31 Years Old and Dr. is mentioning SURGERY

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samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 6/18/2009 3:04 PM (GMT -6)   
I have been out of remission for over a year.  I have had UC for 7 1/2 years and been in remission for about a 1 1/2 years of that time.  Over the past year, I have tried humira with no success.  Over the past 6 months, my BM have increased to 5-10 a day while taking prednisone 40 mg, colazal 9pills/day, imuran, and Super Shield (probiotic).  I also was taking rowasa about 3-4 times a week.  I discontinued that and started canasa last night.
 
I called my dr. yesterday to chat about my condition that is not getting any better and he said I should start thinking about surgery.  He said they would do a colectomy.
 
Can anyone provide me insight into this procedure? 
 
Thanks...

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/18/2009 3:36 PM (GMT -6)   
Have you tried Remicade? It sounds like you've pretty much tried just about everything. I'd honestly be thinking about surgery, too, as you've pretty much been sick the entire time you've had UC. Yes, you're young, but surgery will likely give you your life back.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 6/18/2009 3:42 PM (GMT -6)   
Yes, you've definitely had a rough go of it. Have you tried checking out HW's Ostomy forum or www.jpouch.org? They might be able to answer many of your questions. Take care, let us know how you are doing.

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/18/2009 3:53 PM (GMT -6)   
I had surgery after 12 years of living with UC; 10 of those years were in remission. One last bad never-ending flare pushed me to the decision. I have never regretted it. I have had perfect health these past 8 UC-free years. Even if you aren't ready for surgery do make an appt. for consultation with a qualified CR surgeon. You can get recommendations for good surgeons in your area at www.j-pouch.org

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 6/18/2009 4:16 PM (GMT -6)   
Thank you all very much.

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 6/18/2009 6:19 PM (GMT -6)   
i had surgery at 29 after 8 years of UC, and basically no remission!
I had finallly had enough, i now have a perm ileo, best decision EVER!!!
Its so nice to not be sick and not have to take tons of meds or go to the dr all the time. I went to a resturant next to my old GI's office today and i looked at the building and thought "ha ha dont have to go back there again!"
Thats an awesome feeling!
Its a very very hard surgery and recovery is NOT fun, i dont wanna lie about that, but its worth it a 1000 times over.
Good luck!

samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 6/19/2009 8:40 AM (GMT -6)   
What is it about the recovery process that makes it so hard SummerStorm?
 
Also, after the procedure, were you able to go back eating foods you could not previously eat because of UC?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/19/2009 8:49 AM (GMT -6)   
I can eat everything and you can tell it by looking at me, lol.
But really, before surgery i was down to eating (this is not a lie) ham and cheese, with no bread, chicken strips, pizza and frenchfries.  I could drink cherrycoke and water, but not cold water.  And that was it, anyhting else would tear me up.
Now i just eat whatever whenever!  I do stay away from nuts, seeds and popcorn, those are more likely to cause blockages.  However lots of people do eat them with no problem.
 
Why is it hard?
 
its hard cause any surgery is hard of course, but you dont realize until you have had your stomach muscles cut, just how much you use them, and so even little things like coughing or sneezing hurt!  And then if you opt for a perm ileo they will sew your bottom shut, and that's kind of painful too, makes it really hard to sit down, lol.  And of course you have to get used to the bag, which for me wasn't hard.  But you have to get your energy back, which can take a while, some people aren't back up to full speed for 6 months or so.  But within 2 months i had more energy than i had had for the past 2 years with UC (did that make sense).
You will probably spend about 4-6 days in the hospital, and they will keep you drugged up so thats always good,lol.  Then i went home and took pain pills for about 3 or 4 days during the day, then for about a week at night, not so much for pain but to help me sleep, cause its hard to get comfortable.
 
Anyway, i hope that answered some of your questions, if you have more please ask.
But i am 100% happy with my choice!
 
 

samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 6/19/2009 9:42 AM (GMT -6)   

Thanks!

I'm kind of straddling the fence right now.  I have good days and bad days and I'm just trying to make the correct decision and decide if my condition is bad enough to where I need my colon removed.  I'm pretty certain this procedure will have to be done eventually, just don't know when.  I do no I'm in a pretty bad place right now and I'm tired of worrying about it.

What does it feel like not to have your colon?  Does if feel different?  If so, how?  Do your bowel movements feel different?


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/19/2009 2:41 PM (GMT -6)   
it is hard to make the decision, but what finally threw me over was watching my son go off to the beach to play and me not getting to go, and realizing i was giong to miss his whole life if i didnt take the chance and see.

Anyway it doesnt' reallly feel any different, to not have it there, i usually dont even think about it not being there.
When i first woke up from surgery, i could tell though, i felt so clean. I could feel that the disease was gone from me.
i didnt have the j-pouch so i dont have the same kind of BMs that most people think of. I have a perm ileo so my poo comes out about 95% of the time into my bag.
I rarely feel it, sometimes if i have eaten something thick then i will feel it kind of push out, thats hard to explain, of if i have alot of gas i can feel it sort of tickling like.
But it doesnt' hurt. I occasinally have phantom pains like i need to go poo, and i think that is probably the most annoying thing, lol.

samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 6/19/2009 9:39 PM (GMT -6)   
summerstorm said...
it is hard to make the decision, but what finally threw me over was watching my son go off to the beach to play and me not getting to go, and realizing i was giong to miss his whole life if i didnt take the chance and see.

Anyway it doesnt' reallly feel any different, to not have it there, i usually dont even think about it not being there.
When i first woke up from surgery, i could tell though, i felt so clean. I could feel that the disease was gone from me.
i didnt have the j-pouch so i dont have the same kind of BMs that most people think of. I have a perm ileo so my poo comes out about 95% of the time into my bag.
I rarely feel it, sometimes if i have eaten something thick then i will feel it kind of push out, thats hard to explain, of if i have alot of gas i can feel it sort of tickling like.
But it doesnt' hurt. I occasinally have phantom pains like i need to go poo, and i think that is probably the most annoying thing, lol
 
 
 
Please explain a little further.  What's the deal with a bag/perm ileo?  What's the difference from a jpouch?
 
Thanks....
 

qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 6/19/2009 10:10 PM (GMT -6)   
24yrs. old and I've had about 4 doctors mention surgery :(

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/19/2009 11:07 PM (GMT -6)   
A jpouch is where they take out your colon and then use your small intestine to make a pouch that will hold your poo. While that heals and gets ready you have to wear a bag, then they will connect your small intestines to your rectum and you go to the bathroom the same as you do know. Its usually 4-8 times a day. Suebear may come along and offer you more info on that.

With a perm ileo, they take out your colon and then pull the end of you small intestine out through your stomach (that's called a stoma) then you cover that with a bag and your poo goes in there. Your bottom will be sewn shut. It varies for people but i empty when i pee,although i can go about 5 hours between emptying. I usually dont like to wait that long though, plus i usually pee more than that too!
The output is either watery or like a pasty consistency. And you just open the end of the bag and it goes in the toilet then you close the bag back up and go about your way, takes about 2 minutes after you get the hang of it. Again, it varies, but i change my wafer and bag about every 4 days. Some people get 7 days out of them. Changing everything takes me about 8 minutes now that i am experinced at it,lol.

I chose the perm ileo because of the possible complications of the j-pouch, i think like 90 percent of people who get jpouchs are very happy with their choice and have very little complications, or the ones they do have can be fixed easily. I didn want to risk those 10percent, and honestly, i was so tired of pooping i didnt ever want to do it again!

I hope that helped some
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