Just wondering how many others had bad experince with j pouch surgery's and worse than they where before they had it????



I no longer can have sex with my wife have ED always in pain, have a temp ostemy and it even leaks daily... My foot has perma nerve damage due to surgery they left me swallon from coma and it damaged my foot and my private's causing ED and nerve damage to this day my testicales (sp) privates give me pain and I tell the docs and they shrugs shoulders at me I never had any of them problems before surgery.


I had uc pain and bleed alot now I have all the problems and 10 new ones go figure i'm getting a perma ostemy but even if I do I still ahve all the other problems that can not ever be fixed and they aren't even trying to get me any relief to having a normal life slacking badly...

Wish I never did surgery all together should of suffered other way was better off just wondering if any others this bad off with problems and regret surgery or i,m I one of few unlucky people that got teh shaft.


What bugs me to I get ostemy nure's that shouldn't be a nurse at all they aren,t good at helping either even if ya change nurse's none seem to helpful or happy about there job I dunno if it's this crappy state or my bad luck or what I can't win for anything. I have a leak and my ostemy nurse say's what do u want me to do about it??? i'm like ummm help me fix the leak and she say's we tried everything I say what do u want me to do and she say's deal with the leak's I change 4-6 times a day...


I give up to no end I hope this surgery 7th one in 1 1/2yr does me some darn good so sick of this Bs... Had to rant to someone thanks for reading.

Your situation does warrant all the concern and upsetedness you expressed. Did you go somewhere to get a second opinion before you decided on a permanent ostomy? It might be a stretch, but I'd certainly check with the gurus at Cleveland Clinic before undergoing such a final kind of surgery. Nothing wrong with ostomies. But, I'd want to be very sure that is the only answer for me before I went back to one. Changing your appliance as often as you say you do is unacceptable. There are techniques which give everyone much longer (days longer) wear time. It is often trial and error but the answer for each of us is there. You probably need to consult with another ET nurse. The answer for me was to use Smith+Nephew Skin Bond. A full week's use of my appliance and could have gone longer. Skin in perfect condition and I was so relieved! Best wishes to you.

hello... well this is a place to rant where you should not be judged. everyone feels sorry for themselves sometimes. i understand you are in pain and just need to vent.

umm i think Mr ewar woo woo's point is that things seem grim right now but it could always be worse...and things may seem very bad right now but there are people out there who can help you out and give you advice and maybe things could get better for you.

what i would like to say is please don't lose hope...you have every right to be upset and frustrated, but i think with a little more practice and experimentation with your ostomy you will get a longer wearing time and start feeling more positive. keep looking for a good nurse to help you and try different products. maybe try some different pain killers for the nerve damage...and try other ways of being intimate with your wife. life is not over so try to enjoy it. i know- easier said than done. don't give up.

ty for the replies I have plenty of experince going on 6yrs and now that money is an issue being off work for 6yrs going to cleveland is not an option and far as ostemy nurses we are limited here trust me I have tryed everything known to man to fix these problems I don't sit around feeling sorry for myself as i'm a person who took care of them self there whole life .


So trust me I have tried everything i,m able to folks who are going through this have moral support and finacial from state friends family or partner I have none of those so my getting help has been limited you can only do so much with no money and no aid ....


I want to do some many other things but certain things do not allow it some people say they would do what ever well some people are so fortunte to have that kind of pleasure not trying to be rude but I get upset when people think they you do not exhaust all options u just sit there feeling sorry for your self well its not the same for every one , every situation is differnt for each of us , ostemy mates, or Jopouchers.


So Any how I just come here to blow steam get advice from others to see if they may experince these issues and see if other's may go through similair experince so I can understand what is going on. Thnaks for you understanding.

I have no choice on wed sept 10th have an ostemy and some peopel say you do have one well get in my shoes then come talk to me I have none and i'm not happy my whole life since 17 I have taken care of myself had my own house at 18 never had family support so I know survilablity in life so I will have to take what is coming at me and deal with it because there is no help for people who have no family in this state , or county I live in so i'm force to do this.

So oh well they better do it right and give me some relief from these leaks because its getting old and this medcial perfession that i,m forced to go to has failed me many times, I guess i',m hoping they do it right for once as i,m forced to go to them...


be well all cya in a few weeks .

Hi Jeff, its ewar woo woo here, edward woodwood with no "D"s (just looking for a comfortable handle)
Having read through your posts I feel I may have been a bit hard on you last i posted?

Yes you do appear to have some problems there?

sorry we use different terms here, I believe you call a flange a wafer?

anyway is it leaking under the hydrocoloid collar? if so have you tried using microporous tape to overlay the edges of the flange tape extending the tape to skin area, i find that often helps,
the foot thing, yes i got that, it often results in cramp and swelling, gets better with exercise.
sex? well there are ways have you spoke to your doctors?

Hey, alot of folks don't look forward to a perm ostomy - it's okay to be on that side of the fence. Even though I had family, I had to take care of myself cuz no one wanted to deal with it. I did have some great friends, but some were uncomfortable. I get what you're saying. You may be surprised to learn alot of us had to deal alone - that's why you can vent all you want in this forum venue.

