untitled

What is mercaptopurine?

Mercaptopurine is a drug which is used to treat certain types of cancer and leukaemia.

How is it given?

Mercaptopurine is given by mouth in tablet form, once a day, at least one hour after food, in the evening.

What are the most common side effects?

Bone marrow suppression: There will be a temporary reduction in how well your child’s bone marrow works. This means he or she may become anaemic, bruise or bleed more easily than usual, and have a higher risk of infection. Your child’s blood counts will be checked regularly to see how the bone marrow is working. Please tell your doctor if your child seems unusually tired, has bruising or bleeding, or any signs of infection, especially a high temperature. Mercaptopurine doses may be changed weekly according to your child’s blood count. Advice will be given by your doctor, nurse or pharmacist or if your child has acute lymphoblastic leukaemia you can refer to the ‘Continuing (Maintenance) Therapy’ booklet for details.

What are the less common side effects?

Temporary effect on liver function: Mercaptopurine can cause some mild changes to your child’s liver function. This should return to normal when the treatment is finished. Blood tests may be taken to monitor your child’s liver function (LFTs).

Itchy red rash: Please tell your doctor or nurse if your child develops a rash. They will advise you on the appropriate treatment to use.

Nausea and vomiting: Anti-sickness drugs can be given to reduce or prevent these symptoms. Please tell your doctor or nurse if your child’s sickness is not controlled or persists.

Mouth sores and ulcers: You will be given advice about appropriate mouthcare including a copy of the mouthcare leaflet. If your child complains of having a sore mouth, please tell your doctor or nurse

AIMS WHEN USING ELEMENTAL DIETS IN CROHN'S DISEASE

Nutritional Aims
* To maintain or improve nutritional status either as a sole therapy or as a supplement.
* To promote growth in adolescents and children.

Therapeutic Aims
* To provide symptomatic relief and improve the quality of life either as a sole treatment or in conjunction with other treatments in more resistant disease.
* To reduce inflammation and thus induce remission.
* To allow reduction or withdrawal of steroids in those with resistant disease.
* To allow healing of fistulae.
* As a supplement to provide nutritional support while conducting an exclusion diet.

ACKNOWLEDGEMENTS
SHS and the author would like to thank Dr. K. Teahon (Nottingham City Hospital) and Morag Pearson (Northwick Park Hospital) for their help and advice in the preparation of this protocol.

This protocol is the work of the author. Any technical enquiries regarding the protocol should be addressed directly to her. Any product enquiries should be directed to SHS.

INTRODUCTION
This guide refers particularly to the management of adult patients who have Crohn's disease and who are using elemental diets as total nutritional support to induce remission, to support an exclusion diet or to supplement a normal diet.

The aim of the guide is to explain how to approach treatment with this type of diet, how to deal with the problems encountered and how to monitor patients during treatment. The reintroduction of food following treatment is discussed and the value of setting up a unit protocol in providing a systematic, standard approach to management is outlined.

Elemental diets are also used for conditions other than inflammatory bowel disease and have ACBS approval for short bowel syndrome following intestinal resection, intractable malabsorption and bowel fistulae. Although there are certain similarities
in the management of these patients, these conditions are not discussed in detail.


AIMS WHEN USING ELEMENTAL DIETS IN CROHN'S DISEASE

Nutritional Aims
* To maintain or improve nutritional status either as a sole therapy or as a supplement.
* To promote growth in adolescents and children.

Therapeutic Aims
* To provide symptomatic relief and improve the quality of life either as a sole treatment or in conjunction with other treatments in more resistant disease.
* To reduce inflammation and thus induce remission.
* To allow reduction or withdrawal of steroids in those with resistant disease.
* To allow healing of fistulae.
* As a supplement to provide nutritional support while conducting an exclusion diet.

Although the value of elemental diets (ED) in Crohn's disease cannot be disputed there are still many areas of controversy regarding the best treatment regimen.
These include :

* Which patients benefit most?
* Which diet to choose?
* How long to treat for?
* How best to introduce food once the patient is in remission?
* When to opt for a strict exclusion diet?


UNIT PROTOCOL
There is currently no consensus regarding the optimal treatment regimen when using diet in Crohn's disease and many units will use different treatment programmes. These treatment regimens invariably require a highly motivated team to ensure success. It is therefore essential that all units who use chemically defined diets to manage patients with Crohn's disease should first develop a unit protocol.

