IBS? Yes/no Confused

[puma77ram]

Hi all. After suffering possibly the worst two years of my life with quite literally months in hospital I'm feel failed and let down by the doctors. Despite having a positive biopsy for colitis thickening on a scan visual evidence of colitis on another colonoscopy. I have been told I don't have colitis and it's only IBS. Has anyone bad similar experience. I have tried every thing the doctors have surgested from buscapan through to questran. The majority do nothing for me or cause different issue. I'm following a gluten and dairy free diet which seems to help. I'm now finding little or no help from the doctors and hospital. Does anyone have any ideas that I can try. Please help I'm prepared to do and try almost anything

[grahamrupertrules]

iv siffered for years. have you tried the fod diet. cutting out caffeine, gassy drinks beer. i cant eat onions, sultanasa or mushrooms.i peel all my veg/fruit- ideas to try. also more water. check out vit d- i did and mine was low dwspite being a sun lover. more water and walking all help ibs usually. iv taken up pilates which im sure is helping. stress make sit worse. hope some of this helps

graham

[puma77ram in reply to grahamrupertrules]

Thanks for that I've done all of that dietary bits. I'm running out of things to cut out it feels like. Exercise why I certainly do my fair share and if I had any less stress I'd be asleep. I've been sent to a pain psychologist been put on anti depressants incase it was stress related. I've tried nuropathic medication's incase it was referred nerve pain. Truely feeling lost and running out of ideas. But thank you for your suggestions and help

[Hidden]

A lot of people use the FODMAP diet - I've no need to use it so I can't give any advice apart from the fact that is seems to help a lot of people

[puma77ram in reply to Hidden]

Thank you for your suggestion I'm already on the fodmap diet as well as cutting out wheat dairy and caffeine. I'm just running out of ideas of things to try

[grahamrupertrules]

hi im assuming youv done the riogorous exclusion diet? Not Fodmap much more restictive.i did and was ill a lot but i think it was caused by caffeine withdrawal and stress of an unhappy marriage.

What was the doctrs answer to your results of biopsy if it showed positive? i

dont know much about colitis. anti depreesnants i think only help for a little while and end up being more harm than good as far as ibs is concerned. i stopped as i was much better but when i got bad again and started taking them i either got very constipated or so sleepy couldnt get up in the mornings!

i tried fybrogel for a long time under a doctrs advice. no improvmnt. im now on a low fibre diet but take Normacol as a substite fibre which keeps me free of constipation.have you seen a nutrionist?

is there anything missing in your life or is there something that stresses you out even if you enjoy it?

i know im so much better on holiday than when im at home/work. some things i know are different i drink less tea/more water, relax more, walk more,and have a glass of wine or two a day instead of once a week.

sometimes i can work off ibs like pottering in the garden othe rtimes just getting up and doing a few chores makes it worse. its a very frustrating illness but at least its not a killer!

if i think of anything else i will come bqack to you.

God bless

GRAHAM

[puma77ram]

Hi Graham thanks for all of your suggestions and ideas. My gp is baffled why the hospital are ignoring the positive tests but no one will give me a straight answer and every doctor seems to have a different idea. Unfortunately none of the medical professionals can explain why I can go to the loo up to 25 times a day when it's bad and why I have such bad pain and weight loss. I have taken up model making to keep me busy in my free time..I am trying to be as positive about everything I can. My employer is arranging for me to retrain so I can have a less stressful role earning the same but working less. No matter how busy I keep myself there's always pain and I can honestly say I have been pain free for aprox 21 days in the last 2. My last 2 major flair up have been on holiday so guessing I must find holidays stressful. The only time there has been a major improvements have been when I've been on steroids or antibiotics.

As I said I'm just running out of ideas or things to try.

But thank you so much for your suggestions and ideas

[Hidden in reply to puma77ram]

not much I can say to help you but my experience of doctors is the same -they all say different things and prescribe meds(buscopan/fibrogel) for things I don't have in some cases creating more problems.

[Hidden]

It does seem very strange as to why they would ignore a positive result, I think you need to insist on getting an answer from consultant.

On a different note, I have a friend who's daughter (aged 15) could not walk due to pain in her hip. She went to an alternative therapist and it turned out to be candida in her hip. I always thought it only grew in the bowel . Have you tried cutting out sugar and sweeteners? you would have to do it completely. I dont know if frutose (in fruit) would be included, maybe worth googling it.

I am thinking of going down that road with my son, although they have found a hieteus hernia. seeing consultant again tomorrow.

Hope you find an answer.

[puma77ram in reply to Hidden]

Thanks for your kind words and advise. I have asked the Consultant about the positives and he said it was just an anomaly but it's at least 3 on different tests. I also suffer from adhesions which has caused scaring of the bowel. Again has been dismissed as an anomaly. I have spoken to friends of the family who are in medicine. Who are suprised that I've been diagnosed with IBS and not IBD. To say I'm confused is an understatement. All I want is a way to cope without being hospitalised on a regular basis.

Thank you again for your help

[Hidden in reply to puma77ram]

I think I am right in saying that you can ask for a second opinion. see if you can get referred to a different consultant, maybe in a different hospital. at least then you are not in the hands of one person and you can see if he/she really does know what they are talking about.

im not sure I would accept what you have been told, even if they are from a seeming credible source

[grahamrupertrules]

try no onion ,garlic or mushrooms. see if it helps. no fruit peel or sultanas.no gassy drinks or lager.

frustrating i know. just have to keep trying. low fibre for me and less tea/coffee as well as above foods excluded helps me a lot. i take normacol as fibre substitute.

try to keep positive-its never a killer just a life restricter til we find what can avoid minimise symptoms.

good luck!

gra