advice please

[041051]

I have had IBS for years and I have removed so many things from my diet that I am left with very little. My G,P. referred me to a dietician for help to safely re introduce foods but I had a letter from the department telling me that they are not seeing patients because of Covid and social distancing. There was a lot of information included with the letter which basically told me how to do what I have been doing for years. I'm so angry because it took me ages to pluck up the courage to speak to my G.P. about it and also, I had two appointments with an ENT doctor last year both of which involved getting close enough to to me to put a camera up my nose. Any thoughts on what I can do would be welcome.

[FRreedman]

I would have thought that a telephone appointment would be a satisfactory solution to both you and the dietician. If you get no joy with that then contact PALS at the hospital and ask them to intervene on your behalf. Good luck, get well and stay safe.

[041051 in reply to FRreedman]

Thank you, I will try phoning next week.

[Purplewoman in reply to 041051]

May I ask what things the letter suggested for reintroducing? I have been dairy and gluten-free nearly 4 years wirh very little fruit and veg either and I feel I don’t get enough , I have no clue what to start first as so scared

[041051 in reply to Purplewoman]

Unfortunately the letter just suggested withdrawing various food groups in order to find out what works for you. This is what I have done over the years and like you, I worry about what this is doing to my overall health. I think I might try and speak to my G.P. again if phoning the dietician doesn't work because he was very understanding and I think he really wants to help. I actually changed surgeries right at the beginning of the first lockdown so I have never met him.

[Purplewoman in reply to 041051]

Thankyou for the reply

[artisticmum]

I have been reading a book by Megan Rossi, a dietician and advisor to IBS Network called Eat Yourself Healthy and in there she says that if you reduce the types of foods in your diet, your gut will become more sensitive. My consultant told me to start with a very small piece of food you want to do introduce even of it is only one blueberry or a teaspoon of something and then gradually introduce more of the food until your bowel becomes used to it. It may cause pain and bowel movements until it does, but continue with it until the bowel calms down. If the bowel is still not liking it after about two to three weeks, try something else. I was also told to try yoga, meditation, hobbies like knitting, painting or colouring in - anything to calm the brain gut axis which is also associated with the pain and bowel movements. Hope that helps.

[041051 in reply to artisticmum]

Thank you for that information. I have tried over the years to reintroduce foods but it hasn't worked. I always allowed myself a month with each trial. I always find time each day to sit and read and I always read for a short while when I go to bed. Other health problems make exercise difficult and my mobility has worsened to the point that I can only walk short distances which makes me sad because it was my main form of exercise. I have found a lovely lady who is going to meet me once a week so that I can have someone with me as I try and maintain what mobility I have. I won't give up with this.

[artisticmum in reply to 041051]

So sorry to hear you have mobility problems. I have osteoarthritis which is limiting what I can do. Also, xjrs is right when he or she says the symptoms could be down to the bad bacteria crowding out the good. Because I have have had three lots of antibiotics last year, I am trying the probiotic Symprove. I am trying 5ml at a time at the moment as I have an extremely sensitive gut and struggle to eat like yourself. Hopefully, I will be able to have more gradually and it will help. Symprove is quite expensive, but my consultant has said that Symprove, Biokult, VSL #3 (or Vivomix) have the science behind them. Also Aflorex is one recommended by IBS Network and if you want to try a single strain, Sacromyces boulardii sometimes helps. If you like reading, try Megan Rossi's books or the books by Tim Spector, The Diet Myth and Spoon Fed. Hope all this helps.

[b1b1b1 in reply to artisticmum]

Another one which my gastro recommended is Phillips Colon Health. I got it from Amazon and rad the reviews first. I was absolutely shocked at how positive they were. I have taken it for a few days and have had no negative reaction and I think, a small positive reaction. My gastro said to take it with lunch, and the only problem is that I sometimes forget to take it.

