Henry's Story

Your Surgeon

For various reasons I got to know a few Doctors and Surgeons during the last thirty years. I found as individuals they all had their own style dealing with their patients. I never had any problems with any of them. The Surgeons always explained their intentions well, so I never felt I had to take up their offer to look for a second opinion. However, it is paramount that you do feel comfortable with your Surgeon. The relationship to him/her has to be based on trust and mutual respect. You'd expect him/her to do all of the following in order to gain that trust:

1. To check you thoroughly.
2. To answer all your questions and to inform you well.
3. To explain options and alternatives.
4. To offer a consultation with another Surgeon for a second opinion.

You may have already met your Stomal Therapy Nurse (STN). In other parts of the world they are called Enterostomal Therapists (ET)'s. In this report I'll be calling them STN's though.

He/she would have explained their role to you, informed and educated you as far as it is possible at this stage and supplied you with various leaflets, books, a video etc. The advice is to attend a hospital where a full time Stomal Therapist works or at least ensure that you receive a daily visit by a STN while at the hospital of your choice.

Your STN looks after a great number of ostomates daily and therefore has the experience to guide you through your ostomy and make sure your family's and your world is turned upright again. He/she will do a lot more for you than you can anticipate at this stage. He/she is the person to call if you have any concerns, questions or problems. They'll also visit you at home if you have a transport problem. You may be in touch with him/her for years to come, so never give them a hard time! You simply couldn't make it without them.

Circumstances brought me in touch with two STNs. I felt comfortable with both of them. They are forever helpful. And yes, we always have a bit of a laugh together too.

Fellow Ostomates

Your STN can get you in touch with another ostomates. You may find it comforting to listen to someone who's 'been there done that'. Naturally there are quite a number of internet sites too. Some run forums where people can express worries they may have, share experiences or find someone who can help them with advise.

My Case

Here is a short description of my case. You may want to use it as a 'platform' to relate to your own situation.

• End of May 97: my donation at the Bloodbank was refused, because my haemoglobin level had nose-dived within a few months. A blood test was made.
• In June 97 my GP checked me and referred me to a 'Consultant Surgeon & Endoscopist'.

Next day at the specialist: Yes, I had a tumour in the rectum. Yes, I needed a colostomy. No, it won't be reversible in my case.
Another blood test, a CAT scan and an appointment for a colonoscopy three days later.
• The colonoscopy was soon over. No problem, no pain. I felt a whole lot better.
• Chemo- and radiotherapy for five and a half weeks from mid July 97 onward followed.
• Then six weeks recovery time.
• Colostomy (abdomino perenial resection) at the beginning of October 97.
• Discharge from hospital 10 days after the surgery and recovery at home.
• Back to work at the beginning of December 97.

• Reasonable fitness and good strength.
• Joining the increasing trend for pre-op chemo-and radiotherapy, gave me extra time between diagnosis and surgery.
• Living in a city, with all the services nearby.
• Private health cover, which gave me some choices.
• Having an understanding boss, who gave my health and recovery first priority.
• Moral support by family, friends and workmates.
• Consultations and education by the STN (books, video etc.)
• Effective pain control after the operation and no complications.
• Last but not least, I had a great surgeon and great doctors, nurses and assistants looking after me and informing me about my condition and my expectations.

Take a realistic look at your case. Write down everything in your favor. Most importantly, don't forget your determination to make the best of your future! Because:

The initial shock was the worst. It probably lasted till after the colonoscopy. We were happy to be left alone during those days. In retrospect it is hard to tell whether the cancer, or the prospect of having the colostomy worried me more at the time. But then: If you worry more about your ostomy, think again: It's your condition that kills you, and it's the ostomy which saves you!

In time you'll be able to return to your pre-operative lifestyle: with work, gardening, socialising, travel, sports
etc. And you won't be recognisable as an ostomate. Of course they'll take some of your intestines, but there should be plenty of gut left. It is time to settle down and get organised!

