Anyone Considered Surgery While In Remission?

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Silent Lucidity
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Date Joined Nov 2007
Total Posts : 625
   Posted 8/7/2008 5:27 PM (GMT -6)   
Just lately I've been thinking about maybe pursuing a j-pouch,for various reasons.At 37 years old,I have no wife or kids,and I've been in the same job for 21 years.One romantic notion of mine,is to one day "jack it all in" and go travelling,taking odd jobs as I go.However,I can't stay in remission without Azathioprine,which could pose to be tricky for blood tests,moving around so much in foreign lands(I'm English and would travel through Europe).

Also,while I'm still in a secure job(my place of work has seen many changes,who knows how much longer it could be secure?)it would be a good time(if there is one)to do this,recovery between stages etc.

All that being said,even if I don't pursue the travel notion,I still wonder if a j-pouch might be the way to go,what with all the heavy duty meds and all.If I want to stay in remission,it looks like Azathioprine will have to be very long term for me,and maybe the risks that carries make surgery a more viable option?

These thoughts have been going through my head for the last several years,and whether I could actually "bite the bullet" and go through with it,I'm not sure.However,it would be nice to hear some other opinions about it,especially if you have had/are having,similar thoughts.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


ediekristen
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Date Joined Apr 2007
Total Posts : 1366
   Posted 8/7/2008 5:48 PM (GMT -6)   
Personally I feel that having surgery done when you're at your healthiest is the best idea because you are more likely to heal better, bounce back faster, and probably have less potential complications. The thing that makes it difficult I think is when you're really sick and in agony on the toilet all the time, surgery sounds like a GREAT idea, but when you're doing much better you're more likely to think "Well, I'm okay now, surgery isn't necessary." But really, you don't want to wait until it IS necessary in an emergency situation.

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


Bennie
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Date Joined Nov 2006
Total Posts : 552
   Posted 8/7/2008 8:15 PM (GMT -6)   
My daughter had surgery 5 weeks ago. She had 3 big flares in 1-1/2 years. Never had a minor flare. Each time she was put on a new, more potent drug. And prednisone. Back in the fall of 2007 (her 2nd flare) we talked about consulting a surgeon in the spring (when she would be in remission) so we would be prepared if we had to make a decision. Unfortunately she flared in the spring. She was in remission when she had her surgery.
 
Ediekristen is right. It is much better to go into surgery healthy. But it is also very hard. You almost forget how bad the flare can be (I think it is very similar to labor and delivery--you can remember the pain but you can't relive and feel the pain). But we knew it was only a matter of time before she flared again. And she was towards the end of drug treatments.
 
I think either way we would have consulted a surgeon this past spring. At least to get as much information as possible and to be as prepared as possible. If my daughter had smaller, more controllable flares, maybe we would have waited longer. I don't know. I do know that this was the hand she was dealt, and this is how we dealt with it. Now hopefully she will be able to enjoy a long and healthy life. And get through her last year of high school without being sick so much tongue .
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
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!  7/3/08-Step 1 j-pouch surgery


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 8/8/2008 4:05 PM (GMT -6)   
Thanks for the input.I'm going to mention how I've been feeling to my GI next time I see him.As I said though,the Azathioprine keeps me well managed,so I often think I'm a little bit insane to contemplate surgery.What I do like,is the thought of consistency,once the j-pouch has been "broken in".No more worrying when the next flare will come,or keeping an eye on the clock for the next med dose,or even worrying how much longer the latest med will keep working.

Bennie,I wish your daughter all the best,I'm sure this procedure will allow her to get on with her life and have a much better future.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/9/2008 10:13 PM (GMT -6)   
it is not crazy to to think about surgery. i wish i had thought about it sooner, lol. it is much better to have it while well, esp since you are not on pred. So many of us, myself included, end up having surgery while in a major flare, so we are on pred, which makes it much much harder to heal up and get your energy back.
I had the same feelings you did, although other than the first few weeks with the remicade, i was never really doing good. And i was always waiting on things to quit working.

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 8/10/2008 7:42 AM (GMT -6)   
That's the dilemma though,as things are at the moment(and very often are),I'm symptom free with normal bowel movements.It's a terrible thing to say with so many on here suffering,but I sometimes wish something would happen to make the decision easier.I think I may ask for a surgical consult,just to try and get things a little clearer in my head.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/10/2008 7:47 AM (GMT -6)   
I think it is better to avoid surgery for as long as you can if you are managing to get into remission and things are fine for long periods. You just never know, what if a wonder drug or cure is round the corner? God willing.

