surgery on Monday

New Topic Post Reply Printable Version
41 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 1/31/2011 8:01 PM (GMT -6)   
 
 
  Ok sorry if I am repeating myself to some of you, have been posting on the colitis site.  My daughter is 15.  She has had colitis for 15 months now and never really been in remission.  Just got out of the hospital on Friday.  Remicade just doesn't seem to be working.  She is tired of being sick all the time.  She decided she wants to have the surgery.   It is scheduled for Monday, February 7th.  Right now part of me wants her to have it the other part doesn't.  I guess what I am do you have any regrets after surgery.   I just don't want her to regret doing this. 
Thank you any help you may give me.

gmark
Regular Member


Date Joined Jan 2011
Total Posts : 55
   Posted 1/31/2011 8:49 PM (GMT -6)   
Our hearts and prayers go out to your daughter for a speed recovery. Facing surgery was difficult, but I remember after getting home from the hospital so unbelievably happy to be free from pain, and no more tons of medicine to take every day. I felt better than I had in years, was finally gaining weight. My only regrets was getting a j-pouch, which hasn't worked out for me and now I face more surgery to remove it. I got along great with my ileostomy.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 1/31/2011 10:00 PM (GMT -6)   
     My heart goes out to your daughter.  I feel so bad for all these young people suffering with the horrible disease of UC.   I was 52 yrs old when diagnosed, suffered for twelve years, ran the gamut of meds and finally got fed up.  I had a total colectomy with end ileo.  I cannot speak for those with the j-pouch.  My surgeon would not perform one on me, he said it was too risky because of my age, 63, and my extensive use of prednisone.  I had no problem with the idea of having a bag.  All I could think of was getting my life back.  I couldn't afford to procrastinate any longer.  I have no regrets. 
     It's a hard decision and I can just imagine the pain you also are suffering.  The only advice I can offer is to find the BEST colorectal surgeon in your area.  I chose to go to a Philadelphia hospital.  I live in south Jersey and wouldn't trust a colorectal surgeon OR a hospital here.
     I had some hurdles to climb over, but, having the surgery was the best decision I made. 
     Best of luck to your daughter and God bless.  I will keep her in my prayers.

David Martin
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 1/31/2011 10:17 PM (GMT -6)   
Best of luck to her. The surgeries are tough but it's for a better way of living without pain and disease. I'm 16 had my first surgery about a year ago "about" and my only regret was giving up my ostomy. But I think it varies by people And their opinions. The j-pouch takes alot of time
To I guess fully expand and work but it just takes time.
I'm still learning how go use the bathroom and hold it In and stuff. I'm concerding having a surgery to go back to having an ostomy "after I grad next year."

Is it a 2 step or 3 step surgery?

-David Martin
Adam, 16. Birthday Sept. 30.

Diagnosed with Ulcerative Colitis between 05-06. I have UC but its under control. I had surgery may 25 to remove my colon. 2nd surgery Aug. 31 surgery to reconnect to J-pouch. 3rd is dued to be dec. 7

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 1/31/2011 10:59 PM (GMT -6)   
Worried mom...you are both on our minds. I am glad that the decision has been made and you can now move forward.

Are they planning to build the pouch at the same time or will that be the next surgery? How is she doing at home?
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 1/31/2011 11:58 PM (GMT -6)   
davidm and collicat.

Yes it is going to be a two step surgery. She seems to be doing great at home. Other then not feeling very well.
Of course I would never let her know that maybe I have some doubts about the surgery. But what are the other options do we have?

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/1/2011 6:47 AM (GMT -6)   
Hi!
I woke up from my surgery last year with a smile and through my drugs I said to my mom, "I don't have diarrhea anymore!!!"

I have not regretted it ONCE since I had my surgery. It is so worth it. It has created a future for me, where I didn't have one before.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/1/2011 8:40 AM (GMT -6)   
80schick

Thank you so much. Every encouraging word helps. It is hard right now not knowing if I am doing the right thing for her or not. I am sure it is just a mom wanting the best for her daughter. Can I ask is why you have a permanent ileostomy and not the j-pouch? She wants the surgery, it is just hard putting something like this on a 15 year old to make a life changing decision. I don't want her months down the road regretting and being mad at me for letting her do this. I know that a lot of people say they never regret it. My daughter is pretty smart, I know she has looked on the internet for guidance. Every once in awhile she'll will tell me stories about what someone has said. Thank you so much for taking the time and writing to me.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/1/2011 9:04 AM (GMT -6)   
I have never regretted jpouch surgery, my life is so much better with a jpouch than it was with UC. Sure, the first year will be filled with ups and downs but it's all about looking at the improvement as you inch along. As the mom I don't think you know how we struggle to cope every day with UC, my mom was not supportive of my surgery decision either, and I was 42 when I had it!!

