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During my surgical journey was the debate of getting a jpouch or permanent illeostomy.this played on my mind alot as two members of my extended family have the bag but I don't know anyone with a jpouch.

After going through 13 months with the bag and 2 months with the jpouch I can't understand those that never gave the jpouch a try and went straight for a permanent ileostomy.I remember one guy saying he had done his research and decided on the permanent ileostomy and barbie butt.And others agreeing with him and saying they would rather change their bag than their pants.Event though many times I had to change my bag and my pants and would rather just change my pants even though I don't have trouble holding on.



It is strange that you can decide what you think is best when specialists probably know better.and you can choose what many would say is a mistake?

Last edited by Former Member
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@Kmiller posted:

I suppose for some people they just want it over and done and don't mind the bag. For me, I had to try the j pouch and am glad I did. Still some issues 10 months in, but I will get there. To go to the ostomy with no going back, definitely not for me.

I agree. I am very happy I tried the pouch as well. I would have had regrets had I never tried the pouch, I am still happy with her too

I was raised by a mom who always said that she would rather see me dead than with a bag (I have been sick since birth so it has been a long journey and I had a colostomy from age 2-3).

At 18 I opted for a K pouch which was still very experimental back in 1979 (the ancestor of the J pouch, an internal ileostomy with only a tiny stoma outside)...I never regretted it. And my mom never forgave me. Any outside manifestation of my disease was a failure to her...

I have had to fight to keep my pouch. Surgery after surgery, repair after repair...because it is important to me...but I can totally understand that some people just want to get on with their lives. And they are probably right!

Maybe if I had not been 'polluted' with my mom's opinion I would not have been so tenacious...we all have to live with what works for us and makes us happy.

I hope that the 2 of you (you and your pouch) live a very long, happy and healthy life!

Sharon

@skn69 posted:

I was raised by a mom who always said that she would rather see me dead than with a bag (I have been sick since birth so it has been a long journey and I had a colostomy from age 2-3).

At 18 I opted for a K pouch which was still very experimental back in 1979 (the ancestor of the J pouch, an internal ileostomy with only a tiny stoma outside)...I never regretted it. And my mom never forgave me. Any outside manifestation of my disease was a failure to her...

I have had to fight to keep my pouch. Surgery after surgery, repair after repair...because it is important to me...but I can totally understand that some people just want to get on with their lives. And they are probably right!

Maybe if I had not been 'polluted' with my mom's opinion I would not have been so tenacious...we all have to live with what works for us and makes us happy.

I hope that the 2 of you (you and your pouch) live a very long, happy and healthy life!

Sharon

I am 100% sorry that your mom said that to you, you did not deserve that at all. I was abused by my mother too, but we are survivors of abuse, never let abuse overcome you, be different than your mother.

Let me be the one to say, "I would rather see you alive and with a bag than dead."

Last edited by Lauren Of Emerald City

Yeah my Mum and Dad said to keep the bag a family secret and not tell anyone.I said it's not something I was going to broadcast but I'm not going to be ashamed of it.but literally everybody who found out about the bag blamed me for not eating well or over drinking.even though I was 70kg and had cut back my drinking the year prior.My mum also said evening primrose oil would have cured me.and my Dad took me aside and said not to talk about my condition in front of my mum as it upset her.

Last edited by Former Member

It always makes our lives "so much better" when our families are against us too! (why oh why do they not see the damage that they can do to someone who is already fragile because of the disease????)...thank God I had 2 best friends...I do not know how I would have survived life without them...both in ancillary medical fields so that I never had to worry about telling them the grimy details or grossing them out...that can make all the difference in the world!

We cannot choose our families but we can choose our friends!

Sharon

@Former Member posted:

Yeah my Mum and Dad said to keep the bag a family secret and not tell anyone.I said it's not something I was going to broadcast but I'm not going to be ashamed of it.but literally everybody who found out about the bag blamed me for not eating well or over drinking.even though I was 70kg and had cut back my drinking the year prior.My mum also said evening primrose oil would have cured me.and my Dad took me aside and said not to talk about my condition in front of my mum as it upset her.

I am sorry that happened to you Chook. You deserve better than that, do not settle dear.

Yes but it made me stronger as I told them that the bag is anot something to look down on as it has saved countless lives and if another family member gets sick they can look at my journey as an example.

There is only one person who is with us when we are born,through our best and worst times and when we die and that is us .

Last edited by Former Member
@Former Member posted:

Yes but it made me stronger as I told them that the bag is anot something to look down on as it has saved countless lives and if another family member gets sick they can look at my journey as an example.

