…I lived with stomach bag for six month
My experience with ill health began a week after I learnt about my fathers death. That was in February 2014.
Soon after my father’s death, I started having severe abdominal pains which was so bad. I was rushed to Lagos State University Teaching Hospital (LUTH) where I was operated upon and the operation landed me in a COMA state for 6 weeks. Then at LUTH I was bed ridden after the COMA and eventually I was discharged after 5 months at LUTH.
Then in September 2014, I was flown to India where I was told that I will have a colostomy surgery.
The realisation of having an emergency colostomy surgery was one of the saddest days of my life. Well, that’s what I thought then.
Indeed if you hear that you are going to get a stoma and will have to use your stomach to pass stool, it can be a real shock.
That’s how I felt in September 2014 when the surgeons in Apollo Hospital India told me I would be operated upon and might be given a stoma because of the extent of damage done to my intestines at the Lagos University Teaching Hospital( luth) Lagos during the month of March 2014.
I had gone to LUTH hospital in February ending due to intestinal obstruction and operated upon in March in LUTH and ended up in the Intensive care unit and also in all spent 5 whole months on admission in LUTH.
The preparation for the Stoma Surgery in India.
Normally there are investigations done at the clinics first: blood tests, heart checks (ECG), a general physical examination and sometimes an x-ray of the lungs. I also had an interview with the anaesthetist, the surgeon and the stoma nurse. During this consultation the anaesthetist informed me about the anaesthesia, , gave me an estimate risks of the operation .
The doctors and nurses in Apollo Hospital India welcomed me in September 2014 to their hospital and did series of test on me and also counselled me in details of what kind of surgery I was going to undergo.
The nurses in particular spoke compassionately with me and assured me I would be fine, however I was feeling very self-conscious and wondering if people were looking down at me because I arrived INDIA with a very protruded large stomach as if I were pregnant with triplets. My stomach was swollen so badly due to complications from the LUTH Surgery.
In order to be sure that my stoma bag will be in a good place after the operation and sits comfortably when I stand, sit or move, the surgeon and stoma nurse did carefully try to find the best place to site the stoma. The place can depend on the shape and folds of your stomach. It is very important that the stoma is formed in the “correct” place otherwise you can have problems with leaks. They take into account your bone structure such as the hips and ileum and also the navel, scars and the contours of your body. The stoma is often placed at the top of the “fatty roll” level with the navel.
I was told then when you go under the knife , you must be ‘empty’. This means that your stomach must be empty when you are operated on. So I have given a laxative to completely empy my stomach the night before the surgery.
In the operation room I was moved from my own bed to the operating table. Then I was connected to the monitoring equipment. During a anaesthetic the anaesthetist monitors continuously the most vital body functions, such as breathing, blood pressure and the heart beat. That is why stickers were stuck to my breast which monitors my heart rhythm during and after the operation. I also get a peg on my finger which monitors the oxygen level in my blood and a blood pressure monitor on my arm.
A drip is inserted in the back of my hand. This is a thin tube that is placed in a blood vessel and whereby other medication and fluids can be administered during and after the operation.
With an operation on the gastro-intestinal tract an epidural in the back is often used to regulate the pain during and after the operation.. With an epidural (Thoracic Epidural-Anaesthetic, TEA) a very small thin catheter (tube) is inserted just inside the spinal cord outer skin, between 2 vertebrae. Epidural means ‘the space just outside the hard spinal cord’. The injection therefore does not go into the spinal cord. The medication goes immediately to a good place meaning less pain killing medication is needed. By means of a pump pain relief is administered via the tubing. An epidural catheter also often has a beneficial effect on the oxygen levels if the heart and the coronary arteries which regulate the blood delivery of the heart.
To insert this, I had to sit on the edge of the operation table in a position known as the ‘cat position’; chin on your breast, nose towards your knees, shoulders sagged/relaxed and my feet were supported on a bench. The place of the epidural is first numbed with a small injection. With the epidural, my legs felt l different; warm tingling and heavy and became numb.
My whole body was numbed and I became unconscious. But before I went to sleep, I was given a mask with 100% oxygen on my mouth and nose. I learnt that gave my blood cells and body an extra “boost” of pure oxygen. This helps my sure recovery. Then the anaesthetist injects the anaesthetic via the drip. I fall into a deep sleep within a half minute. It can feel as if a warm glow spreads over my body.
