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I used wet wipes initially, mainly because it was recommended by the Hospital, as well as being suggested within most of the j pouch literature I read; although without making a conscious decision, I slowly reverted to using toiler paper, although I still keep wet wipes on hand, as they’re useful for other tasks.

I’ve never endured butt burn either, so it can’t be a consequence of using toilet paper.

Do the regular users of wipes, dispose of them into a bin or flush them into the ocean ?

Last edited by strange
@strange posted:

I used wet wipes initially, mainly because it was recommended by the Hospital, as well as being suggested within most of the j pouch literature I read; although without making a conscious decision, I slowly reverted to using toiler paper, although I still keep wet wipes on hand, as they’re useful for other tasks.

I’ve never endured butt burn either, so it can’t be a consequence of using toilet paper.

Do the regular users of wipes, dispose of them into a bin or flush them into the ocean ?

Definitely a trash can

@strange posted:

Just not very nice;

A bin full of soiled wipes doesn’t  sound very pleasant at all; not a problem it wipes been used to remove make up or anything else but they haven’t; would of thought it doesn’t smell too good either.

 

Lol I more than understand that. It is not as bad as it sounds though. It does not stink at all, I sometimes do not empty the trash in my bathroom for weeks, I always fill it to the very top before I take it out- still does not smell.  I do not really have any company over but if I did I would take out the trash in there more often since it would not be a pretty sight lol. I use store plastic bags.  But if toilet paper is working for you and you do not have any butt burn with it then toilet paper is great! Its also cheaper than buying wet wipes. I but 800 wipes for about $12-$14 about every 4-6 months, I go 10x a day or more so toilet paper is definitely a big money saver, if I could handle it, I would definitely just use toilet paper too. 

Last edited by Lauren Of Emerald City

I only go 3 or maybe 4 times per day, so maybe that’s why I don’t  suffer from butt burn.

Although, I wouldn't like to be disposing of toilet wipes in the bin, I’d probably be putting then into nappy sacks then into the bin, which is probably as bad as flushing them into the ocean.

When disposing of my stoma appliance, I had no choice but place them in the bin, although I used a separate bin just for my stoma appliance and they were placed into the scented nappy sacks, which didn’t seem so bad; and I did this for 9½ years.

Last edited by strange
@strange posted:

I only go 3 or maybe 4 times per day, so maybe that’s why I don’t  suffer from butt burn.

Although, I wouldn't like to be disposing of toilet wipes in the bin, I’d probably be putting then into nappy sacks then into the bin, which is probably as bad as flushing them into the ocean.

When disposing of my stoma appliance, I had no choice but place them in the bin, although I used a separate bin just for my stoma appliance and they were placed into the scented nappy sacks, which didn’t seem so bad; and I did this for 9½ years.

You seem like you are a very clean, organized person lol. 

@strange posted:

I only go 3 or maybe 4 times per day, so maybe that’s why I don’t  suffer from butt burn.

Although, I wouldn't like to be disposing of toilet wipes in the bin, I’d probably be putting then into nappy sacks then into the bin, which is probably as bad as flushing them into the ocean.

When disposing of my stoma appliance, I had no choice but place them in the bin, although I used a separate bin just for my stoma appliance and they were placed into the scented nappy sacks, which didn’t seem so bad; and I did this for 9½ years.

You had a stoma for 9 1/2 years before getting a J-pouch???

You had a stoma for 9 1/2 years before getting a J-pouch???

Yep, I had the stoma for 9½ years.

Was initially diagnosed and treated for UC and prior to surgery, I was promised reconnection within a couple of months.

However, some months after Surgery, Pathology reports came to the conclusion I was actually suffering from Crohn’s, therefore the possibility of reconnection wasn’t an option.

Although, after 9 years of not having any flare ups and not taking any meds to treat or prevent flare ups, it was decided my condition was Indeterminate Colitis; meaning it wasn’t a definitive diagnosis but more than likely, not Crohn’s; therefore, the possibility of J pouch surgery was again an option; and I took it.

@strange posted:

Yep, I had the stoma for 9½ years.

Was initially diagnosed and treated for UC and prior to surgery, I was promised reconnection within a couple of months.

