Daughter's ordeal

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amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/2/2009 9:45 PM (GMT -7)   
Hello All!! I found this site this evening and wish I knew about it  a few years ago. My daughter is 13 years old and at age 9 she was diagnosed  Crohn's disease. Started on Remicade and had a  good year and half to 2 years. She has been declining in health since last January. In May this past year she had a colonoscopy (first one since diagnosis) We were admitted into the hospital late May with a Crohn's flare. In August she was admitted with sepsis related to her port. September with a Crohn's Flare, october with a flare and another colonoscopy....gi md thinks maybe she has more of an ulcerative colitis...hmmm( keep in mind she was on increasing Remicade, I took her to UNC, and on prednisone) In late october, she was admitted to the PICU with Severe Sepsis...the port had to come out...also gi consulted the surgeon to take her colon out...
After much thought and consideration (and after the infection from the port cleared) she had a Total Colectomy on 11-11-08. We knew there were going to be problems ahead....but we had no idea....first instead of a 6-8 hour surgery it was almost 12.... no temporary ostomy, he conected her small bowel to rectum. OK we are dealing with the inct bowel, red raw skin, and the pain...(she is a fair redhead) we go home in time for Thanksgiving!! We get readmitted in December for dehydration and pain. He does another look and finds that her anastomisis site has come undone and had to be resutured...darn prednisone... he takes her back before we go home..things look good, restiched a bit but we were home for Christmas!! Unfortunately we were back in the 26th with a bowel obstruction...She was in horrible pain...surgeon took her back in and she has a stricture at her anastomosis site and he put a rectal tube in place!! Well today, her regular surgeon took her back to surgery and wanted to see and feel for himself...well he came out and said he felt the best option was a temporary ostomy and let the anstomosis site rest as much as possible. So here my poor daughter is waking up with an ostomy inplace...
So I guess for those that will read this, what can we expect from here??? I know not everyone is the same, I will take whatever advice I can get on the care and expections of an ileostomy.
I know she is a unique case as she has other issues along the way with her bladder too.
I look foward to hearing from you!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/3/2009 7:44 AM (GMT -7)   
amy476--I welcomed you on your other post...before I read this one...in my opinion, you have done the best thing for your daughter at this time. An ileostomy will be something to get used to, but you can LIVE a normal life-with out pain-with one! Let everything heal...pred can really do a job on our bodies. You can always try again after her body has had time to heal.

Your stoma nurse will be along to help you with products...now mind you that the ones you get in the hospital are not the best. Go on line to www.UOAA.org to get a list of all the manufacturers (there are links there too) where you can request different products to try for free!!! Your daughter's stoma will shrink a little once the swelling goes down so make sure you learn how to measure it properly...that goes a long way to keeping the iritation to a minimum.

You've found the best family of ostomates and j-pouches to get you through this time of transition...there are many teens and mom's of teens who are here to get you through! I am sure they'll be along shortly.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/3/2009 8:26 AM (GMT -7)   
its a big change and hard to get used to, but it wont hinder her life at all! i promise.
I saw you took her to UNC, are you from charlotte? i live in NC also, very close to charlotte, and my husband is a nurse so we know all about all the drs so if you want to ask questions about anything like that i will be happy to help!
the ostomy will be kind of icky at first, and a little difficult to take care of, but that will change in about a week. She will learn her own little tricks to make life easier and how to deal with things
I wish her the best!

amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/3/2009 9:33 AM (GMT -7)   

thank you so much for your reply... I am relaying this info to my daughter and she will soon have her own name on here. I will look asap at the supplies, the supplies here at the hospital suck! thanks for your support already, she rolled her eyes with the walking..lol... but  know it will help.  I will keep you posted..thanks!

Amy


Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 1/3/2009 9:47 AM (GMT -7)   
Hey Amy! Gosh I thought I was young to have an ileostomy lol Make sure she walks! Even if its just up and down the hall once a day thatll help alot. I was out of it for the first 4 days after my surgery..dont remember a thing! The nurse was talking to me and I guess i yelled at her and was like Are you done! I want my drugs!! =/ lol Dont remember that and Im kinda glad lol but we laugh about it all the time now. Ive only had my ileostomy since Nov.19 so im still getting the hang of everything. Just the other night I had to change my wafer because poo leaked down under it. So if she starts itching or feels like its kinda burning make sure to change it because thats usually a sign that somethings not right as Ive learned. Mine stoma shrinks all the time so try to get a good fit around the stoma. My ostomy nurse took a washcloth and after she put my wafer on, she kinda lifted up on the sides of my stoma to make sure she could see a little of my skin. That was to make sure it wasnt too tight or too loose and that helps me a lot when im putting it on. I use non scented baby wipes to clean around my stoma when its time to change the wafer. And every now and then I take my bag off and clean the top of the wafer.
Is your daughter getting homeschooled? Or is she still in school? Sounds like shes been through ALOT. This site REALLY helps me. Im sure itll help you out a lot too =)
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Tried what seemed like every medicine there is..nothing worked
Step1 Ileostomy on Nov.19,2008..waiting on Step2 =)
The past is history, the future is a mystery. Today is a gift, that's why it's called the present.