On waking up
After the operation which lasted 4 hours I was brought to the recovery room. This is a separate room near the operating room. Here a good look is taken at the pain relief and my blood pressure, breathing and all sorts of other functions are monitored closely.
I spent the night in the recovery room and when my condition stabilised, I was brought first to intensive care section where I spent 2 days before I was moved to my room in the ward.
When I OPENED MY EYES Clearly and saw all the tubes, one in my mouth/throat, two tubes on each side of my body and then the hole/stoma on my belly with stool coming out, I felt so depressed and wept my soul out.
I was glad to be alive , but the thought of having to watch myself pass stool from my stomach was quiet a shock for me and I felt so depressed and all alone inspite of the fact that my bosom friend with me Lady IFREKE who came with me to INDIA, really consoled me, I still felt my life had no meaning anymore, my worry was how will I survived using my belly to pass stool for many months? HOW?
Also I was shocked at the size of the stoma hole in my belly, it looked so big. The nurse with me was friendly and asked me to refer to the stoma as my rose bag, I ask her why rose, and she said all women like rose flowers.
The drip in my hand , I learnt was very important. The first few days after the operation , I got a fluid/saline solution (saline 0.9%) via the drip in the hand. The saline content in this solution is the same as that in our body cells enabling the water content in our body to be replaced as soon as possible.
I felt so much pains in my stomach and all over my body and the nurse told me to endure that , the pain is mostly worse immediately after the operation and gradually reduces. The aim of the doctors and nurses is that 72 hours after the operation you have a pain number of less than 4 measured with a special instrument. The difficulty with pain is that it is subjective; pain is very much a personal experience.
Apart from the drip and the pain pump when I woke up, there will be a tube in my nose for oxygen.
I also wake up with a bladder catheter. This is a flexible tube which is pushed along the natural ureters into the bladder. The urine can drain away by itself and is caught in a bag which hangs on the bed. As a result of the surgery so I could not pee by myself.
I was not worth much the first days after the operation. I was so depressed, but the nurses and doctors did their very best to cheer me up. Also their medical care was excellent, they attended to me with much love and dedication .
My temperature, heart rate , blood pressure and oxygen level was checked every day. I was so lean and very week and very emaciated. I was 100 percent dependent on the nurses for everything, they cleaned me up each day, brushed my teeth, wash my body, change my clothes and stoma bag.
The nurses were so caring and if I needed anything, all I needed was to press a bell to call a nurse and immediately a nurse will come to assist me.
Every day step by step things get better for me and I could do a little more. I Started to brush my mouth by myself after 2 weeks, but that only became possible after the nurses had helped me out of bed many times so that I could sit on a chair. It felt like a journey around the world for the first time. Indeed I cannot forget the grim fact that the operation was another blow to my body indeed my body will need time to recover again. I felt so overwhelmed with the whole surgery saga and I prayed for GOD to sustain me and keep my spirits high. I looked at my stomach and the stoma and remembered that it was the same stomach that LUTH Operated me in the month of March and that was what sent me to coma , and now again this same stomach of mine was opened again at the same position, and even more that it would have to opened again so that one day this stoma will be closed.
I slowly learnt to drink fluids and eat again. In the first days, only liquids, soup, porridge, e.t,c, and then light food like mashed potatoes, mashed rice , fruit, e,t,c, next , building up gradually until I was able to eat semi – solids before I left India to return to Nigeria.
There in India, dieticians came each morning to see me before breakfast, and they often discuss the impact of the menu on my newly formed stoma. The surgeon often came often to visit me and to tell me how the operation went and to see how things are going with me now.
In the first days after the operation , I was being taught how to care for my stoma. A ward nurse looks after the basic care, the stoma nurse deals more in depth.. In the beginning , I just watch and the stoma nurse explains everything. This is called bed-side teaching. There seems to be a lot happening all at once and I had the feeling that I will never remember all this processes of caring for my stoma to prevent infections.
Just before I was discharged in India, the stoma nurse came and emphasized that I watched carefully and learn everything well and learn it well and she also added that “ you may not get anybody to help you further back at home, so prepare your mind to be cleaning up yourself properly on your own”. I was told that in 3 months time, my intestines would have healed enough for me to return to India and undergo the final operation to push back inside my stoma and make me normal again to pass stools via the anus.
