Why isn't irrigation presented as an option for bowel management?

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Ali Canada

A couple of weeks ago, some of you suggested irrigation. My surgery was this past April and this was the first I had heard of irrigation. I looked it up and can't for the life of me understand why it is not presented to people at the outset as an option for bowel management. I have my appointments next month to see my doctors and I am hopeful there will not be any contraindications to trying this. I'd like to thank everyone for suggesting it. I am sure there will be questions down the road but for the time being, my main question is why isn't this brought up as an option? It seems like it is a real lifestyle changer (for the better).

Bill

Hello Ali.

I couldn't agree more. It doesn't make sense for us not to be informed about the possibilities of an easier lifestyle. However, given that many medics have not even grasped the basics of stomas , it is not surprising that some of them have never even heard of irrigation. 

I used to anally irrigate prior to having a stoma so I insisted on irrigation as soon as was physically practical. 

Best wishes

Bill

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Ali Canada

Hi Bill,

At my last appointment, when I spoke of my frustration adapting to this colostomy - it was compounded with the post-op chemotherapy complications - my doctor spoke of some of her patients being able to train their bowels. In retrospect, I think those of her patients who can do that must be irrigating. I feel like a poop factory now, going all the time. It deters me from leaving the house and has certainly affected me on many levels. I finally found appliances I like which I must now purchase (holy smokes the expense!!) but still want to try irrigation which is another expense but I think will give me some freedom to live life which I am certainly not really doing now.

Bill

Hello Ali.

I am not sure if irrigation is possible while youare having chemotherapy but it is worth asking. 

Certainly irrigation at regular/routine times will help to train your bowel but I have read many posts on hear where people who are not irrigating have also trained their bowel to behave better than if they just let it do its own thing. The trick is to be patient and not expect the changes to come about immediately. The autonomic system does not react to the brain stimulation in the same way that other parts of the body do but that does not mean that it will not respond at all. Intense thought, such as is accomplished in yoga and other forms of meditation seems to have some impact in affecting those parts of the system that are slower to respond to the normal cognitive messages.

As for the financial side of things, I think you will find that irrigation 'can' be a lot cheaper than wearing bags if you are willing to wash out the sleeves and reuse them. I had problems with the Dansac sleeves not adhering to the skin properly and leaking (sometimes coming off altogether during the process) so I stuck one on a solid flat flange with a belt to hold it in place, that I made myself. This worked perfectly well and lasted a few weeks before needing to be replaced. I have since tried a Coloplast two-piece Assura sleeve, which is similar to the one I made for myself but it is professionally manufactured. I can get these to last upwards of two months before they become to disgusting to continue using. The baseplate is still being used after six months so I think that this would be a much cheaper option than wearing bags. However, being frugal is not the reason I would recommend irrgation. Being free of bags and output during the day lifts anxiety and gives us confidence to do whatever we want in life without the drag of a bag and everything that goes along with that sort of management of the condition. Irrigation has its own drawbacks, but they pale into insignificance when compared to the alternatives.

I hope you get the opportunty to try irrigation and I hope it is successful for you. If so, I can guarantee you won't regret the change.

Best wishes

Bill 

Ali Canada

Hi Bill,

I finished chemo in July so I should be good to try the irrigation.

Thank you for the irrigation information. I watched several videos on irrigation, an excellent one being "Adventures in Irrigating" which showed how to irrigate. I did wonder if people recycle the products or not. I noted it takes 6-8 weeks to train the colon to perform so that you only need to irrigate every 48 hours. During that time, you would still be wearing the same appliances but after that I see that what people wear varies: small pouches, stoma caps, and bandaids. If you are still wearing small pouches, then the sleeve would snap onto the wafer as one would still be used. I know nothing of stoma caps.

I have had a lot of problems with finding an appliance that works for me and am currently using a 2-piece convex system from Convatec; I have sensitive skin. Their diamond sachets also help tremendously with odor control which is a big issue for me. I am producing stool all day long and it rarely drops inside the bag unless I have diarrhea or I have blow-outs like this week (I am out of the Convatec and using flat system from Hollister).

I find this whole bag situation depressing, demoralizing and making me insecure to leave the house. I go back to work in December and I can't imagine it at this point. The irrigation seems like a more viable option for me.

