse. They said she will sleep pretty much for the rest of the day. She woke up in the OR and kinda threw everyone off, kids usually take a long time to wake up. Not my Ro-Ro, she never does the expected. Always expect the unexpected. Surgeon said the only thing she was worried about was a leak, so before they hook it all back up they are going to test it with barium to verify no leaks. She thought she saw a bubble while scoping/testing the j-pouch but couldn't get it to occur again. Going to be precautionary at the reconnect but all in all considers the surgery a great success and video taped the whole thing for educational purposes. They completed the surgery in the time allotted, everything went smoothly. All vitals stayed right on point.
 
Mary thank you for updating. I am so glad to hear that Rowan made it though the surgery ok and is doing well so far. :)
How are you holding up ?

Big Hugs
 
do you get to stay home this evening ?
Hopefully you can take a nice long hot bath and relax, and then a good nights sleep! If it's available to you to take that (little) break ~ snag it while you can! You deserve it ! And like you said...Rowan will probably sleep the rest of today, and most likely won't remember much of today anyhow due to the pain meds and anesthesia.
Take care of yourself momma :)
 
Glad to hear it is going well. Hope it is all smooth sailing from here on in. Sending you and Rowan lots of positive thoughts.

:getwell:
 
I am so glad to hear it went well...sending healing thoughts rowan's way...and lots of rest for her mama tonight!!!!~!
 
Very happy to hear all has gone so well!! :rosette1: Hope you're able to get some much deserved rest!:rosette2:
 
THANKS for the update...wow. :thumleft:
Amazing and I am so glad, so glad it's done and she came through it smoothly.
Think, Mary of how she'll never again have to have the IBD drugs...God...awesome.
A happy summer ahead...:dance:
 
Ok now my only issue is she has no idea what has happened under the covers really. I need some ideas how to explain the rest. I am good with explaining the ileostomy. But the pain... Urine cath, drain tube out the bottom, wounds I can't seem to figure that out. I explained the bag before going in. But pretty much chickened out about the rest bc I didn't want to freak her out talking about the surgery. Like she had no idea they cut her open and do I even go there? I don't think it is a good idea but can I avoid it? HELP!

One question at a time is all I have gotten for advice. Baby steps right... Each bridge as I get to them.
 
I thought there was a little kids book on osteomys .
Let me look for the link
I would also talk to the child life experts at the hospital they may have a doll and some tips.
You may want to do surgery on a bear and give it a bag as well with spare parts sometimes that helps
Not sure on the other though
 
Thank you so much for letting us know how things are going. And I am so pleased all went well. Now you can focus on Rowen's recovery and looking forward to life without all the pain and bleeding.

Take good care of yourself, and definitley take things one small step at a time.

LilyRose
 
So glad to hear Rowan is through the op. I had this op last year and even if someone had told me, I would not have known what was coming. But it is only for a few short days and the relief that follows in so worth it. She will be so grateful when she realises she is free from her previous symptoms and pain.

I wish Rowan a speedy recovery and hope you all have a happy summer now xxx
 
Glad it all went well Mary! I know it will take a bit more time but I can't wait to hear that Rowan is pain and symptom free. Great news!
 
I would take her lead Mary. If she asks then tell her, if she doesn't then don't go there. I personally feel that if she asks and you avoid telling her then she will fear that things must be very bad for Mummy not to say anything.

In my thoughts and prayers hun...:heart::hug::heart:

Dusty. xxxxxxxx
 
I agree with the Mayor. Plus I would be very casual in tone when answering, wouldn't say the words "cut" or "operate", just say, oh that's not going to be there long, it's helping for now but soon you won't need it...etc and redirect to another topic. This may not be your style, just sharing how I'd do it. :hug:
 
Hoping the biopsies don't find Crohn's and this is the beginning of a healthy, happy Rowan.

You moms with little ones who have IBD amaze and inspire me. I can't even imagine how tough it must be, but you are doing a wonderful job.

Hugs to Rowan and your entire family!
 
Been thinking about Rowan and checking in here. Hoping for continued positive progress and news-
hugs from Virginia
 
I hope Rowan's pain is well-controlled today. Does the doctor or nurses give advice on how to answer the questions? (I would hope so ... or even a child psychologist to help) Good luck!!
 
Today was great. When I arrived she was dressed and standing up. We walked down to the play room and she stayed on her feet for about 5 hours. She hasn't had much pain but when she sits and coughs. A cough pillow... Aka her flaxseed heating pad not heated, has just enough weight to it to alleviate her pain when coughing. I guess it is normal to cough after a long laparscopic surgery. She is doing great. She is very hungry and they still will not give her even a sip of water yet. The epidural is doing it's job we haven't had to hit the button since this morning. She is not thrilled but I think once she is eating and all the IVs and tubes are gone she will be happy again. She wants to go to the playground... I had to tell her no bc of the IV. :thumbdown:

I emptied her bag today for the first time. She didn't ask any questions yet so I might not even have to explain the rest. She saw the bag and it is right where I told her it would be and is doing exactly what I said so I think she is good. I told her, they fixed her belly and it is all going to be ok from here on out.

