I consider a J-pouch, Ostomy, and ileorectal anastomosis as just a treatment plan. I do not think we are FULLY cured given all of the factors.
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J Pouch or Ostomy surgery is not a "cure" and is not designed to be, rather it is the elimination of all or part of an organ that is unable through treatment to cope with a disease process which has not left your body, that being autoimmune disorder. IBD is simply a manifestation of auto immune disorder (AID) which is systemic and not addressed by ANY surgery. AID may, and probably will, manifest in other ways during one's lifetime. In addition to IBD with my J Pouch, I was diagnosed with inflammatory airway disease 28 years after getting my J Pouch (non-allergic chronic rhinitis). I also have CSR, central seruos retinopathy, which is believed to possibly be caused by AID. Pouchitis, Cuffitis, Crohn's, rheumatoid arthritis, irisitis and other inflammatory conditions can manifest after surgery as a result of underlying AID.
The drugs that really treat the AID as opposed to the IBD are the biologics and immunosuppressive drugs. They treat the underlying disease rather than symptoms of the disease. Patient take Remicade for a wide assortment of autoimmune disorders, of which IBD is just one subset.
As opposed to a treatment plan, surgery is simply a stalling mechanism to halt the attack of AID on one part of your body so as to prevent further deterioration and/or death, allow healing and other methods of treatment. And it turns out that in some cases no further treatment is necessary, even though AID remains in the body. In those patients, they are not cured; their AID is simply in remission for the moment, and may or may not resurface later as Pouchitis, Crohn's or whatever else.
@CTBarrister posted:J Pouch or Ostomy surgery is not a "cure" and is not designed to be, rather it is the elimination of all or part of an organ that is unable through treatment to cope with a disease process which has not left your body, that being autoimmune disorder. IBD is simply a manifestation of auto immune disorder (AID) which is systemic and not addressed by ANY surgery. AID may, and probably will, manifest in other ways during one's lifetime. In addition to IBD with my J Pouch, I was diagnosed with inflammatory airway disease 28 years after getting my J Pouch (non-allergic chronic rhinitis). I also have CSR, central seruos retinopathy, which is believed to possibly be caused by AID. Pouchitis, Cuffitis, Crohn's, rheumatoid arthritis, irisitis and other inflammatory conditions can manifest after surgery as a result of underlying AID.
The drugs that really treat the AID as opposed to the IBD are the biologics and immunosuppressive drugs. They treat the underlying disease rather than symptoms of the disease. Patient take Remicade for a wide assortment of autoimmune disorders, of which IBD is just one subset.
As opposed to a treatment plan, surgery is simply a stalling mechanism to halt the attack of AID on one part of your body so as to prevent further deterioration and/or death, allow healing and other methods of treatment. And it turns out that in some cases no further treatment is necessary, even though AID remains in the body. In those patients, they are not cured; their AID is simply in remission for the moment, and may or may not resurface later as Pouchitis, Crohn's or whatever else.
Thank-you for sharing that- a lot of people think we are cured, even doctors and surgeons lol.
Thank you all for sharing this information on auto immune disorder. I, too, have been told by doctors (even my GI Doc) that surgery is the cure! But, I've always wondered. So, given this information and our current situation with COVID-19, does this AID put us in the "high risk" category?
Having autoimmune disorder doesn't necessarily compromise your ability to combat Covid 19 unless you are taking immuno-suppressive drugs. If you are not immunosuppressed you are probably in no better or worse position than anyone else and the same can be said for any other contagious disease including the common flu.
The need to take immunosuppressive drugs suggests exactly the opposite- that your body is experiencing an inflammatory response by an overly aggressive response to certain bacteria - not an overly weak response. Hence the very need to take immunosuppressants is on the theory that your immune system needs to be "calmed down", which would actually suggest the exact opposite of what you state- that those with AID are in a "low risk" category. However I don't believe that there is any empirical evidence that the immune system of a person with AID would react differently to Covid 19 than to other viruses they may have had or than anyone else exposed to Covid 19. I have also been told that those taking Remicade aren't necessarily more prone to Covid 19 or to having less of an ability to fight it off than those not taking it. There is no data on it. But there is no clear cut additional risk factor.
Underlying conditions can weaken the immune system of course, and an immune system weakens with old age, which is why older persons have a higher mortality rate. But just remember that most of the treatments of IBD either suppress the immune system, or else kills the bacteria that causes the immune system to overreact.
