surgry for ulcertive colitis

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gator1
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Date Joined Dec 2007
Total Posts : 13
   Posted 1/5/2009 4:24 PM (GMT -6)   
After about 7 years of all the medicines including remicade I still struggle with flare ups. I live a somewhat normal life with rough mornings, but I still get blood and mucous in my stools. At what point should I have surgery?

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/5/2009 4:43 PM (GMT -6)   
Depends on so many factors...for example, your age: I would not wish another 40 or 50 years or more of constant or regular flares on anyone! And urgency is the most unacceptable symptom to deal with, in my view.
I sorta wish I had surgery when I had a different kind of job (and was part of a team, instead of the only person doing my job), early in my career.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 1/5/2009 4:52 PM (GMT -6)   
Good question. You function but are taking Remicade and not entirely asymptommatic. It's probably a good time to broach this with your GI and possibly consult with a CR surgeon. It doesn't mean you have to make any decisions but you will have answers in the event you have to make a 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


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/5/2009 4:54 PM (GMT -6)   
You should consider surgery when the symptoms affect your life more than you're willing to tolerate and you've tried enough medical remedies to feel you've given them a fair chance. That could be three months after diagnosis or three decades, depending on your symptoms and tolerance. In the meantime, be sure to get your regular colonoscopies because if you start to develop dysplasia, you need to factor that into the equation also.
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.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


gator1
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 1/5/2009 7:57 PM (GMT -6)   
Thanks for advice, I have talked to my doctor about surgery and he said that until the colitis has spread to the whole colon I should avoid surgery. I have had 6 colonscopies in the past 7 years and am always in a flare. Prednisone helps then back to flare. My doctor sais that it is a uncomfortable disease and I will never be normal, but I wonder if I am going to have long term problems from always having blood and mucous in stool.

GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 1/5/2009 8:26 PM (GMT -6)   
If your sick and tired of being sick and tired from UC and really considering the surgery, then it is probably time to go the surgery route. GI doctors are trained to save the colon at all costs and make surgery the last choice. I think taking the drugs for UC long term are worse than UC. I just don't think they know what we go through and they are happy that you eventually die from liver and kidney failure 30 years from now from the UC drugs rather than dying from UC, but at least you got to keep your defective colon the whole time as a consolation prize!!! Just nuts.

I learned that a lot of doctors and even nurses are closed minded and cannot think outside the box or connect the dots, they just learn what they read in medical books but don't truly understand the whole ramifications of all of the diseases the read about. The hard part is finding a doctor that can think outside the box and connect the dots and are just not there for the money. I got rid of my first GI specialist - supposedly the best in the area - because he couldn't think outside the box.

The one thing he was right about is that life is never normal after UC, but you can get it as close as you can. If you go the surgery route, you basically have two choices, permanent ileostomy or j-pouch.

I had an ileostomy for 9 months and felt 100% normal 3 months after they took my defective colon out. I was off all meds, eat and drink everything and was able to sleep 8 hours a night consistently. The only thing was changing the bag and having it hanging there all the time. Never had leaks or anything, but something different, but truly felt 100% normal and didn't really have any limitations activity wise. Some people have psychological issues with the bag and cannot stand it whether they have issues with it or not, but I never that trouble.

I'm currently 6 weeks post op from the J-pouch surgery. This surgery was a little tough and recovery is slow. The pouch is working good but I'm experiencing a lot of butt burn currently. They say this goes away with time as the pouch gets bigger and you go to the bathroom less. But now I'm watching my foods again, keeping them bland and drinking only water. I'm still off all medicines and hope to keep it that way. I guess I'll just have to wait and see what happens next year and hopefully the butt burn thing goes away. I would hate to live life constantly worrying about that.

If worst comes to worst, I would go back to a permanent ileostomy. Either way, the surgery route is much more better than living with UC and being dependent on drugs.

