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Hi!

I received an irrigation system and wanted to pop on here and ask if anyone has any tips or advice for irrigation with jpouch.

Due to coronavirus we have had all clinics postponed. all ive been told over the phone buy a pouch nurse is to take my time carrying out the irrigation. Any other tips would be greatly helpful.

 

*edit*

Forgive me for saying this but im just really frustrated and loosing hope. Im honnestly loosing hope with this site. Whenever I post, im either met with unhelpful and condescending comments, or nobody offers advice. I would and find another group away from this site but most of the groups are over on facebook and I'm not on there (don't want to go on there). This site used to be really great and was why i kept coming back, but im feeling like nobody wants to help anyone, and its disappointing. What happened to compassion and kindness?! 

Last edited by Former Member
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When I still had the colon, the advice from naturopaths was that a colonic irrigation was not recoomended or helpfull to me, having colitis. I expect it be the same with a J-pouch. Colonic irrigation is good for people with constipation and on a bad diet. To remove material that's been sitting there for too long. I tried an enema of aloe Vera, but that had no effect that I could tell.

@Hesekiel posted:

When I still had the colon, the advice from naturopaths was that a colonic irrigation was not recoomended or helpfull to me, having colitis. I expect it be the same with a J-pouch. Colonic irrigation is good for people with constipation and on a bad diet. 

Thanks for the reply, are you saying if someone has colitis and a jpouch they shouldnt irrigate...? If so, I dont have colitis but I do have suspected pouchitus and am currently on antibiotics to help. Id like to also point out I had the advise to irrigate from a specialist internal pouch nurse, as I've been having problems with my jpouch for a while, and I have been speaking with them regularly over the past few months. A lot of people do irrigate with a jpouch aswell, and was hoping for some advise or tips for this post...

There has been some confusion posted here that mixes colonic irrigation with J-pouch irrigation. J-pouch irrigation is used when normal pouch emptying is difficult or impossible. There have been plenty of posts here over the years about specific techniques and tools to accomplish this, and searching the archive will surface those discussions. Colonic irrigation is a completely different thing, sometimes useful and sometimes foolish, and advice about it simply does not apply to J-pouchers. 

@readann posted:

What are you trying to achieve by irrigation? Did your doc recommend it? I was asking about it recently, too, but didn’t get much response and wonder if we are experiencing similar issues.

I have very severe irritation at the moment and am producing a lot of mucus from the pouch (im emptying about 5 times a day). Ive tried all sorts of topical creams to help with it, notning has helped and its gotten to the point where its affecting my sleep and concentration, it makes me very irritable too. I have urgency to empty pouch and i feel like my pouch and anus is very inflamed. I also have a loop ileostomy, and realise i shouldn't be producing the amount of mucus I have been producing. 

I am under the top hospital for jpouches and other gut conditions in the UK (i have fap and desmoid tumours), and one of the specalist pouch nurses, whom i have been speaking to regularly and who works with my surgeon and gastroenterologist, suggested irrigation to help, along with a 2 week course of antibiotics for pouchitus. I might also need to have dialation. 

@Scott F posted:

There has been some confusion posted here that mixes colonic irrigation with J-pouch irrigation. J-pouch irrigation is used when normal pouch emptying is difficult or impossible. There have been plenty of posts here over the years about specific techniques and tools to accomplish this, and searching the archive will surface those discussions. Colonic irrigation is a completely different thing, sometimes useful and sometimes foolish, and advice about it simply does not apply to J-pouchers. 

Im asking for more recent advice! As im not too sure if anyone has any newer suggestions

Thanks for mansplaning how to navigate the site and how it works, though  

 

@Former Member posted:

I have very severe irritation at the moment and am producing a lot of mucus from the pouch (im emptying about 5 times a day). Ive tried all sorts of topical creams to help with it, notning has helped and its gotten to the point where its affecting my sleep and concentration, it makes me very irritable too. I have urgency to empty pouch and i feel like my pouch and anus is very inflamed. I also have a loop ileostomy, and realise i shouldn't be producing the amount of mucus I have been producing. 

I am under the top hospital for jpouches and other gut conditions in the UK (i have fap and desmoid tumours), and one of the specalist pouch nurses, whom i have been speaking to regularly and who works with my surgeon and gastroenterologist, suggested irrigation to help, along with a 2 week course of antibiotics for pouchitus. I might also need to have dialation. 

