Will have ostomy surgery January 4th

I'm not there (yet) so I don't have a lot to offer from direct experience, but here are some things you might want to check out:

In addition to searching through this j-pouch site for tips, I've heard good things about a couple of sites:

http://www.healingwell.com/
http://www.ostomy.org/

And I've heard that the following undergarments are "must-haves": http://www.ostomysecrets.com/

Last, but definitely not least, there's a great blog by women with IBD that includes info about life with an ostomy: http://www.girls-with-guts.org/blog/ Even though most of the contributors are young women, I really appreciate their posts and I'm definitely not in my 20s! Their info is inspirational, funny, gutsy, and informative.

Wishing you all the best with your upcoming surgery. May 2013 be the start of a healthier new chapter!

You might want to PM JillM. She lives in your neck of the woods and can give you a wealth of information about the procedure, what to expect, and tips for the new plumbing.

kathy

Suzy,
You don't say if they are excising the pouch or leaving it in for possible further reuse elsewhere (a K pouch or BCIR)...if it is just a disconnect and loop the surgery will be much lighter than if there is a full pouch excision and the bottom closed off...what I can say about the emotional aspect post op is that you may have a period of eurphoria with the sick pouch gone the end ileo up and running but if you hit some ostomy snags along the road you may hit an emotional wall and experience some PTSD...so even though the physical surgery may be difficult and eprouving you should not neglect the emotional aspects...this is a Major change and if the pouch is out then you are losing yet again a chunk of organ and will have to deal with the biological shock of that too...be kind, gentle and patient with yourself along this long road...keep those that you love around you and those that get on your nerves, well, avoid them for a while if possible. You need support and love and understanding whenever going through surgery but this more than anything else requires extra warmth, affection and understanding.
So hugs for a successful surgery and positive outcome.
Sharon

Well, if you've never had an ostomy, you should check a few things. First, contact your insurance company to see how they handle supplies - what is covered (including how many wafers, pouches, etc...per month); do you have to mail order through one company (as I do) or can you go to a local medical pharmacy; will they cover skilled nursing post surgery; is there an annual cap on supply coverage.

I am a minimalist when it comes to products. I don't buy special underwear, I don't use a belt, I don't use wipes or adhesive cleaners or preps or any of that. I've had my ostomy since 2001 and my pouch came out in 2003. Happy, happy, happy with my ileo.

You may find that it takes a bit to figure out the best pouching system for you. I used convatec for years, but switched to Coloplast about 3 years ago. If you call the manufacturers (Convatec, coloplast, hollister) they will send you samples. Its a good idea to get some before surgery so you can see the options. You might even try putting them on prior to surgery to see how placement affects your favorite clothes (if your drs have a good ostomy nurse he/she should have you help determine the placement of the stoma). You can also see if your skin reacts to the adhesive any of the brands. This should help you avoid a panicked ordering situation post surgery if you run into issues.

M9 drops and spray are essential. The drops can be put in the bag to reduce odor (great esp if you work in a place w a small bathroom) and the spray works great at home.

About 5-10 minutes before you do a bag change eat a marshmellow or two. It will stop your output for about 10 minutes so you can do a change. Also, in the beginning try to do changes first thing in the morning when output will be slower. I have very liquid output so I use Immodium at night (2 pills) to help slow things down so I can sleep through.

Please let me know if I can answer any other questions! PM me if you want to chat by phone.

Your struggles will be over soon....I too am a minimalist...wafer and bag is all I use. If I think of it I put a few drops of deodorizer. Have never regreted the decision to go to an end ostomy...good luck.

Hi everyone, thanks for this initial advice. After 12 years of constant fistulas & infections, the surgeon thinks taking pouch out at same time as ostomy is done is the way to go. I have a traditional midline scar that's been opened & shut a few times, so I think the feeling is, let's open up once. My JPouch was a one stage, so I have never had an ostomy. I'm not fooling myself about how tough this will be. I will take your advice Jill, and order samples.
I am unemployed and need to get back to my job search ASAP. I've been told that I will be in the hospital for at least a week. Will I be laid up after that for weeks or for months? I understand that the butt is the last thing to fully heal?
I know I may sound a little naive, but I'm a pretty tough cookie and knew things were headed this way sooner or later. It seems everyone, including my docs are on vacation, so I worry I won't have a lot of info before the 4th.
Thanks again for responding. I will be asking more questions to be sure! Have a great holiday with your families!

Suzy

I had my surgery August 2nd, and was in the hospital for 2 weeks. I went back to work after 6 weeks, and did better with this surgery, than any of the others (there were 10!) I saw my surgeon today, to have him check out the butt. It hasn't been too much of a problem, but just didn't feel right. He said it is fully healed (took about 3ish months) but will feel better in a year. He explained the skin is very fragile and needs time to thicken up. Just make sure after surgery, you don't sit on it, but more lounge, wear boxers to let air get at it, and rinse it good with you shower head. Best of luck!!! I feel so much better and stronger! I have gained weight, and have my life back. I wish the same for you!

Thanks Itsnotsherry! I just joined the Girls with Guts FB page-they seem to have a sort of "care pkg." they may be able to hook my up with to get started...going to follow up with manufacturers...I have also had many, many surgeries and really hope those experiences better prepare me for what I'm about to face. Thanks for sharing with me. I really do appreciate it!

Though you have never had an ostomy before, you sound like you have the right attitude about it. If you see it as a way to be healthy, a way out, rather than a last resort or something that has to happen to you, you will do great. Keep one thing in mind - once you are healed from surgery, there really isn't anything you can't do - I think they don't want you to do any deep water scuba diving or jump out of an airplane (Litereally those two things were mentioned to me) but otherwise all activities should be fine.

