Hi,

This is Janita again. I am still trying to decide about going permanently back to the ostomy and I know I have talked to a few of you about how your life has been after your reversals, the ones I have talked to have all seemed to have really postive outcomes and are very pleased with their decisisions. I was wondering if anyone else would be willing to tell me their stories about deciding to go permanent. What were your symptoms before the reversal? How long have you had your ostomy and how long did you have the pouch? How are you doing since the reversal? Did you opt to completely remove the pouch or did you just have it disconnected and left in?

I do really appreciate any input on this subject. I am currently trying Remicade and my doc says we should give it at least 2 months before we declare it a failure (it has been 2 weeks and not helping too much). He is also sending me to an endocrinologist to have other things checked due to all the symptoms such as dizziness, fatigue, confusion, weakness, muscle aches and pain, and just general felling of being unwell.

Thanks for any info.
Janita

hi Janita,
I don't have a permanent ostomy, but I've had my end ileo for over a year. I've had a couple leaks, but nothing that couldn't be resolved. I take a couple extra supplies with me if i'm out of town. other than that....let's see.... Eat everything? yup. feel great? heck yea. at first i was self-conscious about it, but no one notices or pays attention. only thing for me that's a concern is dating (i'm single). haven't tried that yet.

in the end it all comes down to this: Quality of Life. I'd prefer an ostomy any day over constant pain or dr's visits. ask me that a year ago, and my answer would have been completely different. it took me a few months living with one to feel this way and appreciate it.

it should be a big improvement for you. good luck!

Janita we've already chatted, and I think most folks here know I'm a big fan of my ostomy, but just to add to the thread in case anyone is reading that hasn't seen my previous posts.

7 1/2 years with my ostomy, 6 years without my pouch, 2 beautiful children since the pouch came out. Loving life!

Janita,
I began writing a whole big response to you but re-read fq's response. Really, to sum up.
"Dido" almost verbatim.
My end ileo will become permanent this month some time. And within the year I've had it I've done things I hadn't in the 14 years I had with a bad colon.

Best to you,
L.

Janita,

I had permenant illeostomy done last June. I am doing great! It was the best decision I made.

I had j-pouch for 7 years, with no luck. I tried every experimental drug possible, with very little or no good results. I finally made the decison to have surgery 1 year ago.

I had everything removed. I was also told I could keep things, if I ever wanted to be reconnected. But, by staying connected my doctor told me that I would have the bag and also still go to the bathroom, have possible irritation, possible chance of cancer, etc. I was tempted, because permenant sounded so scary. But, when I really thought about it, I new that permenant was the only way to go. If I tried for 7 years with no results, why would I ever want to reconnect? Also, I never wanted to have another surgery again. I swore this would be the last one. I just wanted my life back.

I had to mentally prepare myself. I talked to as many people as possible. I studied and read as much info as I could. And then I made my decision. It has been 1 years and I am doing great. I can eat ANYTHING I want to. I can go everywhere, without worrying about a bathroom. I can sleep. I can work without being in pain. It is great!

I have to be honest, I had some difficult days with depression right after the surgery and every once in a while I will feel depressed. Mostly I get depressed about putting more weight on and not being able to wear a bikiki anymore. It sounds so trivial..............These are such minor things to be depressed about. So, when I feel depressed, I just stop and think about how I used to feel compared to how I feel now, there is NO question about my decision. I feel better than ever.

Feel free to e-mail me if you have any questions. I would be more than happy to help. I was exactly where you were a year ago. I wish you the best.

Just wanted to thank everyone for their respones. Am currently waiting on a call back from my surgeon to ask how long I need to wait for surgery due to having Remicade infusions and have been on Vancomyocin for 2 months. Hopefully we can set the surgery up in the next month or two. I am so ready to get this done and over with and hopefully get to a normal life.


Thanks again,
Janita

Janita, Have you scheduled your surgery?? I just wanted to chime in. I had my permanent ileostomy surgery almost three weeks ago. It wasn't planned that way, I don't know if I had gone into it knowing it would be permanent if I could have done it, but I am glad I have. I went in for the first of my two J-pouch surgeries. When the surgeon had my colon in his hands, he decided he could not create my J-Pouch because my colon looked like Crohn's disease and not Ulcerative Colitis. Pathology confirmed his suspicion a few days later. So, I was given an end permanent ileostomy. I do still have my rectum and if all is quiet some five years from now, we can talk about connection he says. But I can tell you this, I am so surprised at how great I feel just three weeks after my surgery. At first I was devistated at the thought of having a permanent ileostomy, but now I am thrilled at the energy and normalcy that I feel. I also have a really great boyfriend and family. I am just so happy and I never thought this was possible. I hope you are doing well.