Covid 19 is a virus and it stimulates a different response from the immune system. I survived chicken pox, mumps and measles. These are all viruses and they are all still in my body and they aren't causing my IBD issues. It's quite possible that one of those viruses did cause the AID issue in the first place, but that too is unknown. I didn't develop IBD until after a severe bout with salmonella poisoning at age 9, and this is a more likely factor.
Take a deep breath on this one, pls.
No, we are not cured. And, no, we are not a treatment plan.
We are who we are. And everyone is different. Not, 'one size fits all', here.
Had my pouch since '86. And when i forget about it for weeks, if not months,, I know I'm doing just fine. And, yes, I've had pouchitis and multiple revisions and blockages ... but it's our life. Embrace it. Own it.
My 2 cents.
@Michael posted:Take a deep breath on this one, pls.
No, we are not cured. And, no, we are not a treatment plan.
We are who we are. And everyone is different. Not, 'one size fits all', here.
Had my pouch since '86. And when i forget about it for weeks, if not months,, I know I'm doing just fine. And, yes, I've had pouchitis and multiple revisions and blockages ... but it's our life. Embrace it. Own it.
My 2 cents.
I think you misunderstood me, I was not calling us a treatment plan. I was calling our J-pouch and ileostomy a treatment plan. Its like our medicine.
Sorry, my bad!
I just think j-pouchers - actual & prospective - think about ... focus on ... get a bit too myopic on their pouch ... they let it 'rule' their lives.
been eating chili and drinking and nibbling on things my GI says I probably shouldn't for a few decades ... might not have been the brightest or smartest path but at least I feel like I, and not my pouch, are running things.
be well - that's the bottom (ahem) line.
@Michael posted:Sorry, my bad!
I just think j-pouchers - actual & prospective - think about ... focus on ... get a bit too myopic on their pouch ... they let it 'rule' their lives.
been eating chili and drinking and nibbling on things my GI says I probably shouldn't for a few decades ... might not have been the brightest or smartest path but at least I feel like I, and not my pouch, are running things.
be well - that's the bottom (ahem) line.
Its all good! Thanks for apologizing 
And I understand what you are saying but I think its important to work with your J-pouch as a team- I think that is the only way we can really try to make it. Keep in mind too that J-pouches and ostomies can fail too, I think we just gotta do teamwork with our J -pouches and ostomies and work with everything we got. Does alcohol bother you or your pouch??? I heard mixed reviews on that.
I find it to be my cure.
I've had it (end ileo) for over five years.
Small hiccups at the start adjusting.
But I haven't seen a Dr for over 3 years and no plans to see one soon for it. It works fine.
I have no pain. I had years of pain.
I take no meds for it.
I feel free from all of that.
So in my perspective it is my cure.
Sure. I have to change the appliance.
But that becomes a thing like shaving or showering.
Gotta do the maintenance and personal upkeep.
I'm fortunate. I consider myself fortunate.
All the stuff I went through to get here and have a good outcome is amazing.
It's not perfect but it's 100 percent better than where I was. Cause I was in a bad place for a long time.
R.
@Mysticobra posted:I find it to be my cure.
I've had it (end ileo) for over five years.
Small hiccups at the start adjusting.
But I haven't seen a Dr for over 3 years and no plans to see one soon for it. It works fine.
I have no pain. I had years of pain.
I take no meds for it.
I feel free from all of that.
So in my perspective it is my cure.
Sure. I have to change the appliance.
But that becomes a thing like shaving or showering.
Gotta do the maintenance and personal upkeep.
I'm fortunate. I consider myself fortunate.
All the stuff I went through to get here and have a good outcome is amazing.
It's not perfect but it's 100 percent better than where I was. Cause I was in a bad place for a long time.
R.
To me its not a cure because we have to have our situation for life and we still need our gastros of course. Do you have to get ileoscopy check-ups???
@Former Member posted:To me its not a cure because we have to have our situation for life and we still need our gastros of course. Do you have to get ileoscopy check-ups???
Well.
I could have kept my situation I had for life too but trust me I was miserable. My end ileo took all that away. That's why I say it's "my" cure. Because I have no problems now. None. I don't take 16-20 pills a day. I have no pain. And the rest of my life? I'm not young and I took that into consideration. If I'm lucky I will live with it for 20 years. I'll be well into my 80's.
My first consideration was my wife. And my family.
They saw what I was going through. For a very long time.