Let me know if you have questions.

JillM, thank you so much! Will probably be talking more with docs offices this week, and I'm sure there will be many things I need help understanding (wafers, bags with Velcro, etc) I have a feeling I will be in the minimalist camp unless I run into serious issues... "I'll be back!"

Hi Suzy,

Although I resisted an ileostomy, I am delighted to function pretty normally after several failed ostomies. You've had excellent advice above, to which I can add a few bits. Diet high in soluble fiber has made me much happier. I also take lomotil, creon - a digestive enzyme, and sodium bicarbonate. Sodium is because without it, I don't hold fluid in my tissues, so dehydration is a concern. It took a while and a nephrologist to figure out that solution. Because I'd had a number of surgeries prior to my ileo, I am short-bowelish, so get dehydrated easily. Keep your fluid intake high. Make probiotics a regular part of your diet, either through supplements or with fermented foods ~ kim chi, kraut, yogurt, kefir, sourdough bread.

You are unique: listen to others' stories but try not to compare. When I heard how often some folks change their skin barriers, I'd be discouraged because I have to change every other day. How liquid your waste is, whether your stoma tilts a bit, how your skin holds up all can affect your rate of changes. Observe, keep a diary for the first several months if you have difficulty, and you'll come to know what's normal for you. Be patient - you'll continue to improve for months, perhaps even two years.

Some people never wear an ostomy belt, and maybe that depends on where their stoma is. I really like Stealth Belt and feel secure both in terms of leaks and appearance.

Healing? My nether parts felt a whole lot better a month after surgery than they'd felt with fistulas, constant pouchitis and diarrhea.

Living your life? Cataja is absolutely right - I kayak, hike, snowshoe and am so much healthier and more fit than I was during what felt like experiments in failure. Don't let your end ostomy define your life! Ask any of us for as much support as you need - collectively we've had amazing experiences. Good luck, Suzy!

Hi ladies! I think I'm as ready as I can be...house is in order, done my homework, and got a ROBE (updating my sweatshirt and PJ bottoms look for public consumption) I want to thank you again for your immediate outreach. It has given me courage and a positive outlook. I will see you in 2013!

Best of luck to you, Suzy! We'll be thinking of you on the 4th! Looking forward to hearing that all went well with your surgery.

I hope that 2013 is going to be the start of much health and happiness for you.

You are in my prayers! Best of luck. Will be there with you in spirit on the 4th. Please update us when you are able.

Before surgery my timeline was 2 months recovery before going back to work. I was out for 5 months with 3 surgeries in a months and other issues including now Chrons. It was (is) unreal how much I went through and am still going through the last 6 months. So much depends on if you have complications. I hope you have someone to help you because you will be very limited physically and emotionally for awhile. Please keep us updated. I will keep you in my prayers.

Hi gmarie, I am so sorry you have had so much trouble! You mention 3 surgeries & Crohns. Did you develop Crohns in your small bowel? What was your initial diagnosis? Just curious!

Initial diagnosis was UC. I developed chronic pouchitis fairly soon after j-pouch in 2006. Every yearly scope after always showed UC. The last scope in April showed a stricture in the middle of the pouch and the pouch had gotten floppy. In June the pathology showed Chrons in the pouch with a small bit of the illeum above the pouch. I think Jan has mentioned in other posts how Chrons can look like UC. There are quite a few of us on the site that had chronic pouchitis and it turned out to be Chrons. Now I don't know if I always had Chrons or if having the chronic pouchitis in some way made Chrons happen. I hope this is not the case for you. Also just want to mention when they do your stoma placement make sure they don't mark you too close to the waist. The ostomy nurse usually comes in right before the surgery you don't want it to be hitting the waist on your pants. Also make sure the surgeon makes the stoma round if possible so you can use pre-cut wafers.

Gmarie, I was diagnosed w/ UC, and had JPouch based on that diagnosis 12 years ago. Always had serious issues with "cuff," and was almost immediately re-diagnosed with Crohns. Re-sections, strictueplasty, cetons, etc., but thankfully never Crohns in ileum or small bowel. Things are very strictured and Cimzia, 2 antibiotics & 6 mp are not improving things so, it's time to move on. I can only move forward & pray for a positive outcome. Thank you so much for the advice about the stoma. Here goes nothing!

Wow, you were on Cimzia and it did noting for the pouch/Crohns. I am on Cimzia now and it is giving me weird side effects. You have also had to deal with fistulas? I think I may have one. Have those resolved and which kind did you have?

Oh, and about the stoma talk to ostomy nurse about how much your stoma should stick out you don't want one flushed to your skin.

Lots of positive energy coming your way for the fourth....here's to a great healthy new year!

Hello everyone! Well, I made it through the surgery with flying colors! 3 days later, I am already eating soft diet later today, the ostomy nurse will be here later today to explain the lay of the land. So far so good, thanks so much for your support. I'm sure I will be back to you with you shortly dot specific advice!

Great news!!

Well, I'm finally back among the living after my ostomy surgery! Drs. Joel Bauer & Steven Gorfine did a great job, and everyone at Mt. Sinai have been great. I didn't understand or appreciate how muh one needs to work with a good Ostomy Nurse, but once I realized the kind of support they give (supply samples, tricks, tips, moral support), I am doing pretty well. I would say (of course!) the hardest thing is doing your own barrier change and having it hold, without leaks for a few days. Heavenly! The butt healing is slow, but I think you all mentioned that to me! For only 19 days post-surgery, I'm doing OK!

Glad to hear it, Suzy! Thanks for keeping us updated. Best wishes for continued healing and may 2013 be a year full of health and happiness for you!