There is only one person who is with us when we are born,through our best and worst times and when we die and that is us .

When I had my bag, my dad never minded me showing my bag. He was never embarrassed by me. When we went out together, he never made me cover it. He has a bag now and I am not embarrassed by him either. (Corinthians 13: 4-8)

I am sorry for everything you went through; I am so happy you were not defeated. You are so strong

I am so proud of you for just being here and being okay. Do you still talk to your parents???

Last edited by Lauren Of Emerald City

I agree Chook. I had to try the j-pouch, and I’m glad that I did. This year is my 10th anniversary of my j-pouch, and I have had few problems with it (pouch iris once in 2012 and a few years, off and on, of butt burn).

I have a somewhat unique perspective on this issue. My father was diagnosed with UC when he was in his early twenties. When I was 5 years old, he had to have colectomy with a permanent colostomy. In 1972, that was his only choice to save his life. I am so glad that he made that decision. It hasn’t always been easy for him (leaks, hernia and issues with stoma), but he is a healthy 82 year old who just received his second Covid shot!!!

Ahh, family.

My non-medical dad tried to talk me out of surgery, bc he saw some medical weird show on TV about a woman who had a parasite but was misdiagnosed for a long time. This led him, a former materials scientist with a Ph.D. (um, really???), to tell me I had a parasite, not biopsy-confirmed UC, and that I shouldn’t be getting this surgery.

He even enlisted my uncle, a gen/vasc surgeon, by feeding him a completely false history; I had to call my uncle three days before surgery to get my dad off my back. I concisely described the actual medical course of events; he agreed I was doing the right thing. But he gave me a really hard time about going for the pouch, thought I should just do the ostomy and be done with it. He gave ostomies to his GSW patients in his rural practice, and most never came back to get them reversed. (I believe that’s not because of loving the ostomy over a normal gut, but bc they didn’t have the money. He just figures they were okay that way, but they might have gone to a charity hospital to get it reversed...)

Anyway, what he didn’t understand was that I have really badly sensitive skin that hates most adhesives, so even the temporary ostomies were... awful. Leaked when I’d operate, and I’d be running to the bathroom with a handful of tegaderms to patch it up. There was no way I could do that permanently, not when even the hypoallergenic wafers caused reactions over time. (type IV hypersensitivity, nothing you can do but avoid.) Wasn’t better with second reconstruction, even with newer materials; I became allergic to those, too.

Dad likes to ask me how I’m feeling when I’m recovering from surgery, but he doesn’t actually want to know. He wants me to say I’m fine when I feel like hell. I finally had it out with him one day; now he knows not to ask, unless he wants the truth. I’m not here to manage his expectations, only my own.

My aunt (another non-MD who thinks she knows it all) kept trying to tell me her weird diet managed GI occasional upsets (which probably are due to a parasite) was ‘just like yours’... as someone who was up to 9 surgeries for this (not counting all the scopes), I really didn’t want to hear that from someone who thinks GNC is where real medicine happens.

My mom finally realized the last time we were together (after years and years of nonsense) that her old-wives’-tale derived advice doesn’t help, and that I will figure it out better without the distraction. I think watching me get really sick with hyponatremia and then figure it out and rescue myself was what convinced her that I was better at this than she was. (Not the medical degree or the years in practice.)

My sister knew UC wasn’t contagious, but still changed her plans for a visit with her baby after my diagnosis, ‘just in case’. Yeah, whatever. Went to the aunt’s house instead, and when I confronted her about this, she told me I could go there. 10 hour drive, last minute, and oh, I’m not contagious anymore?

If I sound a little bitter, it’s because I am. Family is supposed to be your support system. They’ve gotten better (mostly) over the past ten years, but there are still some serious issues w Dad particularly. I love them, but I’m glad I live alone. It’s going to be a challenge when I have to be around them more often soon; moving back home, will have to stay with parents for a bit until I can find a house in this ridiculous market. (And then they’ll move in with me.)

I know the post was ostomy vs pouch. It’s a personal decision, really, and my most recent and best surgeon framed it as such. One isn’t better than the other, if everything goes well. It’s just that there’s a bigger chance of things going wrong with the pouch, especially in inexperienced hands. In the right hands, though, I think both are really good options. Just have to make sure you go to the right surgeon. I didn’t, the first time.

Anyway, family issues raised by others really spoke to me. Gotta let go of the grudges at some point; they aren’t healthy. But it’s hard for me to forget, even if I have forgiven. There is so much more I haven’t posted here because it makes me sick to think of, even now.