Ali

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
veejay

Hello Ali,

As an irrigator for 18 years, I would like to make some comments that may be helpful for you.

Firstly, I suggest you look into getting some Imodium or similar to "harden" your output. I had the "loose" problem too after my operation. This will be a big help for you.

Secondly, there is no hard and fast rule for ostomates who irrigate. Everyone is different and everyone's insides work differently. I wouldn't be aiming to irrigate every 48 hours. In reality, it is more likely to be every 24 hours. (Because of a parastomal hernia, I irrigate every 12 hours. It only takes half an hour and then a wonderful shower....God, I love it)

Thirdly, I do know that after treatment, your insides need time to settle down from the trauma of the surgery. It was over 12 months from my op. to when I started irrigating, although I agree with you it is something I should have been told about before they started cutting. Don't start me on this subject!

Lastly, when you do begin irrigating, stick at it. It does take time to master and it can be very frustrating, but if you persist, you will not look back and you will be able to put a bit of tape over your stoma like I do every day. No more bag!

I wish you the best of luck.

V.J.

P.S. Remember irrigation does not work with ileostomy, only colostomy.

Bill

Hello Ali.

I agree with everything that V.J. has said. The people who can go 48 hours between irrigations are very fortunate. I experimented at the beginning, only to find that I went for about 36 hours, which took me half-way through the next day. That was pretty useless as far as I was concerned because I still had to wear a bag and the output came right in the midle of a working day. I irrigate every evening so that the next day is completely free of output. Unfortunately, I appear to suffer from colonic inertia, which means that it takes me longer to get rid of the output than some others. The process takes about 1,5 hours but I stay on the loo for the full 2hrs just to be sure.  At the beginning, I was having alast burst of activity about an hour after that which would have been disconcerting and annoying if I hadn't kept the irrigation sleeve on and folded it up to form a bag until I went to bed. At nights I swap the sleeve for a loosely fitting hernia belt and a tissue over the stoma to soak up any mucus. The advantage if this is that it gives the skin around the stoma a chance to dry out by the  morning and I'm not as sore as I used to be. I could probably get away with wearing a tissue during the day but I also have a problem with the peristalsis muscles closing tightly over the hole and stopping anything getting out. This includes gas, which is very painful when trapped, so I wear a stoma plug duirn the day which keeps the hols open and lets the gas out. It also has a built-in filter so there is no smell.   

As for your present situation. You might like to have a look at the Convatec stoma collar, which is made from very soft rubberand , like the label implies, it acts like a collar.  I found that these fitted fairly well round the sides of the stoma, guiding the output into the sleeve/bag and away from the surrounding skin. Thus, the skin did not end up as sore as when the faeces came into contact with it. 

Best wishes

Bill

Ali Canada

Hi VJ and Bill,

Thank you for your comments.

I don't want to be irrigating every 12 hours nor do I want to spend 2 hours in the bathroom daily. This is a blow to this system of bowel management. So I guess I start off with every 24 hours and see how that works? Ideally, I'd like every 48 hours so I hope that will be what my body agrees to. I work full-time and have a house to maintain alone. I'm pretty tired at the end of the day and don't know what to expect when I go back to my demanding job.

My next question is, once you've irrigated, how long do you keep the sleeve on for? If it takes, say, an hour, once it's done, is it done and I can take everything off or what?

At the beginning, in between irrigations, I suppose people wear pouches as usual for the first few months?

Ali

Bill

Hello Ali.

As with most things to do with stomas, everyone seems to have different experiences so it's a case of trying things out to see what suits you best.

I only keep the sleeve on because invariably I have an output about an hour after it should all be finished. This is a precautionary measure to save me having to clean up if and when it does happen.  I explained that my bowel seems to be rather slow at emptying so I've adjusted to that. The two hours on the loo is also a precaution so that I can get it all over with. However, if I have other things to do, I simply fold the sleeve up to form a bag and get on with whatever else I want to do. (It's no worse than wearing a bag in 'normal' stoma circumstances.  The main reason I stay on the loo is that I have a computer up there and I work during those couple of hours so for me it doesn't seem like a long time and I feel I am productive during the process. after the couple of hours I can be confident that I am all finished with stoma stuff until the next irrigation. In the beginning, I did wear bags during the day, which turned out to be quite unnecessary and it wasn't long before I stopped that practice in favour of plugs.

