Patients Digestive tract
Topic of the discussion
Posted on 05/11/2014 16:53
Hello all. I have had fibromyalgia and IBS for some years now. I love an outdoors life with camping, but these activities have been quite limited since my diagnosis. First problem is the fibro and the pain it brings, but as for the IBS I am just so paranoid to go anywhere! I tend to have diahrrea and I am very uncomfortable when there is no toilet in sight. I think the problem is mainly mental, since I take Loperamide and it works ok for me. But I still keep thinking "what if".... Does anyone have advice that can relieve the fear? thanks all...
Beginning of the discussion - 06/11/2014IBS and outdoors life https://www.carenity.co.uk/forum/digestive-tract/living-with-digestive-disorders/ibs-and-outdoors-life-147
Posted on 06/11/2014 19:57
Hi im the same with the ibs im so paranoid I dont want to go anywhere im taking immodium but feel very blocked up with this .had an episode on a trip home once now scared all the time.
Posted on 18/06/2015 11:07
hi there. I`m new to this site, but have been suffering with IBS for few yrs now, I take 1 senna and 2 softners every other day, as without them I wouldn`t be able to go and I would pass out, or I`d have to take suppositories to clear my stomach, I find it`s worst if I`m stress`d. I drive as a living so as you can imagine it`s difficult to find a toilet when you need one the most, cos when you have to go its an emergency. I know drinking plenty of water is good, but again out on the roads is not as easy for us women, I also find that if I eat too much fibre eg brown bread, Weetabix etc this is not good for me and can make the condition much worst. ... I would be glad of any ideas to improve or make life easier, thanks
Posted on 18/06/2015 12:13
Hello everyone. Nice to meet you. I too have chronic diarrhoea and a fear of going places after many bad experiences while I've been out and about. I've given up on medication and practical aids. They don't help, and sometimes make things worse. To answer Muffin's question about advice to relieve the fear of travelling, in my experience I've found it best to accept that the fear is a natural response to the bad experiences and that there's NOTHING we can do to remove that fear. Only a relief of the symptoms will make the fear subside over time. While the symptoms are present there's always a chance that there will be a problem while going out and about. I find it's less stressful accepting that travelling is best avoided if possible and to concentrate on what can be done and enjoyed at home and near home. (I've taken up new hobbies, including photography, embroidery and bird-watching). If home isn't a good place to be, move house and if possible find a base that offers a lot on the spot or nearby that is enjoyable! I find I'm happier working with what I can do, rather than fighting with what's impossible.
Posted on 04/07/2015 12:44
I have just had IBS diagnosis. I have had daily diarrhoea for years, but managed to ignore it. For a few months earlier in the year it got a lot worse and I could not tolerate any food some days. I almost stopped eating and I was very worried and sad. I am a bit better now. I am eating well. I have started a food diary. Next step, I will try to take some time avoiding high fibre food and see what happens. It will be strange, since I love my veg and nuts. I also started taking psyllium husk in the morning.
Posted on 01/08/2015 15:38
If you google RADAR, there is a key you can get to open disabled toilets or toilets that are locked. There is a small charge and you can also buy a book which has a list of all the public toilets in the UK. Your specialist or GP can also give you a card that certain business will accept and allow you to use the staff toilets
Posted on 10/08/2015 16:36
I did a food and poo diary for three weeks, cutting down on high fibre food. It worked and I felt so much better.
Alas, I got a frozen shoulder and have to take codein every day so now I have to beware of constipation. Life is strange
Posted on 16/08/2015 21:23
Hi , I have been diagnosed with IBS for many years , I've had a colonoscopy 5 times and endoscopy ten times and many other tests as I suffer from morning vomiting and bad stomach pains and diarrhoea . They have now told me that I have gallstones and my pancreas is not functioning how it should . I am now waiting to have my gallbladder removed and I am having another test which involves a capsule with a camera inside it which takes pictures as it goes through you . I am very hopeful that this test will reveal what ever the problem is as I've also had a ct scan , ultra sound numerous times and a Barium xray . I am getting very desperate and losing all credibility for work ... soon people will stop calling me and just assume that I am unwell . My sincere best wishes to you all x
Posted on 13/10/2015 11:48
Hi all, I've had an uphill struggle with what Dr's can only describe as severe IBS. I used to be a healthy weight but 12 years on I am now down to just 6st 2lbs. My diet is extremely limited as practically everything I eat doesnt agree with me. I live off toast basically! Like Daren, above, I have gone through many tests, X-rays all to come back as nothing to be seen, yet they still cannot figure out why I get all these weird symptoms. This illness is affecting me emotionally and mentally. I practically exist only in my four walls, go out sometimes but am extremely anxious about going out in case I start to feel ill ( I suffer awful nausea, diarrhoea, stomach pains, I have a lung infection, bullaè in both lungs, mycetoma in one lung, depression, headaches and migraines, anxiety, and heart flutters). I had to stop working as I was taking too much time off sick, hardly fair on the employer, or myself struggling to stay in employment, getting myself all stressed and worried over it.