However, some months after Surgery, Pathology reports came to the conclusion I was actually suffering from Crohn’s, therefore the possibility of reconnection wasn’t an option.

Although, after 9 years of not having any flare ups and not taking any meds to treat or prevent flare ups, it was decided my condition was Indeterminate Colitis; meaning it wasn’t a definitive diagnosis but more than likely, not Crohn’s; therefore, the possibility of J pouch surgery was again an option; and I took it.

How do you like J-pouch life??? Do you like it better than ostomy life??? And did you have to get pouchoscopys over the 9 1/2 years even though you were not connected???

Yeah, even though I endure bouts of fatigue and a disturbed sleep pattern; life with a J pouch is absolutely wonderful.

100 trillion times better; especially as I don’t need to carry supplies, have to empty my bag every two hours or be changIng my appliance every few days.

In fact, I’ve not been into a disabled or public Toilet for years, it’s so long ago, I can’t even remember.

Although, more importantly, I don’t have a bag hanging from my abdomen and I can sit around in my boxer shorts without worrying whether the bag can be seen, even though I’m all alone.

Also, I can look at my self in a full length mirror, whilst wearing just my skin tight boxer shorts, without the top of the bag staring right back at me.

Yeah, when I had the stoma; every three years, I had to have what is called a sigmoidoscopy, to check my back passage (so to speak) for Cancer, inflammation and signs of Colitis (Proctitis)

During the 9½ years; I didn’t have a pouch; my large bowel (Colon) had been removed and an end ileostomy was created.

I only had my pouch created during 2014 as part of my J pouch surgery.

My takedown was during 2015 and since 2016, I’ve been discharged from the care of the Hospital that created my J pouch: and they believe, pouchoscopies aren’t necessary, until symptoms arise which warrant further investigation.

Last edited by strange
@strange posted:

Yeah, even though I endure bouts of fatigue and a disturbed sleep pattern; life with a J pouch is absolutely wonderful.

100 trillion times better; especially as I don’t need to carry supplies, have to empty my bag every two hours or be changIng my appliance every few days.

In fact, I’ve not been into a disabled or public Toilet for years, it’s so long ago, I can’t even remember.

Although, more importantly, I don’t have a bag hanging from my abdomen and I can sit around in my boxer shorts without worrying whether the bag can be seen, even though I’m all alone.

Also, I can look at my self in a full length mirror, whilst wearing just my skin tight boxer shorts, without the top of the bag staring right back at me.

Yeah, when I had the stoma; every three years, I had to have what is called a sigmoidoscopy, to check my back passage (so to speak) for Cancer, inflammation and signs of Colitis (Proctitis)

During the 9½ years; I didn’t have a pouch; my large bowel (Colon) had been removed and an end ileostomy was created.

I only had my pouch created during 2014 as part of my J pouch surgery.

My takedown was during 2015 and since 2016, I’ve been discharged from the care of the Hospital that created my J pouch: and they believe, pouchoscopies aren’t necessary, until symptoms arise which warrant further investigation.

I am glad to hear all of that, I am glad you are doing very well! I would get a second opinion about that pouchoscopy thing, most of us get it checked every year- no exceptions. You cannot always feel a problem and when you do feel the problem, often times its too late or in the danger zone. I would try to get it checked every year if I were you.

I can identify with most of what you say actually. The fatigue and disturbed sleep patterns are a thing, not good, but still a good trade off for having no colostomy bag. For me that was a massive thing. The specialists im under also agree i don’t need regular internal pouchoscopies. Not needed one for many years. 👌🏻

I am glad to hear all of that, I am glad you are doing very well! I would get a second opinion about that pouchoscopy thing, most of us get it checked every year- no exceptions. You cannot always feel a problem and when you do feel the problem, often times its too late or in the danger zone. I would try to get it checked every year if I were you.

@strange posted:

Yeah, even though I endure bouts of fatigue and a disturbed sleep pattern; life with a J pouch is absolutely wonderful.

100 trillion times better; especially as I don’t need to carry supplies, have to empty my bag every two hours or be changIng my appliance every few days.

In fact, I’ve not been into a disabled or public Toilet for years, it’s so long ago, I can’t even remember.

Although, more importantly, I don’t have a bag hanging from my abdomen and I can sit around in my boxer shorts without worrying whether the bag can be seen, even though I’m all alone.

