IBS D and Cholestagel

I am a 49 year old female who has suffered from IBS D since my early 20s. During that time I had good spells and bad spells but for about the last 10-12 years the bad spells lasted longer and longer until I finally reached the point where it had taken over my life and I finally lost the determination to keep fighting it. It was easier to give in and every time I went out was planned with military precision around where toilets were and I began to avoid going out socially. Just getting to work every day was an ordeal but I did have great support from the colleagues who were aware of my situation. I have had every test possible, almost every pill there is and tried endless diets. I spent a fortune on intolerance tests, which turned out to be nonsense, self help books, hypnotherapy, EFT treatments and was even referred to a psychologist. I had reached the desperate stage, it was excruciatingly embarrassing, I was beginning to feel like I was mad and in a vicious circle where anxiety made it worse, but the more "accidents" I had the more anxious I became. It was difficult to make anyone believe me that I wasn't stressed about anything else - only my situation.

At my last hospital appointment full of tears, yet another different consultant gave me his opinion. He thought I might have Coeliac disease despite the fact that 3 different blood tests had been negative, something he said was in fact a common result to the blood tests. The only conclusive test would be the camera down my throat, something I was very reluctant to undertake. The other suggestion was that things were worse since I had my gall bladder removed about 8 or 9 years ago.

As a stop gap to me plucking up the courage to go for that test he suggested I try Cholesagel. This is apparently quite expensive and the GP had to obtain approval to prescribe it. I was sceptical and not terribly hopeful but I cannot begin to tell you how much this has turned my life around. I have now been taking them for just about 6 weeks. I didn't find much difference for the first 2 weeks then went for 8 days in a row as what I can only imagine is "normal" for most people. I had one small blip on day 9 but have then been fine again for another 2 weeks. I know it is only just over a month but it is amazing to be able to leave the house in the morning without at least 4 trips to the toilet and then stops enroute. I feel like I have regained my life to a degree and feel back on top of the situation again. Today I even volunteered to go to a works Conference - normally I avoid anything that takes me out of my comfort zone.

I have never posted on here before but wanted to share my experience in the hope that it might help someone else who is feeling as desperate as I was and also to hear from anyone else who has tried this drug. This is still, in general, a taboo subject but so many people suffer in silence and I really was at the end of my tether.

13 Replies

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  • Thank you so much for your post as it is always encouraging when you hear of success in getting to grips with this horrible problem. I hope it continues to work for you

  • Glad you found a solution that works for you. Thanks for sharing.

  • Hi, at last you're feeling better & your confidence has returned. Just shows you how determined you have to be to get anywhere these days.

    I hope you have continued success.

    Take care.

  • That's such good news! Enjoy your new freedom!

  • Looby,

    I'm really glad to hear that this has worked for you. Surely it gives us all hope that finding a solution to our problems is more of a "when" and not an "if". Can I ask what dosage of the cholastagel you are on? And how frequently you take it? I plan to ask my consultant for her thoughts on it next week.

    all the best, and I hope things continue to work out for you

    Lewis

  • I was prescribed 3 tablets twice a day with food but take 2 tablets twice a day and find that has been enough at the moment. The side effects haven't been too bad either - heartburn at night but this is generally remedied by drinking a glass of milk. Slightly constipated but that is definitely better than the alternative.

    I was given Questran sachets initially but couldn't tolerate them and they weren't working. The tablets are much more expensive but can you put a price on having a life again!!!!

    Good luck in finding something that works for you.

  • Thanks looby. So did your gp perscribe these or did you have to go privately to source them? I'm trying to weigh up the phenergan route or this medication your taking

    Will have a word with the gp but I appreciate your Comments all the same.

    All the best

  • Consultant suggested them in the letter he wrote to GP but GP then prescribed them. They had to contact someone to get permission as they were not on their "approved list". Took about 2 weeks altogether but had no bother getting them since. I'm sure I read somewhere that they cost £120 for each course so I would try your GP first.

    Best wishes

  • Hi - I have suffered with IBS D for years. Two years ago I was diagnosed with an overactive thyroid and, apparently this is one of the symptoms. I have now had my thyroid removed and am slightly better.

  • Hi Looby, I was also so pleased to hear of a success story and long may it continue! My story may well resonate with you.

    Having been told I should have an endoscopy (camera down the throat) and having heard so many awful stories, I worried myself into the most dreadful state.

    The endoscopy proved to be a breeze -- I only had a local anaesthetic - a sprayed throat. I felt absolutely nothing and just practised deep breathing. The benefit was that I could just go home, no recovery time and my results were "pristine and shining".

    No coeliac, no hiatus hernia. Nothing.

    However, I'd done the damage to my gut by then and started to develop what I now know (I hope) is ibs.

    I only tell you this because if it is ever necessary for you to have the procedure, it isn't always as you imagine.

    Also, because of my worry, constant googling morning noon and night, and what bordered on complete insanity, I developed IBS which is, for me at 68, worse than a hundred endoscopies to deal with!

    With the wisdom of hindsight, I wish you all the very best and everyone else who is searching for answers on this site. X

    Nobiker

  • It can definitely be such a vicious circle and the psychological aspects completely debilitating. Unless someone has been in the situation it is difficult to comprehend. I hope you find a solution to turn things round.

    Very best wishes.

  • It's not so bad having a gastroscopy and/or an endoscopy as this lets the Consultant see what is going on in your gullet, stomach and bowel.

    From these tests they can determine whether the symptoms can be colitis, Chrons or diverticulitis or even if there might be cancer cells lurking.

    If everything seems 'normal' then IBS is diagnosed which is a 'catch all' diagnosis

    It could be that you are intolerant of a food group - yes I know you can have tests but they are not good ones - you can do your own intolerance tests by leaving one food group, like dairy, out of your diet.

    I had almost constant diarrhorea and within 2/3 weeks of a dairy free diet I had'normal' bowel movements. I was 65 when I was diagnosed with IBSD and for the last three years have been on a dairy free diet - it's not easy giving up cheese and cream but I am at least healthy. I go on holiday abroad (I made little cards in French and Italian explaining the dairy intolerance for restaurants) and out for meals where chefs are happy to help - I even have a cheeseless pizza if I want one.

    I use dairy substitutes, Alpro milk and Pure vegetable spread which I also use in cooking and I make my own cakes and biscuits.

    For me a drug would be the lasr resort

    I would suggest that you let the Consultant do the scopes and try your own intolerance tests for at least 2/3 weeks keeping a food and bowel movement diary

  • Thanks for your response. I have had 2 colonoscopies and tried various elimination diets all with no results. Although there are a few foods I def can't eat even the dieticians could find no rhyme or reason in my diet.

    Apart from the discomfort my other reason for not having the endoscopy was that if it was positive for coeliac all they would then do would be suggest a glutten free diet and I can do that without having the test.

    However now that the tablets seem to be working I am happy to persevere and enjoy my new found freedom for the meantime.

    Very best wishes to you.

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