A Formal Unit Protocol:-

* Ensures that everybody involved in the patient's management is informed of the treatment plan.
* Reduces confusion or vagueness in the treatment.
* Allows investigations and patient monitoring to be programmed in an organised and efficient manner.
* Allows a treatment schedule to be given to the patient.
* Allows review of the protocol on a regular basis to ensure it is kept up to date. Having a standardised protocol allows any changes that are made to be rapidly disseminated.
* Allows continuity of patient care irrespective of staff changes


THE UNIT PROTOCOL SHOULD CLARIFY THE FOLLOWING POINTS:-

1. Choice of diet
This will depend on the underlying bowel disease, the patient's nutritional state and the aim of treatment.

The experience of the unit will dictate whether whole protein, semi-elemental or elemental diet is chosen as first line treatment. Irrespective of which diet is chosen, the protocol should state how to progress both from a therapeutic and nutritional point of view if the patient fails to respond to the first line choice. For example, if a patient fails to respond to semi-elemental diet, should diet then be abandoned as a therapeutic remedy or should the patient be given a trial of an elemental diet?

2. Route of administration

a) Orally
This is the simplest, safest and cheapest method of administration and should be used providing there are no contraindications.


b) Indications for a Nasogastric Tube (NGT)
i Inability to drink the product. This problem can occur when patients are very ill and weak and cannot physically manage the diet. Occasionally, individuals find the drink unpalatable and refuse to drink it .

ii Inadequate volume being consumed orally. This can be due to the patient's high nutritional requirements and who therefore require to consume a very large volume of diet. Gastrointestinal symptoms of nausea, vomiting or abdominal pain can also reduce oral intake.

iii If the patient is managing some feed orally throughout the day but cannot quite meet their requirements, then nocturnal feeding should be considered to correct the deficit.

iv The majority of patients with a NGT can be taught how to pass their own tube and become self caring with the feeding regimen. With careful monitoring there is no reason why these patients cannot be discharged with a NGT

c) Indications for a Percutaneous Endoscopic Gastrostomy (PEG)
There is insufficient information on the use of PEG's in Crohn's disease to be able to recommend them in individuals who require feeding artificially for a prolonged period of time.

In Crohn's disease there is an increased risk of developing fistulae and the insertion of a PEG may increase the risk of a gastro-cutaneous fistula. (However, to our knowledge such an occurrence has never been documented). Also, many patients have had bowel surgery which may pose difficulties in the placement of the PEG.

3. Length of treatment
The aim of treatment will determine the length of treatment. If the aim is to meet a nutritional goal then treatment continues until this goal is achieved. If the aim is to achieve remission, the optimum length of treatment has not been determined. Regimens in current use vary from treating the patient until their symptoms of active disease have disappeared, to treating for 12 weeks. Most units treat for approximately 4 - 6 weeks.

4. Policy for discharge
The unit protocol should describe the procedure for discharge. This will prevent the all too common situation of a patient being discharged at the last minute with no organised supply of diet or preparation for discharge.

5. Initiation of the diet as an out or in-patient
Ideally patients should be admitted to hospital to commence treatment with ED. Discharge should be withheld until they are tolerating the diet and meeting their nutritional requirements. Although is easier to monitor someone as an in-patient, it is not necessary to admit all patients. This will depend on the patient's comprehension of the diet, social conditions and motivation to initiate the diet at home.

The introduction of ED in Tetra Brik® has allowed many patients to commence ED as an outpatient. Daily contact between the dietitian and patient is recommended until the dietitian is satisfied that the patient has full comprehension of the diet.

6. Free foods
Additions to the diet should be limited as much as possible; as soon as other items are included then a true elemental regimen is not being followed. When the ED is being used for other reasons than to induce remission in active Crohn's disease, a more lenient approach may be taken.

It is important that all team members are clear regarding which additional food/drink items are allowed. This prevents confusion and possible excuses for non-compliance.

7. Monitoring and assessment
The protocol must state clearly what the frequency of contact with the patient should be. It should also make clear which member of the team is responsible for contacting the patient and who the patient should contact if in need of help. When the diet is initiated, frequent contact with the patient is required. This will usually be in person if the patient is in hospital. If the patient is at home then contact may be by telephone, hospital visits and home visits. These contacts are necessary to assess the patient's tolerance to the diet, to ensure that nutritional requirements are being met, to encourage compliance and to provide support. Once the patient is established on the diet the time interval between each contact can be extended.

Laboratory measures of disease activity and nutritional status are also important. The frequency of these will vary between patients but an outline of the measurements and identification of the person responsible for obtaining them is an important feature of the unit protocol (see Appendix 1).

8. Food reintrodution
The unit protocol should state clearly the reintroduction regimen so all team members are aware of it and conflicting advice is not given.

