Should someone my age get surgery

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feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/22/2008 10:14 AM (GMT -6)   
Here I go I am getting another colonscopy today to see how bad my UC is or if I have crohns.

After they do a check they will give me the option of either cyclosporine a heavy drug then after a week I go home with Imuran and other pills or
Remicade.


I am 34 I do not want to spend the rest of my life worrying about after effects on these drugs nor do I want to take shot of remicade for the rest of of my life.

If you are in my position and they said it is only UC should I go for the surgery?

I want to live my life.

Thanks
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


honey bee 123
New Member


Date Joined Mar 2007
Total Posts : 19
   Posted 1/22/2008 10:19 AM (GMT -6)   
i am 17 and have tried lots of things to calm down my uc but nothing has helped. i often think about surgery but i dont want to have a colostomy bag attached to me for the rest of mylife or even have a scar because i dont want a reminder of my uc on my body but i think my life would be better if i had surgery. find out all the info u can about surgery the pros and cons then have a hard think. in the end u will no whats right for u xx
17 right sided colitis proctitis not in remission
3 asacol twice a day, aloe vera juice, garlic pills, multi vits, vit c and zink and cod liver oil.


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5136
   Posted 1/22/2008 10:31 AM (GMT -6)   
I have seen stats from 25-40% of UC patients at some point in their life have surgery. http://www.ccfa.org/info/surgery/surgeryuc

I have met with a surgeon who can do a 1-step J-pouch Laproscopically. = No Bag to wear & a few small scars but it is major surgery and takes months to recover from. I will probably have surgery sometime soon, I don't want to continue this way the rest of my life.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/22/2008 10:33 AM (GMT -6)   
Surgery is a very personal choice. First you need all the information. Check out j-pouch.org for some great info.

honeybee- a pouch is not the only option. there is a surgery where they make an internal pouch. Not everyone can have that surgery but it's worth asking a Gi about.

Quality of life is important. In this forum you will find that most of us aren't ready for surgery. if you want to know more about what life is like after surgery there is an ostomy forum on healinwell too.

I am trying to wait until after i have children to consider surgery. I have read about complications with pregnancy post surgery, for me it is better to find the right meds and wait. It is frustrating but having kids is more improtatnt to me right now. I have done the research and feel that someday i will be ok with surgery. I fear the recovery a bit. it is a year or so (from what I hear) before things start to regulate and you get used to not having a colon.

Get more info. Information is power.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/22/2008 10:46 AM (GMT -6)   
Im 38 and here lately Im wondering the same thing...maybe it would be worth it to have surgery..I dont know....
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, multi vitamin, Azathioprine 100m (started 1/9/08)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/22/2008 11:00 AM (GMT -6)   
Surgery was the best decision for me after suffering with a 2.5 year flare. I was steroid dependent and nothing was working to gain remission. If you are considering surgery please get educated! There is a great resource discussion board at www.j-pouch.org They have threads that discuss permanent ostomys as well as kock pouches. People from the age of 5 up to 71 have opted for surgery, age nor length of time with the disease is not always a factor.

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
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/22/2008 11:03 AM (GMT -6)   
there are complications with surgery too, I would find out all the info about all your options.
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/22/2008 11:17 AM (GMT -6)   
Sue how old were you when you had surgery?
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, multi vitamin, Azathioprine 100m (started 1/9/08)


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/22/2008 11:40 AM (GMT -6)   
As many before me have said, it's a personal choice. It's also a decision I fight with every flare. My thoughts, right now, are that I would try Remi before surgery. However, I would need a well defined treatment plan - how many doses do I try if it doesn't work right away... If things would get so bad, so fast that meds weren't an option, I wouldn't hesitate for surgery - which kind, I'm not sure yet...

A consultation with a colorectal surgeon would be the next step if you are considering surgery.

Good luck with whatever choice you make!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5136
   Posted 1/22/2008 12:07 PM (GMT -6)   
To be honest I struggle with the regret of not having surgery when I had my first flare. I would have had surgery 3 years ago..... things would be different for me now; I feel like my life has been stuck in a holding patern because of this UC. I know that I will have surgery because there is not a viable cure in the near term. Both my grandfathers had colon cancer and I have Pancolitis so my chances of needing surgery is higher than most others with an IBD.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5136
   Posted 1/22/2008 12:14 PM (GMT -6)   
I think that meeting with a surgeon is a great Idea.... just because you meet with a surgeon doesn't mean that you have to have surgery, the surgeon might tell you that surgery isn't right for you. When I met with the surgeon he had some requirements for me.... he wanted me to talk to some of his patients especially the ones that had some complications from the surgery, he also wanted me to go to a sperm bank first just incase. He wanted to make sure that I understood that this is major surgery and takes months to recover from, even though he could do it in 1-step and laproscopically.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/22/2008 12:43 PM (GMT -6)   
I understand I am talking to the surgeon today my flares have not been getting better after a week of IV steroids. After the colonscopy I guess we can talk remcade but I will ask how long should I wait until the remicade works so far I have been on everything but remicade but after a week of no results from the steroids I don't see much help in that
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/22/2008 12:58 PM (GMT -6)   
i was on weeks of pill steroids then a week of IV steroids then many more weeks of pill steroids before I got better...was better a couple months, now flaring again...started imuran a couple weeks ago, hoping that kicks in...
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m, multi vitamin, Azathioprine 100m (started 1/9/08)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/22/2008 1:06 PM (GMT -6)   
I was 42 when I had surgery. Like Keith said, in retrospect I wish I would have had it earlier in my 2 year flare. I lost a lot of living trying to struggle to gain remission.

