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13 y/o girl total colectomy/iliostomy TODAY.. any advice ??

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Posted 11/21/2009 5:58 AM (GMT 0)
I do pretty good taking care of her and i have had 2 c-ssections so i have a slight idea what surgery is like but if theres any tips to get her through these first few days and beyond it would be much appriciated.  She had surgery this AM so im way too wiped out to search through the forum looking for tips. 

first thing she did in the recovery room was try to get up and insisted she needed to go to the bathroom and begged me to let her go sit on a toilet which she couldnt and she has a cathater so she really had no use..

my thought was maybe she associates rectal pain with bowel movements and thought she had to go?? anyone had that? she still has her anus and rectum.. just no colon.

thanks in advance

Posted 11/21/2009 12:40 PM (GMT 0)
Hi, I hope all goes well for your daughter! But to find the answers you need you will probably have to go to the 'ostomies' forum. It's on this website, just go the page where the diseases/conditions are listed and click there.
Posted 11/21/2009 8:23 PM (GMT 0)
Date Joined Nov 2009
Total Posts : 6
Posted Today 2:20 PM (GMT -7)
Hi Nelly's Mum
My daughter age 12 had the same surgery 4 months ago, and had an Ileoanal anastomosis almost 3 weeks ago. It is great that your daughter wants to get up and about. This will help speed her recovery in a big way. My daughter found it hard to get up after the first surgery, and developed some fluid in her lungs. As for passing movements from behind, my daughter was passing mucus as the mucosa in her rectum had not been stripped until the second surgery, and I was told this is normal. We were giving her salofalk enema's for a month, as the mucus was bloodstained. You seem to be doing really well supporting her. Basically at this point she should get up for short frequent walks around her room, sitting in the chair, without tiring herself too much, and being administered pain killers if needed. When she starts solid foods make sure that your GI's and surgeon are in agreement as to what she can eat. Mine weren't and daughter was readmitted a week after discharge,to be given parenteral feeding.
The ileostomy was not really an issue for us. We did well with it, and I often used to joke that the stoma looked like a rosebud (my daughter thought I was nuts! at least she'd laugh).
A lot depends on your reaction as her mother. Hang in there.. it does get better. I also have had 2 c-sections and it helped my daughter to know I had an idea about her pain. Unfortunately you must go through this with her and be there with her, together through everything, and never hesitate to ask your doctors even if you risk sounding repetitve. I hope I helped a little.
Best wishes and prayers to you both
Posted 11/22/2009 2:11 AM (GMT 0)
Its normal to feel like you have to use the bathroom some after surgery, i had everything removed 2 and half years ago, and i still feel like i have to go every once in awhile. It happened alot at first. best thing to do is just sit on the toilet until it goes away. Also i find that if i let myself get where i have to pee really bad it happens.
She may have really bad gas right at first, get her some gas-x, it will help a ton,but she needs to take itbefore she gets gas, say 2 in the am and 2 in the afternoon.
Once you get home, and have to start chanign the bag and stuff, there are lots of different choices, thats kind of a trial and error thing.
Important things are, use only lotion, scent free soaps. I use Dial, some people use Ivory, i had trouble with Ivory though.
When you apply the wafer, try usign the hair dryer on it for a few seconds to heat it up, after putting it on. I cant think of anythign else to tell you right now, since you havent relaly picked a system to use yet.
good luck!
Posted 11/22/2009 6:59 AM (GMT 0)
well my daughter was wasting badly so she's been on the iv nutrition and got 2 bags of blood and an infusion os protiens just to make her strong enough for surgery.. she seems to be doing better with the pain today. they may let her have some fluids orally tomorrow. I have a feeling i may have a hard time with the GI/surgery team combo as i heard surgery telling the nurse they didnt need to consult GI for anything because she was under their care for now but i'll make sure i consult them one way or another..

