~Love from your Doe
In my book that is a good thing and I couldnt be any happier, but know that I held on to every word the doctors had told me and i listened with all the HOPE we all have as sufferers of a chronic illness and today, my illness journey is over (took 24 years ) and I love my Ostomy and all the freedom it gives me and never an issue, and never a cramp and never a bad bowel movement , and no pills and no doctor visits..YAHOOOOOOOOOOOO...
Yes I have a pouch and it doesnt get in the way of my life in anyway...Did it take some time to adjust, YES, but once there , nothing but freedom...You should know that I am an ex UC sufferer, so the ILEO was my salvation...LOL......IN general , the Reversals, they have proven to not work as well as presented ...
My surgeon was trying for a J-pouch for me, but due to massive adhesions from previous surgeries and chemotherapy, there was no room for a pouch, so he gave me a permanent colostomy. He had been my surgeon for many years at that point and had my full trust.
Make sure you see a colon and rectum surgeon for any future work you have done. Many general surgeons think they are up to handling this stuff and they are NOT!
My own temporary colostomy reversal back in 2004 did not work out well. I was always in pain, and ended up with a nearly ruptured colon. Yet I have known people who had J-pouches for 20+ years and liked them, and only when they got to be in their 50s did they go back to having a pouch.
The biggest lesson I have learned in life is "never say never". Good luck!
You say you have know people who have had J-Pouches for 20+ years and liked them. If you could share with me who they are so that we can document the journey of a J-poucher with all its side issues and complications , so those contemplating it are getting advice from those living with a J-Pouch.
The whole forum knows my take on J-Pouch and Its a life mission for me to find who these happy J-Pouch people are as I am 4 years into being and Ostomate and EX - J-Poucher and I still havent found ONE.....Yes I will say it again I havent found ONE........
I want to be proven wrong that they do exist but until I find at least one, I dont think they do.......Its like the Wizard of OZ-tomy and all the negative hype and hearsay about Us as Osotmates is completely false and only in the minds of those doctors and the establishment perpetuating a fear that doesnt exist, while the doctors are promoting a goodness of J-Pouch and reversals which I believe doesnt exist.
ITs completely backwards in my opinion, and I will try and be as objective as possible when I do meet the Happy J-poucher and get an interview with them so to speak, to hear it from the horses mouth. But many of us on this site can speak as EX J-poucher s because we were there, and we were unsuccessful in our juorney to remain "normal" only to find and end up with the imperfection ( which we all had feared) and wonderfulness Of Permanent Ostomy.
Lets help those contemplating the reversal, but I do ask that we give them opinions and advice from both sides of the table....The Ostomates are at the table, now lets get some happy J-pouchers to add to this conversation...I need your help to do that.
what you do not feel tortured like pain and itching around the hole intestine?
if I undergo surgery(become ostomate)
then I will be tormented for life
It seems that my very recent surgery might well have been successful (probably a bit too soon to tell, but looking pretty promising so far!)
If this is the case, then I would probably be looking at a reversal of ileostomy .... In theory I do not have any bowel disease, but as I now have Fibromyalgia, IBS is quite prevalent with this syndrome - I often feel nauseous etc but who knows whether or not that would be a problem as my ileostomy could well be masking any symptoms ..... Also my anus has been refashioned several times - not sure how well my pelvic floor and rectal muscles will hold up either?
I am no longer as healthy as I was when the stoma was formed; I now am diabetic as well as having the fibro, pernicious anaemia, sleep apnoea, osteoarthritis and spinal and mobility issues .....
The next lot of surgery will include a huge hernia repair also.
My quandary is - do I go ahead and risk a reversal with the possibility yet again of being faecally incontinent or having IBS, or do I have a relocation of permanent stoma with the prospect of starting over with a new stoma and a new hernia site? I suppose that with either surgery there is the risk of infection, adhesions .......
I know that it is my decision whatever but would welcome any thoughts or input of bits I may have missed out or not thought about ....
Thanks guys and gals
My heart aches for you and your journey. I do not know of your illness, but for alot of us on this site, getting the ostomy was to releive one of pain, or be set free from chronic illness or to save ones life from death.............PERIOD
For me and many others it is a joy and life giving and a wonderful alternative to the pain and misery we all have endured.........
There is one thing I will tell you for sure..........
DO NOT LET THE DOCTOR WHO SAYS YOUR LIFE WILL BE MISERABLE IF YOU GET OSTOMY, PERFORM YOUR SURGERY;.....PERIOD
You need to share more of your illness and journey and get an interpreter, so you dont conitnue to suffer with questions and answers you are looking for , but cant express your questions the way you would like or as quickly too.
In principle I tend to agree with you.
However I have had a J pouch going on 2 years.
So now you do know a person where it has worked.
I will say this also . I researched it to death. I came to the conclusion if the intestinal problem
and ostomy were due any of the following do not try the J pouch.
I am not looking for a j-poucher where it works........The doctors will say it works as long as poop is exiting your bottom, regardless of how many BMS, and consitency and the pouchitis that comes with J-Pouch.
I am looking for a j-poucher who is thrilled and happy to have j-pouch. Who has a decent BM and not too many. As you will find many happy ostomates who are now pain free,
continue on with your sharing Juno
Bowel movements? How many? Consistency?
toothpaste thin? thick? oatmeal consistency?
any pains? any pouchitis? and accidents?
any urgency? can you be stuck in traffic and not worry?
any hospital visits as a result of pouchitis?
any medicine to take to keep in check?
Share Rick if you dont mind?
Thanking you in advance
Last edited by beyondpar on Fri Oct 01, 2010 9:47 am; edited 3 times in total