Up to the admission to hospital I worked practically full time. Living a normal life was possible and gave me confidence and satisfaction. Mentally I was preparing to fight the cancer and to cope with my upcoming colostomy.

• An ostomy is a major operation, but there is worse. There always is!
• Thousands went through with it. If they can do it, you can too!
• If you are given time, finish those jobs in and around the house! It's good for your stamina and peace of mind. - And: after the surgery you won't be able to do them for a while.
• Look back in your life. Surely there are some successfully tackled and solved problems in the past. Can you do it again? Of course you can! Accept it as another challenge!
• Look at your family, friends and workmates. Aren't they ready to help you along? Of course they are. But you have to set the standard. If you are down, they're down. Keep your head high!

Get organised for your stay in hospital. Take a book or two, maybe a clipboard, paper, pen, a few addresses and phone numbers. You'll have time to read and write and you may want to make the odd phone call. Have a haircut too, because after the operation you could have difficulties sitting in a chair for some time.

The operation requires a clean bowel. I had to prepare with Fleet, the same way as for the colonoscopy. Undoubtedly your surgeon will tell you as to how he wants you to prepare.

I checked into the hospital the night before the surgery. Naturally there was some paperwork to be completed. A blood sample was cross checked with the donor blood waiting for me from the Bloodbank. Pulse-, temperature- and blood pressure readings were taken. I was also interviewed by the anaesthetist.

My Stomal Therapy Nurse came to see me, and together we marked the spot for the stoma. It didn't quite end up where I'd hoped it would, but there were good reasons to go along with her recommendation.

During all that I was as relaxed as I had been for some time. I had a good night's sleep, woke up well, had a shower and managed to read a bit, before I was picked up and wheeled into the operating theatre.

The operation, waking up and the HDU

To me the operation was really only the sting of a needle, then the start of a drip. I believe the surgery took just
over three hours.

From experience I knew that I was not a good person to wake up after an anaesthetic. Only to a minor degree was I aware of what happened around me. I was restless, making it hard for doctors and nurses to do their job. A few times I felt nausea coming on and told them so. Twice I complained about pain and the rate of the pain killer was increased each time. I co-operated however, when I was asked to hold still for a X-ray. They were very nice and helped me through the worst.

It was in the recovery room that I felt pain for the last time!

That is true and says it all about modern pain killers. If you feel pain, let them know. You don't have to put up with it.

When I finally settled down, I was brought to the 'High Dependency Unit' (HDU). Carefully I was lifted into a bed. It was heaven. Later my wife and son visited for a while. I realised they were there, and we managed to speak a few words, but I slept most of the time. You may question the value of a visit at this stage. But it's good to be in touch and comforting for the family to meet the nurses and to see the patient is calm and in good care.

In the HDU I was constantly monitored. There were probes to observe heartbeat and breathing. Blood pressure readings were taken every 30 minutes. I was given oxygen during the first 24 hours after the operation and received mouth rinses and ice chips to moisten the lips and mouth. One intravenous drip provided fluids and nutrients, another was there for pain control. I was fitted with a urinal catheter and a drain tube was inserted between my legs into my pelvic area. The position of the drain can vary according to the surgeon's preference. The stoma was protected by a transparent, drainable colostomy bag.

I was weak and my stomach muscles felt useless. For the first 30 hours or so, I had to ask the nurses for assistance when changing my sleeping position. I slept a lot, but also enjoyed music, TV, and had chats with the nurses while they cared for me. Like all the nurses I had met before and after the operation they were wonderfully dedicated people. I also got a daily visit from the surgeon.

Well, you may just start to feel better or even comfortable at this stage, but you are not here for a holiday. Soon they make you exercise your legs and do a bit of coughing. When coughing, sneezing, blowing your nose or laughing hurts, press a pillow against your tummy.