Indeed , after 6 weeks in the hospital I was well enough and discharged to return back to my country Nigeria. I was warned that in the first 6 weeks after the operation, I should not lift anything in order to prevent a stoma hernia. That my stomach muscles will grow back together after a month or more, so chores like fetching water, sweeping, e.t.c were unadvisable during the first weeks after the operation.
I was warned also that my appetite will change after the operation; more or less, and other changes. I was told. : “ Your body can for example crave specific foods like salt, fibre or proteins. Listen to your body, because protein (meat, fish and dairy products) are good for the recovery of your body. Watch and try gently to see which foods you can tolerate, and which not. For a handy food list with products which can cause an obstruction, air etc, click on the page FOOD on this website. What you can and cannot eat varies person to person and also on the opening of your stoma. The narrower, the harder it is to digest difficult products. Try everything quietly, not at the same time, and if something doesn’t appeal try it again later”
Upon leaving hospital, after being on admission for colostomy surgery for 6 weeks, it seemed that I was confident about managing my colostomy, taking care of my stoma and changing the colostomy bag.
On arriving home, the confidence seemed to dissipate slightly. No more nurses round the corner to cry on their shoulders. No more pep talks about how easy it will become to live with a colostomy.
Challenges – The First Few Weeks At Home
The emotional stress experienced was expected even though I have been well tutored about what to expect and this is a normal post surgery feeling. I was thinking about my stoma all the time. And worrying about how life will be like, with a colostomy.
It took me a few weeks to adapt to life, living with a stoma. With the benefit of hindsight, it really was a passing phase.
The first weeks found me learning and researching more about a living with a colostomy, and my stoma, whilst discovering better and more efficient ways to use my colostomy pouch and other ostomy supplies.
And in a matter of a month, I was in full control of my colostomy and was always able to tackle any unexpected situations., however I still felt depressed every now and then at seeing my stools coming out of my body and worst still as I had been warned it often came out un controllably, like a running tap that you cannot close up. Once I eat any food, 40 mins after the stools came running out, it was awful indeed. But I thank my husband, MY 3 CHILDREN and all my siblings , my colleagues and all my friends and church members and neighbors for all their emotional support
Ostomy, Major Issues Initially Encountered:
Initially, wearing colostomy bags, and managing the colostomy was a great challenge at home. It really took some getting used to, but eventually, we all got along fine, colostomy bags, stoma and I. The seemingly major issues initially encountered by being a colostomy patient at home includes:
Knowing when to change an ostomy bag.
Dealing with the odour left behind, every time a bag has to be changed. The ostomy deodorants never seemed to work well enough!
Worrying about how to handle colostomy bag ‘ballooning’
Knowing when a colostomy bag blow out is about to occur, and dealing with it before it gets out of hand.
Making sure that colostomy supplies NEVER run out.
Bleeding around the stoma.
The loudly audible sounds of expelling wind.
Disposal of used colostomy bags and worst the burning and peeling off of skin around the stomach area.
The experience made me appreciate the fact that stool is acidic in nature, it was so awful, the manner my skin around the stoma burned and hurt so much.
Never before has the feeling of self consciousness been so profound! My emotions were in a turmoil. This was going to be a long 3 months. If only time could fly. And worst that 3 months became 6 months.
How to Change Your Colostomy Pouch
Managing A Stoma At Home
The first week at home was scary. I was, ‘in and out’ of the bathroom, checking on the colostomy bag. And because the stool was still fairly fluid and scanty, using the drainable colostomy bags was easy. But as I begin to eat well, it became more cumbersome changing the pouches.
I barely ate any food, hoping that eating much less will ensure the stoma bag has as little stool as possible. But I had to eat because I was just out of hospital, and needed to build up my body mass, strength and stamina, and I needed to put on some weight. I has lost about 10 kilos during and after surgery and I looked so emanciated and skinny. I eventually stuck to a simple colostomy diet that ensured waste in form of excreta was expended with ease and with a reduced quantity.