I sometimes ponder on the time factor and have concluded that I probably spent in the region of three to four hours tending to the needs of the stoma during the course of a day before irrigation. but that was complicated and aggravated by having to find loos everywhere I went and most of the time they were not suitable for my needs. The irrigation freed me up from all that aggro and I now live a relatively normal life with the stoma playing no part in my daily programme and routine. I could not affords to tend to the needs of a stoma during the course of my daytime jobs and I'm really grateful for the opportunity to irrigate.

I hope this is helpful.

Best wishes

Bill 

Ali Canada

Hi Bill,

I start back at work at the end of December and as it stands now with the pouch system, I don't have much confidence in being in public more than 1-2 days a week or for a few hours a day. I am nervous about the irrigation method until it gets to a routine but it has to be better than the crap I am living now. I just don't want a sudden outpour, if you know what I mean.

Ali

Bill

Hello Ali.

I feel sure everything will be okay once you get used to the new way of managing, whether that is with bags or with irrigation. Something like having a stoma is such a drastic and profound change to our dialy routine that it is bound to be a worry until we adjust. If you stick with it and try to keep a positive attitude, you will find that it all fits into place and you will be able to look back and wonder why it caused you so much concern in these early days.  It is worth bearing in mind that the alternative could have been far worse!

Best wishes

Bill

Ali Canada

Hi Bill,

After close to 7 months, I would have expected a better routine with the pouches than this. It's been a nightmare and I don't call this living - it's existing. It is so demoralizing. It is a constant battle to keep the morale up. I don't want the rest of my life to be like this.

Ali

Bill

Hello Ali.

You seem to sum it up rather well with regard to using bags. It did not suit me at all and was added incentive for me to irrigate.  The irritating thing about it was the fact that there appeared to be virtually no routine at all, except that I had to empty the bag an interminable number of times per day, which kept me tethered to the nearest toilet facility and created constant anxiety about whether there was one nearby. Invariably, they were not suitable for stoma users as the washing facilities were not adjacent to the toilets but on the way out, in full view of the public. That method relies on the stoma doing its own thing with very little chance of influencing the outcomes other than cleaning up after it. I am not a control-freak but I certainly needed more control than that and, yes! you are absolutely right, it's 'DEMORALISING'. I won't pretend that irrigation doesn't have its own frustrations but lack of control is not one of them. There is a definite routine which takes time and can occasionally be a drag, especially when I would rather be doing something else at the time allocated. However, the advantages far outweigh the irritations so I continue with irrigation and am pleased that this is an alternative on offer.

I look forward to hearing how you get on.

Best wishes

Bill.

Ali Canada

Hi Bill,

I am rather envious of those postings where the writer states that there is only a BM once every day or every other day. If only. I think then that the pouch system would not be so bad. I have come to view my stoma as "Shimi" as it is a mill producing stool round the clock. I can eat the same thing twice and get two separate reactions. Today I fight with myself to leave the house as I am out of milk and cream and have to go to the store. Do I have to? I certainly hope irrigation will work for me. I am so discouraged and it is not like me. I have been "let's do this" from the get-go and now, not so much. Talk about sucking the life out of someone.

Ali

Bill

Hello Ali.

I agree, the chronic nature of ths condition can be both discouraging and draining especially if there is no end in sight. However, if life is to go on and have some positive meaning, then it is useful to strive to find and hang onto the positive aspects of what we've got. Whenever I get into a low mood, I think back to what it was like immediately before the stoma and try to imagine how I was coping then (not). Comparing the before and after and thinking about how my condition would have deteriorated without the operation, helps me to put the present circumstances into a more balanced perspective. The other thing I try to do is find a distraction to take my mind off my self-pity and onto something more positive.  In my case, I take the adversity and write rhyming verses about it, which helps me to express my negative feelings at the same time as getting something more positive from the experiences. I do believe that any distraction is better than focussing on the negatives because by doing the latter, those negatives assume a a greater significance than they need to.

I also believe that once you get the hang of irrigation, many of the present negative aspects of having a stoma will fade into history and you will be able to enjoy your life again.  When that transformation happens,  I hope you will take time to support the people who come along with the same problems and concerns that you are having at this time.

