5 days until surgery

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MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 9/25/2011 4:55 PM (GMT -6)   
I can't believe that this time next week my daughter will be without a colon.  I am starting to feel very sad about the surgery and everything she is going to have to endure afterwards. I find myself avoiding people because I don't want to talk about the surgery - I usually start crying when I talk about it.  The few people I have told are absolutely SHOCKED that she will have to wear a bag.  I know they can't possibly understand what we are going through, but their reactions make me feel so sad that I just can't talk about it anymore.  I hate the look of pity they have in their eyes.
 
Just wanted to vent turn
13 yr old daughter diagnosed UC 12/08

Just spent 8 days in Hospital due to flare & back on Pred :(
Headed for surgery 9/30/11

Remicade: 6/16/11, 7/1/11 and 7/25/11
previously on 6MP, Asacol, Lialda, Rowasa, Cortocoid
Pancreatitis 2/10 after being on Rowasa & Lialda
C-Diff 6/10

Husband dg'd Crohn's 2/09 at age 46 -
Remicade every 8 wks

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 9/25/2011 5:08 PM (GMT -6)   
I wonder if the hospital has some kind of parents' group -- I'm sure a lot of parents dealing w/their child's medical issues have similar feelings even if the medical issues aren't quite the same. I think it's so hard for people to go beyond imagining what it would be like for their kid to have a bag or imagining that they had a bag at her age etc , that they stop being there for you and get lost in their own thing. Plus they just have no idea that a bag can be a good thing.

I don't blame you at all for avoiding people who react this way. This is so hard for you and you need to be there for your daughter. You need people who can support you, not pity you. I hope you can find them..... but you have us here. Vent away.

The bag is sooooo much better than the disease..... when you see her healthy and being a kid again, you're going to be fine.

And it is very sad..... but also hopeful.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

Post Edited (blueglass) : 9/25/2011 8:38:19 PM (GMT-6)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/25/2011 8:41 PM (GMT -6)   
I'm so sorry that some people aren't more understanding and supportive. sad Sometimes I think about the disease that was in my colon as if it were cancer, because it was robbing me of my health, and once it was gone, I got my life back. People seem to understand the importance of having surgery when someone has cancer, but not so much when they have a disease that they've never heard of, like Crohn's or Ulcerative Colitis.

Please don't let them get you down. You and your husband are doing the right thing for your daughter, and thank God, she's going to be disease-free soon and will get to live a long, healthy, and happy life. :-)

(((hugs)))
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/26/2011 7:18 AM (GMT -6)   
So sorry she is going through this at such a young age but you will be amazed at how much better she will be in a short time. Sometimes I think kids cope so much better than we as adults do, I think its a great idea if you can find a support group and chat to parents also dealing with this for their children. Thinking of you and hope your daughter has a speedy recovery. She will be just fine. Take care
Doreen

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4549
   Posted 9/26/2011 10:00 AM (GMT -6)   
So many people have no idea what UC even is. That's why you are getting the shocked reactions. I had the same thing happen to me when I tried to explain why I needed surgery to people. They can't get their head around it. You will feel better after she is finally through the surgery and can start to heal. I remember the dread I felt just sitting around waiting. She will never have to deal with UC ever again. The bag is only temporary assuming she is having J pouch surgery. She will bounce back quick...I was 42 when I had my surgeries and I was up and about running my kids around in only a few weeks. I can't believe how much better I felt getting that icky, diseased colon out of my body...even thru the post op discomfort, I felt better! She will do great....try to to be sad...be happy that she won't be sick anymore and can be a normal teen in no time at all. :)
Marianne

DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery!

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 9/26/2011 10:36 AM (GMT -6)   
I remember feeling the same way. I was at my yoga class a week or two before Rachel's first surgery and I was trying to find some calm in me somewhere. I remember doing corpse pose at the end, which is usually such total peace and rest. Instead, for me, it was the total release of all that was built up inside me and I ended up sobbing with tears pouring down my face. I was embarrassed by it because everyone in the yoga class heard me, including Rachel who was beside me. It's a tough one to face but, like everyone else here has said, it will be the end of the intestinal part of UC and a fresh beginning. She will no longer have the awful and unpredictable flares. She will no longer have to take the toxic drugs. She will have her life back again - and you, too. Be strong for her but lean here all you need to. This will all be behind you soon - this is the first step into her healthy future.

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 9/26/2011 5:01 PM (GMT -6)   
I wish you all the best, all of the understanding and all the emotional stability that your enduring. Since your emotional to others perception, avoiding the subject is the right thing to do. Yes, use support groups, this one is the only one I used and it helped tremendously just to read, comment, and for information as to whats up ahead. Your not alone, lots of prayers-Christine

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 9/27/2011 9:06 AM (GMT -6)   
That is what is so important about having this place to come to where there is full understanding and comfort.

I also wish there was a better understanding and perception out there. So many people do think it is such a terrible end result and do not realize how it gives life back to the person who has been suffering for so long.

We are lucky in that my husband was 64 at the time of the surgery and suffered for so long that family and friends were more supportive wanting to see him be able to stop suffering and get his life back. But that is the difference when one is so much older I find in the support/understanding aspect.

Once your daughter has the surgery and has healed and is getting back on with her life and things are back to normal it will become less and less an issue. People will be so happy to see her not suffering and adjusting and after awhile it will be basically forgotten about.

I hope her surgery goes really well and recuperation is swift. The younger ones seem to bounce back quite fast! She and you will be so happy when she is finally out of all that pain and off all the meds.

Prayers and Hugs to you both.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 9/28/2011 11:55 AM (GMT -6)   
my mom cried the first time we talked to the sugeron i was smiling with excitment now i am nervous... but have been doing things to keep me optimistic i do yoga (personally after this year i am going to practice to be a yoga teacher) talking helps me.. i dont know if your religios but if so tell the people at the church to pray for you. is your daughter real nervous???? there is a lot of support groups for you also . I know that the hospital i am going to they have A WHOLE ENTIRE GROUP just for parents it called the ronald mcdonald ___________ ( something) when i had been admitted into the hospital unexpectidly my mom would go there they provide comfort theres parents there that are going through the same stress as you maybe less maybe worse .. they have food (GOOD FOOD) so you dont have to pay at the hospital cafetira and a lot of more things . i am having sugery in 2 weeks i also am nervous...... try and seek out other mothers going through the same thing ... im sure my mom would talk to you ..,. you booth could use comfort :) ....just email me if you have any questions or just need to talk for comfort.
myemail- jackiejackson1800@yahoo.com... :) hope i can help

MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 9/29/2011 2:22 AM (GMT -6)   
Jackie, that sounds like a wonderful support group...and I like the GOOD food part! :) We do go to a support group for Crohn's/Colitis but have not looked into one for ostomies/Jpouch. I can't believe surgery is in less than 48 hours!
13 yr old daughter diagnosed UC 12/08

Just spent 8 days in Hospital due to flare & back on Pred :(
Headed for surgery 9/30/11

Remicade: 6/16/11, 7/1/11 and 7/25/11
previously on 6MP, Asacol, Lialda, Rowasa, Cortocoid
Pancreatitis 2/10 after being on Rowasa & Lialda
C-Diff 6/10

Husband dg'd Crohn's 2/09 at age 46 -
Remicade every 8 wks

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 9/29/2011 9:17 PM (GMT -6)   
i will keep her and you in my prayers :)

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 9/29/2011 9:53 PM (GMT -6)   
sending prayers and good thoughts to you both!
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