Hope this helps.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
11/20/2008 - J-Pouch and ileostomy Reversal Surgery - finally normal again!!!
"When life gives you lemons...make lemonade"


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 1/5/2009 10:00 PM (GMT -6)   
At what point do you have surgery is really the MILLION dollar question, and it took me 3 years to find out for myself how to answer. I can't tell you when you'll know, but you, your family and doctors will decide when and if the time is for you. Health Talk-Colitis has two wonderful webcasts about making the surgery decision. I'll put the link to my blog below and that will link you to the health talk webcasts, the one on colitis surgery and why you should wait to long is excellent b/c the surgeon really discusses how they weigh professionally if someone should have the surgery or not.

http://www.jpouch.net/2009/01/04/webcast-which-meds-or-surgery-can-help/
Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/5/2009 10:22 PM (GMT -6)   
it took me 8 years of being sick and hospital trips and missing life to decide to do it, wish now i would have doen it the first day i saw blood!
The time to do it is, like has been said, when you are not able to live your life and the meds and such are not helping. If you are pred dependent it is also time.
You need a new GI, casue it's your choice. Mine talked me into trying remicade the first time i went in for surgery, wish i would not have. It worked for about 2 months, when i went back he still wasn't really keen on it but i said "either you find me someone to take this thing out, or i will take it out myself!" I was actually at the point where i secretly wised i would get toxic mega colon so that i wouldn't have a choice. I know, thats sick, lol.
But anywa, you can always talk to a surgeon and an ET nurse and get some more info.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/6/2009 9:27 AM (GMT -6)   
The time is right when you decide the time is right. I had a GI that was opposed to jpouch surgery. Thankfully I took over my care and became my best advocate. Like many others I was worried about the long term side effects of UC meds and that was long before the introduction of Remicade. This surgery is usually elective, meaning that you can ask for it at any time. Quality of life is key. I could not plan travel or social commitments because of UC. That became my #1 quality of life issue. I opted for surgery and have never regretted it. I haven't had to cancel a vacation or a social commitment in 7 years. I haven't taken any meds in 7 years either (with the brief exception of ADs prescribed for UC depression). Life is very good post surgery, not perfect but predicatable.

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


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/6/2009 1:48 PM (GMT -6)   
I still am going back and forth on whether or not to have surgery. On the very few "good" days that I have, it makes me not want to go through with surgery, but I've been feeling so terrible lately and the idea of waking up and feeling the complete absence of disease sounds so wonderful, because right now it feels like my whole body is infected and withering away. I know it's probably time for me but I'm still scared sometimes when I really start to think of it, so I'm trying Remicade first and giving that a little bit of time before I make the big decision.
Everyone gave great advice, and they're all the reason I've ever even considered surgery in the first place and it sounds like a much more realistic option now than it ever did before. But the most important thing is that YOU are ready for it and you do all the research you can and go in comfortable with your decision. And as others said, don't let your GI dictate when you should have surgery- if you feel you're ready, then that's all that should matter.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/6/2009 2:08 PM (GMT -6)   
My CR doc who looks after my fissure said "they" would not allow me to have surgery until I was really bad...My GI doc also seemed quite negative toward surgery, I already have pancolits and want to know who's decision is it really...mine, the docs or my insurance company? I'd also like to know once the colon is gone does that mean if one has lactose intolerace then that stops too or is that stomach related? Also what about if you have IBS...does surgery eliminate that too? How does one go swimming with a bag?
Thanks
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days

Post Edited (bbc) : 1/6/2009 12:23:23 PM (GMT-7)


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/5/2009 4:15 AM (GMT -6)   

