Daisy was prescribed many different medicines to help combat these problems, and we plodded along for a while like this. She would have up and down days, but by and large the medicines help to keep her discomfort at bay.

After a while, Daisy’s condition began to worsen, and she had to undergo several more tests including a small bowel manometry. This showed that Daisy’s digestive system was not working in the way that it should, causing her lots of pain and discomfort. Following this, she underwent a full thickness biopsy which finally confirmed Daisy’s condition as Chronic Intestinal Pseudo Obstruction (C.I.P’s) at the age of 5.

Despite the many medicines Daisy was taking to prevent such things, she would still projectile vomit on bad days, and would even pass out when the pain became severe.

In May 2009, it was suggested that Daisy had an Ileostomy at Royal London Hospital to help reduce some of her pain. She had the operation in June and soon after it became very clear to the Doctors that Daisy’s digestive system was a lot worse than they first thought, and unable to break down and digest her food properly. What she was eating, would pass through her almost the same as when she had eaten it, undigested.

Following the operation, and whilst staying in the hospital, Daisy had to have an NG feeding tube inserted through her nose, and down into her stomach, with a pre-digested milk fed down it to help build her strength back up. She was also referred to Great Ormond Street Hospital Chronic Pain Team with the hope that they could come up with the correct medicinal solution to help combat the pain better. Daisy has even more medicine nowadays, to help her cope with day to day life, including morphine for when the pain becomes extremely severe.
Daisy is currently on an experimental strict low fat, liquid only diet to see if this helps prevent the pain, and eliminate the undigested food problem.

Daisy is a very happy little 6 year old girl, who takes each day as it comes, and everything in her stride, but not a day goes by without her saying at some point “I feel sick and my tummy hurts.”

Currently Daisy is only well enough to attend school for 3 mornings a week, but she finds it extremely exhausting. Hopefully in the near future she will be well enough to attend full time.
At the end of January 2010, Daisy was re-admitted to the Royal London Hospital after days of struggling to even digest any of her liquid diet. She lost a lot of weight!!

After one week in hospital it was decided to fit Daisy with a JPEG feeding tube directly into her stomach, and a temporary long line for intravenous feeding (In case the JPEG did not work.)

Daisy has struggled to take the feed via the JPEG, so the long line had to be used to feed her intravenously. The plan now is to fit Daisy with a more permanent Hickman Line as soon as possible, in order for her to come home from hospital, and begin to try and lead a normal life again.

After a real rough time and several operations whilst in hospital, Daisy finally came home early august 2010.

She now has the permanent Hickman line fitted directly into her heart, and is fed her TPN at home every night for 14hrs.

She still has the jpeg which is used only for medicines and diraylite.

Daisy is completely unable to eat and digest any food orally. Currently all she is allowed is 5 small ice-pops and just 2 small spoonfuls of yoghurt per day. She cannot even drink anything.

Back home she is learning to reintegrate back into normal family and school life, which is far from easy. Most mornings she can only manage about 1hr at school before becoming very tired. But daisy is a fighter and is determined to battle through this in order to mix with her friends.

Other problems for daisy include many aches and pains and hypermobility in her joints, which means she has to rest often.

She is constantly on a very high dose of several painkillers, which seem to help her get through each day.

Everything now has to be structured around daisy's feeding times, which puts great strain on everyday life for the whole family. But we try very hard not to let this drag us down, and we continue to help daisy live a normal life as best as she possibly can.