Romane's Story

My first memory of bleeding problems from the anus occured when I was about 18. I woke in the middle of the night to go to the toilet and noticed blood on the toilet paper. Living close to a local hospital, I attended emergency, where a Doctor did the standard "finger up the bum" test. The plastic glove came out with some blood. His comment - "yes, there is some bleeding, doesn't appear to be serious, go home and only come back if it gets worse".

The bleeding appeared to cease by the next day, and no more was thought of it. Till, when I was in my early 30's, I had another episode of bleeding, this time worse. I was married by this time, and my wife took me to see a specialist. He did a rectal examination, a sigmoidoscopy, and announced that my colon had little cracks, that was where the bleeding was coming from. Over-the-counter suppositories were prescribed for treatment, and these appeared to control the bleeding. Each time I bled from then on, straight to the suppositories, and they seemed to help, the bleeding usually only lasted a few days, and then stopped. But they didn't stop the cramping pains that were starting to appear with my bowel movements, nor the urgency which also started to develop, both worsening with each episode. It was during this time that I first started to lose control of my bowel, and on one occasion actually crapped in my pants while at work - all male "macho" type environment, embarrassing in the extreme.

I was free finally from episodes of pain and bleeding for about 3 years. Then one day, bleeding again. I was by this time in my very late 30's. Again, my wife arranged for me to see a specialist. On the way to my appointment, she explained why she was worried, something about Colitis or whatever (she is a Nurse) - didn't make much sense to me at the time, all I knew was that I was bleeding heavily, I had frequent urgency to move my bowels, often at the most inconvenient time, and having a bowel movement was a painful experience.

At the specialists, a sigmoidoscopy. These would have to be the most uncomfortable examinations I have ever had the misfortune to undergo, as well as being an embarassment. Hey, I'm a male - I was brought up that things only come OUT of there, never into there. The finger thing is bad enough, but having a big hard solid plastic tube and being pumped full of air in there was, to put it mildly, very uncomfortable.

Diagnosis - Ulcerative Colitis - "..... but we can't be sure till we have a full examination". He wanted me to have a colonoscopy, explained in about 6 words what it was, and then focused on the dangers - very comforting. "... and I want you to take some tablets to help the treatment till we have a time for this examination. There are few, if any, side affects, and they will help to control the bleeding". Prednisone and Sallazopyrine (sulphasalazine) was what was prescribed. After checking the side affects in a medical reference, I never even got the script filled. When I saw him a week later, I fronted him with his lie. His answer - "Yes, but if I had told you the side affects you would never have taken them". I gave him a few choice words and left, never to return.

Again, my wife was the mover. I had returned to using just the suppositories, but their affectivness was next to useless. I refused utterly to return to any medical practitioner over the condition as a result of the last experience. In deperation, she contacted the large Natural Therapies college in this area, and asked who she could see. She was given the name of a Naturopath who had an good reputation in the area, and she made contact. Because I was bleeding, I was accepted as a patient immediately, and instead of an appointment more than a month away, was able to see him within a couple of days.

I had no idea what to expect. His way of diagnosis was totally different to anything I had ever been through before. He explained what he was doing as he did it, and at the end of the examination, explained what the medications he was going to give me were for. And, he radically altered my diet.

I was sceptical, but I took home two bottles of herbs (one tasted so bad, that every time I got a bottle I took a texta and wrote in BIG letters on the label 'YUK' as soon as I got it home) and the printed instructions for my new diet. Within a few days of commencing treatment, the symptoms cleared and I was able once again to live my life as a normal person. To start with, weekly visits to the Naturopath, quickly turning into monthly, then 3 monthly visits. Every 5 weeks, in to obtain a new supply of herbs.

For two years I followed his treatment. By that time, I felt was "bullet proof". I was 'cured', and no-one could tell me any different. Also, I had had enough of the diet, it restricted me from so many things I wanted to eat, and it was so hard to find acceptable substitutes for the banned foods. So, I abandoned treatment.

All went well for about 12 months. Then, just when starting a new job, it started again, and worse than before. This was when I developed my definition for 'urgency' - "Is your butt over the toilet? No? Too bad!!!" Luckily, I always made it, though often just barely.

Again, my wife took matters in hand. She convinced me to give the conventional medical establishment another go. Off to our GP for a referral to a Gastroenterologist. My GP was initially going to refer me to the same specialist as before as being the best in the business. He quickly changed his mind and referred me to a different specialist when I gave my lowest possible opinion of the initial specialists' qualifications as a medical practitioner and as a member of the human race.