Sue

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/1/2011 4:35 PM (GMT -6)   
suebear,

I didn't mean to make it sound like I was not supportive of her decision. We talked together about this while in the hospital. We could try humira, but we both decided not to try it and it not work and she will miss another summer of not doing anything. I just didn't want to put this all on a 15 year old to make a decision like this. She has no idea what I am writing on here. These are my own personal thoughts that I would never share with her. No you are wrong I know how she struggles with this. I might not know the pain she feels. But I know that this disease took my daughter away from me for the last 15months. I can't wait to see the sparkle come back in her eyes. Didn't mean to sound so harsh, but I just wanted to know for myself if this is the right decision. I am just afraid for her. I know after being up all night while she goes to the bathroom and her getting sick two to three times a week, I know deep down 'we have made the right decision.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/1/2011 5:39 PM (GMT -6)   
Worried mom....these feelings are completely natural. Of course you can not help but worry when there is no answer that is for sure 100% the right one. Don't beat yourself up over this. The only thing that will make you feel better is when you see your daughter regain her health and move on with her life.... which is exactly what is going to happen.
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

mvm
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/2/2011 2:03 PM (GMT -6)   
I am a lurker who just registered... 36 year old female with UC for 12 years, in remission until 1 year ago and flaring since then, despite all the meds. I am going for surgery on Monday too! I wish your daughter luck!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/2/2011 9:51 PM (GMT -6)   
i don't regret it in the slightest! just that i didn't do it when i first got sick and that i hadn't wasted 8 years of life. i may have told you, but we had a scare with my son when he was younger, and i told my husband flat out, if this is UC, we are not trying meds, we are not trying diets, colon is coming out. He's not missing his life like i did mine. And my husband was supportive. Shaz hasn't been on yet, but she got hers when she was 10, and she is very happy with her parent's decision.
I didn't choose a jpouch, i chose a perm ileo. And i'm totally happy and so glad i did it.
And don't think you are giving up or letting her down, or that she is settling for surgery, it's not that, its the ultimate win over this disease!
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/3/2011 12:13 AM (GMT -6)   
summerstorm

Yes I know this is the right thing to do. Yes we tried all the meds, her choice also. But I have seen her over the past couple of days sick and puking and running to the bathroom, I can't wait till Monday so all this will be over. If she makes it till Monday. She is looking forward to the pain meds lol. Thank you everyone for the encouraging words. Will let you know how things are going.

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 2/3/2011 8:31 PM (GMT -6)   
worried mom
You said that your daughter has no idea that you are writing on this forum. Why are you hiding your thoughts from her? Get her on this forum. Let her hear what we have to say first hand. Maybe she will gain some confidence in her decision.

I had colectomy/ileostomy November 2007. Have had problems but I am not sorry with my decision.

Dan

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/4/2011 12:40 AM (GMT -6)   
polishdan

Mybe I am explaining things wrong. It might just be me scared to put my daughter through a surgery like this at such a young age. She has been doing her research on her own. She has been on here before, She is happy about her decision. Acually she can't wait till Monday. I support her all the way, maybe I am the one who needed some confidence in her decision. Talking with everyone on here has helped me alot I know now this is the right decision for her . Thank you everyone

Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 2/4/2011 5:43 AM (GMT -6)   
Hi mom, I had my surgery when I was 10 years old. I've never ever regretted it. It gave me my life back.

My parents' biggest fear 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.

My ileostomy turned 35 years old last month and there is not enough money in this world that you could pay me to go back to my UC days.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/4/2011 10:05 AM (GMT -6)   
shaz032

Thank you so much. Maybe that is what I needed to hear. It is just hard my friends are telling me not to do this. I think that is what is making this so hard. I know this is the best thing for her. She hasn't felt good since we have been home from the hospital. I am just getting a little nervous as the day is getting closer. Thanks again for everything.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/4/2011 11:57 AM (GMT -6)   
your friends mean well im sure, but they don't have to watch their daughter suffer day after day, and they don't know what she is facing and what kind of life she will have if she continues to "live" with the disease. So don't let them make you feel bad about your choice!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/4/2011 3:30 PM (GMT -6)   
summerstorm

Thank you, I know deep down this is the best for her. You are right they don't understand how she suffers. They think she just goes to the bathroom a lot. Their is a lot more to it then they realize. You don't realize how much everyone comments are helping.

