HealingWell
Search Close Search
☰

Surgical Consult Questions

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/12/2019 5:40 AM (GMT 0)
I can’t believe I’m only two years post-diagnosis and considering surgery already, but here we are. I’m still flaring despite increasing Entyvio to every 4 weeks. It’s probably a mild flare by most standards, but the symptoms I have (urgency, mucus/blood, tenesmus) are making it difficult to schedule things and live life.

I have a consult with a surgeon next Monday, just an initial call since we are 90 minutes from the hospital. My GI feels we still have options we can try - we just added Uceris foam today and are going to give the Entyvio a bit more time, then potentially trying Stelara next - but he agreed it was a good idea to have a conversation with the surgeon.

So - what questions do you wish you’d asked, if any, during your consult? Any other advice for a first conversation? I’m at the early stages of weighing surgery as an option, so open to advice. Thanks!
Posted 3/12/2019 12:57 PM (GMT 0)
I'd watch videos 401-404 on the Michigan site and that might spur a few questions. http://www.med.umich.edu/ibd/school/index.html. Mostly it depends on what worries you the most, and what you need to know to feel confident in a decision to undergo a surgery. Are you worried about recovery times?, possible complications and odds thereof?, time to go from 1st surgery to completing the 3rd? etc etc.

What's on your mind, and things you are considering asking? Got any?
Posted 3/12/2019 3:46 PM (GMT 0)
My GI recommended surgery roughly two years after diagnosis. It seemed too fast and I resisted the idea for another 2.5 years before i finally agreed to it. I went to the surgeon recommended by my GI.
I would ask the surgeon how many jpouch surgeries he or she has performed or how many years they’ve been doing it. My surgeon wouldn’t give me a number of surgeries but told me when she started doing them and what hospital. Also ask if you are a candidate for 2 or 3 step surgery. My dr told me based on my overall health and past medications, I was probably a 2-step candidate. But she said she wouldn’t know for sure until she got in there and looked at the condition of the tissue.
I’d also go to jpouch.org and see if anyone there had experience with that surgeon.
I was at a teaching hospital which I think was beneficial.
Hope this helps and good luck.
P.S I’m a few months post surgery and things are going well. This surgery is not easy but I’m now glad I did it. Think marathon, not a sprint.
Posted 3/12/2019 3:50 PM (GMT 0)
@colitisresearch, thank you! The surgeon I’m talking to is Richard Hodin at Mass General in Boston, and he seems to have a lot of experience doing these surgeries, though I will ask.

How long did it take you to recover (so you could do a day’s work) after the first surgery? I’m a working photographer, and can shoot with an assistant, but still need to be able to stand up and hold a camera. That’s the biggest worry for me.
Posted 3/12/2019 4:03 PM (GMT 0)
Having read 3timechamp's recent posts, i regret not asking "Will i have my own room in the hospital?"
Posted 3/12/2019 4:06 PM (GMT 0)
How many steps?
How many j-pouch procedures have you performed?
How will my pain be managed?
Will fertility be impacted? (wasn't a huge concern for me)
What can I expect after the first step?
What can I expect for long-term outcome?
Am I a good candidate?
Do I need additional tests to rule out Crohn's Disease?
What is the likelihood of developing pouchitis or complications?
What are the most common complications?
How many days will I be in the hospital after each step?
Will I need to prep?
How long do patients typically wait between steps?
Will it be laparoscopic?
What types of scars can I expect?

Some questions you might ask the office staff rather than the surgeon himself. Anything insurance related, about access to supplies or ostomy nurse, or about follow up care so far as having a home nurse.

You really can't push yourself after surgery. You need to take it easy. With the stoma, it's sore at first and you don't want to bend and stretch too much, so taking photos could be difficult, but with an assistant, you can probably hold a camera fairly soon after surgery. They say not to lift over ~10 pounds for 4-6 weeks, but i was up, working, lifting my 4 pound laptop after a week or two.
Posted 3/12/2019 10:33 PM (GMT 0)
I was recommend surgery 3 months after being diagnosed and ending up in the hospital for 23 days.

I should have had surgery at the time but instead I fought it for 7.5 years, I probably needed my hip replaced because of long term steroid use.

If I could go back in time it would probably be the first thing that I changed in my life. My outcome isn’t optimal but my QOL is so much better than it was.
Posted 3/12/2019 10:46 PM (GMT 0)
I had a consultation with a surgeon today, 17 years since diagnosis and 16 years since surgery was first suggested. I am ready for it and asked

- recovery time
- if it would be laproscopic
- risks
- how long to wait before deciding on step two
- how many incisions
- stoma nurse support

Good luck!
Posted 3/13/2019 12:04 AM (GMT 0)
Jonba good luck
Posted 3/13/2019 5:21 AM (GMT 0)
Notsosicklygirl has theee most thorough list of questions! Also agree with her about recovery- your line of work sounds more physical than mine. I took six weeks off work and my job is pretty mello. Just desk work. (Actually it’s a stressfull job with tight deadlines but physically pretty easy.)
I took six weeks off work after 2nd surgery too.
I’ve read some in this forum who worked from home to make it a bit easier but I didn’t have that option.
Posted 3/17/2019 6:56 AM (GMT 0)
Thank you to everyone who took the time to respond! It’s been one of those weeks - infusion wiped me out, struggling a bit with the addition of Uceris foam, arguing with health insurance...ya know, typical week with UC 😂 I’ll share what I learn after Monday’s consult!
Posted 3/20/2019 5:28 PM (GMT 0)
So, quick update: I spoke with the surgeon (Richard Hoden, for those of you in New England) on Monday. He is a colorectal surgeon at Mass General and apparently does quite a lot of UC and Crohn's surgeries.

He was pleasant and knowledgeable, and took the time to answer all of my questions. We talked about the types of surgery, recovery times, time between surgeries, and the possibility of things like cuffitis and pouchitis. He was clear that surgery comes with some trade-offs but most people who have it feel it's much better than life with UC.

He was wonderful in not pushing me in either direction, simply saying that I need to decide when my symptoms are making life difficult to live, but not waiting until I'm super sick and on a ton of steroids to make that decision. For right now, I'm not there, so we're going to continue to try to manage UC medically, but will get in touch with the surgeon if things worsen (or don't improve with different treatments).

Thanks to everyone who responded and to this group in general for being so willing to share your perspective on this disease and on surgery. It helps so much!
Posted 3/20/2019 6:21 PM (GMT 0)
That's what I did. I had seen a surgeon when I thought UC wasn't going to get better. Few months later with not much sucess with some meds I made call to surgeon. It's good to get consult out of way. Good luck
✚ New Topic ✚ Reply