This is a brief update of Lucy's condition with her bowels so far which I wrote for her first visit to the gastroenterologist.
Lucy has a history of gastro problems all her life. She has always had incontinence and has poor control of her bowels. She suffered constipation a lot and the incontinence nurses suggested dis-impaction which we tried many times over a few years. Every school holiday we would spend with her taking Movicol until she was completely runny. The constipation would return. We stopped going to the nurses when she was 13 yrs old.
She also has an overflow when she is constipated which she has no control over.
More recently she has suffered more and more diarrhoea which was not like the overflow.
The situation now is that she is constipated or has diarrhoea, it's very rare that her faeces looks normal. Even the more solid faeces is slimy.
We saw a gastro Dr at the Children's hospital when her GP referred her after a particularly bad period of diarrhoea which had shown blood in her feaces. The Dr said she had found calprotectin in her sample but it wasn't very high. A second sample showed the calprotectin was even lower. The advice was to give her loperamide to make her faeces more solid and Movicol to move it through her body. It worked for about a couple of months and then she had another really bad period of diarrhoea. I gave her more Loperamide which resulted in constipation. She refused the Movicol as she didn't want to the diarrhoea back.
We had a telephone consultation with a general Dr at this hospital about her problems and they said to use more Loperamide when the diarrhoea started so we could stop it sooner.
Lucy became reliant on the Loperamide to stop the diarrhoea but the constipation became more of a problem. So we stopped everything. The GP suggested peppermint oil which helped a little.
We took her to A&E after a 7 day period of diarrhoea and she was feeling really unwell on 19th July. The Dr said he would write to our GP and request they make an appointment to see a gastrointestinal doctor. We had to visit the GP and make the request ourselves and have been waiting since then.
Since July Lucy has had four week long boughts of diarrhoea and has suffered constipation inbetween. We have stopped all medication as nothing was really helping.
Then on 19th August Lucy was admitted to hospital after retaining urine (over a litre) and couldn't go to the toilet. They said she was really constipated and gave her two suppositories which eased the consitpation. Lucy was catheterised for a couple of days. Then she was sent home. 10 days later she retained again and the catheter was replaced. She is still catheterised.
On speaking to the Dr during Lucy's hospital stay we were told that the retaining could be down to her Elhers Danlos Syndrome, and this could also be an issue with her bowels. The nurse at her last urology appointment told me that her urological problems would not get better unless her bowels problem were sorted and offered to write to her GP.
Lucy is underweight and although she has never really been very large, she has also never been this skinny. She has definitely lost a lot of weight in the last two years.
Diet: She likes nothing better than meat and vegetables. She also likes some processed food like chicken nuggets and burgers and chips. She does not like pasta or rice, although recently she has tried lasagne. She eats little but snacks between meals occasionally. Her snacks are generally biscuits, crisps or cheese puffs, but she does not eat these in excess. She only drinks soft drinks, not fizzy. She dislikes dairy products but will eat cheese occasionally.
Lucy is currently having a period of diarrhoea which started on Sunday night. Before the diarrhoea she said her faeces was not hard and she wasn't constipated. I ask her every day if she has been to the toilet and what it was like.
First Visit, how it went
Things may be looking up for Lucy, I am hoping that this is the help she needs to get better.