I hope you all find some kind of solution to your conditions. It's not easy.
Posted on 14/10/2015 15:02
My heart goes out to those of you - Muffins, Cormac, xDarenx and Lisa - suffering with diarrhoea on a daily basis. I suffered like you for over thirty-five years. But my symptoms have virtually disappeared now, and I want to share with you what changed things for the better, in the hope that it will help you. Like you, I had all the usual tests and X-rays, but which showed nothing amiss, and much conflicting advice from doctors, none of which helped. And I was in despair and at the end of my tether. And so I started doing my own research and figuring out what was wrong.
To be as brief as I can and to cut a long story short, I actually had two problems: one was an inability to properly digest cow's milk because I'm blood group A, and this gave me noxious wind and abdominal bloating from birth. I figure this must have put a huge strain on my immune system. Those of you who are blood-group A, and/or have more than one problem with other organs involved (such as lungs) may find that of relevance.
For information about blood groups and diet see a book by Dr. Peter J.D'Adamo entitled 'Eat Right for Your Type'. On page 107 it says 'Most dairy products are not suitable for Type As - for the simple reason that Type A blood creates antibodies to the primary sugar in whole milk... This sugar forms Type B antigen. Since the Type A immune system is designed to reject anything B-like, the antibodies it creates to ward off B-antigens will also reject whole milk products.' Not everyone in the medical profession agrees with the general hypothesis in Dr. Adamo's book, but I can report that when I eliminated all dairy products from my diet, my wind and bloating disappeared within days.
However, I still had the diarrhoea, though not as severely, which had started at the age of 32 after a bout of gastro-enteritis.
My first point though is that my immune system played a part, in that it had been under continual stress. Stopping that stress was my first step in recovery.
The next thing was the bout of gastro-enteritis that triggered the long-term diarrhoea. Though the original bad bug had been eliminated, something had changed to cause continuous symptoms. I believe this change was a change in the microbiome of the digestive system. When I had a stool analysis at one point in time, it was found that I had very few of the good bugs in my bowel. So, although I didn't have the bad bugs, I didn't have enough of the good bugs either. These bugs help to protect the bowel wall. So these needed replenishing. My gastro-enterologist suggested a probiotic called VSL#3 which I was able to get from Boots the chemist. (It's expensive and unfortunately not always available on prescription via our GP, which I think it should be.) So my next line of attack was to take these probiotics for several weeks. Another good probiotic is called Symprove. (A three-month course is recommended and that's even more expensive.) VSL#3 and Symprove are the only probiotics that work. Those we can buy in the supermarket in the form of yoghurt-like drinks do not work, because the good bugs get destroyed by our stomach acid, and we need to get them further down the digestive system to the bowel.
My second point, then, is that my symptoms were partly caused by a depletion of good bugs in the bowel. This can be caused by bouts of gastro-enteritis, and by continued courses of anti-biotics, among other factors.
When I discovered the lack of good bugs, I asked myself why these were not re-generating themselves, and after much research, I concluded that it was because they could not adhere to the cell walls of the bowel. The reason for this was I believe due to something called lectins. That is toxic food lectins. These do not normally cause problems in people, but may do so when the bowel wall is compromised in some way, as in the case of an infection, or in the absence of protective good bugs. These lectins are natural proteins found in many foods, especially in cereals. I figured that if I cut out as many of the lectin-rich foods from my diet as possible, it would give the bowel wall a chance to repair itself and for the good bugs to then re-generate.
So my next step then was to cut out the lectin-rich foods from my diet. This was difficult because it left very little that I felt able to eat, and it was necessary to cut them out for up to a year. The medical profession does not seem to have taken this lectin thing on board, but there is information about toxic food lectins on the Internet. Lectins are a natural protein in plants that protect the plants from attack by insects. So they are natural insecticides.
The four main food groups that are high in toxic lectins are: dairy products (milk, cheese and butter), cereals (especially wheat, rye, and barley), legumes (peas and beans), and members of the nightshade family (potatoes, tomatoes and peppers).
When I cut out these foods from my diet, my symptoms slowly but surely improved. Now I eat goats' products instead of cow's. For cereal I eat mainly rice, maize/corn, and millet. And I'm re-introducing a lot of foods I once thought I couldn't tolerate, such as fruits, including raspberries and grapes. And I eat organically-produced food as much as possible, to avoid foods that may have residues of chemical sprays, such as insecticides and herbicides. And I only take medications when absolutely necessary. This is to avoid putting the immune system under stress, for these things can be toxic.
Another diet that I've been recommended which I've found has also helped, and which the medical profession does support, and which is similar to my low lectin diet, is called the FODMAP diet. Information about this can be found on the Internet
I can't stress enough how much improved I am now compared with what I was. I can't recommend to you that you try the low-lectin diet because I'm not a doctor and what worked for me may not work for you. I can only share with you my own experience and see if it inspires you to have another chat with your GP, mentioning my experience and see whether they feel a restricted diet, such as the FODMAP diet, plus probiotics, might work for you.
I wish you luck and hope you'll find relief from your symptoms very soon.