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Looks like Surgery for me is inevitable

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Ulcerative Colitis
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Posted 9/8/2015 7:48 PM (GMT 0)
So I went to the doctor today and it looks like all the meds are not working for me. My mom & the doctor talked about surgery, but I'm going to get a second opinion. I'm scared of surgery. My next meeting is on the 30th, so I'll keep you guys updated.
Posted 9/8/2015 8:05 PM (GMT 0)
I might have read wrong but I thought you'd been in remission for 9 years? Pushing you to surgery over 1 flare seems a bit quick?
Posted 9/8/2015 8:23 PM (GMT 0)
Of course it's scary but if you really need to do it then it can be a huge blessing. I had j pouch surgery 5 years ago. I only wish I did it sooner. It's always good to get a second opinion. Best wishes!
Posted 9/8/2015 8:34 PM (GMT 0)
It is a big surgery but it has a high success rate and there are MANY advantages to look forward to. Definitely do your research and go with the most experienced j-pouch surgeon you can find, as it is a complicated procedure. There are also good blogs available written by people who have gone through the process. Best of luck!

Also, check out: http://ronnielee-fightingforit.blogspot.com/p/blog-page.html
Posted 9/8/2015 9:48 PM (GMT 0)
why not try a fecal transplant before such an important decision? or some ayurvedic medicines?
Posted 9/8/2015 10:04 PM (GMT 0)
I'd try IVIG/Ent first. You're smart to get a second opinion though. I hate that it comes to this. I'd be following but j-pouch is not an option for me.
Posted 9/8/2015 10:45 PM (GMT 0)
Nine year remissiion the one flare does not good reason for surgury make!!! Lots of issues for most people with surgury too, check out the boards. Only one or two people always here jumping in very quick to tell u how lovely it is.
Posted 9/9/2015 1:36 PM (GMT 0)
ToughKicker, did they find dysplasia (precancerous cells)? What uc medications are you currently on and what have you tried? I'd like a refresher on your case/history.

If it is your time for surgery, then what about it scares you? We have a few posters currently going through 2 or 3 step j-pouch surgeries and I am sure they'll be happy to answer about their experiences :-)
Posted 9/9/2015 5:27 PM (GMT 0)

Kevin Watson said...
I might have read wrong but I thought you'd been in remission for 9 years? Pushing you to surgery over 1 flare seems a bit quick?

I stop being in remission a couple of months ago, and I had two flare ups since then.
Posted 9/9/2015 5:44 PM (GMT 0)

iPoop said...
ToughKicker, did they find dysplasia (precancerous cells)? What uc medications are you currently on and what have you tried? I'd like a refresher on your case/history.

If it is your time for surgery, then what about it scares you? We have a few posters currently going through 2 or 3 step j-pouch surgeries and I am sure they'll be happy to answer about their experiences :-)

I don't think they found anything.


I don't remember all the meds I've taken so here goes:

The 1st one I don't remember but it only lasted 2 months

I took Imauran for 8 years or so. (Dr. took me off of that

I took Colozal(sp?) for 8 years and they stop making it

I took Apriso(sp?) for a year and the Dr. took me off of it after my last scope.

I was on Remicade for like 6 months or so and they don't that is working.

I'm scared of the surgery being botched. My best friend was in the hospital getting a procedure, they put him to sleep & he didn't wake up.
Posted 9/9/2015 6:59 PM (GMT 0)
Everyone is scared of surgery. The most important thing is to go to a very experienced surgeon. You definitely don't want to go to someone who has done 50 of these procedures, you want someone who has done 100s or 1000s. Ask questions. Ask about complications, recovery time, what you can expect. I have found that my surgery went better than I expected. I also nearly died from UC drugs, compared to that, surgery was a breeze...

You have other medical options but i think a consult is good for anyone who has lost response to biologics. At that point, the options are very limited and almost non-existent. You have to be realistic about that, sorry to say it. :(

I don't see how you could have 2 flare ups in a couple months. Usually a flare up lasts months, not days. I am not sure whether you had a flare up or mild symptoms based on the short time frame between flare ups. Mild symptoms do not usually require surgery.
Posted 9/9/2015 7:00 PM (GMT 0)
[quote]I'm scared of the surgery being botched. My best friend was in the hospital getting a procedure, they put him to sleep & he didn't wake up.[quote]

that's horrible....so sorry. I think we all worry about that scenario when we go in for any procedure that requires anesthesia. But that is very rare. If you have to go in for surgery, put that out of your head. You'll be fine. Best wishes to you.
Posted 9/9/2015 8:41 PM (GMT 0)
A fear of general anesthesia is not rare - studies by psychiatrists reveal that about 30% of people are more afraid of general anesthesia than the operation itself (Levenson 2007).

Let's throw some statistics up to see the actual risks of death associated with anesthesia itself and large bowel surgery:

Chance of dying as a result of general anesthesia alone = somewhat less than 11-16 deaths per 100,000 persons, depending upon general health of the persons (0.01-0.016%) (Lienhart 2006, Arbous 2001).

Chance of dying due to complications resulting from the operation of removing the large bowel for cancer = 800 to 5000 deaths per 100,000 operations, depending upon health and technique of operation (0.8-5.0%) (Nelson-2006).

Source: www.anesthesiaweb.org/risk.php
Posted 9/9/2015 8:50 PM (GMT 0)

iPoop said...
A fear of general anesthesia is not rare - studies by psychiatrists reveal that about 30% of people are more afraid of general anesthesia than the operation itself (Levenson 2007)

I wasn't referring to the fear of anesthesia being rare but to actually dying on the operating table as being rare.
Posted 9/9/2015 9:20 PM (GMT 0)
Marianne, no worries, as I was not referencing you or anyone else specifically. Rather, I wanted to throw some statistics up there of the actual risks.
Posted 9/10/2015 12:00 PM (GMT 0)
Tough Kicker: please try IVIG first. Pretty awesome stuff ( if you can get the right dose.)
Posted 9/10/2015 1:38 PM (GMT 0)
I had a 10 year remission followed by a flare that would not respond to medication, diet, or alternative treatments. Yes, this can happen. I opted for surgery, that was 14 years ago. I have never regretted the decision. Drugs like Remicade, Humira, and Entecort were not developed back then and it's just as well. I take no medications since surgery and have a very physically active life.

Sue
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