It just hit me today, Rowan doesn't have UC anymore. I feel this huge weight coming off and I feel like I can breathe for the first time in a long time.:thumleft:
 
Good for you and good for Rowan. I hope this is the beginning of a long happy ending. (((hugs)))

J.
 
May God give sweet Rowan a pain free, happy childhood now!! She's had her share of suffering. I love how you said it…Rowan doesn't have UC anymore!!!
 
I am smiling big while reading that post Mary...awesome, thank God, it's all over now. It can only get better from here. She NO LONGER HAS UC...what a great line to read...NO MORE DRUGS...sweeet :biggrin: :pika:

Dusty, dancing kitties please...
 
So glad she is doing well! I read the post about her not having UC anymore and you feeling like a weight was gone and it brought me to tears. I'm so happy for both of you. May she continue feeling better every day and soon be able to put all the memories of pain behind her and enjoy life the way children are meant to!
 
Up and dressed??!? Go ROWAN!!! I am so thrilled for you...your post gave me chills! Sending. You love and healing, painfree thoughts! <3
 
She did good today. Up and moving at 10am drank her first drink of water since Monday. Had some Jello and chicken broth, cannot believe she tried them. The epidural is really working well for her. Doctor wants leave it in for another day or two. Introducing solids tomorrow. Then oral meds maybe saturday. She doesn't care about the stoma at all. She is more concerned with the drain tube in her bottom. I think the epidural isn't working so well for the rectum/j-pouch. She didn't sit back down until 4pm, was avoiding it.

She freaked out on the ostomy nurse. Didn't want her to touch it like it is an IV. She apologized to me and said she would be good about changing it tomorrow. We did get a ostomy doll made by Hollister. It is cute has it's own bags. She made a dozen toilet paper flowers today.

I got the predisone weening schedule it is crazy. 20mg then 15mg the next day then back to 20 rotating like this for a week. Then to 20 to 10 for a few days then 15 to 10 for a week. Rotating and weening like this for 7 weeks until done. It is very confusing.

Thanks everyone. I am completely shocked how well she is feeling. I am scare to switch to oral meds. They are planning to use oxicodone.
 
Oh, Mary...I heart your siggy

Mary, mom to Rowan(4) Diagnosed UC 10/14/11
Cured: 04/17/12
Colectomy/j-pouch and ileostomy on 04/17/12
Meds:
Predisone 20 mg daily weening soon.
Ferrous Gluconate elemental iron 27mg 2x a day
Prilosec daily
Natures best Vita-gel mutivitamin
Failed: Asacol, Canasa, Sufasalazine, Remicade

Laughing with my kids and healing more everyday
 
Mary-

Love your siggy too! That is the best!

"Mary, mom to Rowan(4) Diagnosed UC 10/14/11
Cured: 04/17/12"

I hope one day I may be able to say that about my daughter and Crohn's!

Hoping all is well with Rowan and she has a fabulous weekend!
 
So happy for Rowan that she is doing so well! Sending lots of wishes that it continues forever! :Karl:
 
Great news! Your daughter is going to be a great role model when she's older. She sounds like such a strong, determined young girl already. You must be so proud of her :)

I'm glad things are going well for you guys. This thread in inspiration for those worried about the procedure.
 
She ate scrabbled eggs, 1/2 a pancake, 1/2 chicken salad sandwich, some chicken broth already. Epidural and urine cath is gone on oral pain meds. Moving to oral steroids tomorrow. We will see what her pain level is after her nap. She is sleepy, probably from the oxicodone.
 
Aww what a brave little girl and an awesome mum! This whole thing must of been tough on you!

I'm not surprised she freaked out on the stoma nurse. She's used to things on her body in the hospital being painful. To her the bag is stuck on her and probably thinks that changing it will hurt. Once she realises that it won't, if it she doesn't already, she'll be fine.

So impressed that she's up and about. It took me a while and I had mine done laproscopically! I hope she has the drain removed soon. Sounds uncomfortable.

I hope she has a speedy recovery!
 
Heavens to Murgatroyd!!! I dropped off the face of the Earth for a couple of days and Rowan is setting the world on fire!!! What a champion!!! :award2:

Oh Mary, I can see and feel your excitement. :) You have both been to hell and back and at last you can draw breath. Eeeeeeeek! I am so very happy for you and Rowan. :):):)

If it is any comfort...both of my children responded very well to the use of Oxycodone once the PCA was removed.

