Follow up

Hallo there iv had lovely supportive and helpful posts from all on here and just wanted to share my follow up to show im among the many who have now been let down and left to their own devices. So the last time i posted i was in the middle of a terrible flare up constant bloody mucusy diarrhea from 3am onwards feeling so ill i wasnt eating and when i did eat the stomach pain bloating gas acid etc was unbearable and i went to gp twice the 2nd time getting very emotional as iv had problems for around 14years now. She was fab and agreed my lower abdomen was very tender and she felt it may be IBD and finally after ruling out coeliac etc with blood test she referred me to gastroenterology. I didnt have much hope as i have no faith in medics whatsoever after going theough this nightmare. And i was right the gastroenterologist was a condescending soso to be polite. He spoke to me for max 15mins. Told me i had not given him cause for worry. He asked if my work was stressful i said it was but i loved it very much. He then said he thought that was my problem and coukd i change jobs i replied no its not an option. He then said i obviously had my limitations to changes i could make as he had limitations to what he coukd do for me and since iv tryed all meds all he could do was offer an anti sickness tablet??i dont get sickness?? And to put my mind at rest he woukd give me a stool sample kit but he didnt expect anything from it and didnt feel i warranted another consultation so he would followup with a phonecall in 2months time. As i was leaving he said oh u could try this and handed me a fodmap diet sheet which i already have. And that was that. Iv never felt so undervalued in all my life and i dont think i woukd ever have the confidence to ask for another appointment again. Ibs is officially a living hell and i beleive ill have it all my life. What a thought. I truly hope some day it will become more investigated than it is now icant think how many more of you must feel as i do right now and my heart goes out to you all. 

14 Replies

  • Hi Montykat, I'm sorry you have had such an awful time with the consultant. I just wanted to say that the low FODMAP diet is really worth a try. Unfortunately many gastro consultants see it as a last resort after trying medications. I have seen tremendous improvements in most of my patients on the low FODMAP diet, many of them were in a 'bad' place just like you. The low FODMAP diet can be tricky to negotiate so it is advised that you consult a FODMAP dietitian. If you want quick access to a private dietitian you can look on the website or email me: and I can let you know FODMAP dietitians in your area. Alternatively your GP can refer you to an NHS dietitian (waiting list usually months). 

    Don't give up. Take care.

  • Hi Montykat. After years of battling with bloating, pain either diarrhea or constipation and eventually only being able to eat pasta and Swiss chard, I read about starting the day with a "green" smoothie to detox the digestive system. I also have a cup of green tea (haven't been able to have tea, coffee or anything else for years). Also drinking a lot of water throughout the day. After three weeks, I can now eat the veggies and fruit I love and crave (except carrots, they still give me trouble)!  Spinach, chard, zucchini, broccoli, coriander, basil - any of these (not all the same at once) I blend with an apple, banana, orange, pineapple, green or red pepper, mango - whatever takes my fancy. I also add some double cream unflavoured yoghurt, a bit of honey with a pinch of cayenne pepper or turmeric. Raw ginger is also good to add in, gives a lovely tang! Lemon juice can also be added, but I prefer a bit of brown vinegar.  I don't dread meals anymore and feel full, and a bonus is I've lost weight as well and have so much more energy - I can now play with my three grandchildren which is the best ever! Good luck and don't give up, you can find what's right for you. I think the way to go is doing it yourself, because I agree, the medical profession are totally unsympathetic and not understanding of just how IBS symptoms invade and rule one's life.

  • Hi Montykat, Just want to sympathise with you and all you have been through and can fully understand how the Gastroenterologist made you feel so undervalued, I wonder why these professionals cannot be more helpful, kind and considerate even if there is a limit to what they can offer they could be more pleasant and understanding. 

    I paid a lot of money for an appointment to see a leading Consultantant at a private hospitasl  for stomach problems some time ago.  His manner was brisk and arrogant, he was very short and sharp with me and he didn't think there was much wrong but he wanted to do a colonoscopy to be sure.  I explained I couldn't take the Picolax drink you have to take before the procedure as I am so allergic to it, I ended up in a serious condition through dehydration as I've taken it before.  He was so rude to me and suggested if I had a computer I should look up what else I could take instead of the picolax.  He could have offered me a CT Scan or other tests before the colonoscopy but he didn't.  I also came away from seeing him feeling so upset and never heard from him again except when he sent his huge bill in.  Now looking back, I feel it was neglect on his part as he had a duty to me to persue my problems further.  Thankfully, I got better gradually but now the symptoms have flared up again so now going down the same path but I certainly won't be going to back to see that terrible man again.  I do you hope that the FODMAP diet others have suggested will help you.  I may end up trying it if all else fails. 