thanks for your replies u.c. & summer :)
Posted 11/22/2009 12:09 PM (GMT 0)
I know what you mean..prior to surgery my daughter lost 11 kilos (and she was thin anyway!) in 5 months, and in the 8 weeks prior to surgery had 5 weeks straight of parenteral nutrition,8 blood transfusions, and 3 plasma. At the time of the first sugery she was very weak, and hence was not able to bounce back quicky aftewards. Second surgery was better, but still trying ro find our feet. Hang n there. Us mothers are the best our girls have. Good luck with the med team.
Thinking of you ad sending best wishes
Posted 11/22/2009 12:20 PM (GMT 0)
P.S..and know that you re wonderful, and yes please keep at the doctors! Tell your daughter she is not alone. It helped my daughter to meet another kid her age with the same problem. As for the surgeons... one doctor made a joke that goes like this: What is the difference between God and a surgeon? A surgeon thinks he is God, but God knows He is not a surgeon! Keep us posted of your daughter's progress. I'll let you know how we progress with our anastomosis too. I post at weird times because I am living in Europe (yeah, a challenge after living in an English speaking country!), so we have a time difference. Take care
Posted 11/22/2009 12:35 PM (GMT 0)
sorry I am answering in bits and peices, but I'm so tired, the brain just isn't working today. If your surgeons are like mine, they will tell you that from a surgical perspective she can eat anything, and knocked the GI's for taking a more conservative approach. This confused us, but in the long run the GI's were right...after all they specialize on the GI tract! With the ostomy, we had a few leaks, but it is basically trial and error. We got dermatitis too, but that cleared with regular changing, and use of the protective barrier cream. Our company was Coloplast, and their stoma nurses were excellent, always willing to help.
Posted 11/22/2009 4:50 PM (GMT 0)
actually, i havent spoken to my GI once since my surgery. Since my problems were all in my colon, and its gone now, i have no reason to. Alot of people dont see their GI's anymore. Thats pretty normal.
Posted 11/25/2009 6:59 AM (GMT 0)
well heres a brief history of my daughters illness. She's had the rectal bleeding, abdominal pain and frequent/urgent bowel movements since dec. 06 and that had never stopped completely. She was on pentasa, prednisone for 9 weeks, iron for the anemia from the constant blood loss, pentasa and cortifoam enemas then imuran for about 18 months. In july she went up north to my grandmothers for a week and i was told she was vomiting and in the bathroom constantly. When she came home (early) i took one look at her and took her to a clinic inside a small hospital and they transfered her to the bigger hospital where she spent the night then they transfered her to the major childrens hospital about an hour away. She was in hospital on all kinds of meds for the month of august. She spent probably 18 hours a day in the bathroom there screaming in pain, pooping out mostly blood ( sometimes like 600ml of liquid blood in a sitting)and actually saying she wished someone would just kill her.. it broke my heart. They waited til her hemoglobin was 66 to give her blood and only brought it up to about 89. They said the last thing they could try is remicade and advised us of the risks involved and my daughter cried at the mention of surgery so we tried that. Everyone gave us high hopes that it would work and even reading online so many people called it a miracle drug. After one infusion they said its just a waiting game now and she can wait at home to see if it worked so they discharged her. After 3 infusions it did stop the bleeding so i guess it did what it was supposed to but it didnt make her healthy like it seemed to for most others. She spent sept./oct. sitting around zombie like and wasting away more so finally at her last office visit they admitted her again and by this time my daughter was all for surgery. Her weight loss went like this.. july 6th- 69 kilos, july 27 (admitted to hosp.) 61 kilos, a month later 55 kilos (left hosp.) then dropped to 51 kilos in about 4 days last month and was 49 kilos when admitted on nov. 6. Her hemoglobin was 108 on friday as she was admitted and dropped to 79 by sunday so they gave her blood.
My girl says she doesnt want a pouch if its even an option as they havent decided what IBD she has. She can change her mind any time in her life though, so thats good. She had a very rough day today. They took away her morphine pump and have been urging her to walk around the ward. Also about the diet thing the surgeons said to continue the low residue diet that the GI team had her on pre-op.
I'll check in tomorrow sometime. It's 2 am here and im sleepy.


Post Edited (Nellys_Mum) : 11/25/2009 12:05:56 AM (GMT-7)

Posted 11/25/2009 1:43 PM (GMT 0)
Hi again.Wow! My heart goes out to you both. This ordeal is draining both emotionally and physically..your daughter has had a very long haul! My daughter has a straight ileoanal anastomosis, so no j pouch. Like your daughter, our doctors were confused as to wether she has Crohn's or UC. The biopsies seem more compatible for UC. Walking is painful but she must do it to speed her recovery. The recovery after the second stage op is much quicker. Continuing the low residue diet is a good idea, as is trying to keep to eating at regular times. We are still trying to reduce our bowel movements (15 small ones) and butt burn..you live and learn. I hope you have support to help you through this, because you need TLC too.

Hugs to you both turn yeah

Posted 11/25/2009 1:47 PM (GMT 0)
     This just breaks my heart reading about how these young people suffer so.  I will keep your children in my prayers and hope they heal promptly and can lead normal healthy lives.
Posted 11/25/2009 5:20 PM (GMT 0)
Thankyou Christine for your prayers. I hope you acheive a long standing remission soon. On Friday my daughter will be scoped to check for any post surgery strictures.

Nelly's mum, I hope you are able to get some well earned rest. Also, are you aware of any support groups in your area? A reminder re the anal discharge, don't be alarmed if you see bloody mucus. We did and were told it was normal, and the problem was rectified with a month of enema's.
Posted 11/25/2009 8:17 PM (GMT 0)
Its a shame someone so young has a disease like this, it is just wrong.
Posted 11/26/2009 5:25 AM (GMT 0)
Thanks Christine and i agree completely zippy.

U.C. mom- I never really thought attaching the small intestine directly was an option. I did hear that with a pouch and by the sounds of it with your daughters procedure that you still have to go to the bathroom many times a day. At this point the last thing my daughter wants to think about is using her bum again and having to make alot of bathroom trips. She is feeling much better today and we were away from the ward for 1 1/2 hours today walking with rest periods and they have reduced her pain meds as well. The docs are saying how impressed they are with her recovery and her attitude towards everything. They are talking about sending her home Friday. The ostomy nurse said shanelle would be a good example for other kids going through this in the future and said if she ever wanted to volunteer to talk to some kids in the future that would be great.
Posted 11/26/2009 5:43 PM (GMT 0)
Go Shanelle!!!! Yay! smilewinkgrin    Nelly's mum hi.If she can talk and help other kids, it would be the most wonderful thing for her and others going through the same thing. She is right not wanting to think of her butt... my daughter was getting so used to the ostomy that she wouldn't have minded postponing the second stage another six months. Today we had a good day...the bm's were reduced and more solid. Oh well.... baby steps..

Hugs to you both

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