I see. Well, I no longer have my stoma so our situations are different. You could try using a warm water enema a few times a day for relief. But I’m hopeless in my situation so I don’t think I have much for you.

@readann posted:

I see. Well, I no longer have my stoma so our situations are different. You could try using a warm water enema a few times a day for relief. But I’m hopeless in my situation so I don’t think I have much for you.

Ah no problem, thanks for taking the time out to offer some help!

I'm aiming to do it 2 times a week as ive been given 15 tips for the irrigation pump which is supposed to last me a month!!! I cant reuse the tips either. So far its kinda helped (I'm boiling water, waiting for it to cool down to room temp then using that to irrigate) but the mucus buildup I'm experiencing is ridiculous so might have to do it twice a day as you've suggested. 

@Former Member posted:

I have very severe irritation at the moment and am producing a lot of mucus from the pouch (im emptying about 5 times a day). Ive tried all sorts of topical creams to help with it, notning has helped and its gotten to the point where its affecting my sleep and concentration, it makes me very irritable too. I have urgency to empty pouch and i feel like my pouch and anus is very inflamed. I also have a loop ileostomy, and realise i shouldn't be producing the amount of mucus I have been producing. 

I am under the top hospital for jpouches and other gut conditions in the UK (i have fap and desmoid tumours), and one of the specalist pouch nurses, whom i have been speaking to regularly and who works with my surgeon and gastroenterologist, suggested irrigation to help, along with a 2 week course of antibiotics for pouchitus. I might also need to have dialation. 

I’m also from the Uk and my J pouch creation & takedown were also performed by the leading and only specialist Colorectal Hospital within the UK.

As you currently have a loop ileostomy, then I assume your Takedown, to connect the small intestine to the J pouch has not been completed.

When I was at such a stage; I also passed lots of mucus, far more than I ever did when I had the end ileostomy for 9½ years; I had to use bedding pads and wear adult nappy pants, certainly not the nicest of attire.

However, I’m surprised you’ve been advised to irrigate; the opening within the loop ileostomy is very small and delicate; if you’ve been discharged from Hospital and are at home, then I would have expected your Stoma Nurse to carry out such a procedure.

If you’re currently in Hospital, not long after your surgery; then the irrigation should most definitely be performed by either your Surgeon, Stoma or Pouch Nurse.

By attempting to Irrigate the loop ileostomy yourself; you could be jeopardising your chance of a life with a J pouch; apparently, the small intestine doesn’t have the ability to feel pain.

At present, your loop ileostomy is actually attached to the J pouch and the loop of small intestine which protrudes through your abdomen, has a tiny opening to one side to drain into the colostomy bag, thus bypassing the j pouch whilst it heals; although on occasions, output does managed to get through, which can exacerbate the mucus issue, making it all the more disgusting.

The need to insert a tube in the other end, is normally suggested when a patient is unable to empty the j pouch, normally due to either a narrowing of the anal canal/rectal cuff or a blockage as a result of scar tissue; performing this procedure your self is normally advised but only under the guidance and supervision of a pouch Nurse and until the Nurse is satisfied you can perform such a procedure by yourself.

 

However, as your have the loop ileostomy, you wouldn’t be expected to empty you pouch until after Takedown.

@Former Member posted:

I’m also from the Uk and my J pouch creation & takedown were also performed by the leading and only specialist Colorectal Hospital within the UK.

As you currently have a loop ileostomy, then I assume your Takedown, to connect the small intestine to the J pouch has not been completed.

When I was at such a stage; I also passed lots of mucus, far more than I ever did when I had the end ileostomy for 9½ years; I had to use bedding pads and wear adult nappy pants, certainly not the nicest of attire.

However, I’m surprised you’ve been advised to irrigate; the opening within the loop ileostomy is very small and delicate; if you’ve been discharged from Hospital and are at home, then I would have expected your Stoma Nurse to carry out such a procedure.

If you’re currently in Hospital, not long after your surgery; then the irrigation should most definitely be performed by either your Surgeon, Stoma or Pouch Nurse.

By attempting to Irrigate the loop ileostomy yourself; you could be jeopardising your chance of a life with a J pouch

The need to insert a tube in the other end, is normally suggested when a patient is unable to empty the j pouch, normally due to either a narrowing of the anal canal/rectal cuff or a blockage as a result of scar tissue; performing this procedure your self is normally advised but only under the guidance and supervision of a pouch Nurse and until the Nurse is satisfied you can perform such a procedure by yourself.