Yeah I cut my family off and blocked their phone numbers after I told them on my first day back at work my butt was burning and sore and they told me I needed to harden up.but after what I went through you say that once and you don't say it to me again but since then they came back asking me to unblock my phone and they are sorry but it's too late as I realise my life has so much less aggression without them.Im alot happier without them.

@Former Member posted:

Yeah I cut my family off and blocked their phone numbers after I told them on my first day back at work my butt was burning and sore and they told me I needed to harden up.but after what I went through you say that once and you don't say it to me again but since then they came back asking me to unblock my phone and they are sorry but it's too late as I realise my life has so much less aggression without them.Im alot happier without them.

You finally answered my question!!!!! I am happy to hear that!!!! You deserve better my friend

People who know a little bit think they have THE answer. I had a “friend” who tried to talk me out of colectomy surgery, by telling me it was all stress, and maybe I should file for divorce instead. Well, I am still married to my high school sweetheart nearly 25 years later, and SHE is the one who is divorced!

I think it was a case of projection.

Jan

Athena,  l love your name....don't know if it is yours or just your handle but it is so beautiful.

Yes, we think that parents are supposed to be there to support us no matter what but it just is not the case; They are there to bring us into the world and feed & water us... no one ever told them that support was part of the deal...At least ours.

Parents are not experts. They did not get diplomas in parenting. They wing it from start to finish. And they do their best no matter how limited that best is.

My mom was an R.N and surgical to boot...she specialized in guts...so she should have known better but...she hated defects, a chip in a $500 cristal plate? It went straight to the garbage...an ostomy was a visible defect and she couldn't stand it...it was her personality...nothing else...she could not handle defects and could not get past it...life needed to be perfect, she needed to be perfect (she got pretty close) and if I could not be perfect she would have preferred me dead...it would have given her the role of martyr that she craved...mom would buy me 'sexy' nightgowns for the hospital, put perfume and makeup on me post-op so that I would be 'more attractive' to the doctors...she felt that it was the best way to get good treatment...was she nuts? No, it was just the way that she was built.

Many of us have or had imperfect parents and friends. They ask the wrong questions or give the wrong advice or shun the details...you cannot blame them because they do not know. They do not understand because it is not happening to them. Humans learn from experience and if they do not experience it then they cannot feel it...

My best friend's parents ended up in ICU due to covid...her mom survived but her dad didn't...for the 7 days of mourning with her sisters & mom still hospitalized I sent meals to the house. It is what we do...she was overwhelmed by gratitude. I find it just a normal gesture between loved ones.

Afterward, she said that she was embarrassed that she had never sent meals to me when my parents died. I explained that she didn't 'know'. She hadn't experienced it so she couldn't understand it. It just is.

It is like being angry at someone who is colorblind for not seeing colors...treat them like children, explain...but if they do not wish to hear or listen then relegate them to a corner for a 'time out'! (it could be weeks or months!)

They may never learn and that is fine...if or when they become toxic cut them off...I have had to with certain people and have never regretted it.

Good luck in your journeys, all of you...make the choices that are best for you, your bodies and your health...and fight for what you believe in, no matter what.

Sharon

Sharon, you certainly have achieved the awesome ability to forgive. Holding a grudge is so exhausting. Plus, it creates its own unhealthy stress that nobody needs in their life. Definitely better to think people don’t intend to offend and forgive their foibles. But, sometimes it is necessary to simply remove negative “influencers” from your orbit. You can forgive, but not change people.

Bravo to all survivors!

Jan

I hear you guys. Family members who just don't get how much we struggle, can say the most insensitive and non-productive things to us!! Sometimes I feel like shouting: "After you've had this disease for 25 years, with years of pain, ER visit, embarrassing accidents, etc. and so forth, THEN give me a call and we can discuss options!!!" It's not easy, but I try and tune out those who think they have all of the answers, esp when they don't TRULY listen to what WE, the 'experts' (at least re our own bodies) have to say!!

Hang in there everyone <3

Thanks Jan,

I am no angel or martyr...just had enough experience with toxic people to know which ones are worth the effort and which ones need to be put out with the trash!

My world has shrunk considerably over the years and my circle of friends along with it. I accept the good in people who possess it and even if they have a 'chip or crack' that is ok too (I've got my own!)...as long as they are not intentionally trying to hurt or injure me.

