I'm 17 years old and on the J-Pouch discussion board a lot because of chronic pouchits. I got the pouch when I was 10 but keeps getting inflammed. I've decided to switch to an ostomy. I had problems with the temporary one where I would get blockages three times a week and end up in the ER because they wouldn't clear. I really need some assurance because that's in the back of mind and it won't go away. Could you guys please give me some encouragement. I've contacted the Ostomy Nurse at the IWK in Nova Scotia a hospital for children. She's planning to set me up with a person who has one. I'm planning to call my GI clinic tomorrow to see the surgeon for the hundredth time. He knows me really well. Is it really a pain to have one or not? I just need some support I think. Thanks you guys and gals I always find you so helpful!

Hi Molly-

After I got my ostomy I decided not to let it define me and as a result it changed my life. I quit my job and started a whole new career and the first year I was rookie of the year. I stopped putting of trips and in the past year I have been to Italy, Amsterdam, saw my mom perform in a sing competition in Vegas, and was there at my cousin's wedding in Virginia. I am hoping to go to London and Vienna this summer. I started my art classes again and I have to say I like who I am today.

I just had my rectum removed in November and now my ostomy is permanent.

Erica

Hi Molly,

I just converted to a permanent ostomy October '07 and my body feels great. The bag doesn't get in the way of my life at all. I'm actually more active with my ostomy than I was with my j-pouch. I plan to start training for a marathon this year, something I never would have thought of with my j-pouch.

As far as your concern with blockages. I would only worry the first few months after surgery when things are still swollen. Maybe you had blockage problems with your temp b/c it was a loop ostomy.

I'm sorry to hear you are losing your pouch but you will feel much healthier with your ostomy, you'll be glad to have your life back!!!

Scott

This message has been edited. Last edited by: SJ,

I went to a perm ostomy after 3 1/2 years of pouchitis. I was 30 (6 1/2 years ago). Since then I've had a baby (who is 2 today!) and I'm pregnant with my second. I've traveled all over and done all kinds of things, hiking, kayaking, etc...

With my temp ileo I was in the ER constantly for dehydration. Not the case with my perm ileo. Maybe 2x a year I need IV if I get flu or something, but otherwise, I've been in great health.

Good for you for deciding to take things into your own hands and get better. I'll be watching to see how you are doing!

Please keep us posted. I too am considering a perm. ostomy and would like to hear how it all goes. Good luck!

I will tell all of you oncce I know the date. I would set up an appointment to see my lovely surgeon, he's nice. I can't call yet because mom wants me to talk to her once she gets back from her trip. I'm definitely going to do it and I feel really good about doing it now. It will be one of the best and mature decisions I've made but it will be for the improvement of my life. Thank you all of you j pouchers and ostomy friends I will continue to enjoy life.

Hi

I am 6 months or so out from having a failed jpouch removed (poor surgical technique and severe dysplasia).
I thought I was getting a Kpouch, but too much damage inside.
An ostomy can be a really freeing event.

I had a tough time for a couple of weeks, then set my mind on recovery. I suggest walking as soon as you can stand up in the hospital.
I felt much better since then (mid-June) and within 2 months (mid August 07) was coaching my son's PeeWee football team (long hours outside in all weather), flew in a bi-plane, do Tae Bao, drive with my family on long road trips, etc.
I am sure you will not have as bumpy an abdomen as I do, and particularly when I started lifting weights again, no one can 'tell' I have one.

If it's your 'thing, Many of the women here say they continue to wear low-rider jeans etc.

My one regret is had I known going under the anesthesia that I'd end up with the ostomy, I think I'd have placed it elsewhere.
This sounds goofy, but I think one great tip is you should get some free samples from vendors-Coloplast has an adhesive system I personally do not use, it is easy on/off so place it on your abdomen and see where you want it to be, put a little water in and you'll have a real test.

I was helped by getting a mentor of sorts from this site who coached me through the bumps.

All in all, living and loving life.
My wife says OUR quality of life is better. My son is happy.

Sleeping, no 'accidents' at work or in the car and do not have to plan each day by where the lavatories are.

Best of luck and good health
Eric

Hi Molly,

Getting Wee Willie (my perminent end ileostomy) was the best thing I ever did. I suffered for 8 long years with as many operations to try to fix my j-pouch. Now I wish I'd thrown in the towel much earlier because all those extra procedures and surgeries have themselves caused more problems with adhesions and such. However, I am just so glad to be rid of all those "butt" issues and can now carry on with my life.

Like Jill I love to travel and Wee Willie and I have been far and wide together, even from Coast to Coast of the States to meet some of my good friends from this site. We go over to France regularly and have been up to Scotland for family occasions like weddings etc. I don't even give my stoma a second thought.

I never carry any spare appliances with me when I go about my life whether it's work or social. The only time I am likely to even think about taking any spares with me is if I travel off the island. That's how confident I am in my system.

I wear the clothes I like which are the same style and size that I've always worn. I like close fitting stretch jeans and feminine figure hugging skirts and no-one knows what's under them unless I choose to tell them. My secret is to wear good supportive underwear and not to let my bag fill more than 1/3 full.

I have to say that I think you are very brave and mature to make this decision especially at such a young age and I admire that. We will all be here to help you through this so come here often for support, advice and friendship. That's what we are all here for.

Take care and keep us posted.