Hi GISguy

I am a new member to this forum. I am 45 years old and had UC since 1989. I had the J pouch surgery in 2005, but the same did not do well and have been facing lots of problems and complications since then. Anyway, without boring you with my problems, I would like to deal with your issue of butt burns or what we call anal irritation. This happens because your colon has been removed and the enzymes reach directly to your rectum or J pouch and out through opening. This causes irritation. Lots of foods like citrus, bananas do cause more irritation. The best option for you is to apply some gel. I have used all gels and gold creams. Now I do use Metrogyl Gel. It is very effective and much economical compared to other substitutes. Use it before and after your motions. Keep the anal canal dry with tissue paper or cloth. Do not apply soap to the anal canal. Keep it dry and clean. This butt burns do remain for quite some time after the surgery, may be over 5 months. After that these flare up due to wrong intake of food. Chew your food properly to avoid obstructions. Chew everybite you take for at least 32 times to grind it properly. Avoid seeds. They also cause irritation. Avoid spicy food. As I am from India I do use Neem leaves boiled in water over the affected area.

Cheers. Wish you speedy recovery.

 

 


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 2/5/2009 11:10 AM (GMT -6)   
Psa, come to NYC and Mt. Sinai hospital. I'm sure that they can improve on your surgery.

I do best when I take a daily dose or two of immodium. After j-pouch surgery, it's important to drink max fluids daily. You no longer have a large intestine to absorb your fluids.

Megansmom
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/5/2009 11:23 AM (GMT -6)   
bbc - My daughter is 18 and just had the 1st step surgery. She was diagnosed in August 07 with Severe UC. Stopped responding to meds. She wasn't able to have dairy prior to the surgery everything was lactose free. Now she is able to have dairy. She is loving ice cream and milk.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/5/2009 4:30 PM (GMT -6)   
some people get rid of their lactose intolernance and others dont, it really depends on whether it was UC related or not. Some people find that they weren't actually lactose intolerant it was just something that made them flare.

If you have a bag you go swimming just like you go swimming now, only you dont have to figure out where the bathroom is, lol.
I just tape mine up on itself so that it doesnt hang down, and go! then when you get out you just dry it off either with the hair dryer or a towel or let it air dry.

YOU decide when you want surgery, GIs are usually against it, except in extreme cases, but you have the right to see a surgeon, just tell you GI you want a referall and if they wont give you one, get another GI.

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/6/2009 12:43 AM (GMT -6)   
malachy72 said...
Psa, come to NYC and Mt. Sinai hospital. I'm sure that they can improve on your surgery.

I do best when I take a daily dose or two of immodium. After j-pouch surgery, it's important to drink max fluids daily. You no longer have a large intestine to absorb your fluids.
Thanks so much Malachy for your kind suggestion. Indeed it is heartening to find helpful people on this forum. However, my complications are such that all the doctors in India have raised their hands and given up. I have a big incisional hernia as during the first stage my incision did not heal - the tissues did not form for over 5 months and it remained open. In between there were lots of complications like food obstructions, pouch reaction, some clotting/pus formation inside abdomin. In the interregnum I had this incisional hernia which is like an expecting mother. My waist line grows bigger day by day and from 34 has crossed to 41. Ha Ha ha. Throwing my weight around. Anyway somehow they did operate me for second stage and joined the ileo and made the J pouch operational in March 2006. I thought my problems were over, but just after seven days of surgery, when I went back home, my intestine burst; the ileo which they had joined back burst open and so did the stiches and the feaces started flowing from the abdominal wall. Anyway, somehow that got resolved and then the worst came over. I had big abscesses on my butts (left, right and center) in September 2006 which are still lasting and had lots of further invasive surgeries. Now since Jan 2007 I have horse shoe fistulas which were operated upon and fistuloctomy was done. But no respite. All the doctors have said that nothing can be done and I have to live with the pain as the fistula is communicating with J pouch and has perforated it and any action to repair would further damage.
So that is life. All medicines, remicade, medicated thread, homoepathic, ayurvedic have failed and still my will power is pulling me along. They suspected it to be TB of rectal wall and then crohn's but the biopsy did not show that. Fistrulas get filled up every fortnight. Anyway thanks for your help. I would get in touch with the Centre recommended by you. Thanks so much again.
 
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