 

However, as your have the loop ileostomy, you wouldn’t be expected to empty you pouch until after Takedown. 

As mentionned... Im not irrigating on the basis that i havent been advised to do so from a speaclist im under (st marks hospital). An internal pouch specialist frpm my hospital has advised me to do irrigation at home using a small compact irrigation system which has been persciibed to me through the hospital. Im at home not in hospital... I highly doubt a professional would tell me to irrigate, if it were to jepordise my jpouch (and i havent asked for such advise here, if this is right, either.). I have suspected pouchitus too and they think I might need to be dialated. 

Do you have any advice on irrigation? 

 

@Former Member posted:

As mentionned... Im not irrigating on the basis that i havent been advised to do so from a speaclist im under (st marks hospital). An internal pouch specialist frpm my hospital has advised me to do irrigation at home using a small compact irrigation system which has been persciibed to me through the hospital. Im at home not in hospital... I highly doubt a professional would tell me to irrigate, if it were to jepordise my jpouch (and i havent asked for such advise here, if this is right, either.). I have suspected pouchitus too and they think I might need to be dialated. 

Do you have any advice on irrigation? 

 

You’re obviously under the capable hands of your Specialist Pouch Nurse at St Marks, so why turn to a web forum for advice and not your Nurse ?

 

@Former Member posted:

I was looking for some tips from people who irrigate... As the post states  

What you’ve been advised to do is totally different to the irrigation of either a K pouch or the large bowel via a stoma; due to the size of the opening within the small intestine, the configuration of the loop and the risk of perforation.

If your Pouch Nurse has not taught you how to do such a procedure and observed that you’re confident and capable of performing such a procedure safely; then I suggest you don’t attempt do it.

I believe normal self irrigation via the stoma; St.Marks assesses whether a patient is suitable and if so, will instruct how to perform such a procedure over a period of time.


St Marks arranged for a district Nurse to change my wound dressing at home every day for at least 2 weeks, then again for my old stoma sight after takedown; although you’re being asked to perform a far more risky procedure by yourself.

Since your initial response to my reply; I’ve search the internet for “‘Self Irrigation via Loop ileostomy“ and I’ve found nothing.

 

Although I hold St.Marks in very high regard; my Pouch Nurse incorrectly advised I apply a stoma paste to the skin erosion around my stoma, which made it a million times more painful and worse, she also wrongly advised of which stoma products were available from the brand I’d been using for 9½ years; thus providing ill fitting Hollister products, which caused the skin erosion in the first place.

At the time; and like yourself, I trusted the word of a Pouch Nurse from the UK’s leading colorectal Hospital.

However, I’m attempting to place myself in your position and think what I would do; and I certainly wouldn’t be attempting to insert anything into my loop ileostomy without proper instruction and guidance; even then, I’d want confirmation from either my Consultant or Surgeon.

Last edited by Former Member
@Former Member posted:

What you’ve been advised to do is totally different to the irrigation of either a K pouch or the large bowel via a stoma; due to the size of the opening within the small intestine, the configuration of the loop and the risk of perforation.

If your Pouch Nurse has not taught you how to do such a procedure and observed that you’re confident and capable of performing such a procedure safely; then I suggest you don’t attempt do it.

I believe normal self irrigation via the stoma; St.Marks assesses whether a patient is suitable and if so, will instruct how to perform such a procedure over a period of time.


St Marks arranged for a district Nurse to change my wound dressing at home every day for at least 2 weeks, then again for my old stoma sight after takedown; although you’re being asked to perform a far more risky procedure by yourself.

Since your initial response to my reply; I’ve search the internet for “‘Self Irrigation via Loop ileostomy“ and I’ve found nothing.

 

Although I hold St.Marks in very high regard; my Pouch Nurse incorrectly advised I apply a stoma paste to the skin erosion around my stoma, which made it a million times more painful and worse, she also wrongly advised of which stoma products were available from the brand I’d been using for 9½ years; thus providing ill fitting Hollister products, which caused the skin erosion in the first place.

At the time; and like yourself, I trusted the word of a Pouch Nurse from the UK’s leading colorectal Hospital.

However, I’m attempting to place myself in your position and think what I would do; and I certainly wouldn’t be attempting to insert anything into my loop ileostomy without proper instruction and guidance; even then, I’d want confirmation from either my Consultant or Surgeon.

