confused! is surgery a good idea when in "remission"

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chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/25/2009 5:22 PM (GMT -6)   
Hi there! just found this site and think its great, loads of information!
Had uc for nearly 4 years now, for the past 3 years havent been able to work etc and basically had no remission.
To cut a long story short decided for the j pouch but the doc said try the enemas again then if they dont work try infliximab, then consider surgery. Two weeks later it weirdly started to settle, but didnt last long as now im still bad in the mornings with the usual blood, mucus ect. I must admit im not as bad as i have been but im constantly tired, feel wired all the time like my body needs to stretch and have knee pains. would it be wise for me to consider surgery still? it may flare up badly again and as someone said its like waiting for the shoe to drop. I have my appointment in 3 weeks time so have to think carefully.
I really dont want to try the infliximab, cant have any more steroids as my bones are starting to thin. Also my grandad has colitis, my nan had bowel cancer and my mum has just finished treatment for bowel cancer last week, am i at a higher risk if i carry on with meds?
sorry about the long posts its just everytime i go the hospital i see a different specialist with different ideas, need to get this off my chest...!
 
 
im on 125mg azathioprine
12 asacol tabs a day
various enemas

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 4/25/2009 6:08 PM (GMT -6)   
Only you can decide if surgery is right for you. In my daughter's case, she had gone through most of the various medicines, even prednisone wasn't helping as well as before (but giving her every side effect). We met with the surgeon towards the end of her last flare. By her surgery she was in remission. After the surgery, the surgeon said "Don't you feel better now than you did before surgery?" To which she replied "No". But at that time, she had gone into surgery healthy. Fast forward 9 months later and she says it's the best decision she made.
I hope you come to a decision that fits you.

--Mom of bratcat (18 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/25/2009 6:18 PM (GMT -6)   

Thanks so much for your reply bennie, glad your daughters ok! I think your right, the decision is only mine to make. Think il see how i go in the 3 weeks up to my next appointment and take it from there. just cant believe that it settled a bit once i had my mind made on the surgery, but time will tell i suppose :-)

 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/25/2009 7:07 PM (GMT -6)   
I wish I would have had surgery when I was in remission. Unfortunately, I never reached remission.
I kept waiting for the 6mp to kick in after trying everything else. I waited and nothing happened. Meanwhile, I was getting sicker and sicker. So sick that I ended up in hospital for 5 days getting transfusions and receiving IV fluids. My magnesium and potassium were out of whack.

Anyway, I had already consulted a surgeon. So when I got out of the hospital, I went to see the surgeon immediately and he admitted me on the spot and I had surgery two days later.

My point is that because I waited so long to have surgery, I now have to have three surgeries instead of 2. I was too weak and the prolonged pred. made it impossible for the surgeon to perform the 2 step jpouch.

If meds are working for you === you will have to seriously weigh options.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/25/2009 7:15 PM (GMT -6)   
Thats a very good point jblue. at the moment im ok exept in the mornings but i know that its not the meds thats working i think it just got to the point were it decided to die down itself. I think maybe surgery may be the best option for me i was just afraid incase i thought "maybe if id waited longer", but  i dont want to try the inflaximab so surgery would be the next option anyway if i had another flare up. im just fed up, i had to move back home and havent worked for 3 years cant believe how its flown by!

diagnosed with colitis 3 years  ago
taking 125mg azathioprine
12 asacol a day
can no longer use steroids due to bones thinning
thinks colitis is a pain in the arse!
 
female age 29
i live in the uk


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/25/2009 8:11 PM (GMT -6)   
if you are going to have surgery its much better to have it when you are at your healthiest, and on the least amount of meds. You aren't on pred so that's good, being on that can really kick your butt (no pun intended) during surgery.
The way to look at it is if the UC is affectign your quality of life and you cant do the things you want to do because of it, and it looks like since you cant work thats happening to you, you should cconsider surgery cause that will give you back your life!
But it is your decision to make.
Readign the posts on these boards made the decision so much easier for m, seeing so many people sooo happy after surgery!
good look with your decision!

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 4/25/2009 8:34 PM (GMT -6)   
I agree with Summerstorm...this board is very helpful and it too helped me make my decision and I have yet to regret it. 
 