    Could you go back to your GP an ask to see a different Gastroenterologist, I know it's hard and  I know just how you feel.  I have told my Doctor that I don't ever want to see that awful man that I saw the last time.  I'm sure there must be nicer consultants out there who would be more helpful, we just have to find them.  Good luck.

  • Wow, what a perfectly awful experience, I too saw a gastro consultant privately,and couldn't have had better treatment, he was so considerate. I had blood tests, he organised a full ct scan of my pelvis and abdomen, and a colonoscopy with two biopsies. I must say the prep stuff was pretty vile, but I was put out for the procedure and didn't know a thing about it. How lucky was I? 

    All was clear and ibs was the diagnosis, but I don't believe there really is such a thing, it's just a generic term for a host of conditions, all of which could be sorted with the right investigations and the will and wherewithal to do it. 

    The FODMAP diet could have huge benefits for you,  it immediately solved a lifelong problem with diarrhoea, for me,  which has all but cleared. It's not an easy diet though, and you have to stick to it.

    Good luck, there is someone out there who will help you, don't be afraid to ask them for their experience in this field. My consultant told me that people should always seek references!!

    No biker

  • Hi No biker, Thank you for your very nice reply.  I'm very pleased you were treated so well and all your tests were clear.  You were lucky to be 'put out' for the colonoscopy procedure, I didn't know it could be done.  You obviously found a really kind and considerate gastro consultant. 

    I went back to see the Dr. again today and it was suggested I have another colonoscopy and that I would be sent back to the same horrible consultant!  I came home feeling so upset but had the courage to ring the surgery and said I needed to see somebody else and explained again why.  The Dr. rang me back and I have the name of another Gastroenterologist who he said was "very nice" but please could you let me know how you get references? I've looked on line and read up a bit about this consultant and he sounds ok.  I need somebody really good at his job as I know damage can be done during the examination.

    Thanks for info. about FODMAP, if all else fails I will certainly be looking into this.   Once again many thanks for your support and taking the time to let me know of your experiences.  This is a marvellous site and so helpful.  We can learn so much from each other.

  • Hi no biker,

    Feeling very apprehensive today as I now have an appointment to see a grastroenterologist tomorrow.  I am told he's "very nice" so I am hoping he will understand all the problems I have with taking the "picolax potion".  I am hoping perhaps he will do an ultrasound first and then perhaps a CT Scan before he does the colonoscopy but I expect I will have to go through that eventually.   Over the weekend I had a look on the internet and sacred myself silly as I seem to have symptoms for just all the "nasty" things I could have.  I know it is stupid but I guess we all get so worried we are desperate to find out whats causing all our problems.

    I hope you are still benefitting from the FODMAP diet and you are beginning to feel better. 

    I am so grateful for this site as we can get in touch with others who have been through all the same experiences.  Thanks for reading my message.  

  • Hi there, how did you get on with the new gastro guy and your colonoscopy? Haven,t looked here for a while. 

    No biker

  • Hi there No Biker,  Thanks very much for getting in touch again.  I went to see the Gastrolenterologist and he immediately suggested a colonoscopy.  I described the chronic allergic effect the Picolax has on me so he prescribed Moviprep.  I got home and looked up the contents and it contains Aspartame which I am allergic to.  I am a chronic migraine sufferer and have been for over over 40 years and I cannot tolerate Aspartame and many other potions. These migraines have wrecked my life so the IBS symptoms were another complication on top of the migraines which I cannot control.  I knew the Moviprep would make me very ill, I would become severely dehydated with horrific diarrhoea and vomiting as this happened to me once before and I was virtually unconscious the last time.  I knew the gastro. chap didn't really understand so reluctantly I had to cancel the test.  It so happened I couldn't have kept the appointment anyway as I've just had 11 almost continuous days in bed with migraines triggered by taking  Omeprazole which didn't suit me, so I wouldn't have been able to take the Moviprep anyway as I was already flat out with the migraines. The Omeprazole really helped my stomach which was a shame.  Anyway, thankfully my stomach has settled down to almost normal and the pains have subsided.  All the blood tests came back normal and I had 2 stool tests carried out.  One by my GP and the other (coincidentally) came through post from the NHS and that came back normal too. 

