Rosalind’s Story – The First

How I Find Living With a "J" Pouch
(or an ileo anal anastomosis - with staples)

In some ways, in a similar vein (or intestine) as a number of people who name their stoma I have a personal affinity with my pouch - though I don't name it.  I think of my pouch as full, needing to be emptied, as being a bit runny or gassy tonight, or as being very good because it's slow.  But often I don't think of my pouch at all, just like the old fashioned way of going to the toilet, you only thought about it when you were in need and hopefully only once a day (before U. C.).

I needed bowel surgery after having suffered Ulcerative Colitis for two years.  I had my J Pouch operation finalized in October 1994.  It was a three- stage procedure where the large bowel was removed in March 1994 and an ileostomy made, the pouch created and a loop ileostomy made in August 1994 and finally the loop ileostomy closed in October- 1994.  My health improved immediately- though I have everything in control now, it took two to three months for the pouch to settle into routine after the operation.

My day to day life is not much different to the way it was before Ulcerative Colitis except that I have learnt to live with less pressure - i.e. I've learnt a lot about myself and what causes me stress.  Illness can be a great time to really learn about yourself and just shows how some good can come from all experiences.

The reason for my writing this article is to give prospective pouchees and their families, one person's day to day experiences in how their pouch works. I feel some of the quite personal details are not often discussed with the people facing this operation.  Somehow it seems easier for people with ostomy bags to discuss how their stomas work, maybe because stomas are often thought of as third persons, but our bottoms are very personal.  A pouch, I believe, is very similar to an ileostomy, it just empties from a different place into a different receptacle.

So OK down to the juicy details .... I need to go to the toilet to empty my pouch about seven times a day.  I've had to really think about this, because I don't count. I rarely have to get up at night.  A lot of this depends on how soon after dinner you go to bed. I DO HAVE CONTROL.  If I need to go to the toilet but cannot get there I can hold on for about an hour, I do not feel absolutely desperate in that time, I am quite comfortable and I'll go to empty the pouch when it is convenient.

Part of the control question is being able to tell the difference between gas and faeces so that you can release the gas.  (In a suitable place of course!)  YES I can tell the difference.  At times I can be quite gassy but I don't avoid gassy foods altogether.  I don't know how I know, but I do, it feels different.

My faeces are generally a paste.  Occasionally they are formed in little nuggets, but not often.  I guess that is the aim.  However, I do not concentrate on what I eat, I just eat what I want while being conscious of good health " but I don't avoid foods because they might upset my pouch.  More fibre in the diet will add bulk as with other people.  I, like everyone, should have more fibre.  I did experiment once with my eating but could not determine any results so I do not worry about it and have no problem with the thick or sometimes thinner paste.  Spicy foods and beer I find are the worst culprits for thinning my output.  I do not partake of these as much as I used to, but I do not avoid them all together.

Fluid is very important.  It will be necessary to drink more water than previously.  I find water is the best way to get the fluid required.  Cordials and fizzy drinks do not quench my thirst.  I do drink about five cups of tea or coffee a day as well as five or six glasses of water.

I don't consciously make a point of it, I just drink when I'm thirsty and I seem to get thirsty more often than I used to.  I'll take a water bottle if I'm going out into the bush or to the beach for the day or even just for a couple of hours.

I find a barrier cream is necessary.  Some people do not use one all the time, however, I find I need to and I very rarely have problems with my skin because of it.  As my faeces are a little thin, sometimes it can sting quite severely if there are any tiny breaks in the skin.  I use a cream called 'Penaten', which is a zinc based nappy rash cream from Germany (it comes in a blue tin).  It is a lot thicker than the zinc cream we use on our noses and also includes a substance to alleviate prickly heat.  It is because it soothes as well as protects that I find it the best.  I carry a little jar (a lip gloss jar) of "Penaten' with me most of the time.  I will go without it for a few hours if I don't want to carry my bag.  If my skin has developed a rash, usually because my faeces have become thin, I have found that AM0LIN's night guard will relieve the rash very quickly (again this is a nappy rash cream, available at the chemist).

One major challenge I find, is working out how to urinate without emptying the pouch.  Due to our wondrous anatomy girls, some nifty pelvic floor manipulation is required to relax the front passage while keeping the back passage closed when sitting.  This may be required if you want to increase the capacity of the pouch or you are caught short in the bush without paper.  I don't worry about it too much.

Since my operation, I have swung right back into an active, happy life. I found a wonderful and supportive partner during my illness, who has stuck by me.  I work full time as an accountant, have got back into my horse riding and swimming.  I also ski a little and enjoy tumbling, climbing and playing with the kids. The only concessions I feel I make from living with a J-Pouch is to carry my little jar mostly everywhere and if I go bush, either walking or riding, I will carry a roll of toilet paper in my day pack/saddle bags.

Best wishes to all prospective pouchees!

Reprinted from the "Thoughts of YOU" membership folder.  Based on the article that appeared in "Just for YOU" (Volume 6 - December 1996)

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