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surgery at Mayo vs medication

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Ulcerative Colitis
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Posted 2/15/2015 3:26 PM (GMT 0)
hello all

just wondering if any of you thought about getting surgery at Mayo clinic instead of taking prednisone, 6mp and remicade.

comparing the possible side effects of both, it seems that surgery is less risky for me

When comparing where to get the surgery done, which I believe is the most important factor second to the surgeon you choose, I think Mayo clinic is better than cleveland clinic because of this study:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780072/table/t17043-3/?report=objectonly

The majority of those nightmare j pouch stories seem to come from Cleveland clinic cases.
Posted 2/15/2015 3:33 PM (GMT 0)
Hi fight, I think it also depends on your comfort level and confidence in your doctor.

Have you been to www.ihaveuc.com? Adam has lots of doctors and experiences their listed to read opinions.

What are you currently using/doing? I think you don't want to use steriods and all that which I totally respect.

Tough decision!
Posted 2/15/2015 3:40 PM (GMT 0)
Another consideration might have to be insurance. These places are likely to be out of network.
Posted 2/15/2015 3:41 PM (GMT 0)
Hey DMC!

Yeah ihaveuc.com is a pretty cool site, I see their videos on YouTube a lot.

Currently just using sfRowasa, orals 5-ASAs dont do much as my disease is very distal.

I don't want to use steroids because I do not want to lose my bone density, which I need to kick heavy bags. I found out that as I needed to regenerate other parts of my body, my colon's regeneration would be sacrificed.

I think the constant damage from the chronic inflammation and the constant healing takes a toll on the rest of my body, may that's why I'm so tired all the time?

I hope I could be like one of those really health j pouch people you hear about who never have pouchitis, take ZERO medications, eat anything they want, drink anything they want, have no pain and only go 4-7 times a day.

There's a chance that could happen with surgery.
Posted 2/15/2015 3:42 PM (GMT 0)
In December I was asking pretty much the same question. I'd been in a flare for over two years. The only thing that helped was a lot of Prednisone. Every time I tapered it was bad. I was eating crazy careful.

I posted on this forum and the ostomies forum asking why people had made the choices they'd made. I also looked at recovery time and even calculated the best time for surgery.

The advice given made me decide to give it more time and try more things.

And I'm BETTER!
No, not healed. But functional again.
I'm able to go out and do things without diapers.
I have to think about it to say where it hurts.
I sleep normalish. Not 24 hours a day curled in a ball. Not psycho and up 24/7 buying things on eBay, cleaning and making remodeling (demoing) lists.

Surgery may be down the road for me, but not yet.
I can live like this. And hopefully I will continue to improve.
Posted 2/15/2015 3:57 PM (GMT 0)
If you are ok with have a J pouch or even an ostomy than surgery is a good way to just get it over with. You seem to be aware of the shortfalls of surgery so I wont need to repeat them now.

Just be aware that the higher drugs are not really bad at all. Ive tried them all and had no side effects and their risks are small. I couldnt imagine doing surgery after just trying the weakest meds, but its your body so good luck!
Posted 2/15/2015 4:26 PM (GMT 0)
I tend to agree with marauder here, but totally respect your decision. But I just had a thought: will they do the surgery if you haven't exhausted all other options? They probably do, but just a thought.

I am sure you will figure it out but pls keep us posted. Also Marianne (bye bye UC) here is really nice! She prob a good resource!
Posted 2/15/2015 5:30 PM (GMT 0)

DMC2011 said...
I tend to agree with marauder here, but totally respect your decision. But I just had a thought: will they do the surgery if you haven't exhausted all other options? They probably do, but just a thought.

I am sure you will figure it out but pls keep us posted. Also Marianne (bye bye UC) here is really nice! She prob a good resource!

Oh ya, theyll do this kind of surgery any time since its not a risky one (i.e. living without your colon is apparently nbd).
Posted 2/15/2015 5:52 PM (GMT 0)
Yes, if you go to a surgeon he will say surgery, if you go to a naturopath he will say herbs, if you go to a GI he will say meds ladder. No wonder we are all confused. Gah!!!
Posted 2/15/2015 6:14 PM (GMT 0)
It's a personal choice, some choose surgery over the hardcore uc drugs. Others, like me, want to give all the treatments a shot before undergoing surgery. It's whatever you feel comfortable with.

The odds of adverse affect from 6mp or remicade is less than one percentage point (0.04 percent). Surgery has higher risks in the single digits (4 or 5 percent). Long-term usage of steroids is much more dangerous of course.
Posted 2/15/2015 8:33 PM (GMT 0)
I've also been considering surgery but after researching it, I'm not ready to risk the potential complications. I'm holding off for now.
Posted 2/15/2015 10:55 PM (GMT 0)
The meds scare me more than the surgery, the fear stems from the FACT that my ulcerative colitis was caused by numerous meds Rxd to me by a pill pushing mutilator "dermatologist" doc when I was a teenager. (doxy, cipro, amox, sulfa abx and generic accutane (Sotret, by the adulterated indian pharmaceutical Ranbaxy nonetheless))

http://www.justice.gov/opa/pr/generic-drug-manufacturer-ranbaxy-pleads-guilty-and-agrees-pay-500-million-resolve-false
Posted 2/16/2015 4:17 AM (GMT 0)

Marauder93 said...
couldnt imagine doing surgery after just trying the weakest meds, but its your body so good luck!

^

and do something your future self would thank you for smilewinkgrin
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