Best wishes

Bill 

Ali Canada

Hi Bill,

When I first found out I had cancer, I endeavored to make it a learning experience and make myself a vessel of hope and learning for others who would travel this road. I have said from the outset that good would come of this. From the start, I said I would help others who are going through the process of rectal cancer. Going through the cancer aspect is one thing; going through the colostomy fallout is quite another. The cancer treatment was difficult, but there was an end to it. There is no end to this new lifestyle though I told myself there would be an end to the difficulties as my body healed. My BMs are literally a crap shoot - I never know what to expect or when. Perhaps I am expecting too much from my body at this stage of recovery.

This week I have left the house more as I have had to and, luckily, I have been able to. It has lifted my spirits. I am looking for patterns of behavior to see if that helps. In the meantime, I am trying my system of using what I call the Reset Button which is basically one day at a time mentality and the title of a book I am writing.

It is difficult feeling as though one has no control over one's life, and I am always telling others about ways to empower themselves. The trick with a colostomy is finding out how much we have of that control and using it and living with what we don't have.

Thank you, Bill, for your words of support. I appreciate them.

Ali

Bill

Hello Ali.

I like the title 'Reset Button' and it sounds as if your book will make an enlightening read. It is as you say, there is so much extra to cope with when the condition is 'chronic' and seemingly has no end. One of the difficulties is that, in this state, we are no longer just dealing with the physical elements  and ailments but having to cope with thoughts and feelings, which may or may not have entered our lives previously. Sometimes, it is these things that cause us the most distress and often it is thia spect which other people find it difficult to empathise with. 

In 2012, I wrote a verse on 'Coping with Chronic Illness'. which was my attempt to document this aspect. There were another couple of poems on 'Coping with Illness', which dealt with the physical side of things and there is one more that I'm due to put up on this site soon entitled 'Tiredness 3' - implying that there were at least two others with that title previous to that one. 

It is, as you say, not an easy subject to come to terms with if you are having to live with and through the emotions at the same time as trying to make sense of them. I applaud you for trying to document your experiences so that others can know that they are not alone in their times of greatest vulnerableness and I hope that you manage to come to terms with the chronic aspects of your condition in a way that makes you a stronger person. 

Best wishes

Bill

PS: I think this is an opportune time to post 'Tiredness 3' so I'll try to do that today as a blog.

Ali Canada

Hi Bill,

I'd be interested in reading what you have written if you are open to sharing.

I have kept a journal all through this journey but it is separate from the book I started. I have had to put the book down this past month as I became too negative to write anything in it.

This week, I made an effort to leave the house and try to do things. I was quite disappointed on Friday when I could not do as planned. All Thursday night and Friday morning my pouch kept ballooning out. I am not kidding; it was the size of a party balloon. No sooner would I burp it that it would fill up again. It was quite frustrating and all I could think of when I got up on Friday was how am I going to deal with this when I am back at work? This is the first time this has happened. I wonder if irrigation will help with these issues.

Today I had planned on going to my first painting class. Although I am close enough to walk to the gallery, I decided to drive in case of an incident. I brought my backpack and parked right in front of the gallery - just in case. I could not partake in the Afghanistan tea that was served as I did not know how my body would react. These are the types of things that wear me down. That said, I focused on trying to relax and enjoy the company of others and paint for the first time. I did not eat before I went, just in case, and I realized I will not be able to live like this. There has to be an easier way of living with an ostomy and actually be living.

Ali

Bill

Hello Ali.

Thank you so much for your interest in my written work and I am quite open to sharing with you. However, this information is not necessarily of interest to  others on this site so I will try to find a way to get the information to you without advertising it here. It may seem somewhat strange, in this commercial world for a writer to shy away from publicity but I have never really been enamoured with the commercial side of artistic endeavour, which can get in the way of creativity. I will try to send the information via a message if I still have a complementery membership for this month. If not, The information on all published authors can be found via the book numbering system (IBSN). This can be accessed online but if you are unsure of how to do this, Any librarian would be happy to show you how to find lists of works by particular authors. All my poetry and fictional works will be found under the name B. Withers. My academic work is a different matter as most of it is unpublished and goes under a different name.

It pleases me to think that you are keeping a journal as (for me) this is the form in which I keep the notes that will be eventually used in published documents. I may have up to six books being written at any one time on different subjects and some of them are years in the making. Some of them may never be published but at least I know that I have documented my thoughts as and when they occur. 

