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Drugs vs Surgery

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Ulcerative Colitis
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Posted 9/12/2007 3:39 PM (GMT 0)
Ok, I have weird question.  Having just come from ANOTHER doctor appt and ANOTHER increase in dosage of medication I"m just wondering....

My son is on 6MP, Remicade, Prednisone, and Asacol in our attempt to seek remission.  With all the possible long term life altering side effects that are possible on these medication, I guess I'm wondering how surgery is worse.  I realize that it's a process and the recovery stage is complicated, but when it's all said and done aren't you normal again (no disease, no medicine, no long term health issues).  Am I oversimplifying this whole thing.  I'm so frustrated with the being up when it looks like something is working and then hitting bottom when you realize it's not.

Just wondering.  Thank!

Posted 9/12/2007 5:42 PM (GMT 0)
No, you are not over simplifying the drugs vs. surgery comparisons. Many of us who cannot seek remission had to start asking ourselves the same questions. As for myself, I started fearing long term consequenes of prednsione over my fear of surgery and surgery won out. I didn't even have the option of Remicade (which in retrospect I am grateful I never had to try) so it's very wise to look at how long your and your son are willing to try and reach a goal that might be unattainable. Everyone's patience with the process is different.

I can tell your from my experience that I have never regretted my surgery decision and am in the 95% of satisfied j-pouch recipients. You can meet more of us, even parents of children who have had the surgery, at www.j-pouch.org

I am normal again!

Sue
Posted 9/12/2007 5:49 PM (GMT 0)
I'd think long and hard before I'd make the irreversible decision to have surgery - especially for one so young. Surgery does "cure" ulcerative colitis, but there's always the possibility he's been misdiagnosed. After seven years with a diagnosis of UC, it's now looking like I might actually have Crohn's or there may be something else going on. My doc says a large percentage of IBD patients have their diagnosis switched in the first 5-7 years. It would be terrible to have the surgery only to discover you hadn't addressed the true problem.

When was your son diagnosed? Have you investigated other treatment options besides drugs and surgery?
Posted 9/12/2007 5:59 PM (GMT 0)

He was diagnosed in March '06.  His longest remission was about 2 months and that was when he was on 40mg of Prednisone.

We have tried Asacol, Rowasa, 6MP, Probiotics, and now Remicade.  He would like to go to college next fall, but it scares me to death to send him away and past experience has shown us that his flares tend to come with increased stress and I have to assume moving away from home and going off to college would be somewhat stressful.  It just scares me b/c at least now he's on our insurance and what's he going to do when he graduates.  I know it's stupid to look that far ahead and you just have to take it a day at a time, but it's all stuff I think about alot. 

Posted 9/12/2007 6:30 PM (GMT 0)
Surgery is a cure to UC and the only cure. There are variations of the surgery and in some cases patients end up with "cuffitis" UC of the rectal cuff. If the cuff is stripped (as it was in my case) the disease is gone and I am cured. No more meds nor illness.

Yes, some people's diagnosis changes after the fact. You could wait another 5-7 years before making a decision but at what cost? There are several people on the j-pouch board who had the surgery only later to discover that they had CD. All of them emphatically state they are glad they had the surgery in spite of the change in diagnosis and many of them were able to keep their j-pouches and manage their Crohn's.

It's not an easy decision to make and you and your son need to research the options. It's also a very personal decision.

Sue
Posted 9/12/2007 8:50 PM (GMT 0)
I'm at the same point, Lew... I have gone back on pred for the 3rd time, & have taken just about every UC med under the sun, & guess what? I'm still flaring horribly! And have been for the past year. I have 2 big appointments coming up- one with a top-notch GI doctor in Boston, the head of the IBD Dept. at Beth Israel Deaconess Medical Center, Harvard Professor, one of the top guys in the field. This appt. is for a 2nd opinion- my own GI doc recommended I go talk to him to see if he had any ideas. We've already discussed surgery. And my other big appt. is with a surgeon at the Lahey Clinic for a consult- to go over the surgeries available & discuss them. I'm really excited, to tell you the truth. I feel like I've been pumping meds into me for years to no avail. I don't want to wind up having to have surgery, & not being able to decide who does it, where it's done, & the actual surgical procedure. The rate of colon cancer goes thru the roof with every flare- you gotta figure these year long flares are not doing much good for that rate! And when you take into consideration the fact that about 40% of all UC sufferers wind up having to get surgery anyway, why wait until you are so sick that you absolutely have to get it done? I dunno... yes, it's a VERY hard decision. And a very personal one. But when all is said & done, after all the meds & the tests, & the complicating factors, I've found it to be an easier decision for me to make. Not that I've made it yet, but obviously I'm really leaning towards it. All this time wasted being sick could've been spent healing & dealing with my new body.

Posted 9/12/2007 11:58 PM (GMT 0)
I'm not going to repeat everything Sue said, but I was diagnosed with UC for 2 years and was very sick the entire time except for about 3 months. I decided what my tolerance was going to be for trying new things, and when I had tried everything I was willing to try I went to the OR.