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
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5136
   Posted 1/22/2008 1:29 PM (GMT -6)   
If you are planning on surgery down the road but are meeting with a surgeon before then ask about Steroid/Prednisone use.... depending on the surgeon and type of surgery, steroid use can make it complicated/more steps.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Olive B.
New Member


Date Joined Jan 2008
Total Posts : 1
   Posted 1/23/2008 9:09 AM (GMT -6)   
I'm not sure if you're female, or if having children is a concern for you, but I was just informed by my new gastroenterologist (which my last two never mentioned) that having the surgery will all but ruin your chances of getting pregnant. I have often thought of having the surgery (especially when I'm lying in the hospital), but that completely changed my mind once I had heard that.



----------------------------------------------------------------------------------------------------------------------------
Female, 25
Diagnosed with UC in Summer '00
Currently on Colazal (2/day), Asacol does not work for me even in excessive doses

Hospitalized in Fall '00 - suspected of having megatoxic colon and almost had to be operated on
Hospitalized in Summer '01 - had to have a transfusion because of excessive bleeding
Long history of prednisone use and recently had a bone scan to check for any damage

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/23/2008 9:18 AM (GMT -6)   
There are many women who have successfully gotten pregnant after surgery. You can meet them on the Pregnancy discussion board 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
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5136
   Posted 1/23/2008 9:24 AM (GMT -6)   
Olive,

I think "ruin" is the wrong word that your GI chose to use.... You should research it. But surgery may change things, I wouldn't say ruin. The best person to talk to is a surgeon or fertility specialist.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/23/2008 10:18 AM (GMT -6)   
Wish me luck they are starting me on cyclosporine through IV to stop my inlfammation

Has anyone used this does it work?
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5136
   Posted 1/23/2008 11:04 AM (GMT -6)   
I am currently on Cyclosporine. It works very well for me; it is my second time on it.

I'll write more later.

--Keith


DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 

Post Edited (ks1905) : 1/24/2008 8:14:25 AM (GMT-7)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/24/2008 12:22 AM (GMT -6)   
having surgery won't ruin your chances, there are women on the ostomy board here that are preg now, and have been preg with ostomies, you are far better off to have a bag, or j-pouch, than have active UC and be on all those meds!
in retrospect to the surgery, i wish i had had mine the day i first saw blood, i was 22 then and i wasted 8 years of my life with this stupid disease, in and out of the hospital, i tired remi and it worked for about three months, but even then, i was constantly waiting for the other shoe to fall, for the med to quit workign! Before i stared the remi i was ready for the surgeyr, by my GI said, just try it, i wish i wouldnt' have. ANyway, having a bag is not bad, i promise, in fact most of the time i forget it is even there. Until i just started typing this post i hadn't thought about it in 2 hours probably. It wsant' my life long dream to have an ostomy, but it is so much better than missing my life, and my child's life.
It is a personal decision though, do alot of research. It may help you to look into some famous people who have them, i think that will help you see how having an ostomy will not hold you back, and that you cant' see them!
good luck

TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/24/2008 12:40 PM (GMT -6)   
ok im curious, how long were you batteling flares before you had surgery?  Was it a painful recovery?  What about sex, is it wierd having that there?  Is it really better than dealing with UC?  Do you feel good all the time now?

Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/24/2008 12:56 PM (GMT -6)   
I'll be honest I'm advoiding surgery now. I just want this cyclosporine to work so I can go home. Maybe in the future
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5136
   Posted 1/24/2008 1:23 PM (GMT -6)   
Feelfine,

To be honest, if someone held a gun to my head and asked me about Cyclosporine and surgery.... I would rather have had surgery, I would have been cured. Sometime soon I will have surgery. Please realize that 25-40% of UC patients eventually have surgery for some reason or another.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/24/2008 1:36 PM (GMT -6)   
I know I just want to go home

Where do you get the blood tests done?

They didn't mention it yet.

They said when it is done I just go home with meds.
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 

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