Looking for words of wisdom & advice....total proctocolectomy

Hi. I had the same procedure done about 2 months ago now. Different reason, but same thing. Also dysplasia. Obviously, it sucks. But, when everything settles, you will feel better. The ostomy bag sucks, too. Once again, you will get used to it and eventually, it won't be a big deal. The worst part will be the butt wound. That hurts. So, just take it day by day. The worst part for me was emotional. But in my case all of this happened in about 3 months... the diagnosis, the prep and the surgery. Make sure you have a good surgeon, also. Research him/her. If you have any specific questions feel free to ask. Good luck.

Thanks so much for your post NSSG! I think I remember you from the other forums.
I did have a temporary loop ileostomy about 17 years ago...but it was reversed. The products used for ostomies today seem so abundant and improved. I am a bit overwhelmed as there are so many choices. I guess by trial & error I will find out what works best for me. NSSG when is the next step towards your J Pouch? I know some people who are doing very well with it! A J pouch was not an option for me :(

Thanks for your post bukowski. Like you everything is happening fast. Any hints on dealing with the butt wound? My surgeon said in the beginning I will have, I think he said 3 drains in.

notsosicklygirl said...
I had step one of jpouch surgery, and i guess it's slightly different because I am heading toward a j-pouch, but I have to say, I don't mind having the ileo at the moment. You get used to it quickly and once you know what products you like and what works for you, it becomes second nature. I barely even think about it anymore. I can do all of the activities I did before I got sick. While I had active IBD, I was so limited. I see that now because with the ileo, I can go out whenever I want and do whatever I want. No more getting up at 5am to leave the house at 8am. No more making excuses. At first I felt down about it, probably because it was new and "different". I also have a short stoma and I was using the wrong product so that got me upset but now it's easy. I am off all the drugs too which is amazing.

This is exactly my experience too. I just wanted to add that I woke up after my Colectomy Surgery and I just felt better, no more diseased colon polluting my body any longer. You're in pain but you know that you feel better and then you're like why did I wait so freaking long to have this surgery.

wow!!Thank you all for your posts!!! ALL of your replies and input actually put a smile on my face!! I am feeling..YES I CAN GET THROUGH THIS!!!!

NSSG best of luck with your upcoming surgery. We all know that in a blink of an eye your surgery day will be here.

I am looking forward to get this behind me....I know its corny...but pun is intended :)

Thanks Ks. So glad you are doing so much better. Your posts are so encouraging to me!

I am 5 months out from total proctocolectomy with APR, due to UC for 24 years. My "Barbie butt" healed up nicely. I kept it as dry as possible by keeping fresh gauze tucked in there for the week I was in the hospital and for a while after I got home. I also used the zinc/antibiotic ointment as prescribed (and probably applied it even more often than that). They gave me an lightly inflated cushion to use and take home. Just be careful with it, and you will be fine. I don't even notice mine now.

Many of the skin problems I hear of people having with their ileo come from that fact that their stoma does not stick out very far, if at all, from their abdomen. Loop ileos are different, I'm sure, but if this is going to be permanent, you want to tell your surgeon to make sure your stoma is NOT flush with your skin. I didn't understand it initially when my home health nurse went on and on about how great my stoma was because it sticks out about an inch. I actually hated that it stuck out so far. I know now how big of a benefit it is when it comes to barrier(wafer) selection and keeping your skin healthy. So if you can make a point to talk to your surgeon directly and about that beforehand, I would recommend it. :)

Having the bag does suck, and always will, but you will adjust just fine. I am back to playing sports (full court basketball and golf) now, and am starting a full-time job this coming Monday. Shortly after surgery, I was able to go out with my husband again and go to my daughter's college graduation. So, life is soooo much better now.

You will do great. Your attitude sounds good, and that is key. Good luck, and keep us posted!

Thank you BBUC!

Twingirl,

I'm 4 days post op now sitting in the hospital and couldn't be happier with my decision . Go in with a positive attitude and you'll wake up in a good mood too!

I learned a ton from browsing this site. I did order a waffle cushion and I went and got myself a recliner for home to relax and heal in. I was very worried about my butt wound but wouldn't you know that thing hardly hurts at all, I haven't given it any thought, hopefully a good skilled surgeon is the ticket and ur butt wound will be good like mine.

Day one after waking up I was in consederable pain, all abdomen I had a laproscopic procedure, with eurethral Stents. I guess the stents help the surgeon not worry about cutting ur eurethral tube as they're very noticeable when stented. Had to have a catheter for 3 days so that got removed yesterday.

