MAKING SENSE OF STOMAS

MAKING SENSE OF STOMAS.
Many years ago, I started writing a series of articles on things that I needed to make sense of from my own perspective. The work began as a very personal rendition of things that were bugging me and needed putting into a logical rather than an emotional perspective. This led to an initial working title for a book ‘Welcome to my World’. However, as with so many of my literary endeavours, the articles got translated into rhyming verses so there seemed no need to pursue the prose.
One subject that I felt the need to ‘make-sense’ of, was coming to terms with all things surrounding stomas. To this end, I have written and published three books of rhymes (four if we count the ‘trilogy’ where they have all been brought together).
However, I now feel that there are things I need to express, which do not translate so easily into rhyming verse so I’m working on a chapter relating to ‘MAKING SENSE OF STOMAS’.
The idea of sharing this with my stomata friends, is so that those who might wish to comment on the article or make additions to the draft can do so before it is published. (if it ever gets that far!)
Any contributions will of course be given due acknowledgement either by name or by way of a collective recognition.
I have begun with what makes sense ‘before the operation’ and hopefully, will progress to what makes sense ‘afterwards’ so, if contributors would bear this framework in mind I will be very grateful.
Below is what I have written so far:

Bill, how true are the things you say? When there's no hope and it's time for surgery, you are told all kinds of things, but not the truth. I was told that after the surgery, you will be able to drive for 2 hours before the need to go to the bathroom (untrue). It would be nice to know the truth prior to the surgery so that one could prepare for the upcoming issues, because you encounter many issues in the beginning! Then, in your own way, you learn how to deal with the new you, but it would be helpful if you did have psychological help initially! Because this is, in fact, your life and your organ that you have had until this particular point. This year, I had to have a colonoscopy, which is the first time I did it with the stoma, I must say. I even told the doctor how I missed my anus! Thanks for your blog making sense of stomas. Have a great evening, Bill! Angelicamarie

Hello Angelicamarie.
Thank you so much for replying so positively to my blog. I have made a note to include a comment in the next section about the first colonoscopy after getting a stoma. All such ideas are gratefully received.
Best wishes
Bill

I notice the same thing that hospital staff do not tell us that much before or after the operation... and those that have an emergency stoma... well they were not prepared... it must be a shock for sure... I knew what I was going to have as an operation so it was easier to cope...

http://www.securicaremedical.co.uk/Menu/Securicare-Blog/ArtMID/15413/ArticleID/103/When-stoma-surgery-is-an-emergency-coping-with-the-trauma.

Hello Mike.
Thank you for your post and the link, which I found very interesting and informative. I will revisit the site and read some more as and when I find some time.
Best wishes
Bill

Words of Encouragement from Ostomy Advocates I Hollister

Hi Bill,

Good luck to you in your efforts to help people understand what they are in store for when they acquire a stoma. There are so many aspects to this issue that it would take a book, let alone one chapter, just to map out the complete terrain of ostomy life. In response to your invitation, I have a suggestion on supplies and a comment on stoma location.

The future stoma recipient will need a lot of patience and practice in learning how to successfully apply and use ostomy supplies and how to prevent and manage mishaps. One or two sessions with an ostomy nurse is only Ostomy 101. Patience, practice, and courage.

Secondly, regarding stoma location, if the stoma nurse needs to direct the surgeon where to place the stoma, I would advise that patient to run away from the hospital as quickly as possible. A competent colo-rectal surgeon knows that stoma placement is a medical decision which should be carefully discussed with the patient well ahead of surgery.

I was very fortunate when my GI doctor informed me years ago that I would need an ostomy. He spent time explaining everything and even had me meet with one of his patients who had the procedure done a year earlier. This introduction was very helpful in preparing me for the things to come. I am sure your writing will assist many future ostomates to have informed discussions with their doctors and cope effectively with all the anxieties of this new element in their lives. Best wishes for publication!

PB

Hello John.
Thank you so much for your reply and useful comments/contributions.
In your first suggestion about patience, practice and courage, you have anticipated some of the points currently being made in my list of 'making sense:post-surgery'. Prior to starting the chapter, I had a list of p's to include somewhere in the chapter: Preparation, Polar-opposites, Perspectives-positive/negative, Problem or challenge, Patience/understanding and Perseverance so your suggestion fits nicely into that 'P' framework and will be included in the next section of the chapter.
With regard to the decision about location of the stoma, I think that my surgeon viewed the process as 'teamwork', where the discussion about where it should be located was delegated to the stoma nurse who, coincidentally was his wife so I presume that he would do as she instructed.
It sounds as if you had a very good GI doctor who felt that it was the right thing to do to spend that pre-op.time with you. Unfortunately, the NHS is hard pressed to let anyone spend that sort of quality time with patients, so the best of our surgeons have to make other arrangements for a similar process to occur. Fortunately, a surgeon can insist on someone lower down the ranks undertaking duties that knows are important but he would not have the time to do for himself. I suspect that there are a few people who don't even get this service because their surgeons do not consider the patient as important or relevant enough for that time to be spent on them. - Just my cynicism creeping in!
Thank you again for your contributions
Best wishes
Bill

One of the things I noticed with regard to my cancer treatments (pre-stoma) was the fact that although the doctor will go over a few of the major expected or possible side-effects, many of them are left out of the discussion, only to have to have a later discussion of "Doctor, this is happening to me" followed by "Yes, it's a possible side effect of the treatment, I am not surprised." Well, maybe he wasn't, but I sure was! While I (as a patient) was pretty ticked off that not everything was revealed before my decision to go ahead with the treatment, he (as the doctor) was tired of people chickening out of the treatment and allowing themselves to die rather than be inconvenienced by the side-effects. I guess it is a balancing act on their (the doctors) part, and both sides to the discussion end up a bit miffed over it all. But, as I told him many times, I am not the usual patient. Once I made the overarching decision "I want to live" nothing he said was going to change my mind, and I wanted to be more prepared for what was coming than I was. In addition, the doctors and nurses sort of get jaded about it all. They know that eventually everything will be better overall if you (the patient) will just get with the program, but they have forgotten the journey required to get to that point, and they just no longer get what is going on in our minds during that journey. That's not an excuse for their behavior, but it is the reason for their behavior.

Hello Dana. Thanks for your post.
I totally agree with your perspective and your reasoning about it not being an excuse for their behaviour. Some of them seem to act as if the patient is almost irrelevant to what they want to do and therefore they should not have the right to prior full and frank discussions on the side effects.
What can be done about this situation, I do not know, other than to voice our objections to those medics who choose to adopt this approach.
best wishes
Bill