Reality of surgery

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Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 4/8/2008 11:27 AM (GMT -6)   
Ok, it's not like we didn't see this coming, but no doctor has ever talked about surgery and suddenly it's as if it's a foregone conclusion and that's that.  Just sort of freaked me out. Plus the nurse was talking about a grieving process and the amazingly difficult recovery period and how there's a special nurse to get you through it.  If that's how it gets presented to my son he's going to run the other direction.  I know the recovery is difficult and it won't be easy, but I have to think when it's all over, his life will be more normal again.  Am I looking at this through rose colored glasses??
 
Mother of 18 year old son
Remicade
6MP 100mg


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/8/2008 1:23 PM (GMT -6)   
I suggest reading Philip VanHooser's "It Takes More Than Guts". Great story about a guy who's gone through it.

I agree than many doctors don't do a good enough job of preparing patients what all of the options are. Some mention surgery too early - some too late. As soon as a patient is comfortable with their diagnosis - not super new, but understands it a bit - surgery should be mentioned. If only for patients to prepare themselves.

His life will be a NEW normal. After each and every choice we make or choice that is made for us, a new normal starts. It's just a matter of getting on with it. You son's life will be better for the fact that he's not in agony and can actually live his life away from the toilet.

With your support, he'll do great!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/8/2008 7:59 PM (GMT -6)   
i dont think you are lookign at it through rose colored glasses, it sounds like you are looking at it just right. I had this surgery almost a year ago, and the recovery period does suck, lol. I takes a while, cause it is a major surgery and it is a major lifestyle change. I am not sure about the grieving process, some people though deal with losing their colon like losing a limb. And I get these weird urges to go to the bathroom sometimes, at first it freaked me out, but now it makes me laugh, lol.
the special nurse is an ET nurse, and that is a nurse who will help him with learning to change his bag and stuff like that. i wouldn't call it a nurse to get you through it that makes it sound like you have to have a nurse to live or something. You could do without an ET nurse, but it's best to have one, he/she will be very helpful in helping choose appliances and with questions. And it won't be long before he will be able to do everything without help from a nurse. Like i said, i have had mine for almost a year, and every single day i think of some little reason i am glad i did the surgery. today it was that i ate salad at a buffet, yesterday it was that i could mow the yard without worry, the day before, it was that i could lay in the tanning bed. See, just dumb little stuff. There are times, i look at it and i think, yuck, but then i realize that is a ton better than life before, and i laugh at myself for thinking it's yucky.
His life will never be the same, personally i think it will be better. And he will adjust, i don't even think about the fact that i have one most of the time.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 4/8/2008 8:50 PM (GMT -6)   
Lew1201, I am feeling like you. My daughter is almost 17 (next week!) and is in her 3rd flare in a year and a half. She had her first Remicade infusion today so we will see if that helps. But we have started talking about surgery. There are moments when she just wants to rip her colon out and couldn't care less about any type of ostomy (we are still not sure about the different names). She just wants to stop flaring.
We are hoping to meet with a surgeon when she goes into remission. It would be much nicer to think about making these choices when not flaring at the time. Maybe we will be able to meet someone who has gone through this already. See it up close and personal. I have started to look at some websites that explain the surgery and recovery. I don't know if she is ready to face them yet.
I am scared about the thought of surgery. And recovery. And the rest of her life. And all the little details. So is she. We even posted on the Ostomies forum. They were great and made me feel like all those vain questions in my mind were as important as the other questions we have.
As the mother of a teenager, it is a fine line between letting them make the decision (they will be the ones who ultimately have to live with the results), helping them make the decision, and making a decision for them.
I will be reading your posts to see how things progress.
I hope your son feels better soon.
--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 60 mg prednisone
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


Jeremy "Mr. Snuts"
Regular Member


Date Joined Oct 2004
Total Posts : 162
   Posted 4/9/2008 9:08 AM (GMT -6)   
Trust me - recovering from the surgery is a lot easier then living with UC in my opinion. Look at these pictures -

VIEW IMAGE

That was taken when I had full blown UC. I weighed a whopping 118lbs. and I could not gain that back(even taking weight gainer).

This is going on 3 years after surgery -
(please forgive the obligatory flexing picture)

VIEW IMAGE

This is how I would compare my health before surgery and after.

If you have any questions or anything - don't be affraid to ask me here or email me.

