Getting excited...and nervous!

Hi! I have been lurking and reading here for almost a year now. I am 33 and was diagnosed with UC in 2008. I have been on Remicade, Imuran, Humira, Pred, Lialda, Asacol, and several types of enemas. Nothing has worked.
Now that we are settled in to our new duty station, we had my surgical consult today! Both surgeons are Board Certified in General and Colo-Rectal Surgery. They answered all of my questions and spent 2 hours with my husband and I. I have decided to go with a permanent ileostomy. They both agreed since I have had a lot of issues in the rectal area.
I am now scheduled for surgery on 22 October and it cannot come soon enough!

I just wanted to finally introduce myself and thank you all for the wealth of information that you have all provided on this forum

Welcome! You are going to be amazed how much better you will feel once your diseased colon is out of you. All the drugs failed for me too. I went with the j pouch procedure and I am so thankful to be UC free (and med free!)
Best wishes for a speedy recovery! :)

Welcome gowsgirl! It's a huge decision, but so much better when you're as ready as you sound. Here are my answers to some of your questions:

1)Did it take long to find out which system worked best for you?

It didn't take too long, but I think at first I just stuck with the first one I liked. After two years or so, that system started not working as well, and then I spent quite a while trying new things. Now I have something that I like much better than the original system.

2)Why did you personally choose an end ileostomy? (I have some family members that are grossed out/annoyed that I would choose that over j-pouch)

I likely have Crohn's, so j pouch wasn't an option for me. But I felt like I was just done, and an end ileo seemed so much simpler, so I might very well have chosen it anyways.... didn't want extra surgeries (but sigh, had one anyways), had no need to "pass" as someone w/a normal digestive system. I'm older too....

3)How long was your hospital stay?

5 nights. Then I got an abscess a week later and was in for three more nights.

4) After you came home, did you stick to soups and such?

Low residue food, but not just soups -- pasta, bread, cheese, smooth peanut butter, eggs, etc. Also lots of protein shakes... you need a lot of extra protein and calories to heal.

5)Have you found clothing to be an issue? I was looking at the maternity bands since they said my stoma will need to be a bit higher because of my previous panni removal scar. It will be above the waistline of most of my jeans since they are low rise.

My stoma is low, so different issues.... I'm not much of a fashion plate.... I did used to wear jeans a lot more than I do now, as they aren't as comfortable (partly due to the weight I put on, partly the bag).

6) Can I just wear a long tank to cover instead of tucking it into my pants?

You might check out comfizz. It's a company in the UK but they ship to the US too. They make these "vests" (British for undershirt, also tanks) that are made for high stomas and hold the pouch down. The material is very comfortable and breathable and stretchy. I have some of the underwear they make.

7) I know you can get samples from several companies, but should I wait until after my surgery? If not, what information do I put for all of those questions on the websites?!

Have you seen a stoma nurse yet? If not, make sure you do to get your site marked (and bring your typical clothes). The nurse may be able to give you a bunch of samples. The major companies are convatec, hollister, and coloplast, and they all have "starter kits." You can call them directly and have them sent -- they give you free bags, scissors, etc.... also if you order from a big supply house (eg. edgepark, byrom) they can get you set up with samples. You'll probably have a visiting nurse for a bit (insist on a stoma nurse, the others can be very uninformed), and s/he can also order samples for you.

8) Did you have arthritis and did it subside a bit after surgery?

No arthritis. I did have skin and eye complications that went away after surgery.

9)My biggest thing is feeling trapped to a toilet....is it completely amazing to go and do again?! lol

It's really most amazing when you do things like realize that you went to a movie or play and forgot to find out first where the bathroom is (or that you went at all). I was amazed when I could schedule an early morning flight ... no way I could do that in my IBD days.

Feel free to ask more as things occur to you!

I know what you mean about being ready for the day to get here and get on with it! I was SO sick when the surgery was finally scheduled that I could NOT wait to have it done! Let me take a shot at answering your questions, although you've already gotten some good responses up there.

1)Did it take long to find out which system worked best for you?

I wouldn't say it took me long to find a system that I liked...but I am still always willing to try something new in search of one that's even better. Pretty much, I am a horrible decision maker, and have found pros and cons with every system I've tried. Since all of the companies are so great about sending free samples, I figured I might as well take advantage and see what's all out there. That said, it wasn't too long after my surgery that I settled on the system that I am using most all of the time now.

