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Living with an iliostomy.
An Iliostomy? I have never heard of that, what is it? This is the usual comment when I tell someone that this is the operation that I have had.
This operation was inevitable after many years of suffering with a stomach complaint that none of the doctors at that time could diagnose.
Crohns disease was diagnosed two days before I was admitted to hospital. I had been so ill for so long that I thought that I must have Cancer and no one would tell me.
I used to dream that I was dying and nobody would take any notice. I was in a disastrous marriage at the time, but with three young children could do very little about it. My husband would not accept that I was ill and I was regularly being accused of malingering to get out of the housework. I used to love my home and housework was not a chore, I enjoyed cooking, and worked from home full time, designing knitwear.
Maybe even I didn't see this illness creeping up on me. I would go to the doctors, who said that I had indigestion!
Finally I left home with the children, my relatives looked after them, thank goodness. I was so lucky to have them to do this for me, as within a week of arriving at my Aunts, I was admitted into hospital where they diagnosed crohns disease. Many months later I was informed by the Sister on the ward that I was given just three weeks to live when I first arrived.
That, obviously, was why all the lovely nurses gave me so much of their time and attention. It was a huge ward with at least twenty-four beds. Total bed rest became easy, letting go of the worry of the children and how they were keeping was not. Three months of this hospital routine lifestyle soon came and went. As did the seven hour op. with two surgeons together. On that day I was given a 50/50 chance of survival. This is not usual nowadays and operations and techniques are much more sophisticated. I was really ill though, weighing only 5 stone at the time. I died a clinical death twice in the week, after the op, but that is another story.
Three more long months in the hospital and I was ready to convalesce and return to my daughters………………… I have given this background to enable you to understand a little of my new lifestyle.
All that was thirty-two years ago now. I have come a long way living with my "bits & pieces". (I call my appliances.)
LIVING WITH AN ILIOSTOMY…..
An Iliostomy is a small round hole on the right side of the stomach just below the belt. (colostomies fashioned from the colon are on the left hand side) The iliac (the small intestine) is brought through the hole then turned outwards, and stitched to the rim of the hole. This heals itself very quickly. The result is a stoma that is then covered with special dressings, which I will talk about later, and a pouch (small synthetic bag) is attached.
Because my Crohn's had been left undiagnosed for so long, much of the large intestine had been infected, along with the rectum. Consequently the whole of the colon, rectum and some of the small intestine had to be completely removed. It was quite a shock to the system to find that I had a 5 inch scar & stitches on my seat! My stomach was stitched from the sternum to my groin. With so many clips and stitches, my children nicknamed my scar the 'telegraph pole'. Thank goodness that things have improved now and diagnosis is much quicker. The hardest thing to accept was the fact that I had given birth to three daughters without one single stretch mark. Look at me now! Be prepared for a shock, but, it soon gets pushed into the background of your mind as everyday life takes over.
At first some patients can find it quite difficult to change these dressings, preferring the nurses to help each time. My attitude was different, I preferred to cope by myself, and gave the nurses quite a hard time. I was in a teaching hospital and the staff really hoped that I would let them practice. No way!
Arriving home was another trauma altogether, until I rented a three bed roomed house and gathered my girls together with me at long last. Six months separation had brought about quite a few changes. My daughters now became my friends and little helpers.
I was home, free and very much alive. Wow, a second chance at life was beyond my wildest dreams. I was going to make the most of it and my children would enjoy every minute with me.
We survived our first year, just about. There were tears often when trying to cope with changing my Bits & Pieces. Also there were many adjustments that had to be overcome, for instance my youngest who was just three years old was unable to sit on my lap for a cuddle, this was the saddest thing. She did perch on my knees though. Painful scars prevented this closeness but I am glad to say they soon healed.
On leaving the hospital I was given a diet sheet with what I could and couldn't eat. I couldn't believe my eyes, I was only 34 years old and feeling well for the first time for many years. I was not going to treat myself as an invalid. My stubbornness prevailed, I worked my way down the list of forbidden foods, soon learning what I could and couldn't eat. The only 'no! no!' was a raw apple. This, if not chewed into miniscule pieces, will not break down inside you. A block soon formed and I was back in hospital until it passed, painfully. No more raw apples for me for a while. I am happy with Chilli, Curry, all salads, tomatoes, peppers, all hot spices, all the puddings including apple pie! Lucky me! This is so much more than I could eat before.
Clothes, as you can imagine might become a problem, don't worry, there are specially designed clothes available at a price, both for men and for women. Often at a high price though! I have always managed to find clothes that are fashionable, comfortable and even quite slim line, off the shelf. Anything really tight around the hipline is to be avoided for obvious reasons. Go cautiously at first, be comfortable and then experiment.