Sex - that is so hard on some folks as well. Have they tested your hormone level to see if you are producing testosterone? Sometimes it's not emotional causing the ED.

The hard thing is we sometimes do not have a choice. It sucks, totally. But, if you want to live you have to make those hard decisions and somehow get through them, minute by minute then day by day.

And, unfortunately UC also comes with alot of types of arthritis, so many in this forum (including me) suffer with pain daily.

Acceptance is hard to find - but once you do your life can change. Be well!

quote:

not trying to be rude but I get upset when people think they you do not exhaust all options u just sit there feeling sorry for your self well its not the same for every one , every situation is differnt for each of us , ostemy mates, or Jopouchers.

well im sorry if you were offended by my earlier post then...i was not saying that you have not exausted many options or tried to help yourself...im not saying you are lazy or helpless....i only wanted to point out that there is nothing wrong with feeling sad about your own situation. also, i know you may have tried many different things to stop your ostomy from leaking but there are always new products to try and people on this site can give you valuable tips that your nurses maybe cannot...

quote:

this medcial perfession that i,m forced to go to has failed me many times, I guess i',m hoping they do it right for once as i,m forced to go to them...

i understand how hard it is when past surgeries have not gone smoothly to be positive but it doesn't mean the next surgery will go badly. i wish you luck, and a speedy recovery.

From what I've learned from people on this forum, having a permanent ileostomy is so much more a positive experience than having a temporary one. It sounds as though there is almost no comparison! So, if that is the route you go, it sounds as though some of the challenges you've had with a temporary "set up" will not exist with a permanent one! The hardest part of all of this surgery (over the past 7 years since I had Step 1 of 2) was to accept that no matter what, my "bowel" function will NEVER be the same as it was when I had a healthy colon. Not to say that what I do have (a J-pouch) isn't wonderful (for me)! It is just DIFFERENT!

once again ty for replies and nooep didn't think anyone was rude I just point thing's out fromw hat I read from other post's also . far as My ed its from them damaging the nerve's during surgery . I have tried every test under the sun for ED problem and seen teh doctor for it like 30 plus times they want to try a few thing's but it cost out of pocket money as I do not have I was teh bread winner with em out of work for 6yrs its killed us we lost our house that I had since 18 and worked for and we lost cars , my credit is destroyed completely...

I have 37 surgries and my body can't keep taking them and none go well so that's why i tend to have bad attitude towards it i'm 33 and had 37 so far and 38 on wed so ya I get upset because it never fails something always goes wrong.

\My sister was healthy 30 yrs old in 1999 and a doctor screwed up takinga rod out due to car accdient and she went into coma died a month later so I 'm sorry if I have bad attiude with my family and myself nothing goes right with docs never I lived in the hositol and honestly sick of it to no end I FIGHT TO HAVE A GOOD CAREER AND GOOD LIFE AND SOMETHING FROM MY HEALTH KNOCKS ME back...

What annoys me the most the only person in my family who had a heart is dead she would of cared about me and now she is dead and I GO THROUGH this alone. I did nothing to me family to deserve this I always been the peace maker and help everyone when tehy got in trouble I need it and they want nothing to do with me for no reason being selfish etc...

When I was in coma my mom told everyone that mywife said I died and then they rush to the hositol thats how messed up they are they tend to make thngs worse for me which piss's me off this time I plan to block them all from any info and the hositol because they don't try to help they try to make things worse for mywife I can't stand heartless, selfish, greedy people never have myw hole life makes me angry.

When I could afford it I donated thousands to cleft lip surgeries for peopel who could not afford them etc now I need help and can't get any help I used to donate thousands to cancer patients , really liek to know where all taht money goes may not be alot but just seems wierd I helped all I could when I could afford not I ,m in bad shape, physical and fincially and I can't get a dime just doesn't make sense then I hear how many got help what i'm I doing wrong??

I feel I should never help again??? seems bad attiude but cmon if I do good my whole life nothing seems to go my way now that i,m hurting no matter what I do I think life everyone who is well off should help those in need I been that way my whole life never really needed help ever.

The last 6yrs for my wife and I been bad we been married just over 6yrs and right after I got sick being married I should be enjoing life my wife and I never had any help from anyone, its always a struggle i'm a mechainc and all my cars are broken down , I just got one fixed with the last of my money had to sell more stuff that I had when I had stuff.


WE sold qabout everything that I worked for I built a car from teh ground up since I was 13
I had to sell it in pieces for cheap for money made me cry all that hard work gone...Was my dream to built my own race car since I was a small boy and did it almost had it the way I WANTED FINALLY AND HAD TO SELL .\
I know just stuff but it messes with ya everyone says u can pick your self up well my career is an auto tech with all my health issues I dunno if I will ever be able to i,m not just an perma ostemy. I have nerve damage to alot of my body now a tolernce problem hardly any meds help the pain...

Far as wafer goes I have a hole that had 7 surgries redo on my stomach not much left so thats why I can not seal well it sits right where the wafer is so of course a hole there your gonna leak I have used many supplies I have 15 boxes of supplies in one of my bedrooms covers half of the room from supplies.

