how to deside time for surgery

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peverroad
Regular Member


Date Joined Nov 2008
Total Posts : 28
   Posted 1/16/2009 8:22 AM (GMT -6)   
i have uc and have not had it undercontrol since diagonised 5 years ago.  i have tried 3 different meds and pred does nothing for me.  I am able to work cause i have a great boss that does not question me going to the bathroom all the time.  I just don't know.  I have considered it but doc hasn't said anything about it.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/16/2009 10:16 AM (GMT -6)   
you can always ASK your GI for surgery, he may want to try other things, but if your quality of life is not good or you are pred dependt they shoudl reccomend it, and if that one won't keep going until you find one that will!
If the pred isnt helping then you have some serious problems.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 1/16/2009 11:01 AM (GMT -6)   
According to my GI, surgery is always an elective option for the UC patient. You should ask your GI for a surgical consult. I also encourage you to visit www.j-pouch.org to review your surgical options and talk with those who have had each surgery type.

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


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 1/16/2009 3:40 PM (GMT -6)   
I have UC which has not responded to meds for two yrs. My colon is now so bad that I WANT the surgery. My GI has referred me to a surgeon, and I got second consult from another surgeon.

Surgery is not something I want to do, but "I am sick and tired of being sick and tired."

Because of my age, I have decided to have the permanent bag.

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 1/16/2009 6:29 PM (GMT -6)   

I had UC for 7 years before I had the j-pouch surgery a few months ago. I was just like you, tried a bunch of meds and nothing helped, not even prednisone. Pred would help me a little by reducing the frequency of my bathroom visits, but never completely controlled my symptoms. As soon as I got to a low dose all my symptoms would come back with a vengence. I was never in remission and I got weaker and sicker every year.

Looking back on all of it now, I wish I had opted for surgery years ago. It would've saved me so much time and pain. My GI had been suggesting surgery for a few years prior, but my family was extremely against it so I waited. And then one ER visit I decided that I was done waiting.

Surgery is something you have to decide for yourself, but if prednisone isn't helping you need to look into your other options. Speak to a surgeon if you can, it'll give you a better idea of the whole process and whether or not it's something you're willing to do. A consult doesn't bind you to anything, you can always change your mind.


Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
Meds taken with no result: 5asa, imuran/6mp, remicade, and of course prednisone, both oral and enemas. Also, many many herbal remadies.
1st j-pouch surgery done on July 30, 2008
2nd j-pouch surgery (ileostomy reversal) on November 14, 2008
Med and pain free :)


peverroad
Regular Member


Date Joined Nov 2008
Total Posts : 28
   Posted 1/18/2009 9:34 AM (GMT -6)   
those with a j pouch can you explain it to me.  I have alot of inflafation in my rectum.  But i don't think they use that.  Do you still have the urge. The urge is what kills me it come in the middle of everthing.

LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 1/18/2009 12:19 PM (GMT -6)   
Hi peveroad,

I have found that GI's tend to try to do everything BUT surgery for as long as possible (which is a good thing--they only recommend it as a LAST resort to all other treatments), but I guarantee you that if you see a SURGEON, they will most likely recommend surgery.

Twelve years ago (really!) I saw a surgeon bc my Crohn's was really flaring at the time, and he wanted to perform an ileostomy BACK THEN. I was devastated (I was only 16), and my GI said we should still try Remicade before any surgery--I was glad, bc Remicade worked Very well for me for ten years! After it stopped working, i really had no choice left, but I was really glad to have those 10 years, and I am also glad now that I have an ileostomy--having it is really not a big change in my life (like I thought it would be)!!

I can't tell you anything about the j-pouch, as Crohn's patients are not eligible for them, but I am sure some of the j-pouchers who post here will let you know about their experiences!

:)

E

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 1/18/2009 1:49 PM (GMT -6)   

For jpouch surgery, the colon and rectum are removed (only 1-2cm of rectal tissue remains).  The jpouch is created out of 9inches or so of small intestine and acts as a false rectum.  I had primarily rectal disease and like you was worried about urgency but after a suitable recovery there is no urgency with a jpouch.  There also is no pain, discomfort, bleeding, or general feelings of malaise.  My health and activity returned to 100% after surgery.

