Let’s Be OstoMATES – Graham’s Story

lets be ostomates - grahams story

This instalment of “Let’s Be OstoMATES”  is Graham, 45 years old and has had a stoma for 40 years. He has lived through the development of stoma care as we know it today. 

On 30 January 1972 I arrived into the world as a full term baby, but no-one could have expected what happened next. I weighed in at only 1 lb and on full examination the doctors noticed I was born with no opening of the back passage. I had a imperforate anus. Over 30 years later I had access to my hospital notes from the day I was born and the doctor wrote in them said “I have been presented with this freak looking baby.”  As you can imagine reading this I found it very upsetting, thankfully those words would not be said these days.

I was rushed off to another hospital without my mum even getting the chance to see me.  My parents were told the chances of me surviving the night was extremely low as I needed urgent surgery to form a colostomy. So at just over an hour old I had the colostomy and was in ICU for many months. As the months passed I slowly gained weight and eventually was allowed home. Back in those days there was no stoma bags for babies and I was told I had to have bandages wrapped around me many times and this was changed every few hours.

Over the coming months my parents noticed I started to bend forward whilst in my baby chair and asked the doctors why would a baby be doing that at such a young age. They came to the conclusion I was protecting my stoma, my parents questioned this and asked how would a baby know they have a stoma and why would they protect it. After further investigations it was revealed that I had scoliosis of the spine, my spine was bending forward and not growing straight. As I was so young nothing could be done at this stage of my life for this and it was something that would have to be fixed later.

At the age of 2 years it was then decided I would have further surgery to have a rectum made and the colostomy reversed. Not long after this my medical team decided it would be best if I started a special school because they expected I would have special needs as I started to grow. I don’t have any recollection of my early years at school and I was about 6 years when I started to realise I was different. First of all I noticed I couldn’t walk like some of my peers, then I noticed I was still in nappies.

The colostomy reversal and new rectum had not worked and I was incontinent, the muscles weren’t working it wasn’t getting the message from the brain that I needed to go to the toilet. At school and at home many hours was spent trying to toilet train me but nothing worked and I kept asking why I was different to my friends. Around the same time doctors told my parents I would never walk because I had problems with the tendons and muscles in my legs which meant that I would be in a wheelchair for the rest of my life.

My parents weren’t ready to give up on that and decided they would have a plan and do physio at home but not tell any of my medical team or physio’s at school. After 18 months my parents decided to take me into school and asked my team to come to the main entrance as they had something to show them. They saw me in my wheelchair, then suddenly I stood up and started to walk, everyone was shocked. I was unsteady but still I managed to prove everyone wrong.  Over the coming months I was getting stronger and stronger with my walking and using my wheelchair less. However the toilet issue was still bothering me and I kept asking more and more questions as to why I was still in nappies as I was starting to get embarrassed about it. After all my medical teams and teachers had a meeting about it, the best way forward was that it would be in my best interests that I had another colostomy formed and the plan was then to train my bladder.

At the age of 7 I went back into hospital and the colostomy was given to me for the 2nd time. After a 2 week recovery at home it was time to return to school and a member of staff was appointed to be my carer and look after the stoma care. I remember being told that my stoma had to be kept a secret from my peers and that I was taken to another part the school whenever the bag needed changing twice a day. This had a huge effect impact on me later in life.

Over the following few years I needed various surgeries, but the two main ones where on my spine because of scoliosis. At aged 10 it was decided now would be the best time to have surgery and straighten the spine. However this came in two stages over 2 weeks. Stage one was I had to be stretched, so I had to have thick metal pins through my legs and six bolts screwed into my skull. This was known as a halo traction, I had to lie flat on my back for 2 weeks with 30 lbs hanging from my skull and 30 lbs weight on my legs. This was the worst two weeks of my life, I was on a bed called a striker bed and had to be turned onto my stomach every 4 hours to prevent bed sores this was very challenging especially on the stoma.