Surgery is a very important and serious decision.  I was on many medications and nothing worked, including prednisone and Remicaid.  I have heard many many many people say they wished they had had the surgery sooner...I did not want to be one of those people.  So, once it was suggested by my GI they scheduled the consult with the surgeon and two weeks later I had my surgery.  It is has been the best decision of my life.  Almost 3 months later I am back to me again.  I had forgotten what it I enjoyed in life.  My UC had gotten so bad I could barely take care of myself, let alone my son, household and I had to quit my grad program.  I was losing grasp of my life and everything I loved.  In fact, I had not realized all that I was losing and had lost until I nixed the UC and started living again!
 
I did opt for the proctocolectomy with the permanent ileo b/c I was slowed down enough with the UC and just didn't want to have to deal with the demands of the J-Pouch and the surgeries...I was and am done.  : )  And I cannot tell you how sweet it is.  Life is good!  I'm super excited b/c for the first time in two years I'm able to exercise and see results!!!  I just started a fairly difficult pump class and I LOVE IT!!!  I just have to be cautious with the push ups b/c they pull on Penelope (my stoma).  : )  And you know, start posting on the ostomy site b/c the people there are invaluable!!!  Holy Hell!!!  I could never have done this without them. 
 
I wish you the best of luck and your post was not long at all.  : )  I'm one who is long winded so anytime you feel you've wrote too much, that is very doubtful. 
 
I hope you're having a nice weekend!!!
 
: )  Robin
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/25/2009 10:36 PM (GMT -6)   

I had surgery after living with a 2.5 year flare.  I was prednisone dependent and on 10mg at the time of surgery.  I was still working but that was about all I could do.  I opted for a jpouch and had 2 surgeries, 8 weeks apart.  I went back to work 3 weeks after my first surgery, with an ileostomy, and then 3 weeks after the reversal with my fully functioning jpouch.  The first year post surgery was hard mostly because I was so fatigued from the years of being sick.  This was all 8 years ago and I couldn't be happier with my decision.

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


chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/26/2009 5:58 AM (GMT -6)   
Thank you all so much for your kind words its made me determined to get this sorted now! woke up this morning not feeling too bad toilet wise but im absoulutely knackered and ive only been awake 1 hour!
I think everyones right, im going to seriously talk to the doc in 3 weeks about surgery. Depending on which specialist i see (ive seen about 7 so far!) il have to tell him im doing whats best for me, sometimes i feel im just a guini pig to them lol, i cannot spend another 3 years holed up at home, im going on a 6 hour coach trip in 2 weeks so that will be interesting (il have to sit near the toilet so i can ambush people if need be!)
take care everyone, il keep you all posted on my next hospital appointment! :-)
diagnosed with colitis 3 years  ago
taking 125mg azathioprine
12 asacol a day
can no longer use steroids due to bones thinning
thinks colitis is a pain in the arse!
 
female age 29
i live in the uk


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 4/26/2009 9:35 PM (GMT -6)   
Oh and just FYI...it seems as though once you've decided on the surgery your colon knows there's a plot against it, and acts perfect. Almost immediately after my decision I had almost four wonderful days with nearly no pain and very little runs to the bathroom. So, that had me thinking if I really needed the surgery...of course I did...my colon was just sucking up! If you do make this decision and your colon starts being all nicey-nicey DO NOT LET IT FOOL YOU!!! It's still angry and will continue do what it does best...suck the life right out of you! : ) That's how I felt at least. : )
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/27/2009 5:45 AM (GMT -6)   

lol i think your spot on there! because i decided maybe surgery was the best answer on my last hospital visit but the doc talked me out of it, and for a week or two it settled. Can i just ask, when i was first diagnosed one doc said i had a thin bowel (when i go the toilet even when i was on the steroids and doin ok, my bms were and still are painfull, sometimes they just come out thin!) If i got the surgery and got the j pouch do you think id still have this as the bowels taken out?