9. Malnourished patients
During the introductory period of an ED it is common for patients to lose a little weight before nutritional requirements are fully met. In undernourished patients care needs to be taken because further weight loss may cause additional complications. The unit protocol must have a system that can identify malnourished individuals and state clearly the action to be taken. Patients with a Body Mass Index below 18 would ideally be admitted to hospital to begin treatment and should remain as in-patients until their nutritional requirements are met. In such patients it is often best to begin with nasogastric feeding and consider converting to oral feeds later.

Uncertainty in the management of malnourished patients with Crohn's disease may result in several weeks of inadequate nutrient intake and a resultant reduction in nutritional status.



DIETARY REGIMENS

There are two ways in which elemental diets can be initiated depending on the type of diet chosen and route of administration.

* Taken orally - reconstituted powder (flavoured or unflavoured) or liquid (flavoured only)
* Via a NGT/PEG - using an unflavoured diet (reconstituted powder)

When commencing ED, it is recommended to use a starter regimen. The gradual introduction of the diet allows the gastrointestinal function and the patient's tolerance to the feed to be monitored. Evidence suggests that starter regimens are used more frequently to allow the patient to gain confidence with the diet rather than to reduce the risk of GI intolerance.

Every patient should be treated as an individual and the following is only a guideline. Some patients find it relatively easy to increase the volume of diet because they are hungry, others however, with pain and nausea, may have difficulty meeting their requirements.


POWDERED ELEMENTAL DIETS TAKEN ORALLY

* In powder form, a starter regimen is used to gradually increase the concentration of the diet to reduce the risk of osmotic diarrhoea in the osmotically sensitive patient.

* Taken orally, the ED can be flavoured to improve palatability. Separate flavours are supplied by SHS International Ltd. (SHS). SHS also provides an orange flavoured ED. The flavoured and unflavoured product is best taken chilled.

* On starting the diet, samples should be offered to the patient so they can identify which flavour they find most acceptable. To reduce confusion it is suggested that the patient only chooses two flavours from the variety offered. Quite often one flavour is found to be more acceptable and is taken throughout the treatment period.

* The concentration and osmolarity of the diet should be increased as tolerated rather than by following a very strict regimen.

* Additional fluid especially during the first week will need to be encouraged to meet the patient's fluid requirements.
* Once reconstituted the diet should be stored in a refrigerator and must not be kept longer than 24 hours.

Example Of A Starter Regimen Using Powdered Elemental Diet
Day 1:

Concentration    1:7.5
or                  1 in 7.5

(i.e. 100g powder plus 750ml water)
(i.e. 100g powder made up to 750ml with water)
aim for approx. 750 - 1000ml over 24 hours
Day 2:
Concentration       1:5
or                     1 in 5
(i.e. 100g powder plus 500ml water)
(i.e. 100g powder made up to 500ml with water)
aim for approx. 1000- 1500ml over 24 hours
Day 3:
Concentration       1:5
or                     1 in 5
aim for approx. 1500 - 2000ml over 24 hours
Day 4:
Concentration       1:5
or                     1 in 5
aim for the final volume to provide total nutritional or 1 in 5 requirements - approx. 2500ml over 24 hours


LIQUID ELEMENTAL DIETS TAKEN ORALLY

* The starter regimen for the liquid ED is only based on volume as the concentration is predetermined.

* The diet needs to be offered in stages, gradually increasing the volume. If the full volume required to meet the patient's nutritional requirements is offered on the first day it may be daunting and result in poor compliance.

* When starting an elemental diet the patient may doubt their capabilities and will probably be a little apprehensive about avoiding food and surviving solely on a liquid. Regular contact is needed to ensure compliance and provide encouragement.

* It is important that the patient knows what is expected of him/her and for them to have daily goals. It is also important to be flexible.

* Initially the patient should be advised to sip the drink regularly throughout the day. Once the feed is tolerated the drink can then be taken in a manner that suits their lifestyle, e.g. having 1-2 cartons every two hours.
* Advice will need to be offered about taking additional fluid to meet their fluid requirements, especially when the diet is first introduced.

* The diet is best consumed cold, straight from the refrigerator, either through a straw from the Tetra Brik® carton or in a glass over ice.

* Individuals with short bowel syndrome or extensive inflammation of the small bowel may notbe able to tolerate large volumes of the diet in a short period. They may need to be advised to consume smaller volumes continually throughout the day.

Taken from www.shsweb.co.uk

 


I have Crohn's Dsease - a not very nice illness of the digestive system.

History

I was first ill in January 1997 when i was in my first year at university - quite a few of us got dodgy tummies and were taken to hospital, day by day people got better and went home, i didnt.

I was diagnosed with IBS and given some medication.

Things didn't improve and I started to struggle with my uni work, I was admitted to Bridlington hospital for 2 weeks of tests.

