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surgery - why not?

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Posted 1/30/2012 1:34 PM (GMT 0)
I know I'm still new to all of this, but I'm trying to wrap my head around years of immunosuppressants vs surgery. Can someone explain why more people don't have colectomies and the like more frequently? Does removing the diseased tissue "cure" it, or is it more complicated than that? Is it a matter of cost? I'm really curious as to how you reach the decision to have surgery vs make the decision to try everything out there pharmaceutically. Is it always a last-resort, or do people ever turn to surgery sooner? I just can't seem to find much information.
Posted 1/30/2012 2:06 PM (GMT 0)
The vast majority of surgery candidates don't opt for surgery just to stop taking meds. They opt for surgery when either the meds stop working, they are prednisone dependent, or their quality of life is low. I'm one who did opt for surgery for those reasons. I consider myself cured. I no longer have UC or any UC related problems and take no meds, and of course, eat what I want.

Sue
Posted 1/30/2012 2:10 PM (GMT 0)

suebear said...
The vast majority of surgery candidates don't opt for surgery just to stop taking meds. They opt for surgery when either the meds stop working, they are prednisone dependent, or their quality of life is low. I'm one who did opt for surgery for those reasons. I consider myself cured. I no longer have UC or any UC related problems and take no meds, and of course, eat what I want.

Sue

 

Hey Sue, I talked with my GI and she mentioned that to have a Jpouch, they must keep the rectum or (part of it ? ) If that is the case, UC is still there in that remaining part. Did you have your rectum removed somehow?

Posted 1/30/2012 2:13 PM (GMT 0)
Lots of people take mesalamine which is not an immunosuppressant.
Here is info from medicinenet.com:

GENERIC NAME: mesalamine (5-aminosalicylic acid)
BRAND NAMES: Pentasa, Rowasa, Asacol, Lialda, Canasa

DRUG CLASS AND MECHANISM: Mesalamine is a drug used for treating ulcerative colitis. The exact mechanism of mesalamine is not known but is believed to be by reducing inflammation in the colon. Ulcerative colitis and other inflammatory diseases cause excessive production of chemicals, for example, prostaglandins, that produce inflammation in the colon. Prostaglandins are produced by the enzymes, cyclooxygenase and lipoxygenase. These enzymes are over-active in individuals with ulcerative colitis. Mesalamine may work by blocking the activity of cyclooxygenase and lipoxygenase, thereby, reducing the production of prostaglandins. Reduced production of prostaglandins decreases inflammation in the colon and the symptoms associated with ulcerative colitis. Available forms of mesalamine differ in their route of administration and how often they are administered. Mesalamine was approved by the FDA in December 1987.

From me:
If you want to know about the complications that can arise after removal of the colon, read posts on the Ostomies Forum.
Some people are suffering from unexplained pain years after surgery. Some experience frequents readmissions to the hospital. Some have succcessful j-pouch surgery and some end up with an ostomy bag for life.
This process is NOT reversible.

In my opinion, surgery should be the last option after all others have been exhausted.
Posted 1/30/2012 2:14 PM (GMT 0)
Surgery why not?
read this:
http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show.html

" The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology.

Indeed, colectomy wasn't the end of the story for the majority of ulcerative colitis patients who underwent the procedure in Olmsted County, Minn., during 1940-2001. The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."
Posted 1/30/2012 2:30 PM (GMT 0)
Very interesting, thank you! I cannot tolerate masalamines, and I'm still very young, breastfeeding and plan to have several more children/c-sections. My GI is telling me that I need to go the immunosuppressant route, but I think I'm going to start exploring alternative therapies. I'm going to make an appt to see my osteopath this week and see what comes of it. I have to see my GI today, and I'm sort of dreading it. He doesn't seem to listen to anything that isn't going to net him big rewards...
Posted 1/30/2012 2:54 PM (GMT 0)
immunosuppressants are not really that bad. I've been on Imuran for 8 years now, no side effects of issues whatsoever.
You must have regular bloodwork, but I live a very active life, I'm a competitive cyclist, skier and many other things.
My doc has me on the lowest dose possible and Imuran has been around since the 50's.
Posted 1/30/2012 2:55 PM (GMT 0)
Somedude,

They leave about 1-2cm of rectal tissue to maintain continence. In my case that rectal tissue was stripped of UC cells so, in effect, I don't have any UC cells left.