An appointment was made, and remembering my previous experience, I went in with an aggresive attitude. I came away impressed. He explained what he was doing when he did anything, and why. He drew pictures of the extent of disease in my bowel to go in my file, and explained what they were as he went, explained briefly what the disease was, provided some historical prespective, told what the drugs were that were used to treat it and their side affects, and why I needed a colonoscopy. Everything was arranged.

Yes, Golightly tastes bad. But not as bad as those herbs I used to take. Still, I cannot say that I ever enjoyed the taste of lemon flavoured dishwashing liquid - that is what it tasted like to me. Yech!

The diagnosis from the colonoscopy was positive. Finally, I knew definately what it was that I had. Before, it was only a strong possibility, now it was IT. Treatment was Prednisone and Salazopyrine.

This was the start of a series of relapses. I would take treatment, see the Gastroenterologist regularly, he would begin to reduce the Prednisone, I would come off the prednisone, I would think after a few months just with Salazopyrine that I was OK, and stop the Salazopyrine. Go OK for a few months, start bleeding again, back to the Specialist. And so the cycle went. Every two years, without fail, a Colonoscopy, unless needed earlier. My file slowly grew, and my disease got worse with each relapse. The specialist added immuno-suppresants to the regime.

Approximately October of 1997, a bad flair up. Treatment again brought it under control, but when we started to taper the prednisone, the bleeding would start again. As well, a blood test for other purposes by my GP indictated that I had diabetes, so referal to a specialist for that, more tests, and diagnosis confirmed. This made my Gastroenerologist worried - Prednisone and diabetes, *very* bad combination. At least my diabetes was controllable by diet alone.

By April 1998, we had lost control. Whilst on a high dose of Prednisone, no bleeding, but the specialist was not happy - he was very concerned about the long term usage of Prednisone, particularly at that level, and considering the diabetes. We discussed the option of surgery. This had been touched on before, but now it was fast becoming a necessity. In crude terms, (he explained it ever so much more nicely) surgery or die slowly, maybe 12 months, max 2 years to death. Not much of a choice. I was referred to a Surgeon.

The Surgeon explained the options, the procedure, the consequences. Given a choice between a Pouch procedure or an outright ileostomy, I opted for the ileostomy. 1 surgery was enough for me. By this time I am in my late 40's, and the issue of wearing an appliance was of lesser concern than facing two surgeries. He advised me to talk to the Stomal Therapist at the hospital where the surgery was to occur, which I did. I came away from her far more comfortable with the whole concept of a pouch, and was given information to take home, as well as samples to play with, become familiar with.

Surgery was initially to occur in early August 1998, but for one reason and another, did not occur till 30 September 1998. Thanks to the preparation given me for this surgery by first the Gastroenterologist, then the Surgeon, and finally the fantastic support supplied by the Stomal Therapy Nurse, leading up to the surgery, I went in with a very positive attitude. Yes, I was still scared, but that was taken care of by the pre-op drugs. I don't even remember being put to sleep, though later was told I was holding a coherent conversation right up to the point of going to sleep. Surgery took 5 hours.

My first memory following surgery is opening my eyes and seeing the ceiling moving above me as I was wheeled back to the ward. For the first time in so long, I actually felt well - drugged out, groggy, all the things that go with coming out from major surgery, but I actually felt better. So, feeling cheeky, promptly opened my mouth and let go with a mouthful of cheerful cheekyness to the person wheeling the trolley (and got it back ).

It was 2 1/2 months before the surgeon would allow me to return to work. The first days included anger and denial, a severe infection in the anal wound (return to hospital for 3 days), blockages (1 of which was a return to hospital for 2 days) and a viral infection. Getting used to the appliance, learning more about managing my ileostomy and learning what was OK for me to eat and what was not, though a steep (and occaisionally a painful) learning process, had its additional benefits in that I learnt more about myself and about other people.

And the diabetes? 6 months after surgery, I returned to the specialist for more tests. The results - not diabetes, but mildly glucose intolerant. Yippeee !!!!!. We can only assume that the diabetes was the result of the stress on the body from the Ulcerative Colitis combined with the drugs required to control the Ulcerative Colitis.

As I write this, it is 20 months post-surgery. If I had to go through this surgery again, would I do so? Emphatically yes. I have not felt so well in as long as I can remember. There is almost nothing that having an ileostomy prevents me from eating. I am more active, have more energy, have a quality of life that I never knew existed. Thanks to my surgery, I can now go out and not be looking for the nearest toilet. I can perform heavy labour in the garden landscaping and building. Because of my surgery, I now have a web presence with the World Ostomy Resource and have commenced a small Internet business. I can enjoy quality family time.

Romane

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