so fed up

I darent go on holiday because I have a few days ok then bang the pain and diarrhoea are back I am having a flare up at the moment. When I saw my consultant she just gave me a web sight to look at about wind My Drs don't seam to know much about it ether. I get so down and depressed. I don't go out anymore incase I need the toilet. Not much of a life is it xx

Hi Margaret

Sorry to hear you are suffering DD.  I'm glad you are getting a sigmoidoscopy which will confirm DD or not for you.  I hope they also gave you antibiotics after each flare.  It is a scary painful disease at first and everybody has their bad days and depressions.  I have had this disease for 16 years, with 5 flares, the last 2 being since last August.  So I have got used to dealing with it and the flares (but I was a real wimp those first few months!!).  I have had my days of rolling on the floor crying in pain, but I now just do my best to get on with life, mostly successfully.

It affects everyone differently, and each of us have had to find what suits us best.  It is trial and error and can be 2 steps forward and one back.  I suggest you look at your SW Food Diary and see if you can use if to find what foods trigger your pain.  For me it is gluten and fat so I simply went gluten free and cut out the fatty SYN treats.  But it has taken me almost 9 months to get these last 2 flares under control.  For others it can be any combination of nuts, seeds, pips, skins, popcorn, red meat, dairy etc.  Most of us take a supplement, like Fybogel which is a stool softener, bulker and mild laxative.  I get mine on prescription from my GP and take one every day, and a 2nd if I feel I am becoming bunged up.  The important thing is to try and keep the colon emptied, so there is no chance of food getting trapped in the Diverticula and setting up infections.  I also take a daily probiotic drink, and 2 teaspoons of pure aloe vera juice (revolting but it really helped to ease the pain).

I too am a member of Slimming World and I contacted them about continuing to follow the diet.  Here is their reply:

"If you’ve been diagnosed with diverticular disease a diet high in fibre and adequate fluid is often recommended to help prevent symptoms. The good news is this can easily be achieved through Food Optimising.  Below are a few easy tips which can be followed (this is the maintenance part after the flare has subsided):

-              Include plenty of fruits and vegetables, including pulses (peas, beans and lentils)

-              Opt for higher fibre starchy foods e.g. wholemeal pasta, wholegrain cereals, brown rice, wholemeal bread.

-              It may be advised to avoid foods with seeds that might plug diverticula, e.g. poppy seeds, sesame seeds, strawberry seeds

-              Aim to drink plenty of fluids each day (aim for at least 6-8 cups/2 litres)

-              Regular exercise is also important as it can help to prevent sluggish bowel movements.

When you’re managing an attack of your diverticular disease it’s important to continue to follow any advice you’ve received from your healthcare team. We understand from your email you need to follow a low fibre diet during these times. We have some information around low fibre diets which you may find useful with adapting Food Optimising to help keep the plan flexible for you.

Although it requires a little more thought, especially around the Healthy Extra ‘b’ choice, achieving a low-fibre diet when Food Optimising is possible. The Healthy Extra ‘b’ choice is included within the plan to support members with getting a healthy amount of fibre each day and contributing towards the recommended intake of 30g fibre daily. As you’ve been advised to follow a low-fibre diet, you may want to avoid these fibre-rich choices, but there are steps you can take to make sure that you don’t feel limited within the plan, or are denied choices. For instance, you can have the same measure of a low-fibre Healthy Extra alternative such as low-fibre (ie white) bread or a low-fibre cereal (e.g. cornflakes or rice crispies).

However, it’s important to be aware that:

•             These low-fibre options are not as filling and don’t have the same health benefits as the high-fibre Healthy Extras.

•             To protect your weight loss it’s important to stick to the same measure as a standard Healthy Extra.

•             It’s up to you whether you want to choose to have these every day or at all – the aim is just to give more flexibility.

Fruit and vegetables also need to be considered when following a low-fibre diet. Removing the skin or peel is one way to reduce the fibre in fruit and vegetables, as this is where most of the fibre is. Cooking fruit and vegetables will also make the remaining fibre easier to digest. Cooked fruit isn’t Free within the plan because it loses its filling power and becomes much easier to overeat. However, as long as you are consuming the fruit in the same proportions as if you were eating whole, uncooked fruit (eg one apple at a time), it is fine for you to do this without counting it as Syns, if this is the only way you can tolerate fruit. Cooked fruit as a snack is still far better than chocolate or crisps.

We hope this general information is useful to you. We are unable to give specific advice on individual medical conditions and we always recommend that members discuss their medical and any dietary needs with their Doctor or Dietitian. Should they suggest any specific dietary requirements this should be able to be easily incorporated into Food Optimising."

Did anyone tell you when the flare starts up, you should stick to a clear liquid diet (consomme, black tea, clear apple juice etc) for the first few days, then move on to an ordinary liquid diet (yogurt, meal replacement drinks etc), then the low residue diet (blended soups, mash, steamed fish etc), and finally move on the the high soluble fibe diet.  Basically take it in stages, whilst giving your insides a chance to heal.

There is no quick fix for this - it takes time and patience, very difficult when you are in pain, and have family committments, work etc.  But for most of us things do get better, and like me, there should be long periods when you are symptom free. 

Sadly I have come to realise the people on this forum have much more experience in dealing with this disease than GP's (unless the GP has it too!!).  There are plenty of tips and hints, about diet, management, and support.  Hopefully some will work for you.  Best wishes and I hope you get your holiday.