It might be useful to share with you that having several works on the go helpsd me to manage any negativity that I don't want to express in the current book. I simply document it separately (usually as a rhyming verse) and it gets published elsewhere. Separating the various emotional reactions to circumstances and documenting them is very useful in clarifying how I feel and deciding what response is most appropriate at any given time. Managing negativity in this way transposes it from negative  into a positive or at least it neutralises it so that I can get on with other stuff.

How come you are burping your bags? Do they not have filters for that sort of thing? Irrigation will undoubtedly sort these problems out and create the freedom to do just as you like during the day without those sorts of worries.

I am so envious of you painting, I did used to paint at one period in my life but unfortunately, it became an obsession and I could not stop before the painting was finished. The last occasion was when I went for 3-4 days without sleeping anfd with very little food and it was then I decided that this was not a healthy activity for me. That was the turning point when I took to writing rhyming verse to paint the pictures in my head,  rather than try to capture them on canvas. I found that writing can be much more manageable and less addictively compulsive than painting but I do miss using the brush.  

I am curious to know if you have designed your own cover for the book you are writing as I would be interested to see it when it's completed, as I would the writing.

Best wishes

Bill 

Ali Canada

Hi Bill,

It never occurred to me to use poetry as a means of expression in my journal. I might try that to add to modes of expression especially when I am going through a negative phase. I think it's optimistic to think of the negativity as a phase as it suggests the temporary nature of the period in question. This means there is hope.

I was feeling hopeful when I went to the paint class. I was concerned about, well, anything happening so I did not eat before I went. I can go long periods without food though I noticed this exacerbates my stool output problems. At any rate, the painting class was (1) an outing, (2) socialization, and (3) creativity so something productive. It is nice to know I can produce more than stool!

As for the bag burping, I had to let the air out. I don't use bags with filters as I find they emit an odor and because my stool, which I am constantly producing, blocks the vent which is probably why there is always a whiff of stool in the air. I am a very sensitive olfactory sense and cannot stand any hint of stink. I must add this has curbed my desire to be around other people as I am constantly worried about emitting an odor but I am managing this better.

I am looking forward to more outings though I must confess I cannot commit to anything as I do not know how I will feel from one day to the next. There is another paint class in a few weeks and I'd like to attend. There is a mini-class trilogy starting this coming Saturday but it is November 11th and I never miss a Remembrance Day ceremony so I am committing to that hoping it will be OK.

Ali

Bill

Hello Ali. 

Your post reminded me of that time when I was contemplating the output into the bag and I penned a verse to try to link it to the colour therein and the potential for painting a picture with the output. The verse was called 'In my colourful rag-tag-bag' and was posted on 09/20/11.  It also became the title of one of my books about living with a stoma.

I feel a story coming on so I hope you will get as much from it as I did when it happened. Many years ago, I had a client who was an accomplished artist (mainly horses and landscapes) whose son had died needlessly by using industrial Xray machines to Xray buildings. The short version, is that this guy became depressed and angry at the system for allowing this to happen to his son. Over a period of months, he expressed some very strong feelings about the exploitation of ordinary working people like his son, with no regard for their welfare and safety.   He had spent all his savings travelling to London to visit his son in hospital and (as a poor artist) wanted me to buy one of his oil paintings. In fact I bought two matching country scenes  but I then asked him if he would do a commissioned work for me. He agreed and the task I set him was to 'paint' the essence of the story he had told me about his son. I told him that he was free to express this in whatever way he wanted to and I would purchase the end result. It took him about two years to complete and I know that it was very difficult for him emotionally to translate his feelings onto the canvas. I still take pride in seeing the picture, which my wife will not allow me to hang on the wall because she says it is not 'nice' - like his other work. At the end of his marathon painting session, he gave up painting for a while and took up playing the piano. The process of using his skill to paint his emotions was such that it was all the 'therapy' he needed to work through the trauma of losing his son and produce something worthwhile  that would stand as a testament to all that he had felt about the injustice of it all.  To this day, I consider the picture to be priceless and it will continue to have a special place in my own heart and thinking.