Also, I can look at my self in a full length mirror, whilst wearing just my skin tight boxer shorts, without the top of the bag staring right back at me.

Yeah, when I had the stoma; every three years, I had to have what is called a sigmoidoscopy, to check my back passage (so to speak) for Cancer, inflammation and signs of Colitis (Proctitis)

During the 9½ years; I didn’t have a pouch; my large bowel (Colon) had been removed and an end ileostomy was created.

I only had my pouch created during 2014 as part of my J pouch surgery.

My takedown was during 2015 and since 2016, I’ve been discharged from the care of the Hospital that created my J pouch: and they believe, pouchoscopies aren’t necessary, until symptoms arise which warrant further investigation.

When you had your stoma for 9 1/2 years, you probably had your rectum with it, i assume.

I am glad to hear all of that, I am glad you are doing very well! I would get a second opinion about that pouchoscopy thing, most of us get it checked every year- no exceptions. You cannot always feel a problem and when you do feel the problem, often times its too late or in the danger zone. I would try to get it checked every year if I were you.

In regard to pouchoscopies; St Marks Hospital which performed my J pouch surgery; believe routine pouchoscopies aren’t necessary.

St Marks, is the leading Colorectal Hospital within the Uk and apparently, the only Hospital In the world which specialises solely in colorectal diseases.

As well a being a centre of excellence for teaching and the development of new colorectal surgical techniques; the J pouch was pioneered there.

A first opinion from St Marks, is probably the best and only opinion necessary but thanks for your concern.

Last edited by strange

It’s easy to fall into the trap of thinking that the recommendation of our trusted doctor is correct and universal. More often, though, it’s simply one satisfactory way to proceed, given the available knowledge, no better or worse than some others. Sometimes it’s specific to our personal circumstances, but not presented to us as such, and we internalize the knowledge as though it were general knowledge. These exaggerated beliefs only become a problem when we treat them as reliable advice suitable for others.

Our individual experiences reported here are enormously valuable for others to read. They open up new possibilities when folks really need some options to consider. I do recommend as much humility as we can muster, though. None of us can know for sure what’s right for someone at the far end of a broadband connection.

@Scott F posted:

It’s easy to fall into the trap of thinking that the recommendation of our trusted doctor is correct and universal. More often, though, it’s simply one satisfactory way to proceed, given the available knowledge, no better or worse than some others. Sometimes it’s specific to our personal circumstances, but not presented to us as such, and we internalize the knowledge as though it were general knowledge. These exaggerated beliefs only become a problem when we treat them as reliable advice suitable for others.

Our individual experiences reported here are enormously valuable for others to read. They open up new possibilities when folks really need some options to consider. I do recommend as much humility as we can muster, though. None of us can know for sure what’s right for someone at the far end of a broadband connection.

So, what are you saying...... you know better than the eminent Surgeons and Specialist at St Marks Hospital, cos your response appears to be pooh-poohing the advice I’ve been given. 

I placed my trust in the Specialist Surgeons at St Marks, who delivered and provided me with a complication free J pouch; although now, I’m to ignore their knowledge and expertise.

Maybe the insistence by US physicians to perform yearly  pouchoscopies is driven by greed under the guise of patient care.

The majority of the first world population don’t have regular colonoscopies as a precaution and would only be directed to such a procedure when symptoms arise which warrant further investigation.

@strange posted:

So, what are you saying...... you know better than the eminent Surgeons and Specialist at St Marks Hospital, cos your response appears to be pooh-poohing the advice I’ve been given. 

I placed my trust in the Specialist Surgeons at St Marks, who delivered and provided me with a complication free J pouch; although now, I’m to ignore their knowledge and expertise.

Maybe the insistence by US physicians to perform yearly  pouchoscopies is driven by greed under the guise of patient care.

The majority of the first world population don’t have regular colonoscopies as a precaution and would only be directed to such a procedure when symptoms arise which warrant further investigation.