So trust me when I say I have tried alot my doctors say we never seen anything like this ET nurse same thing ET nurse gives me hard time becausxe she doesnt know what to do so instead she treat me like this si my fault that my body is destroyed If this surgery fails I hontly dunno what I will do as there is not room for a wafer they suppose to do plastic surgery every time they do it fails and the wound gets infected and re opens so plastic surgery fails


thats been my problem guess nobody understands its not your typical leaks I have an open wound that heals badly and I have mt evernest going on. SO they is not where really to have an ostemy its horrid.

They have tried to fix 7 times in the last 8 months.
They going for a perma this time take out Jpouch as I feel better , but i,m addicted to narco's I have massive nerve damage to foot , stomach area, and private areas so in pain most of the time, I feel like the UC is not effecting me any longer its the after math from problems... It just never stops and piss's me off soem times I try and be postive then something goes wrong daily then I get angry because it just won;t quit , then something rl will go wrong same time like car breaks or a un for seen bill etc or we lose our house where we get evicted becaus eno money.

Then some times we eat rice for a week or so no money for food thats how bad it is some people think how can it get that bad trust me it can , when you get hardly any money no help from state, family and wife doesnt make more than 6 dollars an hour.

Trust me it don;t go far.I have right now 4thosuands in cars repairs and we can't get another car our credit is ruined... We did fix one so we have that until it breaks..Then we are screwed for good as we have nothing left , i tell my doctor please!!! get me better i,m gonna be on the street again we need me to get better I wanna work !!!I made 100,000 a yr now nothing 1 week back would get us going darn it !!!

Man I pray this time this will fix me I ask my doctor to please don't cut cornors this surgery has to end all problems he got the sickness out now fix the leaking problems and get me to see a doctor for my nerve, pain and that damn urlgoist needs to fix my ED issues grrr I know they can but if you don't have alot of out of pocket money your screwed..

Which is crap I didnt cause this problem or have bette rsurgery they should freaking pay why do I have to!!!! anyhow sorry for the ranting I just can't take this load anymore it needs to end wed and give me hoep to get me back to work by atleast after the first of the yr we won't make it fincially if he does not my wife and I will be in detriot walking the streets .

We sleep in a car before for weeks becaus eof this and I honetly don't wanan again . thanks for listening.

Jeff, you really have been having a hard time, both physically and emotionally. I wish I had a time machine so you could have a "do over."

You've got plenty to be angry and depressed about, no doubt about that. But, the good news is that you still care and are still communicating, even if it is a rant. I can understand not being able to afford more tests and treatment. Out of pocket copays can be really expensive for some things, especially if you go out of network. I can also understand your skepticism that something will go wrong with your surgery, since it always seems to for you. I have to tell you that you have a lot of strength and determination to go forward with more surgery when you feel very certain there will be complications. That tells me that you have not given up and there is much more fight left in you.

Even though your extended family seems pretty worthless to you, your wife does seem to be there for you. For many people, that is enough.

I will keep my fingers crossed for you that this will be a successful surgery for you and you can finally have some normalcy to your life. You may not be able to do the same work you love because of your pain and dependence on narcotics, but you should be able to be employed. Life is change. We cannot dwell on the past and can only go forward.

Good luck,

Jan

You have every right to be upset.
I wish I had the answers and the money to help. I am praying for surgical success and a return to health.
God bless you and your wife!

I think you should get a second opinion. Go to Cleveland Clinic they work miracles!! I'm so glad I went there for my surgeries. I seen a Dr. Church he was wonderful!!! It is a big hosptial and yes I agree there are alot of nurses who aren't very patient with their patients maybe it is because they are so short staffed! I had a few nice ones and some really bad ones too. If you don't like your Stoma Nurse complain until you get one that will help you out. You shouldn't have to be uncomfortable there are appliances out there for everyone you just have to find one that works for you. I got so attached to my Stoma that I even gave her a name. Her name was Rosie my sister helped me name her. She said it reminded her of a rose!! So please don't give up please keep on trying it will get better I'm living proof... I'm still trying and will not give up.

Lordy have you ever been through the ringer.. I wish I could help all I have to give you right now is prayers and I have been praying as I read this topic you started.. I also think you should check out a website called Ostomyland..
http://ostomyland.com/mainsite/
almost everyone there has ostomies or has had them some of the people have had a ton of surgeries and maybe just maybe someone there can help you with a system they have been using for all the scars, dips and groves to help with the wafer sticking to your skin.
Nothing anyone says can take away the pain you are going through, we can however be a sounding board and a shoulder to lean on even from a distance.. I offer you my ears anytime you need to rant or just talk. I wish you all the best with this next surgery.. and as one that had an end ileo and then a loop ileo OMG there is a HUGE difference in how to care for them, the end was 200 times easier to get the wafer on in a timely manor.

Jeff I am just wondering how you are doing and if everything is ok since your surgery, I checked and there are no new posts so I pray everything is going ok for you.