New to the forum, looking for feedback about surgery

Wow a month in hospital, would break me emotionally too. Glad you are out.
Many people here are very glad they had surgery and they will hopefully read your post, but to get their attention you might want to retitle your post to ask for their comments (use "surgery" in the title).

Hey imagardener2 thanks for the advice, I edited my post.

Thanks Michelejc!

What surgery are you looking to get? J Pouch? Permanent Ileostomy?

After you recover from the surgery, 4-10 weeks then you should be able to eat almost any food that you want. You need to chew your food well so you don't get a blockage but that is normally not an issue. Blockages usually resolve themselves.

I recently went through surgery starting back last October to have a two step J Pouch procedure. Step one they removed my colon, created my J Pouch and gave me a temporary loop Ileostomy. I had a few complications following but in Feb of this year I had my J Pouch connected and Ileostomy removed. Regardless of which route you go, J Pouch or permanent Ileostomy, it is a tough surgery. Make a list of every possible question, pros and cons with each procedure. I've been very happy with my decision for a J Pouch. If I ended up being stuck with a bag, I would of been fine with that as well, it just wasn't my first choice.

yellowcolon said...
Hi ks1905, I'm not exactly sure of the details but I met with a surgeon who specializes in this field (IBD) and doing the removals and what not. I'm planning on having a collectomy with the stoma and stuff. The rest I'll have to decide later. Thanks for the feedback. Also what kind of foods do you eat?

blksteeda, I'm getting a collectomy with the ileostomy I believe.

YC,

You want a surgeon who has significant experience with J-pouches (if you are getting one), not just a surgeon who specializes in it. You need a surgeon who's done many hundreds of pouches, not someone who has only trained for it. There aren't too many Pediatric surgeons who have built that many j-pouches. Maybe a regular CR surgeon will be better for you.

You could try entyvio, just know 12-14 weeks is common for a response (very slow acting). Certainly a factor to consider, should you go the medication route. Need to have symptoms mild enough, and the budget of willpower to fight/struggle that long while waiting for entvyio. And it means even more time on steroids, and long term steroid usage is bad..

ks1905 yes I had a talk with the surgeon and she said she has the same operation many times and is very experienced.

Katmom that's quite the story, I'm glad your daughter is doing good now. I'm located in Toronto, Ontario.

iPoop I also heard entyvio takes a while to work..but I'm currently on steroids again so my GI doctor at least wants me to try it to taper the steroids quicker. Either way I think I've got my sights on the surgery because I've been on steroids with flare ups here and there for months now..

Have you been symptom free for that long as well? Around what times of the day do you go to the bathroom? Is it random? After you eat? etc Thanks for the feedback!

Suffering with uncontrolled uc that's unresponsive to medical treatment isn't easy, most experience that before surgery. As such the majority have big improvement in quality of life after their surgery and the majority have good surgical outcomes. Bad outcomes do happen, but aren't common or as easy to fix as simply changing medications.

Generally, you're talking 4-6 bms a day with a j-pouch (5 seems cited the most often). You can hold it as urgency isn't present, and you often just empty the pouch while peeing (how many times a day do you pee?). As you have no large intestine there's no urgency, blood, mucus, or uc pains. Some do encounter nocturnal bms (have to wakeup to empty) or nocturnal seepage according to stats from large follow-up studies.

As with any digestive tract, what you eat can impact frequency, transit time, and output. It's a bit more pronounced with an end-ileo or j-pouch. You might avoid certain foods or take something like Imodium to slow things down a bit (especially at first when your pouch is adapting).

Also things like abscesses can happen that slow down the process between surgical steps.

Keith/ks1905 has chronic pouchitis, it's better than uc symptoms but still a nuisance. It happens in a small percentage of people and they need medications to treat.

It's good to get as complete of a picture as you can, on what's out there. Generally real good outcomes, some plausible low risk trouble points at least to be cognizant of. Nobody's saying their easy surgeries, but getting rid of uc is worth it when uc can't be tamed/controlled. Especially since uc is a young persons disease which makes it tough to loose many years fighting it and having no quality of life. When you should be out there enjoying life.

Thank you everyone for all of the informative feedback..

This community is truly a blessing, especially at my age I don't really know a lot of people I can relate to so I greatly appreciate everyone's comments.

With that being said my surgery is still scheduled for July 13 so until then I will hope for the best and try to stay positive.

Congratulations on having the strength to make the decision. It's not an easy one to make... I had surgery and I am doing great. While Entyvio is a nice idea, the reality is, in a lot of people who do not respond, we do not have a miraculous response to Entyvio either. I had no response to any biologics. My GI basically said the current treatments that are available weren't treating the mechanism of action for my inflammation. At a certain point, I felt like that was true. There are a lot of people who are helped with biologics, but the response rate is really only about 60%, so you have to be aware that you could be in the 40% who do not respond. Seems unlikely, especially when you read here and see mostly successes with biologics, but it's possible. it happened to me. On the positive side, I am very thankful to be done with UC. I always wondered if surgery was the smart option for me - turns out it was.