2)Why did you personally choose an end ileostomy? (I have some family members that are grossed out/annoyed that I would choose that over j-pouch)

I also had some friends/family members that questioned why I would go with the end ileosotmy when there was the option for a Jpouch. For me, I really did not want to go thru the trouble/risk/expense/time of 3 surgeries. And since I was so sick, it would have been 3 surgeries for me for sure. I know many folks are happy with a successful Jpouch, but I still didn't want to take the chance of it not working right, getting infected, or still having to use the bathroom many times a day. To me it seemed like the ileostomy would fit in very well with my lifestyle, and it just "felt" like the right choice. I was correct on all accounts.

3)How long was your hospital stay?

My hospital stay was 6 nights, but I didn't get out of surgery till just about midnight that first night, so I guess that doesn't really count as a full "recovery" night.

4) After you came home, did you stick to soups and such?

Starting in the hospital, and continuing once I got home, I stuck with a low residue diet. This pretty much meant no raw fruits or veggies, no skins, seeds, nuts, corn, popcorn or anything with too much fiber. This diet wasn't limiting at all and it was GREAT to actually want to eat again and enjoy a wide variety of foods. After about 6 weeks I started adding in the foods on the "be careful with" list, and at this point am eating pretty much anything. It is important to remember to chew everything VERY well, and stay hydrated.

5)Have you found clothing to be an issue? I was looking at the maternity bands since they said my stoma will need to be a bit higher because of my previous panni removal scar. It will be above the waistline of most of my jeans since they are low rise.

Clothing hasn't been an issue at all for me, though my stoma is a couple inches below my belly button. The maternity band is a good idea. I often wear high waisted underwear, or a long/tight tank top under my shirts. Some of my pants hit right at my stoma, and on many my stoma is above my pants waist....none of my pants hit above my stoma because I am very high waisted and never wear pants that high. There is nothing I haven't been able to wear from my pre surgery days, just takes a little getting used to.

6) Can I just wear a long tank to cover instead of tucking it into my pants?

You can most definitely do this! For the first couple months I didn't tuck my bag into my pants at all. Sometimes my shirt covered it, sometimes it was peeping out of the bottom a bit, either way it never caused a problem for me. Now I tuck it or not depending on what I'm wearing. You'll find what is most comfortable for you once you are up and about and feeling back to normal enough to try different set ups.

7) I know you can get samples from several companies, but should I wait until after my surgery? If not, what information do I put for all of those questions on the websites?!

You can probably wait on this until after surgery. My stoma nurse was great about helping me order the samples, and the nurses/reps at all of the companies are very helpful as well. Also, the hospital should send you home with enough supplies to last a few weeks while you do get some samples of your own ordered.

8) Did you have arthritis and did it subside a bit after surgery?

I don't think I had full on arthritis, but I was having some joint pain/stiffness....and yes, it subsided totally after surgery.

9)My biggest thing is feeling trapped to a toilet....is it completely amazing to go and do again?! lol

It is SO WONDERFUL to NOT have to be in the bathroom all the time or always worried about where the closest bathroom is. It is also great to not wear diapers, not have accidents, to sleep through the night, have an appetite, gain weight again and feel healthy! Still, over 6 months out of surgery, I catch myself being totally surprised and thrilled by how much I can do without worrying about all the old UC stuff!!

Hope this helped....let us know if you have anymore questions!

I highly recommend that you go to YouTube and view some videos on ostomies.  I spent the 5 months prior to my surgery getting familier with how to change a bag, bag systems, showering/bathing and even one that showed a video of the surgery I was having.  Watched dozens of videos on ostomy (I have an ileostomy) bag changes that helped so much and by the time I had my surgery, I had a good comfort level and no fears at all.  I got to see several types of bag systems which helped me when the time came to decide what would work best for me.

I concure with others who have recommended a WOCN nurse but if she/he doesn't work out for you, there's always this board to go to for help but don't be afraid to also seek out advice from your surgeon.  My surgeon is awesome and has been most helpful in all areas.

Best of luck to you and remember to "Trust Your Journey".  You will get your life back.  Even though I had hernia surgery 7 mos after my proctocolecomy, and another surgery 2 months later for an adhesion that twisted my intestine, I'd do it all over again 100 times.  I really did get my life back.