Getting surgery soon.....nervous

Hi Amanda and welcome!
First off, I'm sorry you ended up needing surgery. I went thru all the meds too with no luck. I had a two step j pouch procedure four years ago. I can happily say my life returned to normal not long after my second and final surgery. I eat just as I did before my UC dx. Some foods may bother me more than others but not enough to keep me from them. I use the bathroom an average of 4-6x a day. That can vary. I won't lie about my ileostomy experience. It was awful. But it was because my stoma was recessed and I had a lot of skin breakdown, burning and itching. Most people do just fine and it's only temporary. I'm sure if my stoma hadn't sunken in it would have been a much better experience.

The surgeries are tough but it's worth it. It's only normal to be nervous. I was terrified! I also have two family members with long time j pouches and they have done great too. Best of luck and if you have any specific questions, please feel free to ask. :)

Hi Amanda,

I am 23 years old and also have UC. I am in the process of getting my 2 step j-pouch...had my Step 1 done in April, 2014. I can't comment on the entire process as I am only half way there and don't have my j-pouch built yet but I do currently have an ileostomy.

Post-op it took some getting used to in terms of actual ostomy care but the ostomy nurses at the hospital were so awesome, and they arranged for nurses to come to my house to help with my first 3 bag changes at home so it was a smooth transition!
I have never really viewed the ostomy as a hindrance at all, at around 6-8 weeks post op I was going out with friends, back to work, and graduated from university! It is almost second nature to me now, and I can say that I honestly don't really think about it much. I would say in the "early" days the most annoying aspect wasn't even emptying or bag changes because those are so quick, but trying to figure out how to camouflage it under clothes. For some reason I had no issues telling people I had an ostomy but I didn't want them to be able to SEE it.

In terms of emptying...I empty my bag maybe 5 times a day, sometimes an additional time during the night but that isn't every night. In terms of diet while on the ostomy...I am finally pretty much eating everything now. I had a couple small partial blockages in the first couple months from introducing fibrous foods too soon (in particular celery and carrots) so I stuck with mostly cooked veggies for the first few months. Now I can eat salads and nuts and pretty much whatever I want but I always chew my food like a maniac!

The only issue I have isn't even with the ostomy, but I have about 8-10 inches of colon left that is still flaring...I can keep it undercontrol luckily with topical products and am off all those immunosuppressants/steroids!

Even though my ostomy is temporary I am quite confident that if something in the future was to go wrong with my j-pouch, I could live a normal, happy life with a permenant ostomy. I was very adamant that I did not want surgery...pretty sure I even told my mom that I thought "my life was ending" so I have come a long way since then!

Sorry I can't comment about life with a j-pouch..I do have a family member with a j-pouch and besides a small episode of "pouchitis" she is doing so well - she is actually about to have a baby which is so wonderful because surgeons (mine atleast) always warn about the increased chance of infertility with the j-pouch surgery. Anyways, good luck with everything! Wishing you all the best :)

Congrats on getting your life back soon!

I startrd the three step process in July. And I loved my stoma/bag so much I decided to keep it! :)

If for any reason you enjoy up with an ileostomy for life - know that it is still fantastic life... especially compared to UC! :)

This is a great board for help with Qs with surgery along the way. So revisit often :)
were here to help :)

I felt well enough to eat a meal before I even left the hospital.
I actually gained 15lbs in my first month after surgery - lol. So yeah - that says a lot about my appetite after! :)

As far as feeling well enough to do things? I started slowly taking walks around the neighborhood in the week following surgery (my first week home.)
I did not really leave the house for long until a few weeks after surgery. But I am a hermit and prefer my house - especially when not feeling well.

I didn't even drive for a few weeks. I got a ride for my 4 week follow up appointment. It was a 2+ hour drive. We also went shopping at my favorite store for about 2 hours. And then 2 hours home. I slept like an Angel that night! lol

I felt well enough to socialize for a bit, do some light house work, craft/sew all within the first week of being home.

I think the #1 thing that surprised me from UC life to ileostomy recovery - i didn't nap. Not once!
with UC i napped all the time. I assumed I'd need naps once I got home from surgery, but I didn't nap for the first few weeks at all! Even when I tried to force myself to after a longer walk or doing too much around the house - it was almost impossible!

It's an amazing feeling.

Hi: had my surgery July,2014. You are going to do fine and feel soooo much better afterwards . My only bit of advice is mentally train yourself with your post surgical rehab as though you are training for a marahon and not a sprint. Slow and steady will get you there without setbacks.
Best of luck to you.....

It's really amazing what the human body can adapt too, like at one point going to the bathroom 10-12 times a day was "normal" for me when I had severe UC, and then living the the ileostomy the last year it's become the new norm and yeah it can be a bit annoying here and there in the end you learn to live a normal life regardless of your situation.