    I have had an ordinary CT Scan done, results not back yet. I couldn't take the Moviprep for the scan which they wanted me to take and also I couldn't have the Contrast given to me as again my system just won't take these preparations.  I am already knocked out with migraines day after day and cannot get them under control at all.  Now I discover the gastroenterologist wants to do another test called a "SeHCAT Scan" for bile acid mall absorption but have discovered I have to drink this Radioactive solution.  I rang the hospital Scan department and they didn't know much about the solution.  They said it may have to come from the nuclear physics dept.  I don't think I dare drink this potent sounding stuff as I have no idea what will happen to me.  If Omeprazole make me really ill what will this radioactive potion do to me? 

    Well, I am so sorry to burden you with all my troubles but I do feel very alone with all my problems.  I have been in bed most of the day again with migraine which just goes on and on and don't feel strong enough to go through any more trauma.  I am a very strong person normally and have been through a lot in my life but beginning to feel at the end of my tether now.  If you've got this far, bless you for reading it through and if you have time, any comments would be much appreciated.  I hope you are continuing to benefit from the FODMAP.  Many thanks for getting in touch again and Good luck. 

  • You seem to be having a very bad time. It is awful when you are allergic to something and people don't seem to understand.

  • Thanks Portechee for reading my blog which was written four months ago. Actually nothing has changed, I am in exactly the same position now. My stomach settled a little but it has never been right and now it's back to how it was all those months ago. The migraines are just as bad also. In fact the diahorrea leaves me so dehydrated even if I drink loads of fluids and that brings on another migraine. I just can win. I am in a terrible viscious circle that I am unable to control. I've tried going gluten free and now back on wheat again but my stomachs not right on either. I've tried dairy free also but nothing seems to work. I'm on the FODMAP diet (mostly) but even that doesn't work for me. I'm in a bit of a muddle for sure. I'll have to try and get back to see the gastroenterologist but I don't have much hope of him helping any more than he did the last time.

  • They have never had to suffer as we have so don't realise just how awful it is.

  • hi

    if you got 15 mins with gastro guy you wree forunatr. most have about 5 mins for you.

    you mentioned stress in job. what do you do to relieve it?

    i dont feel my job is stressful i just dont enjoy it much these days. when im on holiday i rarely get ibs. how are you on holiday?

    i know stress triggers my ibs as well as certain foods. iv suffered with ibs for 20 yrs so i know how miserable it can make you . wears you down if more than a couple of days at a time. NHS JUST DOESNT HAVE THE RESOURCES TO HELP IBS SUFFERERS Much.

    i guess as its not a killer they get less funding than cancer/heart ills.

    hope you find away sur ei will be better when i retire/se,i retire in 2 years.



  • Hi graham thanks for taking time to read and reply. Im a care coordinator for a private home care company. I coordinate all the rotas for the area for a team of 20staff. I absolutely love it and still go out to do home care work aswell particularly if people are off sick and we are short. Its a strange kind of stress i feel anxious in the mornings trying to get myself and my kids out on time and some days i know im going to have a particularly hectic day. So if im getting the kuds to school running to pick up a few morning visits with clients then into office and the phones ringing all day a couple of folk call sick so i either have to find others to cover or help to cover it myself. There are only 3 of us in the office so its always busy also admin duties and supporting my boss with reviews and meetings. I also take turns at being on call out of hours which is 7am-10pm 7days a week which is super stressful. To be honest i guess i deal with it as i go along ill sit down and have a good moan or a cry get it out my system. Socially im not a big public socialiser i prefer to spend time with a book and a bath lol or a good film. Iv got used to being more comfortable in my own home with my family. If im doing ok at weekends we head out walking or to the park but im careful as im dealing with every day back pain aswell so if i over do it end up having to rest up a few days!!

  • It seems you just hav to read loads and look after yourself as best you can.

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