I was stronger on the second day. In the afternoon I was helped out of bed for the first time after the operation. My legs were terribly shaky and I was happy to make it to the next chair and sit down. The drain tube in my backside made sitting very uncomfortable. I soon returned to bed again. The move was still an achievement and made me feel good. After another night I was transferred from the HDU to my room.

Recovery

During the operation the surgeon may take tissue samples from you, to be analysed at the pathology. There will be some days before the result is known. It is up to the surgeon alone to inform you about the result. There is no point in hassling the nurses or anybody else about it. Be patient!

You now have to continue what you've started in the HDU. Exercise your legs in bed, do the coughing. Get up and walk. On a bad day it may be hard work. Still, force yourself to do it. Your nurses will help you out of bed and back in again. They even push your drips around for a few minutes, if you can't manage it yourself. It will be easier every time. Make sure your recovery doesn't stall. Believe in the power of your mind. Give up and you lose the fight. Keep fighting and your body gets the message.

Your stay in hospital may be harder on some days. You had a major operation, you feel weak, you may not sleep too well and your defences are low. 'Post Operative Depression' may set in for a day or two. Look for distractions.

Soon you'll be able to move around without assistance. Walk around your room or even along the corridor. Look after your appearance without bothering your nurses! It makes you feel independent and gives your nurses more time to look after someone who needs their help more than you do. Remember there is always someone worse off than you. And, you'll impress your visitors more by being up and looking good, rather than telling them how hard it is and how much you're hurting.

Then there will be the first signs of your digestion starting to work: a bit of wind, a bit of faeces in your pouch. Nurses can get incredibly excited about things like that: it means that something's doing fine. You'll soon be rewarded with a bit of liquid food like broth, jelly, tea etc. From there you graduate to a sloppy diet e.g: steamed fish, mashed potatoes and so on. What a great moment it was when I got my first bread roll after a full week without bread! Find a comfortable seat and have your meals out of bed. You are now really becoming independent again. If you're doing well, you'll soon be allowed to have a glass of wine with your meal. Be warned however! The kitchen staff will probably give you a daily menu. Be careful what you choose. Some food can upset your digestive system at this stage. The STN or other nurses can advise you when choosing.

Your drips will gradually be removed. First they probably reduce your pain killer step by step. Again, let them know the moment you feel pain as a result of the reduction. As you start to drink and eat, the drip administering the fluids and nutrients will be removed and you will be left with the urinal catheter and the drain tube only. They'll both be taken away within the next few days and you'll be able to move freely again. You'll soon be ready to go home.

Your stoma, the bags...

In the HDU you'll probably be looking at your stoma for the first time. The stoma will be dark pink and will be kept moist by a wash with water about three times a day. Everyone's going to tell you how beautiful it looks. -Well, just trust them.- It'll be swollen for some time. Eventually it will change to a lighter pink and may reduce
in size.

Your Stomal Therapy Nurse will endeavour to visit you daily. She'll talk to you about concerns you may have. You'll learn about various appliances and how to care for your stoma. Your stoma bleeds easily at this stage. Don't worry, it also heals quickly. Your STN's advice will help you to choose the most suitable pouch to start off with. She'll order some samples from one of the suppliers and show you how to fit them. Once you are ready, she'll sign you up with one of the support groups where you'll be ordering your supply of bags etc.

Naturally, you won't have to stay with the one product. There may be reasons to try other brands of pouches. There are different brands available and they can supply you with different products of the same brand. They're all excellent products and they all have their own features to cater for different needs and preferences. Your STN will be glad to assist and advise you further on your choice. She'll also be there to look after you when problems arise. Excessive wind or odour, loose or hard stool, leakage etc. can lead to difficulties or embarrassing moments. Skin problems may require treatment or even a change of product. If you encounter problems, the chances are that your STN knows a remedy. Ask her!