Sue
Posted 1/30/2012 2:56 PM (GMT 0)
If you are interested in alternatives, I would start wilth fecal transplant, LDN and SCD diet. See what you're comfortable with and willing to try. I don't know, for example, if you can breastfeed on LDN. So, you'll have to run it by your doc if you decide to try. But there are countless possibilities and it can be quite overwhelming. These three in my opinion are the ones that more people have success with (we've done all and no success yet though...)
Posted 1/30/2012 3:18 PM (GMT 0)
IMO, if your doctor doesn't want to hear what you have to say or want unless it " nets him big rewards", I would be looking for another doctor.
Posted 1/30/2012 4:13 PM (GMT 0)
I chose surgery because I was steroid dependent. Even if immunosuppressants did work for me I think I still would of ended up opting for surgery. People don't realize how toxic those drugs are for your body. I rather not have a colon than not have an immune system. I consider myself cured of UC. My life does not revolve around the toilet anymore. I currently have the bag and would choose to live with it over UC any day. I am eventually getting the J-pouch though. The only regret people have is that they did not get it done sooner.
Posted 1/30/2012 5:38 PM (GMT 0)
bostwis1, as I said, I've been on imuran for over 8 years!
I still have my colon, a working immune system, and a great life.
The toxicity of the drugs is minimized by the lowest dose possible.
I know different things work for different people, but what youre saying about immunosuppressants is simply not true, and I am living proof of that.
Posted 1/30/2012 5:59 PM (GMT 0)
I opted for 6mp over surgery because I, probably irrationally, believe that some day there may be a cure for my case of UC and I'd hate to remove a vital organ when maybe someday I will be healed. I know it's silly to think this way but I have to remain hopeful. Since I am feeling great lately, being on the immunosupressant isn't such a huge deal for me. I take a half a pill before bed and I don't have any side effects. I think that's a better option than surgery at this point because I don't want to wear a bag and buy ostomy supplies, get up in the night to empty... It's not all said and done with surgery. There are challenges, sometimes more than you had with UC, it's not common but it's possible. If I were steroid dependent or having adverse reaction to the medication, I would have surgery. The struggle would be worth it to get off prednisone, that's one thing I know for sure!
Posted 1/30/2012 6:13 PM (GMT 0)

notsosicklygirl said...
I opted for 6mp over surgery because I, probably irrationally, believe that some day there may be a cure for my case of UC and I'd hate to remove a vital organ when maybe someday I will be healed. I know it's silly to think this way but I have to remain hopeful. Since I am feeling great lately, being on the immunosupressant isn't such a huge deal for me. I take a half a pill before bed and I don't have any side effects. I think that's a better option than surgery at this point because I don't want to wear a bag and buy ostomy supplies, get up in the night to empty... It's not all said and done with surgery. There are challenges, sometimes more than you had with UC, it's not common but it's possible. If I were steroid dependent or having adverse reaction to the medication, I would have surgery. The struggle would be worth it to get off prednisone, that's one thing I know for sure!

 

Correct. There will be a cure, unfortunatly I don't think you or I will be alive to see it. Like they said in the Matrix, everything has a beginning and it has an end, just like this disease. It spawned in the depths of hell, it will return there eventually.

Posted 1/30/2012 6:29 PM (GMT 0)
I personally don't ever want to go the surgery route because I'm terrified of complications. The surgery is not reversible, you're stuck with no colon for the rest of your life and I can't help but feel like removal of the colon, barring an urgent need, isn't the answer to this disease.
Posted 1/30/2012 7:21 PM (GMT 0)
wmdcookies, have you attempted any dietary/lifestyle changes?
Posted 1/30/2012 9:25 PM (GMT 0)
notsosicklygirl

There's nothing irrational about hoping for a cure.

I feel the same way and am holding off even with the possible threat of cancer. (Pre-cancerous cells were found in my colon.)
Have started LDN with the possibility it will assist in halting the progression toward cancer. Also doing everything I can to reduce inflammation.

Hang in there, girl :-)
Posted 1/30/2012 9:39 PM (GMT 0)
     Everyone who has this disease is different.  Certain meds work for some people and don't work for others.

      I mentioned once before, when first diagnosed, the last thing on one's mind is..."Oh, I just better go out and have surgery so I can be cured." 

     Surgery should be, and I believe in most cases is, the last resort.  Let's face it...surgery to remove a major organ is scary...and that is putting it mildly.