Activities are no problem at all! I regularly go swimming in the pool or in the sea wearing a normal swim suit, I even sport a 'two piece'. I love it! I have water ski-ed, Paracended and watched the beautiful fish while snorkelling in a wet suit. I have been ice-skating and trampolining. I have travelled overseas many times for holidays, even to America, Israel and all over Europe. Turkey was fun, you should see the toilets! Especially on the Princes Islands. However I managed. I never go anywhere without my Bits & Pieces, stored in a little makeup bag. No one has ever known about my iliostomy unless I chose to tell them, which is very rarely anyway. I wear close fitting stretch cotton pants under my clothes, even under my swimming costume, which keeps things in place, and is very comfortable.
The body gradually comes to accept all the differences and learns to cope very well. Without any large intestine your body can't absorb liquid so it is very easy to dehydrate. Drink loads of water! Eventually the small intestine takes over the role performing all the functions as usual. When you eat a meal, this surprisingly passes through quickly, only staying inside for three to 12 hours usually, so all the goodness has to be absorbed quite quickly. Eat little and often. Try not to eat a large meal at night. Initially you will find that your intestines gurgle, especially at meal times. It can be very embarrassing, but don't worry it soon goes away, just smile and say something like "I am so sorry, it is my new plumbing!"
Eat quality food rather than masses of stodge. If you get a stomach bug, I find the best remedy is to eat bananas and yoghurt, the fresh live organic kind. Dr Collis Browns remedy, from any chemist works miracles for me. You do not need a prescription, just proof of requirement. I don't take many supplements, only the Omegas, because I am vegetarian/vegan. In fact I never take any painkillers, these were partly the cause of my Crohns. If I am in pain, for whatever reason, I have a Brandy and go to sleep, where possible. This works for me, I don't recommend it to everyone. Please check with your doctor before you decide to do the same. My body has now accepted that I don't rely on painkillers and helps me cope.
Another slight disadvantage is the fact that without the large intestine your body has lost its 'central heating'. It is often very difficult to keep warm in the winter months. Many patients with iliostomies go to a warmer climate in the winter, Spain or the Canaries usually. Not everyone can do this, so be prepared, thermals in the winter can help.
There are many different appliances on the market, a stoma nurse will help you choose which one will suit you the best. Having chosen which one you can manage, you can order them from the doctor on a monthly or three monthly basis. Alternatively you can have them sent directly to your home address in plain wraps, usually within a day of ordering.
Amcare, the company that provides this service, will post them to you, anywhere in the world, should you need more while away on holiday, or working overseas. If you have a permanent iliostomy you will automatically get free prescriptions from the Health Service.
The Iliostomy Association can be very helpful and it is worth joining. This will keep you informed of any new appliances and any meetings or get together in your area. I have never joined this, purely my preference, because with three young children to bring up I never had the time.
You can get a pass from your doctor that enables you to jump queues, especially at toilets. I have never bothered with the passes though. Only occasionally do I need one in that much of a hurry. I just say, "Excuse me I am disabled (even though I don't look it.) Please can I go to the front" Only once was I questioned by a young lady, who said in a loud voice when at an Earls Court Exhibition "What is wrong with you then?" I told here quite calmly and explicitly. She blushed bright red and said "you don't have to go into details". I wasn't embarrassed at all. You don't need to be.
One thing I found really hard to get used to, I really must mention, because anyone who has just had or is about to have an iliostomy will probably feel this. If someone has an amputation of a limb, the brain still sends messages to that limb and they feel as if it is still there. The same applies to the rectum. (I am being explicit now.) I would regularly wake up during the night imagining I was going to the toilet to empty my bowels, something I can never ever do again in this fashion. The sensation was awful. I awoke scared, frightened, and thinking everything had split open. In my mind my bowel was still normal and functioning. This sensation disappeared after a few years though.
Now I am really glad that I have had this op. no stress is needed for bowel functions, in fact I am not often aware that anything is happening. All the strain and stress has been taken out of my life and I am much more calm and relaxed. For many years this dream would repeat itself at night. Now I am free and the feelings have gone away. Thank goodness. As a bonus I really keep fairly healthy, as you know, most of the bugs and bad bacteria live in the large intestine. Without a colon I have no bad bugs!!!
The dreams were probably the worst experience that I had, but definitely worth putting up with, because without this op. I would not be here writing this now.
My quality of life since the Summer of 1973 has improved beyond all my wildest dreams. My family have grow up, married, have presented me with numerous grand & great grand children. I have a wonderful partner, we have lots of laughs, life is good, and I am so happy!