Newbie

Welcome.

I was dx around the age of 13 or so with UC. Had on and off flare ups, but nothing major until last year. I had a flare up that lasted 8 months and it didn't respond to any medication, so I had the surgery. Right now I have a a temporary ileostomy but I plan on having the takedown surgery in a month or so.

I'm back to my old self again. The only thing that sucks is the fact that I can't seem to gain any weight past 135lbs and I can't eat as much as I used to :(

Other than that I don't notice not having a colon anymore.

Hi and welcome!
We have led similar lives, it seems! I was sick for all of my twenties as well, with Crohn's colitis (they still think it's a 15% chance it was UC), and finally just decided to have a permanent ostomy last year. It's changed my life so much, for the better. Read around on the board and let us know if you have any questions!!

I'm glad someone appreciates a bit of humor in my name :) Smiles cause less wrinkles right?
I have tons of questions. I still haven't gotten to meet my surgeon yet and I'm keeping a list so far I'm up to 30 questions... If I can think of it I'll ask it lol. I was starting to feel really frustrated at not having a support group where I live, my friends and family are supportive but they haven't gone through it. Some of the things I'm wondering are probably silly but I have too much imagination and time what can I say?
I think mostly I'm worried how I'm going to react to it. And I'm a huge wimp so I'm scared of having the surgery and the pain and stuff that goes with it. One of my biggest things I'm wondering is how long I'll be in the hospital, again wimpy and hate the hospital. Diet is another thing, I've been reading different opinions on that one, I'm wondering if I'll finally be able to eat some things that bother me now or if it's pretty much similar for diet after surgery? I'm gonna assume it's pretty easy stuff at first to let it heal in there. Right now I'm on clear liquids only to give it a break.
I'm lucky I have a great boyfriend who is 100% behind me on my idecision. He's worried I"m going to push him away after because I'll think I'm icky... and maybe I'll be self conscious at first but eventually I think I'll just see it as part of me. That's why I'm going to name it lol. And he's offered to be there every step and learn about it with me and get familiar with it. I think that will be good for us as well. Odd thing to bond over but hey I'll take it! I feel fortunate about that and he knows I'd do the same for him.

I had almost the exact same situation uc for 8 year all of my 20s missed that part of my life entirely.
I've had an ileo for 4 years now its great! Its hard to get used a bit but when you wake up and realize you are healthy it makes all the difference!
Try to think of something you love to do but you can't because ofuc and then remember that you will be able to do it post surgery. And if after surgery you ever get down about it remember that thing and how bad life was before!

One more thing..........When my husband decided to have the surgery I went into research mode as we knew nothing about the wafer/pouch/stoma etc. All my online research and assistance was in the UC forum chasing that elusive remission. Never bothered with the ostomy end of things as surgery "was not an option" for the longest time in his mind.

I bookmarked various manufacturer sites with illustrations on the surgery and related info. The most surprising resource was YOU TUBE believe it or not. There are many wonderful people who illustrate various things associated with what the entire process is all about insofar as what a pouch system is, how to apply a wafer, pouch, empty etc. It took the unknown and fear out of it. After I watched all these different things and mentioned it to hubby he came in and watched on the computer with me. We both came to the conclusion hey it's not that bad we can handle that.

He made the decision in June - we met with the surgeon for a consult early Oct...after a vacation and another health issue to get out of the way the surgery was mid Dec. We were both so prepared before seeing the surgeon and ostomy nurse. It really made a big difference not going into those appts cold and unprepared & definitely did not want to wake up after surgery and getting a crash course on everything. Being prepared ahead of time for us  made a big diff.

Hi Wonderturd, questions are good! my surgery was an emergency one, in that I wasnt given much of a choice and I still had pages of questions for the surgeon before I went through with it. The pain is grand, if you've survived UC flare ups surgery is pretty easy, and they can treat any pain easily enough. Like Blueglass said the first few days are the worst but are also blurry due to painkillers
As for how long in hospital, I was in there for 10 days, didnt have any complications but had tried treating the UC flare up with antibiotics etc first so had no immune system and was 25kg (55lb) underweight cos of my UC,spent the first day or two in intensive care (not sure how long, again blurry) was actually kinda fun though, all the strange looking pipes and things made me feel like Darth vader or something (wish I had some photos now)
Diet is great, can eat everything although I do avoid corn and mushrooms (mostly too wimpy to try) But also the main thing is while it may take time to get used to, the time will be shorter then a bad flare up with steroid take down after and is a once off!