All in all going really well. Went from taking dilloded (lots and lots including a push button pump) on monday to being on 7.5 mg loritab today probably get out of here tomorrow, go home and heal.

Look for things and ask the wound ostomy nurse about any products your looking at and what will be best for you . She was very happy that i had a lot of questions and she's the best person to answer pouch system questions.

Thanks K-del for your input! I already spoke to the ostomy nurse & she did tell me to ask the surgeon for a well budded stoma...as it will give more options with the wafers & systems to wear
Glad you are doing so well at 5 months post op.
I know after going through things like we on this site have gone through...it really makes one appreciate even the simple joys of life!
Thanks for your post. Will keep you all posted!

Hi twingirl812, welcome to the ostomy forum!

You'll find that life with an ileostomy really isn't that bad!! I've had one for close to 16 years (first was emergency/had it reversed/asked for another 3 months later ). I will say the surgery is not a walk in the park but take your time, listen to your body, eat a lot of protein and take naps!

You've received some great advice. Remember you'll have a new "normal" but, at least in my case, it's better than a flare! I am happier and much healthier now...you'll want to keep a food diary in the beginning. I eat anything I want to (including nuts/popcorn/raw veggies etc.) in moderation. I do not eat processed food (I shop the outside aisles at the grocery store) and find that I don't have gas/bloating/noises or a pouch full of air.

Make sure you ask all the questions that will pop into your mind...I'm glad you found this great place to learn!

Everyone on here seems to meet with a WOC Nurse a pick a stoma location, I was never given this opportunity. I had brought it up to my surgeon and he said he doesn't like when you pick a spot for it. He says when he's in there he determines the bast location for it for hernia prevention. He says if it's too high or too low you'll be more prone to hernias in the future. It made sense to me and I figured let the expert put the stoma where he thinks it'll be best for a long term solution with no problems. He gave me a good idea of where it woukd be, between the hip bone and my belly button basically draw a line and put it in the center. I think it's a good location.
As for appliances....I got sent home with the covetec moldable 2 piece. This thing is pretty cool because there's no cutting. It's like a wax ring that u mold into the shape of your stoma. It then forms a little wax like turtleneck around your stoma. It's very secure and I haven't had any issues with the flange itself. I'm not a huge fan of the bag that goes with this setup however. I have the vented bags and don't care for them, the bag is also a little noisy and quite large.
I contacted Coloplast and every other manufacturer that I found on the ostomy.org website. I highly reccomended u go on that site after your surgery so u know sizes of flanges and ur stoma and all that. They have about 12 different places to contact for free samples with websites and phone numbers. Coloplast sent me two 1 piece mio sensura and two sunsura 2 piece systems. I tried out both the piece bags so far and they're really nice too. I don't feel like they were as secure as the covetec moldable flanges though, almost felt like if I used them again I woukd use the Eakins seal or something similar for more security.
One things for sure is I def like the two piece systems better. In the not so distant future I'll be getting my stealth belt and with a two piece you can rotate the bag from vertical to horizontal for however u want to wear the bag for whatever your doing that day without changing the whole system out.
I go see my surgeons and stoma nurse tomorrow and I'll ask to try out some Hollister products to see how I like them, I've heard good things about those as well. One more thing on the coloplast, I love love love the bag itself, seems to be a great size, shape and it's very quiet and dries very quickly after a shower. And I've only tried the 1 piece out so far but that thing is very low profile. The 2 piece has a really cool locking system and it looks low profile too but I doubt as low profile as the one piece. You might want to have different systems laying around in case you have some event that woukd call for u to wear a lower profile system. You'll have to go through trial and error with a few and see what u like. For everyday wear u might like one thing. But if u have a formal event like a wedding u might find that you might want to strap on a 1 piece that day that's really low profile that fits under your clothes without and lines. Hope that helps u a little. Just make sure when you meet with your stoma nurse you bring stuff up. They're so knowledgeable on the products and what will work best for you. Also they're expensive and don't know about your insurance and what's covered and not! I'm still in the process of figuring that out myself! My disease for me is fortunately military service connected so I get my products for free that the VA carries which seems to be hollister, covetec and a few others. But if I like something g else better I'll have to figure out what my blue cross blue shield covers.

I never saw anyone to determine my stoma location beforehand either for the same reasons Pjb said. I woke up and there it was!

Hope it all goes as planned and you don't have to wait.

Thanks BBUC and gospelady.
Seems we are all a go for the scheduled surgery date...3 days to go.
I will definitely look into getting a sampling of supplies.
I will look into the United Ostomy Association of America. Thanks for the info.
Thank you for all your good wishes & prayers!