Home Page


Message Board Support Rooms


Our Stories Your Stories


Gary's Story Kathy's Story


Elaine LeeAnn Lozzy Sarah


Cammy
(by Pauline)
Doug Hannah (by Julie) Lin Minna Simon Therry



You are visitor number

since May 2004

Cameron's bowel problems started when he was around 18 months old.

He had just had his M.M.R (MEASLES, MUMPS & RUBELLA) vaccine, and we went on holiday just up the coast a bit still in Scotland. Whilst we were on holiday Cammy developed diarrhea. We had a tough few days with no stop runs with a mega sore bottom. We were not sure if it was a change of water or if it was a reaction to the vaccine. We came home from holiday and Cammy still had the runs, so I took him to see our G.P who thought that 3 weeks was long enough and had us referred to the hospital. We attended a clinic there by this time it had been going on about six weeks; the paediatrician took some bloods and asked us to come back in two weeks.

In those two weeks the runs stopped - which was great but before we knew where we were he had not been to the toilet in a week, by the time we seen the ped again he was bunged up. He prescribed some lactulose and told to up his fibre and fluid intake, which was easy with Cammy as he was such a good eater.

The constipation went from bad to worse over the next months / years. We went regularly to out patient appointments and came home with different laxatives every time.
This ped left and we changed to the one we still have today. She was good but would never do any tests or such like to see why Cammy was having these problems. We were now at a stage where Cammy was so full of poo he could not eat, had severe tummy pain, he was not even able to sit sometimes he was so bunged up.

By this time Cammy had, had loads of different meds they thought they would try two together he was having lactulose 3 x 15mls a day and senna 5mls x2 a day. The lactulose did nothing but the senna gave him really bad tummy pains and no bowel movements, they then decided to add in a medicine that would draw moisture into the colon, so hopefully soften the hard poo and the senna which is a stimulant would help push it out, but this never worked and by this time Cammy was soiling a good few times a day.

We told the ped all this and it was decided that Cammy would try Picolax (sodium picosulphate-magnesium citrate) which a lot of hospitals have banned because some people's reactions are so bad to it, the stuff is so bad you mix it with cold water and when you mix the powder in it heats up! This never really worked for Cammy but gave him severe pain.

He was now round about 5 years of age (sorry times are a bit of a blur) in school when he was well enough in pull up pants which he hated, he soiled constantly which was over flow like a hard ball of poo was stuck there and the softer poo at the back of it was overflowing.

We were still attending the clinic and he was still bunged up, I was beginning to feel that they thought it was me, no one ever said anything but that's how I felt I was giving the meds as asked and getting very little response from them.

One day at a clinic app I asked the ped to please take him on the ward and see if there was any thing they could do as I was at a loss. The ped agreed with us he was still bunged up even with the large amounts of laxatives he was having, so he was admitted to the ward. There were a few non-invasive tests done bloods, scans, x-rays and eventually a barium meal. Boy was that fun!
He was discharged from the ward two weeks later on a regime of oral laxatives, Picolax or a suppository on the third day if he had no bowel movement.

This eventually got too hard for me as a parent to do because by now he was missing school in big chunks so I was being a Mum, Teacher and a Nurse. I found it very difficult to administer rectal meds then hug him and say "it's okay I'm here for you." He began to blame me for the tummy pain which was the hardest thing ever.

I was back in touch with the ward and told them I could no longer keep this up that someone else would have to do the suppositories. It was decided that Cammy would attend the ward twice a week for these, they eventually had to sedate him to do this as he was resisting.

At this time us as a family had no family life and decided that we should ask for a second opinion, so between our G.P and ped at our local hospital they found a gastroenterologist at the Sick Kids in Edinburgh. We had all our hopes pinned on this appointment, silly us we thought he would look at Cammy and say oh yes he has 'whatever' - but that wasn't to be. We had our first clinic appointment there on the 14th of December (strange how you remember some dates) 1998, we met our G.I team. Their treat of the day was to tell Cammy he was allowed to flush all the laxatives he had at home down the loo, I was so happy I thought "they know what it is they are doing something at last!" Then they handed me these six wee tablets(bisacodyl). I could hear this hysterical laughter and realised it was me! They asked "please let us try these two tablets a day for three days". And to take (and I'm sure it was) 90mls a day of liquid paraffin. This was their miracle cure!

We came home and started the three days of these tablets, and the liquid paraffin, boy does that stuff make some mess when it runs through the colon! It comes out the other end as a lovely orange oil - the only good thing to come out of all that was a lovely shine on my kitchen floor!
This never worked for Cammy and we were quite soon on the liquid paraffin and movicol daily.

In the January of 1999 he was admitted to the ward to see if they could clear him out they decided the best way to do this would be to pass an nasogastric tube as they required Cammy to drink large amounts of klean-prep.
Their plan was a litre or two should do it over two days, we were there 5 days and I think six litres of klean-prep later, he had had some movement so again they asked us to trust them and came home on only liquid paraffin as they thought the clear out should keep clear if they used the oil to help things along.