On the last day i was given an ultra sound and they found a large cyst on my ovary, they thought this was rubbing my bowel and causing me trouble so a few months later they whipped that out.

Things still didnt improve. I left uni and went to work in a boarding school which was a great job cos i was never far from a toilet, but it was lonely and isolated and I left in April 2000.

For a few months i worked as a receptionist in A+E and signed up to do my teacher training.

Teacher training was GREAT but it really took it out of me, i only just made my days up to qualify in July 2001.

I was diagnosed with Crohns in March 2002, saw a surgeon in August and had almost 1 metre of my bowel removed in September just a few months before my wedding.

I was scheduled to have an ileostomy during the surgery but the surgeon changed his mind during the operation.  I wish to this day he had done it - you will see why later.

I recovered fairly well from my resection and apart from a non-healing wound, it all went as planned.

We got married on Easter Sunday and i was fine.

A few month later i started to feel ill again - back and forth to the toilet many many times a day.  This made work very difficult because i was not meant to leave the children unattended so had to find someone to sit with them while i went to the loo - sometimes i didnt have that long.

Inevitably i ended up too ill to work - i would go out to meet the kind man who gave me a lift to work and by the time i got around the corver i would need the toilet and have to come home.

The doctors said that they didnt think it could be the Crohn's because my inflammatory markers werent high. I was given pain killers but nothing to stop the 15-20 trips to the toilet every day.

We couldnt go out much, we couldnt go far and i worried that Mark would tire of it, being stuck in the house - thank god he is such a star!

We moved back to South Shields so that we were near my family so that they could help out if i was really poorly. I just got used to the toilet trips and the pain.

The doctor here arranged for me to have a capsule endoscopy which is a very new thing and i am very lucky to live in a region where they have one.

You swallow a large pill that has a camera inside and it takes 2 pictures a second, i think, all the way through your body.  The advanatages of this must be obvious.  If you have ever had a normal endoscope done you will appreciate how invasive it is.  This was not.  I lay on a bed with a huge battery pack and waited for the tablet to come back out. Simple!

While waiting for the test results i suddenly felt much worse and wasn't really coping emotinally with the isolation and being stuck in the house. I called the GI nurse at the hospital who got me in to see the specialist.

The result of the tests showed that I am full of active Crohn's disease - all horrible yacky yellow and black bits in me! Urgh! Strangely it was comforting to know exactly what was causing the trouble - not knowing is worse - your imagination can be a terrible enemy!

The upshot being that there is too much disease to operate on it so i am starting weekly injections of Methotrexate and have to go on an elemental diet. This means you can neither eat nor drink anything at all except the cartons of pre-digested enzymes that they give you. It ain't going to be easy, if i have contact with you and am a bit arsy - forgive me - i may be hungry!

This could go on for months!

The methotrexate is a form of chemotherapy which turned out to be very useful in treating Crohn's.

I will keep you posted on how it all goes.

 

UPDATE : June 2005

I have been on modulen food replacment for almost 13 weeks now.  I have lost two and a half stone and am now a size 18-20 instead of 24-26!

The dietician isnt very pleased cos you aren't meant to lose weight on this treatment but what the hell do they expect i ask you!.

There have been developments however in my other treatment.

I started on injections of methotrexate which is a chemo drug and was injected once a week into my thigh. Sadly, after 5 weeks my liver test results wewre sky high and they had to stop the injections very quickly because they were risking long term damage to my liver.

I admit to being very down when this happened because i didint know what would happen next. I thought they might try me on infliximab and that worried me cos its a fairly radical treatment.

Anyway, the genius doctor had other plans. A different kind of chemo that is in digestable tablet form that i can take at home. I have been taking this for a couple of weeks.

The doctor said that any improvements i have experienced have been down to the modulen cos i havent had any of the drugs long enough for them to have made a difference yet.

I'm doing well with the modulen and keeping my chin up - it hasnt been easy and i have had some days when i was tempted to stuff my face but i never did cos i know this will help in the end.

My good days outweigh my bad days, i am not going to the toilet as many times and usually only a couple of times during the night, often without waking up properly (thank god mum bought me the chemical toilet for upstairs!)

I am very very tired some days. Some days i can go out for a good few hours and do well and some days i struggle just in house but i think thats the nature of the illness. I still cant go out on my own cos the pain killers and the chemo drugs make me a bit doddery!

Thats it for now will update when there are more developments.

 

 

This Website Built and Hosted for Free at Bravenet.com

Web Hosting · Blog · Guestbooks · Message Forums · Mailing Lists
Allwebco Web Templates · Build your own toolbar · Site Building Articles · Audio, Fonts, Clipart
powered by a free webtools company bravenet.com