...and embarrassing moments

Your stoma replaces your back passage minus the sphincter muscle. It still has the same functions however. One of which is passing wind. There is usually a soft sound, which is absorbed by the permanent noises of civilisation. Smell is not a problem. However, it is not always quiet and there is not much you can do about it. Don't worry, it won't be long before you can laugh about these embarrassments.

In time you'll also learn to read the signs of wind coming up. A bit of belly rumbling or a soft feeling of pressure may alert you and give you a few seconds of warning and the chance to 'step away from the crowds'. It may help to put your hand over the stoma to muffle the sound. Or apply a bit of pressure and let the air off on your own terms. No guarantee that it will be silent though! The first few weeks are the worst. Your digestion will eventually settle down. We all know about the consequences that eating baked beans or onions can have. There are some foods which enhance the chances of wind, some reduce it. Ask your STN about dietary does and don'ts.

If you encounter odour from the bag, chances are that the filter got soiled from the inside. It won't take much to prevent this from happening. Another bit of advice: work swiftly and do concentrate when fitting your bag! You may just prevent a disaster.

At home

When you're at home again, don't forget to continue to exercise. Walk in the garden or around the house. You'll still be getting tired easily. Sleep a bit during the day. Sleeping is an important part of your recovery. Together with my wife, I started to take 20 minute walks within the neighbourhood. We enjoyed them and soon we extended them to 45, 60 and even to 90 minutes. Stairs and going uphill were no problem, downhill I had to slow down. We always had fun. Sometimes we got wet in the rain. And yes, sometimes it was hot and we stopped at the milkbar to treat ourselves to an ice cream.

During that time, I tried more and more different foods. I was soon back on my usual diet, minus things which could cause excessive wind, loose stool, etc. Make sure you get enough vitamins, protein and fluids. Yoghurt helps to build up 'good bacteria' in your stomach. Eat slowly and chew well, like your mother told you to! More than before it is important to be nice to your stomach and its lining. A colostomate watching his diet soon gets away with only two or even a single bag change per day. Irrigation becomes an option. Consult your STN. I may also mention here that I never had to take any medication as a result of my colostomy.

It's good to keep hands and mind busy at home. What about those letters you've never written, those books you always wanted to read? Or is there something to study and learn? Its the small achievements which make you happy. Create a good reason for a little celebration by the end of each day. You may be tempted to work around the house. Don't forget: there is a limit. Have rests. Do not lift for a few weeks! Follow your doctor's orders!

Even when fully recovered, it's best to wear an abdominal binder when doing hard work. Otherwise you may end up with a hernia around the stoma. Remember it is a lot easier to prevent a hernia, than to live with one or have one fixed. Custom made abdominal binders are available from a prostethic specialist. Ask your STN! You can also buy something similar at pharmacies and in the sports and/or hardware section of your local department store. Make sure your binder covers the stoma and fits firmly. You may want to carry an extra one in your car, in case you have to change a tyre one day.

There shouldn't be a reason to give up your sport either. Your doctor will give you the 'go ahead' when he thinks you are ready to take it up again. Consider wearing a binder if you play a contact sport. There are also specially designed 'stoma guards' available.

Getting dressed

Well before going home from hospital you'll probably find that you are uncomfortable with tight clothing. I exchanged my jeans and jocks against tracksuit pants and boxer shorts. Today's fashion is not at all restrictive. Almost anything is acceptable. People are tolerant. Baggy pants and large tops are in and are the ostomates' good friend.

If you are concerned that your somewhat bulky two piece appliance could show, use dark colored tops, as light colors tend to show shadows and contours. Wear a singlet under your white shirt. Use a T-shirt at the beach and in the water. With today's skin cancer awareness, you won't be alone. And make sure your stoma never ever gets sunburnt!

You won't have to dress differently forever. In time you'll be able to dress in your own style again.

Feelings...