Diagnosis: Oct 07 - Non Specific Colitis (possible UC or Chrohn's but biopsy not confirmed by 2 seperate GI's) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon). 2 small Piles also diagnosed but not clear whether they are bleeding or not.

Medication Still taking: 800mg Mesalazine (Asacol) 3 times a day appear to have stopped working. 

Symptoms: Jun 08 - Bleeding returns with diarrhoea after taking meds for stomach ulcer. Sigmoidoscopy in June rules out rectal inflammation, Colonoscopy planned for August. (Doctor hinting it's Piles and IBS). No pain, no other symptoms.

Procedures: 2x Sigmoidoscopy result - all slight non specific inflammation non IBD. 1x Colonoscopy result - mild non specific inflammation on right hand side - IBD not confirmed. 1x OGD result - small ulcer. Barium MRI of stomach and small bowel result - all normal.


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 8/10/2008 8:33 AM (GMT -6)   
LondonRed,I hear and respect what you're saying.However,after 13 years of dealing with this,I don't allow those thoughts to sway any decision I may make.Over the years,the UC has stifled me from doing things,whether because of a flare,or the fear of a flare.I could spend the next 10-20 years waiting for some sort of cure,and not living life as fully as I should.Or I could spend a year to eighteen months getting and adapting to a j-pouch,and plan my life,knowing each day would be roughly the same,bowel wise.If a cure came along during,or soon after that decision,it's just life,you roll the dice and take your chances.

As I said before,anything less than Azathioprine,and I flare constantly anyway.Surely the Aza is pretty much the same type of metaphorical dice rolling,given it's associated risks?

There are people here that are much stronger willed than I,and don't allow the UC to stop them from doing anything.Unfortunately,I have lived in fear of it since my second flare in 1997,hence the thoughts of surgery.Thanks for your input,as I said,it is all appreciated and taken on board.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 8/10/2008 9:38 AM (GMT -6)   

I've talked to surgeons and GIs, and all of them have said there won't be a cure for many many years. I was told by a Cleveland Clinic GI that Humira being approved will take another few years, and stem cell, if it works, will take even longer to hit the markets. (Sorry to burst anyone's bubbles).

Silent Lucidity, it wouldn't hurt to get a surgical consult. Even if you don't decide to have surgery soon, at least you have met w/ a surgeon and can establish a relationship that will be helpful when you do need surgery. It is best to have surgery during remission since you'll be at your healthiest. And there have been people who have had surgery w/o even trying immunosuppressants and biologics b/c of the potential side effects/risks.

Personally, I'm having surgery next month since Remicade is not working and I know I cannot live "normally" while in a flare. I'm ready to move on.


Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*surgery tentatively scheduled for September


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/10/2008 10:05 AM (GMT -6)   
Silent Lucidity, when i was considering surgery, it's a hard decision, i was secretly hoping (and this is horrible) that i would get toxic mega colon and not have to make the choice myself. The thought that there way be a cure soon was a hard thing for me to overcome, i had this image in my mind of me waking up from surgery to a news report that a cure for UC had just been found! and i was thinking, OMG if that happens i am gonna be so freaking mad!
but rationally i knew that was not going to happen, and like you, i thought, ok i can sit around waiting on a cure, or i can take the cure i KNOW will work! so that's what i did, i took back my life.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/10/2008 11:13 AM (GMT -6)   

I was just in a meeting with a doctor yesterday who confirmed there are no "cures" in our near future. 

I think, in your situation with remission, that it would be best to put off surgery until your next awful flare.  You could have several more years of remssion and quality of life.  I had surgery after a chronic 2.5 year flare and although I was pretty beat up by UC I recovered just fine from surgery; was back to work 3 weeks later and back to hiking. 

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


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/10/2008 11:23 AM (GMT -6)   
Let me get this right, you have been in remission for 11 years?

Diagnosis: Oct 07 - Non Specific Colitis (possible UC or Chrohn's but biopsy not confirmed by 2 seperate GI's) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon). 2 small Piles also diagnosed but not clear whether they are bleeding or not.

Medication Still taking: 800mg Mesalazine (Asacol) 3 times a day appear to have stopped working. 

