Sixteen Years Later
I was diagnosed with ulcerative colitis in mid-1992 at 33yo. I was put on cortisone and Imuran, but within a year my gastroenterologist suggested that I would need an ileostomy. The large bowel was ulcerated along its entire length. However we would try one more time to treat it with the cortisone, by reducing the dosage at a much slower rate to find a dosage level that would keep the disease at bay. It was during this time that I first found the YOU group. I was researching ileostomies (just in case it the treatment didn’t work) and went to the Ostomy Australia supplies office off the Bourke St. Mall. Someone there informed me of YOU and gave me Anne’s number, the President at the time. I met Anne, Lilian and Helen in the Bourke St. Mall a couple of weeks later during Ostomy Awareness week, while they were manning a table. My gastroenterologist had also mentioned that it was now possible to have this new J Pouch procedure for ulcerative colitis. Living close to Deakin University, which had a good nurses’ school, I would go there to look up the medical journals on J Pouch. (There was no internet then.)
By March 1994 it became evident that I would need surgery. I had decided that I would go ahead with the J Pouch, so over the next 8 months I would have 3 procedures. First the ileostomy, second the creation of the J Pouch and a loop ileostomy and third the closing of the loop ileostomy. My surgeon had only one contact phone no. of a previous patient who was willing to share with me. The process had only been in Australia about 5 years. I had decided that it was only a change to plumbing and it sounded good to not have a bag forever. (Wearing a bag hadn’t bothered me that much, but I thought if it is possible to go without one, why not).
The first 2 or 3 months after the completion of surgery was the worst. The output was originally very thin until the small bowel started to absorb water, as the large bowel used to. With thin output, the skin around the anus became very sore and itchy. I wore a barrier cream, but patience and careful wiping was needed to not make it worse. My energy levels were also low for the first couple of months while my body built up strength again and my hydration levels grew. I use a barrier cream called Penaten which is a zinc based cream with an ingredient to treat prickly heat. These days I only need it occasionally, but I always carry some with me. It is not good to be without it if I need it. I needed to go to the toilet maybe 12 – 15 times a day in the first couple of months, but the number of times decreased and after about 6 months it was down to about 8 times a day. This is still where it is today, which includes one or sometimes two overnight visits to the toilet.
I have had no major problems with incontinence. Occasionally when I get sick, cold or flu, my output seems to speed up and I need to go to the toilet more often. Sometimes at those times I need to rush, but I haven’t had an accident like I did with ulcerative colitis. I remember when, in the first few weeks after surgery, I thought I needed to go to the toilet, but then I thought “ that’s just gas” and relaxed a little and alas it was just a little gas. I felt so clever to be able to discern the difference.
I seem to be able to eat anything. The only things I am wary of are spicy food, beer, fish and some fruit. I do eat all these things (except beer) but only in moderation. I need fruit in small quantities, or stewed. My output speeds up and gets thinner if I eat too much of these foods. I then get dehydrated and from there get tired and cranky and a bit mental. If I feel my output needs thickening, I eat rice or pasta. Other than these few foods, I haven’t been able to discern any affect from any other foods. I need to drink 2 to 3 litres of water a day. I do make the mistake of leaving my water intake to when I feel thirsty which is late in the day. Therefore I need to get up a night. I am starting to drink more in the mornings.
I have always been active, particularly horse riding. Having a J Pouch has never affected any of the activities I do. I used to jog a little, swim, do yoga and exercise classes. Of course all of this was in moderation also (as you will see if you see a photo of me). I have not had any incontinence issues during exercise. I used to trail ride for whole days away in the saddle. I would take my little jar of penaten and some toilet paper for stops. It wouldn’t do to be without either of those.
My life after surgery has been very normal. Apart from a few periods where I have felt “run down” I haven’t had any problems with my J Pouch. I can tend to overdo work and sometimes not eat and drink properly because I am overwhelmed and stressed. I then get dehydrated which can add to the stress. My bowel may than overwork and I can then have skin issues. Management of the J Pouch doesn’t always need a conscious effort, but I need to be conscious to not allow life to overwhelm me, not just for my bowel health but also for my mental health.
The above was presented at the Panel Discussion as part of Y.O.U. Inc's "Let YOU Be Heard" Day (October 2012)