You can shower with pouches, it's no big deal, doesn't make them fall off, and you just dry them afterward with a hair dryer or towel (I have a pouch cover made of terry cloth, wear it for five minutes or so and it's dry). You can take baths too and swim, go in hot tubs, etc (I haven't been able to do some of these things yet, but looking forward to swimming).

There's also something called sure seals that are clear sticky things (like the tegaderm they put on you w/an iv, sort of like very sticky saran wrap) that go outside the wafer to keep it more secure and more waterproof. If you have a leak, they also hold it in, so it doesn't get all over everywhere. I learned about them on this list, and like them a lot.

Welcome, WonderTurd, I love the name, too!

After 9 years of suffering with UC, you have made the right decision to kick UC's butt and have surgery. I was sick with Crohn's for 7 years and have been disease-free ever since having surgery 5 years ago. It's awesome to be healthy again!

You don't have to worry about post-op pain. They'll keep you very comfortable with IV pain medicine. I recommend asking your surgeon for a pain pump, so that you can press a button when you need a dose of pain medicine versus having to wait for the nurse to give it to you. Sometimes it can take up to 45 minutes until they can bring it to you, which seems like an eternity when you're in pain.

Here's the lowdown on how things work... there's a peel and stick wafer with a hole in it (for your stoma) that sticks onto your stomach. There's a cloth covered plastic pouch that clips and locks onto the wafer. The pouch has a velcro closure at the bottom, which is where you empty it into the toilet while sitting down. The wafer and pouch are waterproof and are sealed tight, so there's no odor.

You can swim, exercise, wear normal clothes, you name it, with an ostomy, and the best part is, you don't ever have to worry about where the nearest bathroom is! The wafer and pouch are totally hidden under your clothes, so nobody will be able to tell that you have one.

That's great that your boyfriend is so supportive! My husband has been supportive, too, and it has made it so easy to accept. Keep asking any questions you have. We're all here to help!

Take care,
Cecilia

It helps so much to have someone come and show you their supplies. I too had a friend who had an ileostomy and I called her when I was in the hospital with my severe flare. She came to my room and showed me all her supplies, and her pouch and scar. I will forever be grateful to her for being so open and honest.

It is also wonderful that you have a supportive boyfriend. This whole experience has made me and my hubby closer. He came with me to all my pre and post-surgery appointment, helped me with changes early on and helped pack my wound when I had some incision complications. I don't know what I would have done without him. It would be easy to feel self-conscious about the pouch, but I never have worried about it around him because he constantly gives me reassurance that it is no big deal and that he loves me so much.

I love the teddy bear idea! And sewing pouch covers is super easy and cheap, as you hardly need any fabric to make one. And there are so many cute fabrics out there! When I make a pouch cover pattern, I basically trace around my pouch with the tail rolled up, adding a 1/2 inch seam allowance around the whole perimeter. Then I make a second pattern piece with the same shape only include a circular opening the size of the ring on my wafer. Then I cut a piece of fabric with each of the pattern pieces. I zig-zag stitch around the circular opening on the one piece so it doesn't unravel. Then I put the two pieces of fabric together with the good sides facing in, and stitch around the whole perimeter. Next I turn the whole thing right side out and that is it! Takes about 5 minutes. I make mine without an opening on the bottom by the tail, and basically just slip the pouch cover on and off of my pouch when I want to empty. I did it this way because the bottom edge of my pouch always scratches my leg and I didn't want it exposed. Not to mention that draining with the cover on might get messy.

I laughed when I read your comment about your list of questions. I had a huge list for my first visit. And after surgery, I saw my surgeon about every two weeks for four months due to some complications and the need to check in often. Every time, I had yet another list of questions that would pop up! It is good to be prepared though, because then you won't forget to ask about anything. It also helps to have someone with you at that first appointment because the quantity of information can be a bit overwhelming and then you have a second set of ears.

It is hard to wait for surgery. I was very excited for my ileostomy because I had been so very sick. After finally getting out of the hospital in what felt like a very tenuous remission, I had to wait about a week to see my surgeon for the initial consultation. Then, he wanted me to meet with my stoma nurse to get marked and get even more info from her before scheduling my actual appointment for surgery. I think he wanted to make sure I had as much info as possible before making the final decision. So, I had to wait another week for the stoma nurse appointment. about an hour after meeting with the nurse, I called to make my appointment with the surgeon! I was absolutely sure I wanted surgery, and just wanted to get rid of my sick colon before it flared up again. I was sooo worried that something would get in the way of surgery. My surgeon scheduled the surgery a week later so, all in all, I only had to wait a bit over two weeks from my initial consultation, but boy did that time go slowly!

Best wishes! You seem to have a very good attitude which will go a long way in recovering from surgery and healing up.