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I was diagnosed with UC in Feb 2007.  Ive tried about everthing out there (prednisone, mesalamine, imuran, humira, remicade, plus a bunch of alternative stuff).  The only thing that has helped is prednisone... Anyway, Im really thinking about surgery, but Im a bit nervous about it.  I have a surgical consultation coming up in the next couple of weeks, and I am trying to think of questions to ask my doctor, as far as his personal statistics on surgery, etc.  Does anyone have any suggestions?  Any help would be great!

 Reply posted for randalljohnson.

Hey Randall,

 Reply posted for randalljohnson.

I had mine done in three surgeries and it was the best thing I ever did but I did not really have a choice. Prior to surgery I was on prednisone, imuran and for a week cycllsporine and my colon still perforated three times.  It is truly a nasty disease and a lot of these medications simply mask the problem.  It is scary going through it and not an easy recovery but I now have my life back and free of medications. You deal with problems and have questions along the way but the doctors and nurses will get you through them. 

 Reply posted for cooltampachic.

Hi, Betty.  I'm facing surgery after putting up with UC for about 40 years--nothing works any more.  Your comments were very helpful and encouraging.

 Reply posted for cooltampachic.

4. What percentage of his/her patients developed future complications from surgery (with either one of the methods mentioned above)? The sugeron may provide statistical, general numbers. You want his/her patient statistic too.

5. Ask how will the incision be? Vertical (up and down from top of belly button down) or horizontally (at the bikini line - less invasive and less scarring)? Also, how many has he/she done with either one?

6. Ask them to provide you with literature pertaining to the surgery and the post op including food intake, ileostomy care, etc? Understanding what your body will go through and how you must care for it for the first few weeks will not only prepare you mentally but also emotionally and ease your concerns.

These are just some questions to help you get started. I hope my words of advice helped. Please do your research and make an informed decision with no regrets. Always keep in mind that you have to do what's in your best interest. If you do, everything else will fall into place. Good luck and I wish you well.

Thanks,

Betty

 Reply posted for cooltampachic.

Continued...

As far as complications goes, there's complications with every surgery you have whether it's cosmetic, elective or emergency. Don't let that steer you away. I'm sure that when you got on Remicade, they gave you a laundry list of side effects including possible cancer and death. Did that deter you from trying the drug, especially, if it was an option to your disease? I had a tougher time deciding to try Remicade for all its side effects than the surgery. That's the risk and decision you'll have to make for yourself and your health. I know you want to hold on to your colon as long as you can but if its diseased and uncontrollable by drugs or alternative holistic methods and you're at a higher risk for colon cancer, then why not research surgery as a possible cure!

As far a surgerical consulation goes, ask your sugeron:

1. Whether or not there's a possibility that your condition is Crohn's, not UC. Because if they determine, while in surgery, that its Crohn's, you'll have a permanent ileostomy.

2. Whether he/she will do the surgery laproscopic or open. Laproscopic will cut the recovery by half and will be much less pain. Plus less scarring.

3. How many laproscopic surgeries has he/she done vs. open? And what is their success rate with each method, which means what, if any, complications did he/she have with each method during surgery?

To be continued again..wow!

 Reply posted for randalljohnson.

Hi Randal,

I had UC for 8yrs and recently had surgery. I'm scheduled for the 2nd surgery for the reconnect August 12th. I've struggled with UC for very long and its always been an up hill battle. I've tried all medications out there through the years (prednisone, remicade, imuran, asacol, etc..) and they always seem to work but as the years progressed the dosages increased or the meds stopped working altogether. I opted for surgery for a number of reasons but primarily because my body had become dependent to these drugs and I no longer saw results or relief. I didn't want to compromise my body or immune system any longer by pumping more toxins into my body. These drugs did more harm than good through the years, especially, prednisone (so be careful).  

As far as the surgery goes, I'm 9 weeks post op and I feel fantastic. I feel much better than I did before with a diseased colon. I'm able to eat what I want when I want. The first 4-5 weeks were brutal I'm not going to sugar coat it for you but you get over it. I had tons of pain but pain meds helped tremendously. Before you know it, the pain subsides and you start getting your strength back. The recovery went by so fast that I can't believe it's been only 9 weeks since the surgery and I'm already going for the 2nd. It really was my last resort and I feel confident that I made the right decision because I had tried all options out there.

To be continued....ran out of room.

Betty

 Reply posted for randalljohnson.

Have you tried:

1) Mutaflor or Symbioflor - Probiotic Ecoli preparations from Germany that are effective for UC.

2) Whipworms - Microscopic worms good for Crohn's UC. There are two U.S sources for this.

3) Specific Carbohydrate Diet

Surgery may cause more problems than it does good, be careful.

 Reply posted for randalljohnson.

I don't really have much advice on surgery. I have seen in my profession (RN) that more men seem to have surgery sooner than women. Not sure why. I know someone now who is scheduling surgerywho has had UC, and now diagnosed with celiac. He is optomistic about it and excited. Surgery for me would be a very last route. As you know with surgery there are multiple risks. Infection primarily, fistulas, leaking, irreversable anastamosis, and symptoms may reappear or be unchanged depending on how your surgery went and if there were any complications when they get in there. When you are opened up for surgery doctors may see something they did not expect with your anatomy and have to work around it. Please be sure your surgeon talks with you extensively regarding what the plan is, what the outcome will be and what all your options are before surgery. Surgery has been a lifesaver for many many people. There are also people that have had not so good stories to tell.

What procedure are you thinking of having done?

My biggest concern with surgery is that if it doesn't work, then where would I be?  What would be next? More surgery?

I would get 2 different opinions before I ever had surgery for any reason other than a life threatening emergency.

Good luck in your decision and let me know what you choose.

Liz