Symptoms: Jun 08 - Bleeding returns with diarrhoea after taking meds for stomach ulcer. Sigmoidoscopy in June rules out rectal inflammation, Colonoscopy planned for August. (Doctor hinting it's Piles and IBS). No pain, no other symptoms.

Procedures: 2x Sigmoidoscopy result - all slight non specific inflammation non IBD. 1x Colonoscopy result - mild non specific inflammation on right hand side - IBD not confirmed. 1x OGD result - small ulcer. Barium MRI of stomach and small bowel result - all normal.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/10/2008 11:40 AM (GMT -6)   
To me it makes a lot of sense for younger people to consider surgery even when they're in remission, especially if they have frequent flares or need to take medications beyond the 5-ASA's. The risk of colon cancer and bad effects from medication, while still small, does increase with more years of use. The threat of flaring is always there, no matter how long you've been in remission. It's a calculated risk either way, and everyone has to decide for themselves which route to take.

For those of us who developed UC in middle age, it probably makes a bit less sense. I'll probably never have UC for 40 years. My lifestyle is more settled and it's easier for me to manage. On the other hand, one could argue that the older I get the harder the surgery will be. Right now I'm well controlled on Remicade; if it fails me, I'll have to seriously consider surgery.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 8/10/2008 12:08 PM (GMT -6)   
LondonRed said...
Let me get this right, you have been in remission for 11 years?

I think what he was trying to say that 11 years ago when he had his second attack (there has possibly been more since that time) is when the option of surgery crossed his mind, not that that was his last time he was flaring.  I could be wrong though.
 
SL, I agree that since this option is on your mind that you should research it and talk with a surgeon so you know your options.  This is the same advice I would give for all of the treatments that are avaliable.  I know some people say that surgery should be the last option but that is just not true.  Each person has to make their own list of which options they are willing to try and in what order based on the research they have done and the quality of life they desire.  Each person has different levels of acceptance of different things.  Myself the thought of self medicating myself for the next 40 or so years was enough for me.  Although I was never able to achieve remission which made my decision easier.  There are risk with every treatment of this disease so surgery is no more dangerous then the possible side effects from prolonged use of untested medications.
 
You can type j-pouch or ileoanal reservoir into a search and come up with a wealth of info.  I would suggest that if you plan a consult with a surgeon that you research it prior and have a list of your personal questions you would like answered.  A consult in no way is making the decision for surgery.  The surgeon will review your records and make suggestions as to if he/she feels you are a good candidate for surgery.  Even if the surgeon says that he/she thinks its a good idea you still have the final say.  Just research everything and understand what you feel is right for you.  You may find after researching it that you no longer really like the thought of surgery and will squash that pesky thought from creeping back into your mind.

Total Colectomy with End Ileostomy May 27th, 2008


MitzMN
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Date Joined Feb 2007
Total Posts : 624
   Posted 8/10/2008 1:12 PM (GMT -6)   
I can see both sides of this dilemma. (Big help, eh?)

Let me say that surgery is not always without its complications, either. First of all, you can die from surgery. Second of all, not everyone has a spectacular outcome from surgery. My mother has a J-pouch, and for the most part, it's good. She's now 77 and she had her surgery in her early 50s. She does have pouchitis now and then, and has to use canasa suppositories daily to try to keep that under control. She's had a stricture issue, too, in the rectum. It's definitely better than a flare, but not as good as how I do on the Azathioprine. Even when her pouchitis is completely under control, she still has 3-5 bowel movements a day; she has a few more when her pouchitis is acting up.

I think we all, when put on Azathiorprine, were alarmed with the potential side effects. I believe those side effects are more likely in folks who are taking Azathioprine for things like trying to prevent an organ rejection (in much higher dosages). So far, I haven't encountered anyone here who has developed lymphoma from Imuran/Aza, but of course, there's a risk with everything you put in your body. I'd be more concerned, frankly, about steroids.

Good luck with your decision-making. Only you can figure out what's right for you. I've been in (mostly) remission since going on Azathioprine for about seven years now, and I live a pretty darn near normal life because of it.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 8/10/2008 2:45 PM (GMT -6)   
London;I have flared on and off since initial diagnosis in 1995.I didn't have access to the information we have now,and although told it was incurable,didn't think anymore about it until my second flare in 1997.Since then it's been a rollercoaster ride that I'd rather not be on!

Comedy;Thanks for the input,I hope the surgery goes well for you.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?

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