Strange, you have misunderstood me. It was very helpful of you to report what your Specialist Surgeons have advised, as others can receive the benefit of that advice. I wouldn’t have characterized it as “the best and only opinion necessary,” but that’s neither here nor there - I was offering an observation on the thread, not your specific comment. I don’t get an annual pouchoscopy, and I’ve decided that in my circumstances it isn’t necessary, so my comment was most particularly not a defense of US practices. I was simply suggesting a way we might be most helpful to one another.

@Scott F posted:

Strange, you have misunderstood me. It was very helpful of you to report what your Specialist Surgeons have advised, as others can receive the benefit of that advice. I wouldn’t have characterized it as “the best and only opinion necessary,” but that’s neither here nor there - I was offering an observation on the thread, not your specific comment. I don’t get an annual pouchoscopy, and I’ve decided that in my circumstances it isn’t necessary, so my comment was most particularly not a defense of US practices. I was simply suggesting a way we might be most helpful to one another.

Well in that case Scott, I apologise for my misunderstanding and for responding in such a manner.

Thanks for being good enough to explain.

i used the term “ the best and only opinion necessary“ due to the reputation of St Marks within the UK .

If I can’t trust the word of my Surgeon, who at the time was also the Clinical Director of St Marks, who can I trust; also, why look for opinions elsewhere when I’m already under the care of the best available in my country.

 

 

@strange posted:

Well in that case Scott, I apologise for my misunderstanding and for responding in such a manner.

Thanks for being good enough to explain.

i used the term “ the best and only opinion necessary“ due to the reputation of St Marks within the UK .

If I can’t trust the word of my Surgeon, who at the time was also the Clinical Director of St Marks, who can I trust; also, why look for opinions elsewhere when I’m already under the care of the best available in my country.

 

 

You make really good points. So if you never have problems, you never get scoped?  Even if its been 20+ years???

Last edited by Lauren Of Emerald City
@Scott F posted:

Strange, you have misunderstood me. It was very helpful of you to report what your Specialist Surgeons have advised, as others can receive the benefit of that advice. I wouldn’t have characterized it as “the best and only opinion necessary,” but that’s neither here nor there - I was offering an observation on the thread, not your specific comment. I don’t get an annual pouchoscopy, and I’ve decided that in my circumstances it isn’t necessary, so my comment was most particularly not a defense of US practices. I was simply suggesting a way we might be most helpful to one another.

How often do you get scoped Scott???

How often do you get scoped Scott???

I get scoped when conditions warrant, not on a fixed schedule. I've had perhaps three pouchoscopies in about 18 years. I've written about this a few times here. This is what I wrote a bit over a year ago:

---------------------

There are significant cultural and economic differences in this. Although it is possible to develop cancer in the rectal cuff, it’s uncommon. In the US this translates to regular pouchoscopy, perhaps annually, in many doctors’ practices. In other places the modest cancer risk is treated as less of an issue. Part of this is economic, since performing scopes is quite profitable in the US. 

If dysplasia was found prior to colectomy then the guidance is generally different, and annual scopes are usually recommended more widely, at least in places where that is possible.

The rectal cuff is probably just as prone to cancer (per square cm) as the pre-colectomy colon, but it’s tiny. The cancer risk is statistical, so shrinking the target shrinks the risk.

@Scott F posted:

I get scoped when conditions warrant, not on a fixed schedule. I've had perhaps three pouchoscopies in about 18 years. I've written about this a few times here. This is what I wrote a bit over a year ago:

---------------------

There are significant cultural and economic differences in this. Although it is possible to develop cancer in the rectal cuff, it’s uncommon. In the US this translates to regular pouchoscopy, perhaps annually, in many doctors’ practices. In other places the modest cancer risk is treated as less of an issue. Part of this is economic, since performing scopes is quite profitable in the US. 

If dysplasia was found prior to colectomy then the guidance is generally different, and annual scopes are usually recommended more widely, at least in places where that is possible.

The rectal cuff is probably just as prone to cancer (per square cm) as the pre-colectomy colon, but it’s tiny. The cancer risk is statistical, so shrinking the target shrinks the risk.

Oh cool! I never saw that since I just joined last month. You are pretty informative but I think I would feel more comfortable getting scoped as often as I can, I have bad luck lol

@strange posted:

In regard to pouchoscopies; St Marks Hospital which performed my J pouch surgery; believe routine pouchoscopies aren’t necessary.