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/3/2009 11:27 AM (GMT -7)   
wow,thanks for the note. Right now she is in so much pain it is killing... I hate it for her. But she has already started her ostomy care.. she has note seen an ostomy nurse yet.. wont until Monday. She was getting homebound and I guess will once we get out.Luckily she is super smart and taking 9th grade classes already.. I am so glad I found this site..and know once she is up and ready will love it too... I will keep you posted.
Thanks,
Amy

Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 1/3/2009 2:02 PM (GMT -7)   
I've only had my ileostomy for 7 weeks so new myself but my advice would be to try and get her to stay posotive about it and remind her it's only temporary.  I think trying to laugh about any mishaps will get her through so much easier although I know that can be hard.  Remind her she won't be feeling this bad forever she will get better day by day and it sounds like she has a great mum in you to help get her through.

amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/3/2009 8:33 PM (GMT -7)   

yeah, I am big into humor and think it definately helps heal people faster, I am proud of her, she is already helping to clean out the bag.Thinking she is dealing with it better and better as the day goes by. Her pain seems to be a bit better controlled. She will have to get up out of bed tommorow, so should be interesting. Again, I am thrilled I found this site and have had such wonderful ideas brought to my attention and I am so happy to get it.

I will keep you posted on her condition and status.

Thanks again!

Amy


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 1/3/2009 10:01 PM (GMT -7)   
Hi Amy

I was diagnosed with UC at age 5 and had my ileostomy surgery when I was 10 years old. I'm 42 now. My parents' biggest worry was that one day I would turn around and say 'why did you let them do this to me?'. I never have. It was the best decision they ever made for me.

It will be hard for her at first, just as it is for everyone, it's a learning curve, but she will cope, esp since she has the support of a loving family.

It's good she's taking part in caring for her ostomy, that's one of the major factors in coping with an new ostomy. Pretty soon, she'll be able to do it all by herself :) I know my parents haven't seen my stoma since I was about 1 month out of surgery because I wouldn't let them help anymore lol

Good luck.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/4/2009 7:33 AM (GMT -7)   
Hello Amy and welcome to HW.com. We are glad that you found this site too.

If your daughter is helping to take care of her ostomy already, you are on the road to recovery! She will have pain - you know that. But, walking and moving, as bad as it hurts, WILL help in the recovery. ALL of us here on this site will have to agree with that even tho we all thought we were going to die at the time we first started walking after surgery!!!!

One hint - have an extra bed pillow or small firm pillow close by her. If she feels a cough or sneeze coming on, she should grab that pillow and apply pressure to her abdomen. It really, really helps with the pain. I used to lay with mine across my belly when I got home because we had a dog that just loved to be on top of me... even tho she wasn't big, those little paws hurt an incision.

And once she gets her IV out, please be sure that she DRINKS, drinks, drinks. She will need to increase her fluid intake because her output will be increased as well. And not really sugary, carbonated beverages. Sugar can sometimes make matters worse.

So good to have you aboard and best of luck to your daughter. Looking forward to saying hi to her directly!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/4/2009 9:08 AM (GMT -7)   
Savannah had a great nite!! After we fixed to ileostomy from leaking again.... She slept almost 12 hours which meant I slept almost 9! (on hospital couch, but will take what I can get!) We make another big step today, we have to get out of bed! Keep your fingers crossed. She also starts clear liquids today...step closer to taking down the TPN. I will keep you posted on her progress. I can't wait to look up some different ostomy supplies, I am not really fond of the stuff they use here...
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/4/2009 9:50 PM (GMT -7)   

Savannah had a good day today. We got up to a chair for about 30 minutes. She had lots of company which helps too. I know she misses her friends at school. The biggest problem we are having is the leaking from the ostomy site!! We have not seen the ostomy nurse yet, hopefully tomorrow, but this is getting her a bit frustrated. (me too for that matter!) I am sure I will feel better once I talk to her and can order products that will fit her better. She has such sensitive skin and I can't stand that is getting so raw this quick. Any extra advice would be great!

Thanks.

Amy


Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/5/2009 5:19 AM (GMT -7)   
I know there is a brand that is better for sensitive skin...I cannot remember the name right now...OHIO43 might be the one who uses it...it isn't Convatec/Hollister/Coloplast if that helps:( I'll try to find it and post it for you.

amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/5/2009 7:45 AM (GMT -7)   
thanks, I appreciate you thinking about it... if your remember let me know...any anyone else out there with ideas... can we contact idividuals on here? Not sure how to do that...
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/5/2009 9:10 AM (GMT -7)   
amy--I just looked through a bunch of posts and I cannot find it yet...but I did notice that several of the manufacturers DO have a children's line and it is supposed to be formulated for their skin.  Hollister has a Pouchkins line and I am sure the others have something too.  If I find the other name I'll post it or put a link on to it.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/5/2009 10:07 AM (GMT -7)   
Amy,
Welcome to Healing Well. Savannah sure has been through a lot. Hopefully, things will only get better from here.