Once the effects of your pain control wear off, you'll probably become more aware that there was a fair bit of resection done in your lower body. The nerves in that area are still sensitive and can cause a multitude of feelings and sensations. They may react to strain, knocks, noise or even things you see. You may also feel your intestines moving around in the empty space as you change position. The feelings may be there for a few weeks and you may not particularly like them. It is from the same nerves that you get the stop signal if you try to lift something too heavy too soon. Lifting four kilos was too much for me for some time!

...and your Backside

With a permanent ostomy, you may end up with a perineal suture line. Like the suture line on your tummy, it will be checked frequently. I had staples on the front, but stitches at the back. The staples were removed after eight days, the stitches a few days after I got home.

While I was in hospital, it soon became obvious that sitting on a chair was a problem. I first blamed the drain tube between my legs. There was some improvement once that was gone. But sitting was still most comfortable on a soft seat and for not too long. I tried various pillows. Some helped a great deal in the morning, but in the afternoon I had to look for something else. The condition of my backside seemed to be forever changing.

I never had a problem riding in a car as a passenger as long as I was able to stretch my legs. At home I could use my favourite lounge chair. At the table, I had to experiment with various chairs and cushions. Eventually I was fine for the duration of a meal. Two cushions, one on either side, work well. Different shapes of cushions or foam are available. Look around. Even before the operation, I got myself some precut foam and cut out an indentation. Observe what is happening and be resourceful. The good news is that you don't need to sit all the time. Get up and move. Laying down and rest, does wonders for your backside too.

My surgeon allowed me to drive a bit after five weeks. Even driving short distances hurt. I had to look for help and found a firm, D-shaped neckroll at the pharmacy. It had to support my upper legs to take some pressure off my bum. It made reasonably comfortable driving possible. I still minimized the driving for some time though. There was constant improvement. By the time I went back to work I was again able to sit on any chair. Be patient!

Your family...how can they help?

Naturally your immediate family will have to be informed about the exact details of your operation. From there on it is really up to you to decide who else you want to inform. While there is nothing embarrassing about an ostomy, no one else really needs to know about yours. I never spoke to anyone about my colostomy, except if I was asked directly. Usually that was by someone who knew a bit more about it. Once you are up and about again, no one will recognise you as an ostomate. However, you may feel more comfortable to let some of your friends and workmates know.

My wife visited me daily at the hospital and learned with me, when the STN was there. My son was also interested and we informed him well. The family won't need to help you with stoma and pouch, but it is good for them to be familiar with their care. They'll also be more understanding when something embarrassing happens.

Once you're home, it is important for them to know that you won't be allowed to lift, that it may be uncomfortable for you to sit down and get up too often and that you need frequent rests. You won't be able to bend down and tie your shoe laces, and it may hurt if you have to stretch to reach for something. There will be a few weeks before things get back to normal. Until then, the family may have to put up with your occasional call for assistance.

Again, make it easy for them. Show patience and gratitude. Don't be cranky, even if you have a bad day. Remember, your ostomy affects not only yourself, but the rest of the family as well! There are opportunities for you to help them too. What about doing the dishes, setting the table, helping with light housework or doing some light shopping at the milk bar? Use the computer while the kids are at school. Leave it to them when they get home or after they've mowed the lawn or washed the car.

Regaining your confidence

It is only natural that your confidence at this stage is somewhat dented. You are still moving slower than you used to. You are not yet wearing your usual clothes and you are afraid that something embarassing might happen while socializing or when walking in public places. And isn't everybody looking at 'that' spot on your tummy? - Now think back. Do you ever remember being able to pick out an ostomate from the crowd? There are quite a few of us around and chances are that you have been in regular contact with an ostomate without knowing about their condition.

There are some things you can do to again move amongst people with your usual confidence.

• Do all you can to achieve regularity. Avoid foods which cause wind or loose stool. Regular meals make your bowl movements quite predictable, minimize embarrassments and the chances that you have to change your bag in incovenient places and at inconvenient times.
• Start meeting people again. Seek out people you know well and are understanding. Meet them in familiar places. Invite them to your home, then go to theirs when feeling up to it.
• Once you think you are reasonably regular, take your family to a simple restaurant for a simple meal. Relax and enjoy the meal and the company.
• Always keep a 'travel pack' or two within reach.