Elise

Hey
I had to go to a temporary loop ileostomy because of a fistula and perianal abscess that needed to heal. I have had my pouch for five years, but have been miserable for the last two. Since I went to this ileostomy in June, I can eat anything, and I feel better than I can remember. I very well may keep it permanently.

Hello Everyone,

I have been away for longer than I thought I would be, but I am finally home and getting better every day.

I had my permanent ostomy surgery on June 19th and had some bad things happen after that. I went to the emergency room 4 times for major dehydration, was re-admitted to the hospital twice (once for a large pelvic abcess and the second time for a major infection called VRE) with a total of 21 days in the hospital. I have been at my Mom and Dad's house for a little over 3 weeks trying to recoup and build my strength back up. I lost a total of 51 pounds in less than 6 weeks from all of this, but I am now on the way to full recovery and am able to do most things on my own but really get tired easily. The doctor says I am still dehydrating and need to drink lots and not to skimp on salting my food. Do not think I have ever heard a doctor tell someone to eat more salt, having a little trouble getting used to salting food again. Doctor says it will probably be another month before I am ready to return to work (I am a physical therapist asst.)

I guess because of all the problems I am really not used to the ostomy yet. I hope as I am feeling better and able to do things I was not able to do prior to the surgery and get brave enough to eat more things I was not able eat before I will become more comfortable with it.
I have eaten oranges and a few salads since the surgery. I have not had an orange in over 20 years and it was wonderful.

Sorry to ramble but just wanted to give everyone an update. I know in the long run I will be happy with my ostomy, but I just wanted to let people know they may have complications after the surgery which can be very scary. I really do not think I would have made it through this with the love and support of my family and friends, including all the prayers even from people whom did not know me personally.

Best wishes to everyone,
Janita

Hi Janita,

Your ordeal sounds very similar to mine. I had tried everything since getting my J-Pouch in 04 to get better. I constantly had Pouchitis.
I had my surgery to go to a permanent ileostomy on June 3rd. I too, had to be put back in the hospital for a pelvic absess. Had the drain for 6 weeks. I then was ready to return to work, only to find myself back in the ER. I had to have my gallbladder removed. I did get back to work this week.
Hang in there. It will get better.
So far my ileostomy has worked perfectly. I really miss all those cramps and constant trips to the bathroom. lol. Take care, Randy

Hi there
I ha my J-Pouch in 1997,having had many yrs with this i have had numerous anal stretches since then an past 2 yrs ive had many problems with the joining of my pouch to the anus,struggling to pass faeces,terrible itching more than usual,and my last dilation i had excrutuiating pain when passing bowel movement so i decided along with my surgeon to have my ileostomy back and boy am i pleased i did(wish id had it back yrs ago !!)i can now eat whatever i like, non more itchy bum,soreness thank god has gone,im soooo happy and dont regret my decision to have stumpy back.im now FINALLY in control of my life again !!!
i am fine with stumpy,ewe get along fine lol.
Im not having my pouch removed as i feel its an unnecessary op n ive had enough of operations,theres no pouchitis or anything so im leaving pouch in place,but i will never go back to my pouch,stumpy is permanent !!!
good luck with whaever you decide but having a permanent stoma isnt the end of the world,it may just be the beginning ?? i know it has saved me
god bless janine xx

Just wanted to thank everyone for their replys.
I am definitely feeling better and getting used to the ostomy. By the way my dad could not remember the word ostomy so he has named it "Tutu". Like everyone says I am now able to eat everything I have been brave enough to try so far without any pain or even discomfort. I bought popcorn yesterday but have not tried it yet. I can't wait to go on a vacation to see how well "Tutu" and I get along but I guess I should worry about getting back to work first.

Getting better daily,
Janita

Janita,

Isnt it great been able to eat what you want,i REALLY missed Strawberries and boy have i made up for lost time,everyones been treating me to them.My mu chopped some up and brought them to me whislt i was in hospital..WITH FRESH CREAM,YUMYUM LOL.
In fact i very daringly had beans and jacket potato 5 days post op,lots of wind but i enjoyed them lol.
Glad you are feeling well again,hope you continue to do so.
Luv Janine

Janine,

I know what you mean. My YUM was oranges. I had not had one for over 20 years and my mom said I sounded like I was enjoying that first one just a little too much. As far as beans, my best friend has invited me over for beans, cornbread and fried potatos tomorrow night and I can hardly wait. I cannot even tell you how much I have enjoyed several salads since the surgery and plan to eat lots more of them. I sure I will make the rest of my family sick of them but they will just have to deal with it or find something else to eat. I think I will have stir fried veggies for lunch today with an orange for dessert. YEA!!!!!

Hope all continues to go well for you, also. Let me know what other goodies you get to eat.

Janita