I'm not sure of the time scale but we were pretty soon back in being shown how to pass an N.G tube at home and how to work a kangaroo pump. So again we were home on the liquid paraffin and 1 litre of klean-prep daily, this went on a few weeks and I called to ask if I could take out the oil as it was only making a mess of everything, clothes, towels any thing that Cammy came into contact with even my cream suite had a nice orange patch on it! The doc agreed with me that it probably was not doing much so we could stop it.

This wasn't working well for Cammy and I told the docs he was absorbing the klean-prep, to which they said no way you cant absorb it, but Cammy was. They had Cammy on the ward for some tests and the staff seen how much he wee'd after having the prep. At this time he had a colonoscopy, biopsies and x-rays. The only thing that showed up on these was that Cammy had lymphoid hyperplasia (excessive lymph nodes) in his colon which should not have given him severe constipation.

After this they thought that because he was absorbing the prep that they would give him a gastrostomy (most have it for feeding). This was done at the sick kids, he was cleaned out for the op. But four days after the surgery he was very poorly with tummy pains, etc. and they discovered he was starting to get constipated again, so back on to the klean-prep and we plodded on for a time. The amount of prep should have been getting cut back but it was going up and up.

By this time there was a relatively new procedure to our G.I team, called an A.C.E (Antegrade Colonic Enema) - it has many names, e.g. Malone Procedure, cecostomy. They decided that this would be the next available step for Cammy.

We had to either agree or stay the way we were with the gastrostomy, which was not getting us any where, so the surgery was done, they used Cammy's appendix to form a wee funnel from his cecum out onto his tummy in a tiny wee stoma. At first this had a Foley catheter in it so as the funnel would stay open, this caused Cammy a lot of problems as he had cellulitis around it and once they took the Foley out after around 12 weeks this failed and the stoma kept closing over. We were meant to be able to pass a catheter every day so we could flush out Cammy's colon. He would sit on the loo and I'd flush trough a litre of klean-prep.

They ended up changing this to a button cecostomy by putting a gastrostomy button into the stoma. Yet again instead of being able to reduce the amount of prep we were using it was getting more and more till we were on three litres a day. Our G.I team contacted a specialist at Great Ormond Street Children's Hospital in London, who wanted to see Cammy at a clinic appointment down there, but in the meantime he was to have transit studies done where Cammy swallowed three pellets containing different shapes at different times so they could x-ray and see where the hold up was. Also he wanted Cammy on a restricted diet, he was to be wheat free, dairy free and egg free for the twelve weeks before the appointment. Cammy lived on baked potatoes, prawns and veggies.

We travelled to London, where the wonderful professor had forgotten he had arranged to see us. Eventually they found him and he came in - we had a consultation in a room with another family having a consult with another doctor at the other side of a curtain, not ideal I have to say.

The outcome of this was that he would like to admit Cammy and do some manometry testing, colonoscopy, bloods and another transit study. The good thing for Cammy was he had the cecostomy so they could do total colonic manometry instead of just anorectal.

This was all In December of 1999. From then until late April I called them weekly awaiting an admission date. Eventually we got an appointment, Cammy was to be admitted in the May for a week of tests. I stayed at home with the other two kids and my hubby travelled to London with Cammy. The outcome of this took about four or five weeks to filter through to us. The best way forward for Cammy was surgery - a colostomy as his transit time was so slow. He had megacolon, mega rectum and his sphincter muscle did not work as it should.

The day I got a letter in the post telling me about this I got a call from the G.I team saying exactly as the letter had that this was now the way they were going to go. We had an appointment with the surgeon, same one who had done Cammy's other op's. He said he was not keen to operate on what looked like a perfectly healthy bowel, but that as the professor in London had suggested it he would do it.

I left that clinic worrying that we had made the right decision, but on the other hand knowing for Cammy's sake we couldn't continue the way we were. The waiting on a surgery date began, I called the admissions to see where Cammy was on the list only to be told our surgeon had removed him from the list!
I called him straight away asking why had he taken him off, why had he not seen fit to contact us to let us know? Even the G.I team were shocked by this they thought every thing had been agreed that the surgery would go ahead. The surgeon asked to see biopsies again and all the test results so he could go through them again. We then met him again in the clinic where he told us he really was not happy operating on what looked a healthy colon. We had to make him understand the big picture...yes it was healthy, but it did not function as it should. Cammy's problems were affecting us as a family and his life was on hold.

He eventually said he would do the surgery but did not want us coming back asking why he did it, when things did not work out. As far as he was concerned it would never work so the decision was ours. We made our decision and in September 2001 Cammy had his first stoma, a loop colostomy,which started working the day after his op.

Cammy helped look after his stoma pretty much straight away, he was in there with cotton buds cleaning it up whilst still high on morphine lol. This stoma prolapsed in the October and we went back in and had a revision from a loop to an end colostomy with a mucus fistula.

We have never looked back there were a few teething problems but nothing major. Cammy had a life. He was back at school within four weeks and looking after his stoma with some help.

Pauline



Would you like to publish your story on the site?


Contact me by clicking here.