Decades. And only got worse as time moved forward.
I personally couldn't put my wife through it anymore. And this was the answer and having the appliance doesn't phase her. My uc did. She saw everyday what it was and had done to me.
As for checkups? I'll know when to go.. Not necessary. For me anyway now. Never know when something crops up I'll go in. I have no problems with it.
I haven't had a gastro Dr since my surgeon took over. She said if I ever have any problems to see her.
My gastro Dr retired at the beginning of my surgeries and I never sought out another. I don't feel as I need one.
I haven't seen a Dr (my surgeon) for my ileo in over 3 years as I mentioned. If I have a problem I will go to the woman who performed my surgeries. She knows me best and she said to go to her with any problems. Besides. I trust her and do not want to go to a new gastro Dr all over again.
R.
P. S.
Knock on wood for the problem part. I've been very fortunate.
@Mysticobra posted:Well.
I could have kept my situation I had for life too but trust me I was miserable. My end ileo took all that away. That's why I say it's "my" cure. Because I have no problems now. None. I don't take 16-20 pills a day. I have no pain. And the rest of my life? I'm not young and I took that into consideration. If I'm lucky I will live with it for 20 years. I'll be well into my 80's.
My first consideration was my wife. And my family.
They saw what I was going through. For a very long time.
Decades. And only got worse as time moved forward.
I personally couldn't put my wife through it anymore. And this was the answer and having the appliance doesn't phase her. My uc did. She saw everyday what it was and had done to me.
As for checkups? I'll know when to go.. Not necessary. For me anyway now. Never know when something crops up I'll go in. I have no problems with it.
I haven't had a gastro Dr since my surgeon took over. She said if I ever have any problems to see her.
My gastro Dr retired at the beginning of my surgeries and I never sought out another. I don't feel as I need one.
I haven't seen a Dr (my surgeon) for my ileo in over 3 years as I mentioned. If I have a problem I will go to the woman who performed my surgeries. She knows me best and she said to go to her with any problems. Besides. I trust her and do not want to go to a new gastro Dr all over again.
R.
P. S.
Knock on wood for the problem part. I've been very fortunate.
Everything you said, makes total since!!! I just hope your ileostomy stays safe and your anal muscles stay safe too. Since you have not had any problems I am sure everything will be okay. Do you ever want to get Barbie Butt Surgery??? I hear a lot of ostomates get that. I love that term, Barbie Butt lol
Nah... I'm sewed from the inside.
She said she did that and left it intact just in case I wanted to try the pouch in the future.
I asked her if she would give me another if I decided to do it and she said "NO". Lol she would refer me.
I don't want another one. I'm fine. I don't want a "barbie butt" because it's more surgery that is not necessary and it would be painful. So I'm good.
I don't know what my future holds for me but if it stays this way until my last day on earth I'm fine with it. I'm not a young man. I'm not real old. Although my grandkids would argue that. But I'm in a good place. I don't hurt anymore. I can eat what I want. Except cheese and potatoes. I love potatoes too. They both blow my wafer out. So I can't. Unless I want to change. Ha ha.
Like I've said a thousand times I'm fortunate. I didn't ever expect to end up where I am but I accepted it and that's what made the difference. Acceptance.
R.
@Mysticobra posted:Nah... I'm sewed from the inside.
She said she did that and left it intact just in case I wanted to try the pouch in the future.
I asked her if she would give me another if I decided to do it and she said "NO". Lol she would refer me.
I don't want another one. I'm fine. I don't want a "barbie butt" because it's more surgery that is not necessary and it would be painful. So I'm good.
I don't know what my future holds for me but if it stays this way until my last day on earth I'm fine with it. I'm not a young man. I'm not real old. Although my grandkids would argue that. But I'm in a good place. I don't hurt anymore. I can eat what I want. Except cheese and potatoes. I love potatoes too. They both blow my wafer out. So I can't. Unless I want to change. Ha ha.
Like I've said a thousand times I'm fortunate. I didn't ever expect to end up where I am but I accepted it and that's what made the difference. Acceptance.
R.
Yeah, if its not necessary for a Barbie Butt then its not worth the pain and money lol. And since you have accepted the ileostomy and can live happy with it then definitely keep it! Who wants to risk more possible suffering, especially at your age. Are you misssing a lot of your small intestine since they had to take the J-pouch out???
Mistycobra, love your attitude. We all could learn from you!
You are very fortunate.