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

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

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.

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

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 

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

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 

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

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.

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 :)

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 

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.