Strange, I believe that's also generally true and the standard of care in the US, except in cases where there is chronic inflammation, or where dysplasia was evidenced in the colon when it was removed.  I have been told consistently for the past 30 years that persons in either of these risk groups should have annual pouchoscopies.  I happen to fall into both risk groups- my colon was found to have dysplasia when it was removed, and I have chronic inflammation in my J Pouch and in my neoterminal ileum.  Therefore, my Pouch has been scoped every single year since 1992.

Last edited by CTBarrister
@CTBarrister posted:

Strange, I believe that's also generally true and the standard of care in the US, except in cases where there is chronic inflammation, or where dysplasia was evidenced in the colon when it was removed.  I have been told consistently for the past 30 years that persons in either of these risk groups should have annual pouchoscopies.  I happen to fall into both risk groups- my colon was found to have dysplasia when it was removed, and I have chronic inflammation in my J Pouch and in my neoterminal ileum.  Therefore, my Pouch has been scoped every single year since 1992.

Yeah, please excuse my ignorance.
   St Marks does recommend regular rectal examination, either pouchoscopies or otherwise, when a patients biopsies or Pathology Report has identified abnormal cells (dysplasia) or when patients have received a J pouch after treatment for Cancer.

 My blinkered view forget to consider other reasons why a person would have their bowel removed and a J pouch created.

My reference in regard to Pouchoscopies not being necessary, was the advice given to patients like myself, whose had their bowel removed as a result of Ulcerative Colitis and their biopsies and Pathology Reports have not identifIed dysplasia.

Last edited by strange
@strange posted:

Yeah, please excuse my ignorance.
   St Marks does recommend regular rectal examination, either pouchoscopies or otherwise, when a patients biopsies or Pathology Report has identified abnormal cells (dysplasia) or when patients have received a J pouch after treatment for Cancer.

 My blinkered view forget to consider other reasons why a person would have their bowel removed and a J pouch created.

My reference in regard to Pouchoscopies not being necessary, was the advice given to patients like myself, whose had their bowel removed as a result of Ulcerative Colitis and their biopsies and Pathology Reports have not identifIed dysplasia.

Strange, I appreciate your opinions and the St. Mark opinions but I disagree with not getting scoped yearly. A lot of things require yearly check-ups in life whether something is wrong or not. When you wait until something happens it is often too late. You do not always feel tumors, cancers, and other stuff. I urge everyone to try to be adamant about yearly check-ups, if you still disagree, I respect every one's opinions and respect every thinking- I just do not agree. 

Strange, I appreciate your opinions and the St. Mark opinions but I disagree with not getting scoped yearly. A lot of things require yearly check-ups in life whether something is wrong or not. When you wait until something happens it is often too late. You do not always feel tumors, cancers, and other stuff. I urge everyone to try to be adamant about yearly check-ups, if you still disagree, I respect every one's opinions and respect every thinking- I just do not agree. 

I’m pleased you appreciate mine and the opinion of St Marks Hospital in regard to yearly rectal screening.

However, the eminent Surgeons at St Marks must know what they are talking about, otherwise the Hospital wouldn’t have gained such a reputation.

Their logic, which is based on medical knowledge and expertise, is that patients such as myself; are no more at risk of developing cancer than the general population; thus elective pouchoscopies are unnecessary.

Therefore, I much prefer to follow the recommendation of the Worlds leading Colorectal Hospital rather than the opinion of a web forum member; but thanks for your concern.

Last edited by strange

St. Mark's guidance is in accordance with the medical industry standard, but if a person doesn't fall into one of the risk groups (prior cancer or dysplasia or Chronic inflammation), the decision on whether to get scoped annually is an individual one. The medical industry standard doesn't deem it necessary, but it nevertheless may be prudent. J Pouch Patients have a rectal cuff which is retained colonic tissue, and if cancer were to develop, that's where it likely would develop. A person who has a history of sporadic cuffitis but no chronic inflammation, for example, might consider an annual scope to be prudent. There may not be a "one size fits all" approach for all persons outside of the risk groups.

Insurance coverage could be a separate issue, because to get a health insurance company to cover the cost of an annual scope, you may need a diagnosis and/or medical history justifying the medical necessity of that annual scope.

Last edited by CTBarrister

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