I recommend asking the nurse for some adhesive remover wipes to use when you remove the wafer, and Calmoseptine Ointment to put on the skin around the stoma. A little goes a long way with the Ointment and the wafer will not stick to it, so just put a thin layer on the skin closest to the stoma. Those two products have done wonders for me.

You can purchase ostomy supplies at any Medical Supply Store in town or online. I order from Sterling Medical, and they ship out very quickly. I usually receive my order within 2-3 days.

Please keep us posted on Savannah's progress and continue to ask us any questions you may have.

Cecilia

P.S. - A little bit of mouthwash in the pouch makes a great deodorizer! :-)
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 1/5/2009 11:00 AM (GMT -7)   
Hey amy, Im older than your daughter ..17..but if you or her has AIM i can give you my number and you can call to talk to me and my mom if thats any help :-)
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Tried what seemed like every medicine there is..nothing worked
Step1 Ileostomy on Nov.19,2008..waiting on Step2 =)
The past is history, the future is a mystery. Today is a gift, that's why it's called the present.


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/6/2009 1:50 AM (GMT -7)   
Hi Everyone,
What a day!! yeah   Savannah is up walking!! It was so good to see her get going!!
They decreased her continious morphine today, but seems to be doing ok in the pain department, more nausea today, but think its related to all the movement. Had a little scare, thought stool was coming out of incision site, but it was the way colostomy was placed. The stoma nurse came today, she will be back tomorrow, it is nice to have an appliance on that lasts more than 24 hours!
We will talk more about products in the am. It was a typical Monday for her as well. Lots of new people to see.
Anyway, just wanted to let you know. And Bella, we will be in touch. Both Savannah and I have AIM, its on the desk top at home, so I will let you know when we are there.( Hopefully end of the week!!)
Goodnite!
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/6/2009 2:42 AM (GMT -7)   

Amy,

So good to hear good news from you.  Let us know what the ostomy nurse recommends for you in the morning?  Please let your daughter know that the pain from walking and moving is really necessary to get home quickly.  And once home, she will need to continue it to recover and get her stamina back.  Again, be sure that she is well hydrated once the IV is removed.  It is not unusual to become dehydrated initially (and that can cause flu like symptoms) if you don't really push the fluids.  Increasing sodium like salted pretzels and saltines, that kind of food, will help her retain some of the fluids too.  Just thought of that and thought I'd pass it on to you.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/6/2009 8:15 PM (GMT -7)   
Hi All,
Just thought I would give an update on Savannah. Wish I had good news, but she has not felt well all day. She walked and tried to drink but everything came back up. They are going to do an xray  and see if she has a blockage somewhere...
Good News is that her ostomy bag has stayed on for over 24 hours!! YEAH!! LOL... the ostomy nurse came yesterday and put a new bag on...she was suppose to come back today...but didnt.. kind of frustrating.. we are an almost 600 bed hospital including trauma center and only 2 wound care/ostomy nurses...one still in training!! Hopefully she will come tomorrow...
Will keep you all posted, her spirits are ok, pain is worse, due to the vomiting... hurts me and I dont have a six inch incision!
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 1/6/2009 9:09 PM (GMT -7)   
I know how painful it is to watch your child suffer. I will keep you and Savannah in my thoughts and prayers.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/7/2009 12:48 AM (GMT -7)   

Amy,

Did she have an NG tube after surgery?  If so, when did they pull it?  You know about adhesions, right?  From what I know, they usually form very quickly right after the surgery and that is not unusual, which can cause strictures or blockages.  And sometimes, they can resolve themselves.  Sometimes not.  Hang in there.  Please tell Savannah to keep her chin up.  These are bumps in the road and she will be on the mend soon.  She is so lucky to have you as a mom, and a nurse on top of that.

 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/7/2009 7:48 AM (GMT -7)   
Hi Peggy,
No she didnt have an NG post surgery which surpised me. And you are right, being a Mom AND a Nurse can really stink sometimes, as I have already thought of the complications you have. She has been up walking again this morning. They are very concerned about her low ileostomy out put ( only 100cc in almost 12 hours).
The doctors are rounding now.. I will let you know what they say.
Take care,
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


dangdonkey
Regular Member


Date Joined Jan 2009
Total Posts : 22
   Posted 1/7/2009 7:50 AM (GMT -7)   
Amy you are doing everything you can for your daughter and thats all anyone can ask.
It's painful, but love trumps all, and you daughter will be grateful for it.
Time is the key, recovery doesn't happen overnight. Hang in there and do what you can.

Could the vomiting be due to anaesthesia or pain killers?

Brian

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/7/2009 8:37 AM (GMT -7)   

Amy,

I'm hoping she still has her IV to help push fluids.  I too am wondering about the pain meds making her nauseous.  I'm anxious to hear the docs opinion.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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