Since your email is in your profile, I removed it to prevent the spam-bots from getting it :)
Diagnosed with Severe Ulcerative Colitis 1/04 -(18 at the time)
11/04 Total Colectomy
2/05 Ostomy Takedown
1/06 DVT In leg
5/06 Pulmonary Embolii
4/07 Another DVT In leg
Current Medications -
Vicodin 800mg when needed(yumyum)
Coumadin

http://www.myspace.com/mrsnuts/
http://www.livejournal.com/users/mistersnuts/

Post Edited (Jeremy "Mr. Snuts") : 4/9/2008 7:17:10 PM (GMT-6)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/9/2008 3:03 PM (GMT -6)   
So last I heard you 2 were looking into Tysabri? Is that a no-go? I checked that drug out on the internet...scary stuff!!! Seriously scary stuff. There is no way I would even want that drug offered to me, how would you ever make a decision? Now did his GI all of a sudden start the surgery speech? I've seen your posts over on the Ostomy forum too- you do get good info there, reassuring, I find. How does your son feel about it, most importantly?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
surgery scheduled 5/7/08- perm ileo
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/9/2008 4:03 PM (GMT -6)   
if you call the ET nurse or the surgeon they may have names of some people who will met with your kids, or you could go to a local support group they probably wouldn't mind talking to your children
Also, i don't know why we didn't think of this before ,there is a photbucket page, sign in with crohnsdisease (i think that is how you spell it) and the password is 6mp3asa There are some pics on there of us with ostomies, and that may help them see how "normal" you look. In fact, i put up a pic where there are two pics of that area of my body side by side and have had people try to guess which pic has hte ostomy, NOONE has gotten it right yet.
and i looked at that tysabri too, that is some scary stuff

Jeremy "Mr. Snuts"
Regular Member


Date Joined Oct 2004
Total Posts : 162
   Posted 4/9/2008 7:11 PM (GMT -6)   
I was exactly like that Humedi before I had surgery. I was scared, I thought the worst - I thought it was going to kill me even.

If I would of known life was like this after surgery - the day I found out I had UC i would of opted for surgery. People read things and let it scare them, and would rather battle a miserable life with UC then recover from Surgery and lead a normal life.

Am I saying there is going to be no complications? Everyone is different. I've had slight complications...do any of them even hit the tip of the iceberg of what UC was? Not even close. I'm not trying to sell you guys on Surgery - i'm just trying to say - keep your mind open...Surgery was the best decision i've ever made in my life(involving UC), and you guys are ruling it out because of things you've read?

As its been pointed out - you want to know why you don't see tons of success stories with surgery? Because those people are out living their lives. Because of the surgery i'm able to take a helicopter ride through the Grand Canyon, land, toast champagne and eat cheese with friends, and not having to worry about finding the nearest bush without having an accident.
Diagnosed with Severe Ulcerative Colitis 1/04 -(18 at the time)
11/04 Total Colectomy
2/05 Ostomy Takedown
1/06 DVT In leg
5/06 Pulmonary Embolii
4/07 Another DVT In leg
Current Medications -
Vicodin 800mg when needed(yumyum)
Coumadin

http://www.myspace.com/mrsnuts/
http://www.livejournal.com/users/mistersnuts/


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 4/10/2008 6:53 AM (GMT -6)   
Thanks, you guys.  I love the inspiring success stories, but I know we can't sugar coat the whole procedure.  The doctor's feel that since he still had a high level of Remicade in his system and it wasn't helping really at all, that the Humira would be ineffective.  I think they have ruled out the Tysabri b/c since he's on 6MP and Remicade that has "compromised" his immune system and that may be where some of the bad reactions have occurred (don't quote me on any of that).  He seems OK with the surgery.  He knows it's gonna be tough.  Thanks heavens he has the Cubs to get him through the days and evenings.  He went from hating baseball for the last 4 years to suddenly being the most diehard fan out there (must be the Prednisone).  Right now I think he's more concerned about how he's going to finish high school and if the IV steroids kick in and make him feel better, should he finish high school and put off surgery.  And how all of this will affect whether he can go away to college in the fall or he will have to put that off (there is scholarship money involved - so that's a whole other issue).  Thanks again everyone. You guys are amazing!!!!!

Mother of 18 year old son
Remicade
6MP 100mg

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