New here... Looking for a Boston colorectal surgeon

Welcome dietcoke! It's a big step, and it is definitely overwhelming at first, but you'll catch on. Ask away!

I had my surgery last year with Pat Sylla at MGH, and she's awesome. She specializes in laproscopic surgery, so I just have four tiny scars. I did have some complications, but I don't blame her for them; I was very sick and on a lot of prednisone going into the surgery, and stuff happens. She came in at 10:30 pm to drain an abscess that I had a week after surgery because she didn't want me to wait until the morning.

It's also important to get a good nurse -- mine is Kerri, who works with Pat, and she is also awesome.

It sounds like your situation is similar to mine. The surgery is called proctocolectomy with permanent ileostomy ("procto" means rectum, so it's taking out your rectum and colon, and then creating an ileostomy).

Despite the complications, this surgery gave me my health back in a way I never anticipated having it back again. One of the best decisions I ever made....

It is hard to answer how long it took me to get back to "normal," as my normal had been being sick all the time, and I didn't go back to that.... so, in some ways, just a few days after surgery I felt better than I had in years (no running to the bathroom, etc). But of course, I did have to recover from the surgery, and I'd been very sick. A lot of people said it took 6 weeks to really feel like themselves again, but it took me longer than that. Partly because I had to go in the hospital again for a few days after my abscess, and I was still on pred, etc. (and I had a blood clot and had to go on coumadin for 6 months). Hard to say.... but I did start walking around the block a few days after I got home (walking is a key to recovery) ... at first one lap with someone w/me, but in a few days by myself and more.... I live alone, and it was after about 2 months that I felt comfortable enough to move back home by myself.

I am totally comfortable w/the bag situation. People have different comfort levels, but I was ready, and it's nothing compared to how I was sick. There is a learning curve, and there were some mishaps at the beginning, but it's all very smooth now; I hardly think about it.

My take is that at most points in history and in many places in the world today, I would have been dead already.... so, I am just so grateful that smart, compassionate people become colo rectal surgeons and could not only make me not dead, but give me my health back. The bag is part of what enables that....

I have had some very minor skin issues. That's something else that varies between people, and I've been fairly lucky on that score.

All good questions, keep them coming as they occur to you....

Thanks another UC wife! Well I have three surgical consults, first one on Friday. I am a bit nervous, but thanks to this site I have my questions prepared.

Glad your husband is doing well... I hope the same will be true for me. Right now I just want to get the procedure done with already and start healing.

You're right in that I had to make a mental decision first. My doctor five years ago told me to have surgery and I cried like a baby and switched doctors. Now, five years later, many terrible medicines later, including cyclosporine and tysabri, among many others, I'm back in the same position.

Had to get my head around it first I guess. I just hope everything goes well and I can adjust...but I know I can and will have to I guess.

I was in the position in November - my doctor came in and asked me what I wanted to do. In my case, I never even got to Remicade; 12+ years of Imuran had been enough for me, and I was sick of the roller coaster ride and always waiting for a flare to hit. I just went to my GI's office yesterday and we talked about this. I told her I never wanted to see her face next to a hospital bed again, which is why I opted for the surgery . . . not just any surgery; I was so fed up I got the permanent ileo right off the bat! I didn't even want any nonsense with a failing j-pouch.

Wow, you tried the worms too. Did you have to pay for them yourself? I was getting ready to try the fecal transplant, but then I got really sick and my gi who was supportive (even eager) said it would be dangerous w/my immune system.

Otherwise, my list is slightly different but w/a lot of overlap --asacol, hydrocortisone enemas, 6 MP, remicade, humira, cimzia, flagyl, cipro, pred, and various diet things....

All I take now are vitamins.

Once you "wrap your head around it" the rest seems to fall into place and there is a kind of peaceful feeling you get it seems. Definitely get your ducks in a row and all your questions lined up. Of course get an excellent CR surgeon which you won't have any problem with in your area for sure. You also want access to a good WOCN which should be easy if you have an excellent surgeon. Be sure to wear your normal slacks so the nurse can mark you accordingly when it comes that time to do so.

When my husband made up his mind we researched the various companies information and types of appliances and scoped out youtube videos. We knew nothing about pouches, how they worked, looked, maintenance of them etc. It took all the unknown and anxiety away and once we studied the process he said...that doesn't look too difficult..I can handle that. I think it is better that way instead of just waking up and learning how to deal with it. Plus at his appt with the WOCN he already had an awareness and understanding of what she was saying. Plus the explanation by the CR surgeon processed a bit easier having looked into the surgery aspect and various diagrams. Just made the process less confusing and intimidating we found.

There are quite a few distributors out there. We use Edgepark and have had no problems. Prior to the surgery I set up the account and got the info so when we were on our own for ordering supplies the preliminary stuff was out of the way and I knew what I was going to need for the first order and was prepared before hand. Plus it was easier to focus and line things up before the surgery when I had the time and made it easier on myself as I am the "secretary" and take care of the details in this house. Everyone's insurance is a bit different so you might want to know how "durable medical equipment" is handled under your plan which is what ostomy supplies come under.

As I say check out the various threads here as that will channel your thoughts in other ways for other questions we might not answer that you come up with.

The discomfort after the surgery and healing is a "walk in the pahk" as we say in Bawstun...compared to what you are enduring. lol

Best of luck.

Glad you came over here!!!

There's tons of good info here so I won't repeat all of it...sorry, I cannot help with docs in your area.

Quality of life. That was my biggest decision...I could not be a mom to my 5 year old (at the time). Emergency surgery was the reason for ileo #1 but MY choice was #2 (temp loop for 8 years) and #3 (proctocolectomy with end ileo since 2008).

Life is different, but not in a bad way! I don't have many food intolerances (usually dislikes) and except for the fact that I empty whenever I pee, the sky is the limit! In fact, I just returned from a crazy girls weekend on the Cape:) Beach, sun, whale watch, food...lots of that, something I couldn't have done pre-ostomy.

Good luck with your consults. Ask questions and write down the answers so you don't forget! This is a big step, but I am sure you'll find your way to a better quality of life:)