Shell

Hi Molly (and Marcene, too),

I concur with Shell: after having several revisions, two entirely different types of internal ostomies (one catheterizable, and the second a J), dozens of hospitalizations for blockage and/or dehydration, having most of the symptoms one could have as side effects from most of the drugs used to treat pouchitis, pain far more protracted and agonizing than childbirth, and just generally feeling awful for most of five years,in retrospect, I, too, wish I'd made the decision to have a permanent ileo much sooner.

Because I'd had a really tough time with my temporary loop ileo, I even considered taking my life if the permanent was as bad a solution as my loop (I was really depressed and NOTHING worked). Thankfully, my permanent ileo has been terrific. I have a Barbie Butt, and going back is definitely not an option. The plumbing has worked well since the surgery, I've had a few leaks as I try out different systems, but I'm generally pretty successful, and leading a MUCH more normal life than with my J. I garden, snowshoe, hike, travel, camp, have dinner in very quiet settings with no rumblings apparent, go to the theatre and museums, and am able to work normally. I, too, empty when my pouch is about 1/3 full, wear pretty close-fitting jeans in sizes I wore before, and even enjoy playing dress up once in a while. I've bought some wonderful sort of art-to-wear patterns and constructed dynamite looking tops with a little length or angled draping or something to add interest to the front bottom edge. Had fun improving my wardrobe to accommodate the new much more active me. Shell's right, too, about the support underwear giving lots of freedom, but I also sometimes do what Jason does: wear low underpants below my stoma and bag (mine's pretty high - not far under my waist) and just stuff the bag in my pants which are higher waisted and don't bind on the bag.

Eric's suggestion isn't as goofy as it sounds! At UCSF, where I had my ileo done, they INSIST that you walk around with a glued on bag for three days so you're not so shocked after the surgery. It's a great idea. also, you can tell a bit about whether the marked placement works for you. Since I'd had a lot of adhesions from all my prior surgeries, I didn't have much choice, but I was glad I knew how high it would actually be.

Two things were really helpful to me in the hospital: home cooked food and a lot of exercise. Friends brought me soft foods and things from the recommended lists so I could avoid the hospital food (dreadful, despite their best efforts),and that was such a treat. I'm not sure whether it was that the food was so delicious or that I had such physical evidence of my friends' and family's support! On the second day after my surgery I dragged that IV pole a mile, and walked at least that every day thereafter (until I discovered I could get the nurse to unhook the IV for a while!) When I went home on the 7th day, I was walking up a steep flight of stairs three times a day in addition to walking from 1-3 miles.

Lastly, if you've been treated with prednisone or other cortisones during the past year, ask your surgeon about the protocol for taking it three days right around your surgery. It's a protocol at most hospitals now and can help avoid some difficult complications later.

It's brave of you to consider this decision amidst all the investment we've all had in our J's. Good for you for deciding you need a more positive outcome: your maturity and thoughtfulness are evident in your posts! We're all right here to support you through it.

Barbara

Hey Molly,

I was devastated when I first saw my ileo and bag almost two years ago. I thought I would never be able to do "normal" activities again. I have found, however that I do everything before and more. I still teach everyday, spend summer on the beach, bowl in a league, travel and I don't need to worry about running to a bathroom. Life with an ostomy can be normal. Let us know how you do.

Thanks Barb, and everyone. I don't know how Molly feels but sometimes it is just hard to give up what you feel is normal to you especially since I am still pretty young (24). It does make it easier knowing that my husband doesn't mind the ostomy as much as I do. I had my 2nd temp. for a year and even though the ostomy was there it isn't prominent in my memories of that time period, except for a few exceptions. My greatest fear with surgery is putting my fertility at risk just as I am starting a family. I have no desire to do IVF(it scares me to death...I have issues) I see my surgeon wednesday so I will discuss the plan for the pouch removal and perm. ostomy when my baby is done breastfeeding in September and see what her and my GI have to say.

My first temp ostomy, although cured me of my dreaded UC was really hard to say the least. When I was forced in to the decision to have another "temp" ostomy I went in kicking and screaming. Well, I have had my loop for 8 years now and am feeling great. I still think about reversing and have had surgeries etc. to help me go back to the j-pouch. I think the fact that I am pain free and living a great life keeps me with this temp ostomy.....

I told mom I wanted one but she wants me to try Rhemicade (Infliximab) again for the fifth time I think. I don't think mom can accept me having an ostomy. Dad was cool with it. I guess I'll have to play this game some more.

Well Molly at least will know that you have tried everything if the Remicade doesn't work and as you have already done all the soul-searching and research into an ostomy it won't be such a big thing should the drugs not work.

I am still amazed at how maturely you are handling all of this. You really are an inspiration.

Luv & hugs

Shell

I was 26 and engaged when I was dx with UC and had j-pouch surgery 6 months later. It was very hard for my Mom to let me make medical decision for myself, even though I had lived across country without her for 3 years, was living with my fiance and had been supporting myself in all ways for 4 years. It is hard for Moms to let go under the best of circumstances and I'm sure yours is only looking out for your best interest.

At some point though, you'll need to take a stand and let her know that you need to be the decision maker - you'll know when the time is right. Make sure she knows you value her opinions but that in the end you have to live with the results of the decisions so you need to be the one to make them.

I'm now 36 and my Mom and I STILL struggle over these issues. Now that I have my own child and another on the way, I understand where my Mom is coming from and that does help a bit as we negotiate our relationship.

Hang in there and maybe the Remicade will work. If not, you have a great back up plan and all of us to support you through it.