After 2 weeks on this special bed surgery day arrived, I was in theatre for about 9 hours and 2 metal rods where attached to the spine then my whole spine was fused together which would restrict my movements. Once surgery was over I had to wear a thick leather brace with 2 metal bars at the back and one at the front and my neck was locked into place so there was no movement at all. Now this caused even bigger problems for the stoma, they had to come up with a design so the front panel was cut open just enough to gain access the the stoma. This caused many problems and leaks as the bag kept lifting with all the body heat inside the brace. Finally after 9 months the brace was removed and everything looked good. I was told due to the surgery early the chances of me growing taller was highly unlikely because this type of surgery is normally done in children in their mid teens.     However just 2 years later I had grown just enough to outgrow the rods, I was devastated and I had to go through all that surgery again. The second time was the worst as I knew what was coming, I had the surgery and thankfully everything worked out.

I remember quite clearly on Christmas Day 1988 my life was about to take another twist, I started to get stomach pains which would last only a few minutes then the stoma would suddenly work and then I started to pass mucus from behind. When I looked there was quite a bit of blood there. First I put it down to all the food and drink I had that day and thought everything will go back to normal the following day. The next day when having the bag changed there was blood in it, the stomach pains where still coming and going on a regular basis. As things started to get worse I became more aware of it, especially the mucus from behind. If I was out I was scared to sit down in case I had passed mucus and it got through my underwear then onto my trousers.  As the months went on nothing was improving so that July I was admitted to hospital for tests, although I was 17 at the time I was still on the children’s ward.  After having the camera into the rectum and down the stoma I was sent home and was told to return in 2 weeks for the results.

On my return I was told there was a lot of inflammation of the large bowel and rectum, still unsure what all this meant and was told they wanted to admit me again. So a week later I was back on the children’s ward, lots of tests done over a few days, then my consultant came to chat to me in my room. He said all the results where in and had some news for me, first of all I was told I had Ulcerated Colitis or Crohn’s disease, I thought okay at least it’s not the dreaded C (cancer) word that had been going around in my head. Then he said he had more news for me, my blood results also showed I had type 1 diabetes. WOW double blow in the space of 5 minutes, I disagreed with the consultant saying he must of got it wrong because I felt fine and had no symptoms. He told me the best way forward at this stage was to concentrate on the diabetes and leave the bleeding for a later date. I was then transferred to another ward which looked after the diabetes. I just couldn’t get my head around it, I was 17 I had just left school, I felt as if my life had ended before it had begun.

Over the next couple of years, the bleeding and mucus continued, it was starting to get me down. Then suddenly I had an interview for a job with my local council authority. I thought to myself, I probably won’t get it because of my health issues and all the hospital appointments I was having. Anyway I had the interview and was offered a temporary contract on the admin side.    Now I was in a dilemma, what do I say about my stoma? Should I tell my line manager or not, I kept thinking back to my school days, remember this is a secret no-one must know. So all I mentioned to my boss was I have a few hospital appointments and can show you proof with appointment cards, they were happy with this.

Gradually the bleeding and mucus was getting worse and it got to a stage where I was worried to go into work, after a few days off sick I returned to lots of questions was being asked to why I was off. I just told my colleagues I had a upset stomach for a couple of days but all was good now. Not long after that I had appointment to see my surgeon, and I explained things where getting worse and was finding working hard.  I was feeling exhausted all the time, so it was decided there and then the next stage would be more surgery to remove the rectum and part of the bowel that was inflamed. Finally there was light at the end of the tunnel. My next problem though, how do I explain this to the boss, I kept it to myself for a couple of days. Then one morning at work my boss called me into a private office and asked if I was okay because I had not been my usual happy go lucky self. I suddenly blurted it out, I am having surgery next month because of problems with my colostomy. All silence for what seem like hours, then suddenly my boss said, “Is that all? Is that what you been worrying about telling me for the past couple of days?”   Then I sort of got a little telling off for not telling her about my stoma sooner and that there was no reason to be ashamed of it.   Then I finally told her the full background as to why I needed this surgery. Baring in mind I had kept this quiet for 3 years if I had any problems with my bag such as leaking, I would make an excuse to go home for half an hour to get myself sorted out. Surgery was done in September 1993 and the removal of my rectum, now known as a barbie butt.

Over the years though I started getting more stomach pains and finding more blood in the stoma bag, I was handed over to a new consultant and even more tests where done, he came to the conclusion that I did have Crohn’s Disease. I was put on steroids and other medication, but it started to have little effect on me. I kept being admitted to hospital with the pain and spending more time on the sick from work. I was also losing weight, at one point I was down to 6 st 5 lbs.