     I opted for surgery after suffering with UP for twelve years, running through the gamut of meds (6MP, Remicade and Humira) and becoming prednisone dependent.  Prednisone gave me osteoporosis, uncontrolled high blood pressure and type 2 diabetes.  I took anywhere from 17-25 pills daily plus rectal meds.  I was NOT getting better.  If the disease wasn't gonna kill me those meds (especially the prednisone) sure would.  My surgeon would not do a j-pouch on me because he considered me too high a risk.  I was also 64 yrs of age and very sick.

     Surgery gave me my life back.  I will forever have osteoporosis, but my blood pressure is very much under control with only 1 pill a day and I no longer have diabetes.  Surgery gave me my life back.

Posted 1/30/2012 11:35 PM (GMT 0)
if youre young the meds arent that bad as long as the blood test come back normal every time. if youre white blood cell count ect is in the normal range then you are at very little risk for side effects. the down side to the meds get way too over blown
Posted 1/30/2012 11:49 PM (GMT 0)
People do not want to opt for surgery mainly because it's terrifying. I know I was scared out of my mind facing surgery. But once you get thru it it is life changing. I can't imagine going on like I was with UC and taking all those nasty drugs. I wish I had done my j pouch surgery a lot sooner. It gave me my life back!
Posted 1/31/2012 2:02 AM (GMT 0)
When you finish breast feeding lokk at if you can get your UC into remission with diet and other help that is more natural, you are young and it must seem like the "end of the world" as it is a very unkind disease. But don't give into surgery until you have tried other things or at least seen a few different GI's surgery is final if they remove your colon. The you have no options, keep your options open andit may take a few months to get into remission. I am very lucky and got into remission via diet and help from a naturopath. But some of the things I take that are herbal are not for breast feeding mothers, but 7 weeks after sticking rigidly to a diet and taking supplements/natural remedies I was in remission and am still in remission that was Oct/Nov 2011. Their are people on here who have enjoyed remission for 8 to 12 years and some even more. Life changes constantly dont give into surgery so easily. Some decisions need alot of thinking and having all the fact the good, the bad and the ugly.

mum of 3
Posted 1/31/2012 3:09 AM (GMT 0)
i don't see that immunosuppressants are that terrible. i don't really have symptoms from them. i got the worst symptoms of my life from lialda and prednisone and they aren't even supposed to be very damaging. surgery is definitely last resort because organs are supposed to be removed from your body. we were made to have them and we should keep them as long as we can! obviously, if your entire colon is full of polyps that are pre-cancerous, you gotta get that thing outta there. but if you are full of inflammation and ulcers (like i was), a medication can fix it.
Posted 1/31/2012 4:00 AM (GMT 0)
Wmdcookes-now that I've had surgery, I can't figure out why everyone doesn't just do it. If it had ever been even mentioned to me earlier in my life I would have done it then. I didn't try all the meds, I only tried a few. I got tired of trying things that had side effects or waitng for the other shoe to fall when something did work. I didn't try diet change, that seemed like letting uc take over, taking my foods away from me. When it occured to me thatsurgery was out there I went to the gi and I said I want this colon out! He talked me into trying remi, it failed, so I wasted 8 more months on top of the 7 years id already lost. I finally went and said take it out or I will. I was serious. So I went to a surgeon I chose a permanet ileo, the dreaded bag, it seemed the best choice for me. So april 17th, 2007, I took my life back! I beat uc and I kicked my useless colon out! I wish I had done it 8 years earlier when I first got sick and not wasted so much time.. I'm almost 5 years out from surgery and still love it! Yep there can be complications, and I knew that. My mind set was I knew I was miserable with uc I knew I hated my life. I had read the good and bad of after surgery and I thought I might hate it, but I knew I hated life now, so I took a chance.
Surgery isn't for everyone, some people choose to keep their colons, some people are in remission and don't need it. But you don't have to try everything, you don't have to wait years before you do it, and you aren't giving up if you choose surgery!
Good luck!
Posted 1/31/2012 11:54 AM (GMT 0)
Bananagirl,
Medication cannot fix everyone....I'm proof of that.
Posted 1/31/2012 12:51 PM (GMT 0)
wmdcookes,

I agree with BeatUC:

" The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology."

If you can't tolerate mesalamines, there are other options:

LDN works great, slippery elm powder, L-Glutamine powder, and then there's diet modifications as well. The key to this disease (and actually all disease) is getting the inflammation under control and work towards maintaining an anti-inflammatory lifestyle, diet, etc...

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