I do not need to agree or understand everyone to accept them..or visa-versa...I just need to put them in little boxes. Friends I choose, family I accept (within limits), business partners and associates I deal with and hubby and co...well they get a pass most often...(and yes, I had friends who told me to leave him, divorce him or kick him in the butt...but he stuck by me through thick and thicker...and it turns out that time does mellow some people...confinement here proved that I was right...we laugh more than cry, scream if needed and play often...he was, effectively a keeper!)

Age helps...I run slower and judge less.

Hugs to all

Sharon

@skn69 posted:

Thanks Jan,

I am no angel or martyr...just had enough experience with toxic people to know which ones are worth the effort and which ones need to be put out with the trash!

My world has shrunk considerably over the years and my circle of friends along with it. I accept the good in people who possess it and even if they have a 'chip or crack' that is ok too (I've got my own!)...as long as they are not intentionally trying to hurt or injure me.

I do not need to agree or understand everyone to accept them..or visa-versa...I just need to put them in little boxes. Friends I choose, family I accept (within limits), business partners and associates I deal with and hubby and co...well they get a pass most often...(and yes, I had friends who told me to leave him, divorce him or kick him in the butt...but he stuck by me through thick and thicker...and it turns out that time does mellow some people...confinement here proved that I was right...we laugh more than cry, scream if needed and play often...he was, effectively a keeper!)

Age helps...I run slower and judge less.

Hugs to all

Sharon

Why did your friends tell you to leave your husband?

Lauren,

People only see the outside of a couple, their 'public façade' but not what goes on behind doors. My husband is a suit & tie, critical, demanding, perfectionist (an Architect by nature), on time, and sees the world in black & white.

My friends hate rules, lunch times, and regulations. They see the world in colors and like to sleep in and stay out late, don't mind showing up 2hrs late for lunch etc.

The 2 are like oil and water. They find him stiff and strict, he finds them rude and undisciplined.

But I can't live with someone who is irresponsible, spends everything, saves nothing...I need someone who obeys the rules. My health means I have to plan everything 3 steps ahead, weeks in advance. I cannot go camping or suddenly run away for the weekend to a cottage without a bathroom.

So, I see my friends on my own or as couples...those that love me understand him...he needs rules to feel safe. He needs a nest egg not a Rollex or Mercedes. I need a man like him. I'm happy with a cheap car but enough money to pay for my surgeries. That is security to me.

You learn to understand that not everyone mixes and plays well together. You cannot change them so you learn to see them separately.

Years have gone by and he has mellowed. He holds my hand and cries when they wheel me into O.R. Freaks out when the doctors take too long but brings chocolates to all of the nurses the next day to apologize. He changes sheets and does the laundry, washes my hair, and dresses me when I cannot...



Marriage is a learning curve and requires a lot of patience. I am happy that we stuck it out, it wasn't easy but we survived the hard parts (12 surgeries in 8 yrs then he had a heart attack!)

Only you know...really know what you need. Do not allow anyone to tell you how to live your marriage!

@skn69 posted:

Lauren,

People only see the outside of a couple, their 'public façade' but not what goes on behind doors. My husband is a suit & tie, critical, demanding, perfectionist (an Architect by nature), on time, and sees the world in black & white.

My friends hate rules, lunch times, and regulations. They see the world in colors and like to sleep in and stay out late, don't mind showing up 2hrs late for lunch etc.

The 2 are like oil and water. They find him stiff and strict, he finds them rude and undisciplined.

But I can't live with someone who is irresponsible, spends everything, saves nothing...I need someone who obeys the rules. My health means I have to plan everything 3 steps ahead, weeks in advance. I cannot go camping or suddenly run away for the weekend to a cottage without a bathroom.

So, I see my friends on my own or as couples...those that love me understand him...he needs rules to feel safe. He needs a nest egg not a Rollex or Mercedes. I need a man like him. I'm happy with a cheap car but enough money to pay for my surgeries. That is security to me.

You learn to understand that not everyone mixes and plays well together. You cannot change them so you learn to see them separately.

Years have gone by and he has mellowed. He holds my hand and cries when they wheel me into O.R. Freaks out when the doctors take too long but brings chocolates to all of the nurses the next day to apologize. He changes sheets and does the laundry, washes my hair, and dresses me when I cannot...



Marriage is a learning curve and requires a lot of patience. I am happy that we stuck it out, it wasn't easy but we survived the hard parts (12 surgeries in 8 yrs then he had a heart attack!)

Only you know...really know what you need. Do not allow anyone to tell you how to live your marriage!

Thank-you for explaining all of that. As long as you are happy, that is all that matters! I am sorry about your husband's heart attack, is he okay?

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