Then one day at home I was walking up the stairs and suddenly I heard snap in my right leg. There was no pain or anything, then before my very eyes I started to see the leg swell up at an alarming rate. My dad rushed me to A+E, Doctors told me it’s most likely I snapped a tendon, go home and rest the leg up for a few days and if it got any worse go back. Woke up the following morning and the left leg was swollen like the right one. Then I knew something was not right, so I saw my GP she took one look and said, you need to go to hospital now, this was scary especially as she didn’t say why.

Once on the ward then I noticed my stomach was slightly swollen and I could see it getting bigger and bigger and moving up my body. Lots of urgent tests where being done, my stoma was swollen and I was having daily leaks, it was awful. By day three 60% of my body was swollen and my body weight went from 39 kilos to over 100 kilos in the space of 4 days. Finally they found out what was wrong, I was diagnosed with a condition called Nephrotic syndrome. This is where your protein from your kidneys leak into your tissue, this was serious. I was in hospital for 7 weeks then spent the next 12 months going to outpatients every week, so I was put on long term sick leave. Over the coming months the swelling was starting to reduce as I was on a high dose of steroids. But once we dropped the steroids if I went below a certain dose the swelling would return, it was after 12 months that the decision was made to keep me on a maintenance dosage of steroids. Finally most of the swelling had gone down and I was only a few weeks from returning to work.

Then disaster happened again, I became very poorly with Crohn’s and was taken into hospital, I was devastated yet again. I was on high doses of IV steroids but that didn’t help, I was then sent for a colonoscopy and that showed the large bowel very inflamed and in a bad way. After long discussions with my stoma nurse I was being told the only way to get rid of all this pain was for more surgery, remove the colostomy and have an ileostomy. But the choice was mine, I found this so difficult to decide and a joint decision was made with my stoma nurse to have the surgery.

Surgery was done the following month, by this time I had been on the sick from work for nearly 15 months. My boss came to visit me many times during my recovery and she said had I thought about going for ill health retirement. That was the last thing on my mind but we talked about the pro’s and cons of it. I had meetings with my medical teams, and because of my complicated medical history I decided to apply for ill health retirement at the age of 31. I must say though my employer gave me all the support I needed. They made sure it was accepted and arranged some counselling to help me adjust to why I had to give up a job that i loved.

So going from colostomy to ileostomy, not only did it get rid of all the pain it also gave me a little independence. With the colostomy when it came to changing the bag and cleaning the area then putting fresh bag on I needed help. This was because of restricted movement in my spine and neck from the surgery as a child. With the ileostomy I managed to empty the bag, this is normally done 6-7 times a day and 1-2 times during the night,  but I still needed help when it comes to changing the bag. This is where I fear people will judge me. I have had bad experiences in the past whilst in hospital with nurses saying I am just being lazy. Comments like that have knocked my confidence so badly that every time I need to go into hospital I think how will the nurses react this time. I have been told many times, nurses are there to help and shouldn’t make me feel bad just because I need help changing the bag.

Because of all the bowel surgery over the years my bladder has been affected, I have what is known as an over active bladder and I keep getting the feeling I need to pass urine. I was going through a stage where I was getting water infections every month, some have been so bad I had to be in hospital. These days I have to do intermittent self catheterisation every 4-5 hours. It’s something I have hated since day 1 which was about 7 years ago, the only way I cope with it is to blank it out.

So my journey in life has been different in many ways,  for me having a stoma is normal, I have never really known anything else. Despite all the things I have been through I still enjoy life and get on with it. Having a stoma doesn’t stop you doing anything if you want it to. My dream was to fly a light aircraft, that dream came true 3 years ago when I booked a trial flying lesson. It was an experience I will never forget, especially the words that the pilot said to me – “You have full control of the plane”.

graham

Graham thank you so much for your story, I felt so many different emotions whilst reading it, although it left me with a big smile on my face as I too know how amazing the words “You have full control of the plane” are! For anyone wanting to try flying you really should, I have done two light aircraft flights and a glider – there is truly nothing like it!