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 2/4/2011 3:59 PM (GMT -6)   

 

Good luck to your daughter, and to you, worried LOVING mom 1.   I have dealt with my Crohn's Colitis [very much like UC symptom-wise] for 5 years and am electing to have a permanent ileostomy this summer.   Nobody knows what it is like until they have personally been through it or watched a loved one go through it.
 
Your friends don't have a clue.  Your daughter is your only concern and I think you are doing the right thing.  HUGS to you and your daughter.  Keep us posted on how the surgery went.  We care.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/4/2011 6:08 PM (GMT -6)   
worried mom,
I'm sorry I haven't replied sooner...things have been BUSY! (That's good news; with my Crohn's I had a LOT of downtime because I wasn't well enough to be busy)

I did not want a j-pouch because I have crohn's, and it could come back in my pouch. Not to mention that my rectum was spasming awfully, and also, I had lived ten straight years of diarrhea, and I was DONE. I feared that I'd still have diarrhea even with the J-pouch. I just wanted one surgery and I wanted it all to be over.

I agree with the above posters...your friends may mean well but seriously, they don't live the life your daughter does. If I was healthy I'd think this sounded sucky too, but honestly, this is the BEST thing I could have done.

Keep us posted on how your daughter is doing. I agree with whoever said you should let her read these...being educated about ostomies is incredibly powerful for someone with one, plus she won't feel alone.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/4/2011 6:33 PM (GMT -6)   
worried mom 1 ~ welcome to the ostomy forum!

It's good that you are getting your concerns out...you have a very grown up daughter who realizes she wants to live her life! Quality of life is important when you are that age...well, any age! Your friends don't truly understand the hardships of an IBD and how it affects the person AND all those around them.

I have Crohn's so I didn't have a choice. I just wish I had had my proctocolectomy years earlier!

Like it has been mentioned, the first year has many ups and down, but don't let that discourage you. There is also something to be said for youth yeah

Stick around we are here to help...please keep us posted on the surgery.

(((HUGS)))
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 2/5/2011 11:22 AM (GMT -6)   
Hi worried mom,
I am an 18 year old girl and I just had my colon removed on January 19th. I can relate to your daughter's situation very much, and I feel certain that the two of you are doing the right thing.
She may have regrets at first, but I don't think that should discourage you. At her and my age, having the ileostomy is difficult primarily due to body image issues. I am working through feelings of revulsion towards it, but the good news is that that part is temporary. I can't speak for the j-pouch yet as I won't be getting mine until July (I'm having a three step surgery) but what I can tell you is this: two days after my surgery, I already had less pain than I had during an average UC flare. I was off of morphine after two days, and off of Vicodin after six. Now all I take is Tylenol. People as young as your daughter heal phenomenally. :)
Your daughter will be glad to get this behind her. I chose to suffer with UC for my entire high school career and I regret all the time I lost being sick. It will be good for her to go to college not having to worry about UC flare-ups. I decided to get my surgery after attempting to start college and having a miserably sick first term. She needs this in order to get on with her life.
I bet her only regret will be not having done it sooner!
If she wants to talk to a girl close to her age, I could give you my email address to pass onto her. It helps having people who have been through the same thing as a support. Obviously I'm no expert, only being just over two weeks out of surgery myself, but I'd be more than willing to be a shoulder to lean on.
Best,
Rachel
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6MP.
Flared again in 2009 as 6MP lost effectiveness, went on TPN and had several blood transfusions. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Starting 3 step j-pouch at CC on 1/19/11.

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 2/5/2011 11:59 AM (GMT -6)   
PS: my mom just told me she'd be willing to give you her email address as well... the moms need support through these things too!
New Topic Post Reply Printable Version
41 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, July 20, 2018 2:10 AM (GMT -6)
There are a total of 2,983,504 posts in 327,133 threads.
View Active Threads


Who's Online
This forum has 161920 registered members. Please welcome our newest member, fdsgfdgsdfdsfsdf01.
260 Guest(s), 2 Registered Member(s) are currently online.  Details
Bloodyhell, lll1681681880