[041051 in reply to b1b1b1]

Thank you, I will take a look at this

[artisticmum in reply to b1b1b1]

I haven't heard of that one. I will have to look Philips Colon Health up. It is whatever probiotic works best for you really. I might try it if I don't get on with Symprove. Thank you and good luck.

[xjrs]

Have you tried Alforex probiotic? Your food sensitivities may be related to a gut bacterial imbalance. Since starting Alflorex I have been able to consume more foods, though there are some I still struggle with. artisticmum is right in that only eating a small number of foods means your good gut bugs are not being fed well which means they are less able to keep the bad bugs at bay. The bad bugs can contribute to IBS symptoms. The trick is to find things that help your symptoms e.g. to tackle pain, diarrhea, constipation, whatever is affecting you, which can then support you in trying new foods. For instance in my case I have IBS-C with pain. I take Linaclotide for this which reduces the pain. Alflorex has reduced the pain too. Since my symptoms are supported I have been able to eat a wider range of foods and I feel much healthier for it.

[Evonne02]

Hi 041051,I've struggled for around 30 years to get help for my IBS. My saving grace was Peppermint oil capsules and going Gluten Free after doing some investigation of what triggered the pains, wind and bloating. I still use Macrogol on occasion and my symptoms have changed dramatically. Certain fruits and vegetables I know I cannot eat still and will never even contemplate trying to eat them again. Apparently they have the highest levels of metals...Conference pears, any type of cabbage,baby type if raw onions 🙇 There's also certain preserved dry fruits that I cannot eat due to what is used to preserve them so I steer clear if those too. This is Sulphur Dioxide which caused worse pains than what I experienced giving birth.

After my investigations I researched and kept getting gluten sensitivity, gluten intolerant, and Ceoliac UK. I went in the Ceoliac UK website and completed an online form. I was then sent an email by them asking me to show the email to my GP so I could get tested for it. I just cannot believe that I was left like that for all these decades.

Like you I'm waiting for quite a few appointments but getting nowhere fast. I hope you get help soon. 😍

[041051 in reply to Evonne02]

thank you for your comments. My G.P. tested me for Coeliac before he did the referral. i think my problems worsened about 12 years ago. I have lipolymphoedema but it was undiagnosed. I had been to dieticians with regard to my weight gain but they obviously never believed how little I ate. I subconsciously decided that the only thing I could do to lose the weight was not to eat or eat even less. My G,P, at the time suddenly realised that I had lymphoedema (it was actually lipoedema) but he couldn't refer to an oedema nurse because there weren't any available locally. Some years later I changed surgeries and the practice nurse had trained to do the "wrapping" for lymphoedema but she wanted the oedema nurse that she had trained with to see me first. The oedema nurse was from another area but she came to the surgery to see me. She diagnosed it as lipoedema but the oedema nurses here are not allowed to treat it. I contacted the CCG and they restarted an oedema service but still only for lymphoedema, so I went to see a G,P, and asked him to do a referral based on the original lymphoedema diagnosis. The problem is, I have osteoarthritis, fibromyalgia, shoulder impingement and radiculopathy so I can't put the compression garments on. I have managed to get back to eating more but my diet is just so restricted and I know that I need to improve my intake of vitamins etc (I do take a multivitamin and mineral tablet but I know that's not the answer. I will certainly try peppermint oil.

[Evonne02 in reply to 041051]

Bless you. Typical of the medical establishment. I have multiple illnesses and feel like you, as though I'm chasing my tail to get help. I wish you the best and hope you'll let me know how you get on. Take care 😍

[041051 in reply to Evonne02]

Thank you Evonne and I wish you well on your journey too.

[Colee-3]

HiI tried alflorex and symprove (which tasted yuck) and not much help , so i tried hey nutrition probiotic complex which is pretty expensive but working so far. I'm still dairy free and take 1 loperamide every morning but things are looking up. Wishing you well. Its a tough thing to deal with.