My change of clothing style was another bothersome issue. I packed away my tight fitting clothes and opted for looser fitting apparel, especially those that are loose around the waist. Wearing gowns posed a problem initially, until I opted for low-rise gathered gowns , allowing my colostomy bag to hang out unhindered or squashed by a waistband.
Sleeping soundly at first, wasn’t easy. There was the horrible thought that lying on my stomach with burst the colostomy bag, spilling its contents all over the sheets. I had to learn to sleep on my side, and eventually inculcated that way of sleeping within a few days at home. Yet still, sadly I wake up each morning with all the bed sheet stained with feaces.
At the hospital, it was a different ‘kettle of fish’ in that the nurses were always around to help you out of nasty situations that may occur. When you are in bed with your husband, the last thing you wish to happen is a burst ostomy bag occurring in the middle of the night, but I had no choice because it happened most nights that the bed was soiled.
I did the stoma surgery in September 2014 and by December the same year I was determined to travel by plane from Lagos to Benin to see my mother who had not seen me all the while I was sick in LUTH and in coma and almost dead.
So stoma or no stoma on, I was determined to go to Benin and I dared it indeed and travelled. All the way from lagos to Benin, I took nothing, not even water in the plane but even at that I arrived Benin still soaked in my pants with my feaces, but my joy was that the stain did not show on my clothes, I thanked GOD in my heart. My mother was so delighted to see me and she thanked GOD I was alive and she assured me that soon I will no longer wear a stoma bag.
In the plane, in my hand luggages I had my colostomy supplies in my hand luggage, the deodorant, wipes, ten colostomy bags (I laugh when I look back now!), disposal bags, etc. all neatly packed in a designer colostomy supplies zippered bag. I had to pre-cut the stoma holes on the colostomy faceplate because scissors were not allowed in hand luggage.
Any ostomy patient will know what its like changing a colostomy pouch in any toilet. Now changing a pouch in an airplane’s toilet is something else entirely. The odour was consuming and the deodorants couldn’t ‘tackle’ the smell. Oh well, it was just too bad. I had to change three times before arriving my destination. One thing was for sure, I was getting more adapt at this and spent less time than I would have, sitting on the loo.
Settling Down To My Normal Lifestyle With A Stoma bag
After settling down and fully accepting having a colostomy, I must say that it beats having to use the toilet the normal way. There were a few times when the urge to go the normal way occurs, and at first it was alarming. After talking to my doctor, I was assured that it was normal. Because of the accumulation of mucus, the urge to expel something happens. At this time I was advised to try to expel it by sitting on the toilet and bearing down lightly. If it doesn’t pop out, then using a very mild suppository will aid its expulsion.
In no time managing my colostomy became second nature. I had come to terms with having a stoma, and my initial reaction and shock after my colostomy surgery had been replaced by happier thoughts of still being alive. . And still only a couple of people knew I was walking around with a colostomy stoma.
Because I watched what I ate, keeping to a simple colostomy diet, I hardly experienced colostomy blowouts. In the spate of 6 months, I only experienced blowouts about three times. Whenever I consumed fizzy drinks I expected some colostomy gas build up and stoma bag ballooning. I just sneak into the toilet and open up the drainable colostomy bag to release the gas. All done in two minutes.
However there was one sad fateful day I witnessed the length of my intestines from my inside stomach come out through my stoma hole , this is called stoma prolapse and the length was so long it reached my knees, I was so alarmed and only I and my little 8 year old son was at home.
I was so scared that I would die that day, but thanks be to GOD I survived it and I thank my little son because he showed much bravery that day.
How the intestines went back inside is that I santinised my 2 hands in saline water and use my own hands to push my intestines back into my stomach, it was really frightening. But I survived it and all went fine and later when I was able to reach the Indian doctors via phone, they advised me on some mild pain killers to take and asked me to rest adequately and reduce house chores to avoid another stoma prolapse.
Closure of stoma hole and return to Normal life
In the month of March this year I returned back to Apollo Hospital, India for the final corrective surgery which lasted 2 hours and eventually my stoma hole was closed up and my intestines reconstructed back normally again so that I could use my anus to pass stool normally.
Since after the final surgery in march, I have been fine living a normal life again and I am really thankful to the expert doctors and nurses in Apollo Hospital, India and also to everyone here in Nigeria who stood by me.