Best decision of my life. I'm 25 now, turned 24 between surgeries. I guess that's young, but I would rather be young and healthy. My opinion.
Posted 9/13/2007 1:30 PM (GMT 0)
I was also diagnosed with UC and was extremely ill for a couple of years. During that time, my mother would ask me about surgery. I didn't even want to consider it. I started researching my condition and experimenting with various things that worked for other sufferers. I started learning how to manage my illness and have pretty much been in remission for several years. Began working out and got in better shape than I'd ever been. Got married this time last year and had a wonderful, normal honeymoon. I guess the course of IBD is pretty unpredictable. It is, indeed, a tough decision, but it's nice to hear there are folks that have had the surgery and have gone on to live full lives.
Posted 9/13/2007 1:57 PM (GMT 0)
I had my ileo surgery for UC when I was 10 years old. I turn 41 in October. Not once have I ever regretted having my surgery. It was the best decision my parents ever made for me.

Their biggest fear was that one day I would turn around and say to them 'Why did you let them do this to me?' I never have. My ileostomy gave me my life back. There is nothing I can't do now (except wear a bikini, but then this body was never meant for a bikini anyway). I go swimming regularly in summer, have travelled the world, been rock climbing, etc. I know ostomates who regularly scuba dive, crawl through caves, parachute, etc all without a problem.

Good luck in the decision making.
Posted 9/13/2007 4:28 PM (GMT 0)
I have found this thread to be particulary powerful in the honesty out out there for a very difficult decision. I find myself thinking along these lines. I am currently on prednisone again, and have so many side effects that the treatment, at times, feels worse than the disease. I recently started Remicade and have been on Imuran for about 6 weeks. I just started (again) tapering from the prednisone. While I hope that The Remicade/Imuran helps me to remain prednisone free, my history does not support this. So I aks myself, what if as I taper more I start flaring? Will I be so motivated to stop the flare that I will beg the MD for prednisone, or will I be able to just say enough is enough. I read about people's positive comments about the surgery, and there is a part of me that says enough is enough. If this does not work I cannot go back on prednisone. Intellectually I know that the surgery at that point would give me a quality of life that I am obviously not experiencing now. What quality am I having when I am filled with steroids, or even without steroids who knows what Remicade will do to me years down the road? If I am being honest, though, the thought of surgery scares me. Diseased or not, it is scary for me to think that my colon would need to be removed.  Also the pain and adjustments that need to be made after surgery scare me. As I said, intellectually, the thought of surgery sounds good to me-- no more meds, no more disease, but there is that part of me that gets frightened thinking about it. I guess I need to take one day at a time, but also try to think what I want my life to be like down the road.
Posted 9/13/2007 4:45 PM (GMT 0)

Thank you all for your thoughts and input.  I realize it's not even my decision, it's my sons, but at 17 you tend to look at immediate vs long term.  I see all the issues with medications, side effects, insurance, etc.  He just wants to feel better for as long as possible, go to college, find a wife and job, have kids and live happily ever after.  I also have the tendency to immediately go to the worst case scenario of what I'm ready b/c although they say the odds are small, that's what they said about getting this stupid disease.  I know it says that even after the surgery you will have 6-7 bms a day and I think that's still not great. Is it like with the disease where you have to find a bathroom immediately or do you have more control.  I know I overthink things, but it's really scary.  Thanks again for all the support. I don't know what I would do without this place.

Posted 9/13/2007 5:08 PM (GMT 0)
I hope I never have to make that decision. But if I do, I think that if it comes to the point where I cannot achieve remission or am unable to live my life b/c of the UC.....after exhausting every avenue I can, I think I would do it. Though it is a personal decision, especially where to draw the line and make the decision when to have it.

I was 11 when my Mom had her surgery and remember before her surgery everywhere we went she had to use the bathroom and would have accidents and we would have to turn around and go home and she had a really hard time living life. For her having the surgery helped her get her life back again and get control. She does not have the j-pouch, she has the ostomy (pouch is on the outside).
Posted 9/13/2007 8:16 PM (GMT 0)
Lew,

Frequency is higher but emptying a pouch is not in any way, shape or form, like emptying a colon/rectum. Most of the frequency occurs during a trip to the bathroom to urinate. I would venture to guess that know one counts how many times they pee during the day. The same is true for emptying a pouch. I honestly cannot tell you what my frequency is, I do know it is greater than 4X per day but it does not interfere with my life, either at work or out exercising. Emptying a pouch is very quick, as speedy as urinating so there are never prolonged periods of time on the toilet. If your son does contemplate surgery I recommend that he 1. visit the board at www.j-pouch.org and 2. find the most qualifed CR surgeon for the surgery. This can be a 7 hour procedure in the hands of a less experienced surgeon or a 1.5 hour operation in the hands of a surgeon who has done several thousand procedures.

Sue
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