Going back to work

Before the operation, my surgeon advised me to stay away from work for two months. If your circumstances allow it, use all that time to recover and work part-time if you get tired once you're back. It's not worth pushing it. If your normal work involves heavy lifting, talk to your boss about doing lighter work for a while.

Naturally you have to make up a 'travel pack' for changing your pouch away from home and at work. Prepare the following items:

• one ostomy bag (custom cut and ready to use)
• a plastic bag (or nappy disposal bag)
• two to three facial tissues.

• paste, mercurochrome, deodorants and anything else you may need.

Conclusion

At the time you read this, the worst may still be ahead of you. Get organised before you go to hospital. Try to relax, you are in good hands. Deal with the problems one by one as they arise. You can pull through this, as many did before you. Life will still be great!

While doctors and nurses do all they can to make you comfortable and keep you free of complications, it is you who has to work for your recovery. The harder you work on it, the more successful, easy and speedy your recovery will be.

Then let's face it: your stoma could well be with you forever. There's no use hating it! Accept it and get on with all the other important things in life.

Good luck and welcome into the fine world of the Ostomates!

Credits

To my STN Jenny for encouraging me to write all this.

Thanks to both my STNs, Jenny and Kerry and to Glenda (Ed.D.) for 'correcting and suggesting'.

Thanks go to my son who spent some of his valuable time correcting and improving this document.

Last but not least special thanks to my lovely wife for doing the housework all alone, while I enjoyed
myself working on this.

Your diet...some tips!

While an ostomy does not prevent you from eating a normal diet, some extra thoughts should be given to the foods you eat and their respective consequences. Some lead to difficulties and/or embarrasing moments and subsequently to insecurity and loss of confidence.

Foods which make colostomy loose: Cherries, apricots, oranges, rhubarb, grapes, green peas, cabbage, tomato soup, tomatoes with skins, stews, cream, curry, beetroot, seasoning, chocolate, cheese, some cereals, beer, liquids in excess, spicey dishes.

Foods which can cause constipation: Chocolate, cheese, celery, lettuce.

If constipated, these may help: All-Bran, more fluids, beer, soups, prunes, rhubarb, fruits with skins on, cabbage, peas. Or: 1 tablespoon of treacle in 1 cup water or warm milk.

Foods which may produce wind: Chocolate, onions, green peas (better tolerated if mashed), cauliflower, cabbage (except 'Chinese' cabbage), brussels sprouts, baked beans.

Foods which reduce flatus: Grated ginger and ginger tea, natural yoghurt, junket tablets, arrowroot powder (1 teaspoon per 2 persons added to your cooking).

Foods which can cause excess odour: Onions, eggs, ham, fish, spiced foods, chocolate.

Foods which can reduce odour: Raw parsley, yoghurt, acidophilus (available at Health Food Stores, also prominent in some yoghurts), stewed or grated peeled apple. Mintec capsules, 1-2 per day will decrease odour and flatus not as explosive (from pharmacies).

Fluids: Maintain good fluid intake - at least 6 glasses of water a day.

And more: Antibiotics can attack the lining of your stomach. So it is important to inform your doctor or your dentist about your ostomy when antibiotics are prescribed. Ask for another product if you experience difficulties.

Important: This information is meant as a guide only. Foods react with us all in different ways. What is good for some may not necessarily be good for you. For example: chocolate and cheese are mentioned in more than one group as they can have different effects from person to person.

'Prevention is better than healing'. - The advice is to stay away from foods which can cause trouble, rather than consume it and then try to fix the damage with something that should have the opposite effect, as it may not work.

Introduce new foods in moderation and at home. Observe the consequences and adjust from there.