 

 

 


diagnosed with colitis 3 years  ago
taking 125mg azathioprine
12 asacol a day
can no longer use steroids due to bones thinning
thinks colitis is a pain in the arse!
 
female age 29
i live in the uk


chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/27/2009 5:55 AM (GMT -6)   

better add to my last post as i dont make sense lol, what i mean is that when they remove the whole colon they leave a small stump of it so would that mean no more thin bms as the stumpy bit cant be affected? its like a workout every morning! no wonder im knackered! also could i just ask, i get bad pains in my wrists and hands constantly now, seems to be getting worse, do you think this would settle after the op or is it just a lasting result of the colitis?  this boards been a mine of information so gathering all i can before my next hospital appointment as the specialists i have are terrible.

 

 


diagnosed with colitis 3 years  ago
taking 125mg azathioprine
12 asacol a day
can no longer use steroids due to bones thinning
thinks colitis is a pain in the arse!
 
female age 29
i live in the uk


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/27/2009 7:18 AM (GMT -6)   
Chattyhunter, first of all you're not in remission. Your flare is better, but with a full remission you wouldn't be having symptoms of UC.

Second, I've been on Inflixamib for three years with no problems. I think if I were 29, however, I'd be seriously considering surgery.

Good luck to you in making your decision.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/27/2009 1:01 PM (GMT -6)   
I think its probably going to be surgery for me then, because this is the best its been since ive had it and it aint good enough!
I wish i would have found this board a long time ago, but probably would have had to try the various meds anyway. I didnt even find out about the j pouch surgery till a couple of months ago, the doc mentioned the possibilities of surgery but didnt explain that it would be a pouch, he made it out like it would only be the bag so i went home and googled it! even if anything went wrong down the line,reading peoples stories, who have chosen to keep the bag have put all my fears at rest!
diagnosed with colitis 3 years  ago
taking 125mg azathioprine
12 asacol a day
can no longer use steroids due to bones thinning
thinks colitis is a pain in the arse!
 
female age 29
i live in the uk


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/27/2009 4:50 PM (GMT -6)   
YAY i am so glad you are feeling better about your decision and that you will be healthy soon!
If you start to doubt to your decision, just start thinking of all the things you will be able to do afterwards!

chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/28/2009 4:16 AM (GMT -6)   
lol i know it will be weird to not have any pains theyve been part of me life for 3 years! but cant wait to get this sorted, and i tell you this once its gone il never moan again!

diagnosed with colitis 3 years  ago
taking 125mg azathioprine
12 asacol a day
can no longer use steroids due to bones thinning
thinks colitis is a pain in the arse!
 
female age 29
i live in the uk


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/28/2009 6:57 AM (GMT -6)   
Well if one has made up his/her mind for surgery, then the sooner the better. It is always better to have it, when you are in remission, as the healing / recovery is much faster. The surgeries performed in remission have lesser complications as compared to the ones' performed in emergency / flare ups.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 4/28/2009 9:36 AM (GMT -6)   
My GI and his nurse explained that some of their patients went into the surgery with the intent on having the j-pouch, but after starting back up their lives again they just kept the ileostomy!  After hearing that one woman ran marathons with her ileo and opted to keep it afterward had me thinking that I could do that too! 
 
There are many success stories both ways.  I weighed my options and lifestyle with the both the permanent ileo and the j-pouch, and just decided to go on with my life the second I was UC free...and I did! 
 
Just think of surgery and a way for 'you' to take control of a very controlling disease.  You are taking back your life, your ambitions, your dreams.  We all have set life structures and goals, but when you have something as debilitating as UC that is all changed...but you have the power to get it all back! 
 
Summerstorm is my age and living life to the fullest with her ileo, and it just got me thinking that it can be done.  I did it and LOVE IT!!! 
 
I wish you the best of luck and look forward to hearing of your decision and if surgery does occur what you're life is like afterward!!!
 
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 4/29/2009 6:21 AM (GMT -6)   

Thanks so much everyone! i feel really determined to get this sorted now, been reading all the stories on the site and so i know whats ahead of me. Il keep you all updated after ive had my next appointment 15th may,

take care everyone smilewinkgrin


diagnosed with colitis 3 years  ago
taking 125mg azathioprine
12 asacol a day
can no longer use steroids due to bones thinning
thinks colitis is a pain in the arse!
 
female age 29
i live in the uk

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