I think you've misunderstood my post, i have a jpouch and a loop ileostomy. The irrigation wouldn't be put through the ileostomy, but via jpouch as i have irritation from there from not being able to empty mucous and might need to be dialated. 

I'm going to try to have an appointment with the pouch specialist, I might also try to get in touch with my surgeon too to discuss. 

@Former Member posted:

I think you've misunderstood my post, i have a jpouch and a loop ileostomy. The irrigation wouldn't be put through the ileostomy, but via jpouch as i have irritation from there from not being able to empty mucous and might need to be dialated. 

I'm going to try to have an appointment with the pouch specialist, I might also try to get in touch with my surgeon too to discuss. 

I’m sorry for my confusion but I’m glad I raised my concerned with you and we’ve clarified the situation.

I’m sorry I’m unable to provide any tips or advice in regard to irrigation.

However, it isn’t unusual for your  Pouch Nurse to advise you to irrigate your J pouch via your back passage, although such a procedure is normally suggested when a patient is unable to empty their pouch after takedown, rather than to alleviate a mucus issue.

I still believe your Pouch Nurse should have assisted you to perform such a procedure until satisfied you’re comfortable doing it by yourself, rather than just prescribe the appliance and expect you to follow instructions.

@Former Member posted:

I’m sorry for my confusion but I’m glad I raised my concerned with you and we’ve clarified the situation.

I’m sorry I’m unable to provide any tips or advice in regard to irrigation.

However, it isn’t unusual for your  Pouch Nurse to advise you to irrigate your J pouch via your back passage, although such a procedure is normally suggested when a patient is unable to empty their pouch after takedown, rather than to alleviate a mucus issue.

I still believe your Pouch Nurse should have assisted you to perform such a procedure until satisfied you’re comfortable doing it by yourself, rather than just prescribe the appliance and expect you to follow instructions.

Its not like im shoving the thing up there and being heavy handed/rough with it, or putting too much liquid in the pouch. Ive been told what to do, tried it once and it went well. I understand your concern though!

Like I said I'm going to see the pouch specialist soon.

Thanks your your input either way. 

@Former Member posted:

Its not like im shoving the thing up there and being heavy handed/rough with it, or putting too much liquid in the pouch. Ive been told what to do, tried it once and it went well. I understand your concern though!

Like I said I'm going to see the pouch specialist soon.

Thanks your your input either way. 

I never implied you are shoving anything up anywhere.

I was concerned for a complete stranger, who’s undergoing the same surgical procedure as I’ve had myself.

From my brief correspondence with yourself, you appear to take comments in reply to your post as criticism.

You also appear somewhat ungrateful; that complete strangers are being good enough to respond but despite this, it’s not the response you actually wanted.

And you wonder why nobody wants to help you; asking what’s happened to compassion and kindness; maybe forum members dislike arrogance.

either way, thanks for your reply.

@Former Member posted:

I never implied you are shoving anything up anywhere.

I was concerned for a complete stranger, who’s undergoing the same surgical procedure as I’ve had myself.

From my brief correspondence with yourself, you appear to take comments in reply to your post as criticism.

You also appear somewhat ungrateful; that complete strangers are being good enough to respond but despite this, it’s not the response you actually wanted.

And you wonder why nobody wants to help you; asking what’s happened to compassion and kindness; maybe forum members dislike arrogance.

either way, thanks for your reply.

I'm sorry you feel this way. I didnt think i was being arrogant, and i didnt mean to come across like this, or as ungrateful. Im frustrated that im getting these problems with my pouch and was looking for some help 😔 

@Former Member posted:

I'm sorry you feel this way. I didnt think i was being arrogant, and i didnt mean to come across like this, or as ungrateful. Im frustrated that im getting these problems with my pouch and was looking for some help 😔 

Thank you for such a sincere reply. 

I’m sure I also speak for others when I say; we totally understand what you’re going through, how you’re feeling and how such issues can affect your mood and personality; however, this is so difficult to convey or translate in text and via a web forum.

We’re here to help, best we can. 

Thanks

@Hesekiel posted:

When I still had the colon, the advice from naturopaths was that a colonic irrigation was not recoomended or helpfull to me, having colitis. I expect it be the same with a J-pouch. Colonic irrigation is good for people with constipation and on a bad diet. To remove material that's been sitting there for too long. I tried an enema of aloe Vera, but that had no effect that I could tell.

So you’re saying if you have a j-pouch to not do a colonic or colon irrigation?

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