:mademyday:
Dusty. xxx
 
Yes! :highfive: No Crohn's, now that has really made my day! :D

Big steps and little uns...It can be hard early on Mary, you can seem to be powering ahead and then suddenly you grind to a halt. But that is normal and it will continue to get better hun, it truly will...:hug:

Dusty. xxx
 
Great news on the pathology!

Pain meds can really be rough! Hope she can settle and heal quickly.
 
YAYYAYYAYAYYAYAY ROWAN!!
SO happy to hear UC!
and I can't *believe* how she is eating like a champ!!
sorry to hear she was having some pain but glad she got the drain removed and I am hoping things continue to go super well for you...so refreshing to hear! :)
 
Well she stopped eating bc the oxycodone is to rough on her belly. Then they screwed up and didn't give us her prilosec. So her belly was really messed up from the oxy and steroids this morning. She threw up. They were supposed to send us home tomorrow but I am not ready now. Going to wait. We are going to try toradol per IV. Maybe it won't mess her upas bad. :(. SUX. She just got some morphine, so she is relaxed now.
 
Poor sweetie...it can be so frustrating with their meds in the hospital. :( I was ready to begin dosing her myself so I didn't have to deal with it (it took 8 hours for them to dispense a med I brought from home that the hospital didn't carry, and they NEVER got all of her meds right in one day (2 x a day instead of 3, wrong med, wrong dose, and why would they dispense any meds at 9 pm on a peds unit??))
Hoping her pain gets well controlled so she can continue feeling better and getting home :)
 
The tordol (? Spelling) is working with Tylenol rotation. I guess there is a national shortage of it in IV form. So it is a pill. She walked to toy room and back. DH got her up and walking for 20 minutes tonight. She only ate grapes and chips and water today. Turned the IV fluids back on. I think she overdid it when the epidural was in, working too well. It will take her a couple days yet. They were going to send us home tomorrow but I am not ready and I haven't even saw an woc nurse. DH was trained yesterday. They have her using an adult bag, it is too big for her. I need more supplies and the pediatric ones.

Her pain is controlled but she is not moving so well. Maybe gas is what they keep saying. Having trouble getting her to drink. I hope she feels better after a long rest tonight.
 
That's great that she's managing to get up and about a little!! Definately worth staying in until you are feeling comfortable about it.
 
izzi'smom said:
Poor sweetie...it can be so frustrating with their meds in the hospital. :( I was ready to begin dosing her myself so I didn't have to deal with it (it took 8 hours for them to dispense a med I brought from home that the hospital didn't carry, and they NEVER got all of her meds right in one day (2 x a day instead of 3, wrong med, wrong dose, and why would they dispense any meds at 9 pm on a peds unit??))
Hoping her pain gets well controlled so she can continue feeling better and getting home :)
Click to expand...

Yes, I had all her meds with me too. They wouldn't let me give her my prilosec. They were like no save yours. I was thinking I can replace with yours once I get her the dose on time. But no no no. Stupid.
 
You would think giving out medications would be routine and easily done, but no, the hospitals never seem to get it quite right. When we went in I took Andrew's antibiotics which I showed them. First day and a half they didn't ask about it so I gave it to him my self, then they took it off me, gave it to him once then forgot later on! We are on pass for the weekend but they didn't give me the antibiotics back (luckily I hid a strip in my bag)
 
Wow, I have to say that I am shocked at the med situation you all have found yourselves in. That is just awful! That is something I have never had to deal with. I did have to use our supply of Imuran the first couple of days Matt was in hospital, on both occasions, but they always asked and ensured that he had received it. His other meds were given like clockwork. How frustrating for you all when you have no doubt done your utmost to ensure they receive meds as per orders at home. :yfrown:

Thinking of you Mary and your darling and amazing little princess...
Princess.gif


Much love, :heart:
Dusty. xxxxxxxx
 
Well the latest is the strange growth that was growing out of the top of her stoma. I brought it to their attention Saturday and the fellow surgeon was like ohh it is poop. I kept insisting it was not poop. Well the woc nurse came to give me the lesson as to how to care for the stoma and she was like. That is not poop. The nurse called the same doctor and he said he knew it wasn't poop (ok whatever) and he wasn't concerned about it it would fall off like a umbilical cord, bc it was strangled. Next thing I know we have like 6 surgeons standing around Rowan during after her bag change. The attending surgeon was concerned and did a little surgery right there to tie it off and cut it off to send it off to pathology to find out exactly what it was. It was hard black and bleeding and did look just like an umbilical cord. I am glad someone took care of it bc I was freaked out completely by it. Now it is time to google it and figure out what exactly it was. It was pretty large. About half the stoma size. :( I hope it was nothing and just some fatty tissue.
 
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