Hi everyone,
I have UC, and I'm currently taking Stelara and Pred. I've been told that if I have another bad flare, surgery is probably my next option. I've been referred to a surgeon to discuss my options, and I'm going to see him this Thursday. Can anyone give me any ideas of questions to ask, or anything you think would be helpful to know?
First off, best of luck and remember that it may be a better life ahead without the illness. It has its challenges. With that, this is the healthiest I have been since high school.
Here are some things I can remember asking:
What are the percentages of success and failures?
What is the recovery time? Always remember with this one, they're going to tell you the best case scenario because who would do this if they knew the worst case :-)
Honestly, the best tip I can give you is to try to talk to the nurses that work on the recovery floor if possible. They will tell you the real deal and they will also give you a heads up on who the best surgeons are. The nurses know.
The other person I would talk to is the ET nurse who will mark you for a stoma and talk to you about life with an appliance. This nurse has seen it all and will tell you exactly what you're going to go through and experience.
So I guess my underlying message is the surgeons will answer some questions, but they are very matter of fact and don't always give the details that you are looking for as a patient.
Best.
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I don't have the same scenario as you but if you do go in for surgery, plan on things taking longer to heal than what is told. Like Dnewlife said, it's best case scenario. Mine went from 8 weeks (which should have put me back to work about June 1st) to being released to go back on December 1st, 6 months later than expected. If you do have surgery and get a glorious bag on your stomach, get with your ostomy/wound nurse as much as possible to go over what's involved with changing it and maintaining it. The more you know upfront, the better (or easier) it'll be when you're on your own at home. Good luck.
Ask if the procedure is laparoscopic or open surgery, expected in hospital and total recovery time. Ask if you will see an ostomy nurse prior to surgery to help in determining stoma location as well as post-surgery orientation on care. Also, what plans or options exist for potential future reconnecting (anastomosis).
Lastly, I cannot emphasize enough the importance of post-op PT. With a hole in our sides, we are highly vulnerable to hernias which can be difficult to treat and negatively affect your QoL. You must take care to be especially cautious the first 6 weeks and do no heavy lifting for 3-6 months. Eventually, people can and do return to doing most activities but this is a period where permanent damage occurs and is often overlooked by surgeons.
Dnewlife made a very important point. If you have surgery, make sure the ET nurse and surgeon talk to each other and consult you about the location of the stoma. After all, you are the one who will live with and manage the ostomy.
My surgeon made the appointment for me to see the ostomy nurse so she could mark on me the best spot for my stoma. She had me stand up, bend over, sit down, etc. before she decided where to put the X.
Hi
Is this permanent?
Or giving the colon a rest to see if the meds control the inflammation?
(2nd option was given to me 10 years back wish I would have done it... had a negative view on bags)
Which procedure? ;( Cut you open or robotics can't remember the terms)
Good luck...
Always remember complications are possible.
Went in for a 3-day procedure came out 21 days later
But it was on me....
10+ years chronic diarrhea, bloating...
Went from UC to bowel disorder then Crohn's..
If it's permanent.
No biggie
Your life will improve
This has been the 1st New Year's I was able to drink and enjoy myself!!!
Diet???
No more restrictions...
Mexican salsa... refried beans....
No sick and twisted colon running my life!!
Only thing to watch is blockage...
Skin barriers and bag now are a snap
I'm getting 5 days between changes
Use a support belt to work out and working on the house
Will take months to heal.
Check the docs references and background
Same for the hospital...
Happy New Year
And best of luck to you.
I'm pretty sure. I'd be all for some of the other nurses in that department to do whatever they needed to, to be sure I'm okay though.
Hello hot town!
When I had my first surgery in 1991, I had a total colectomy. The plan was to have a temporary ileostomy until I was healed from the colectomy, then undergo a second surgery to get rid of the ileostomy and reconnect the intestine to a J-pouch which was supposed to make my bowels function like normal.
That was the biggest lie ever told! I wish I had kept the ileostomy because the next 25 years or so were a gradual decline in my quality of life. By the time I got my permanent ileostomy in 2017, I was near insanity from the constant bowel movements, malnourishment, and lack of sleep.
That said! Be sure to check out the surgeon's credentials, education, experience, etc. Read patients' reviews. Research the hospital where you're going to have the surgery same way you checked out the surgeon.
Best of luck! My recovery was awful because my surgery was extensive. The J-pouch had to be removed and a large piece of muscle was taken from my thigh to fill in the space where the J-pouch was. Then the ileostomy itself.
It was worth it though! I wish I hadn't lost those years, but I'm so thankful that I have a normal life now.
I'm praying for you!
E I
Thank you! I've met with the surgeon, and he seems like a good guy. He says I will need a total colectomy, and will be left with a permanent ileostomy. At the moment, I'm not scheduling anything in, as my meds seem to be working and I'm actually able to taper down on steroids. However, surgery will be the next option if and when the meds fail, so it's good to know what they're planning on doing.
My apologies, Horntown! I just realized I called you "Hot Town" in my earlier reply! Lol! I'm not sure if that was a typo or a Google spelling correction.
E I
Hello
Just curious on that great advice (I had no say in my location), where is the X in reference to your belly button if you don't mind my asking?
Thank you and best of luck, check back in with us afterwards.
JB
My X was placed about 2 inches to the left (as I look down) to my belly button. She was looking at placing in a couple different locations near there until I explained what I do at work, and then she had me move around like I was working, and she decided where to put it. Works good, no issues.
So it was level with your navel? Did she draw a circle to define the eligible area?
Sorry I'm so nosy.
Jb.
Yep, pretty much right in line with my belly button. If I remember correctly, she marked me with just an X and that's right where the surgeon put it. It doesn't interfere with me wearing pants or anything on my belt line. And it doesn't sit up so high on my ribcage (I guess you could call it) that it doesn't interfere with me bending, stooping, climbing, etc. At work, I wear a wrap to hold it snug against my body and it has no effect on me moving around to do stuff.
Looks like the comments have you covered on questions. Just sending healing and best wishes your way! I know it's emotional overload thinking about the "unknowns" of the future with an ileostomy, but as someone who also had UC, I can tell you that it's a huge step up from flaring. You're not alone! And an active life is possible with the bag. I'm only 3 weeks out of surgery and I'm already gaining back all the weight I lost from eating all the foods I couldn't before haha, I just got a massage today (laying on the stoma the whole time and I was totally pain-free), and already walking around and enjoying my life again. It gets better, and it can get better quickly! Be well and good luck!
Thank you so much! I'm so pleased things are going well for you, and that you can get back to things (and food!) that you enjoy. At the moment, I'm still waiting to see what happens. The surgeon I met was great, but we've agreed to hold off on any decisions for a few months, as Stelara seems to be working for me at the moment.