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


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/18/2009 2:33 PM (GMT -6)   

I would ask your GI to schedule you for a surgery consult. Once you've met with a surgeon, you can decide if and when to have surgery. After 7 years of dealing with Crohn's in my rectum, I was also "sick and tired of being sick and tired" and was ready to have surgery.

It was the best decision I've made. I've never regretted having surgery, because I'm as healthy now as I was before I was ever sick with Crohn's. Plus, I don't have to take any medicine, so there are no side effects to deal with, which is a real blessing.

Good luck!


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Teebs
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 1/19/2009 7:32 PM (GMT -6)   
I had UC for 6 years.  Severe endometriosis for years before that which resulted in a total hysteroectomy 4 years ago. I was sooo much better after this that I thought things would be okay now.  Unfortunately not.  Each spring my UC would flare (loose 25-35 pounds, a month on the couch, living in the bathroom) and each time it flared it would take more and more meds to get it to calm down.  This spring, no flare.  Instead it waited until August.  Nothing calmed it down, so surgery was my only choice.
Surgery is not fun.  There can be many complications.  The bag isn't that bad, especially if the placement is a good fit for you and you have some great nurses.  When you decide that surgery is an option, talk to people openly and you will be amazed at how many people have gone through this.  Be sure that you are ready for a change in symptoms.  Things aren't always better, but they are different.
Think long and hard about what you want and EDUCATE yourself.  There are many great web-sites with straight information.  Personally this web site is the most helpful one I have found.  The people here really do give honest answers and are very supportive.
As for the point I'm at, I have my colon removed 8/15, had my  j-pouch made 11/23 and will hopefully have the plumbing connected in May.  I had to have it in 3 steps because I was on so many meds and in such bad shape.
My UC pain is gone, thank goodness, but my loop ileostomy gives me constant problems and is uncomfortable.  But compared to the pain I was in, it's not bad. 
This decision needs to be one you make and can live with.
Good luck.
UC diagnosed in 2004
total collectomy in 2008
awaiting reconnection


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 1/19/2009 9:42 PM (GMT -6)   
UC almost killed me. I was so dehydrated the last time I went to the ER for a bag of saline, the tech coudn't find a vein in my arm (either of them).. It was NOT a fun experience as they tried and tried .. and FINALLY found one to give me the IV of saline to rehydreate me..

I'd go in the ER with blood pressures like 40/60 . I'd try to work and every 10 minutes I'd be in teh bathroom eitehr vomiting or having diarrhea.. sometimes both.. and not always making it in time...

So when the Rentacaid ? didn't work. and I'd be taking high levels of prednazone that made my skin swell up.. that surgical option was the last resort..

I chose to live.. and be here today to talk about what I went though and hope maybe something I share helps someoen else who was where I was..

This was after 9 months of UC. I have no idea how some of you have put up with it for years. Or maybe I just had a bad case..

But the choice is up to you.. it's not your first choice. but it works if you're out of any other options..

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/20/2009 9:38 PM (GMT -6)   
LittleE said...
Hi peveroad,

I have found that GI's tend to try to do everything BUT surgery for as long as possible (which is a good thing--they only recommend it as a LAST resort to all other treatments), but I guarantee you that if you see a SURGEON, they will most likely recommend surgery.

Twelve years ago (really!) I saw a surgeon bc my Crohn's was really flaring at the time, and he wanted to perform an ileostomy BACK THEN. I was devastated (I was only 16), and my GI said we should still try Remicade before any surgery--I was glad, bc Remicade worked Very well for me for ten years! After it stopped working, i really had no choice left, but I was really glad to have those 10 years, and I am also glad now that I have an ileostomy--having it is really not a big change in my life (like I thought it would be)!!

I can't tell you anything about the j-pouch, as Crohn's patients are not eligible for them, but I am sure some of the j-pouchers who post here will let you know about their experiences!

:)

E
Hey, E, I probably have UC but there are some indications that tend towards Crohn's- are you saying you had a permanent ileostomy for Crohn's?  I thought that Crohn's just continues (or starts up, in the case of Crohn's Colitis) in the small intestine even if you remove the colon?  I would opt for a permanent ileo in a heartbeat if it could solve my problem, in the event they can't be 99% positive this is UC and not Crohn's (it is more like 90% for now). 


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm, TSO again
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 

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