I was able to duplicate this commissioning concept with a different artist who suffered with a conditon that is colloquially known as 'lions disease' because the bones swell up so much that it distorts the skull into a shape similar to that of a mature male lion. This artist painted me a self-portrait which was the saddest looking lion you could imagine. Interestingly, my wife does allow me to hang this picture because, without the knowledge of the circumstances behind the canvas, it does indeed look remarkably like a real lion. However, to me, it is the spitting-image of the artist and as such is a masterpiece in its own right. Both these artists died of natural causes soon after they completed their final commission and I like to think that they died, knowing that somebody appreciated their inner feelings and their skill to translate that into an oil painting.

I hope you are able to continue your own painting and maybe contemplate how your experiences with the stoma would translate into the graphic form.

Best wishes

Bill 

Ali Canada

Hi Bill,

That is an incredibly interesting story relating to both these people. I applaud your abilities to help both use that medium to express themselves in such a constructive way. I suppose, by illustrating it themselves, it also allowed them to use the canvas as a mirror. Sometimes, we don't always have a clear picture of what is going on because we are too close or are in what I call the "Spin Cycle".

When I was writing the online journal on the cancer website, I used pictures I found online to illustrate how I felt for each particular entry. I suppose that painting could be an adjunct to the writing. I am not giving up on it. I have only had one class and feel it is an avenue I'd like to explore.

Ali

Ali Canada

UPDATE: I saw my surgeon this morning and she is referring me to an ostomy nurse to discuss irrigation. To be honest, I don't know if I would entertain irrigation if my BMs were regular, but they are not yet. It was explained to me that it will take more time as my body went through quite a lot with the surgery followed by chemotherapy and its complications, so my body did not have enough time to heal. It may explain why my BMs are so irregular.

Otherwise, surgically-speaking, I am doing great, no cancer on last week's CT, and should be OK to resume work next month.

mild_mannered_super_hero


I will add just a little to these replies. The amount of time between irrigations will depend on one thing... what you eat and how much you eat.

It's quite simple... what goes in must come out. nbsp

I suggest you eat a high protein, low residue diet. Avoid carbohydrates. A good source of protein is meat, fish, eggs, and cheese. If you are familiar with the Atkins diet, use it. If not, get familiar with it. An added benefit is reduced cholesterol and triglycerides (sorry for the spelling). A downside is you may have to supplement some vitamins. Again, research it.

Everyone is different, but you will gain confidence after just a few weeks. One hour's time should be plenty after you get the water in. Bill has a good idea about wearing the sleeve a bit longer if you are a bit apprehensive about late output.

I don't wear a flange. Put the irrigation sleeve on bare skin and add an ostomy belt tight enough to hold it in place. It won't go anywhere.

I use and suggest Hollister 1796 caps. They require no paste, glue, or flange. "Peel and stick". They cost about 2 bucks each for a box of 30. But remember, you will get 2 days of service, so 1 per day. They are nearly invisible under clothing. A grand bargain. Good luck! Keep us posted of your progress. nbsp; Do not hesitate... a normal life is waiting :)

Bill

Hello Ali.

Glad to hear that you are seeing a stoma nurse to discuss irrigation.  As far as I am concerned, the convenience of not having to tend to a bag all day long, far outweighs the inconvenience of irrigating once a day. Some people can make it once every two days and that must be even better. I feel that MMSH is right when he says a lot of it is down to what we eat. I like to eat what I like, when I like so I am very grateful that irrigation works to allow me not to worry about output issues.

Also pleased to hear that your CT scan was clear. Let's hope that it continues that way and you get back to 'normal' as quickly as possible.

Best wishes

Bill 

619newbie

Hello Ali, you sound exactly how I felt back in May of 2013. I started irrigating 6 months later after being on the iPad from dusk to dawn looking for answers and ways to actually live. No one in my area had heard about irrigation and so I was pretty much on my own. I irrigate every other day and every morning my breakfast is accompanied by all my supplements and generic Gas-X, generic Imodium, probiotics and Devrom (an awesome internal deodorant).

I agree with Bill, we're all different because it never takes me more than 40 minutes and it includes a 5-minute shower.

Wish we could talk about all this in person since I'll be coming to Ontario, Canada this Thanksgiving and staying for a week. Try to find a way that we can get in touch and I'll gladly share all my thoughts on this matter. Best of luck to you today and always.