Hmm…there seem to be some strange goings on at the Gut Trust, the UK charity dedicated to IBS sufferers. The trust, formerly called the IBS Network, has just issued their latest edition of their journal Gut Reaction, and it contains a prominent ‘apology and explanation’.
They say that the Gut Trust is “struggling through a period of upheaval”, list several resignations of staff members, and go on to say that their entire board of trustees has also resigned. What particularly caught my eye was the way they phrased the resignation, saying “the trustees who were in charge at the time of rebranding the IBS Network as the Gut Trust [have] resigned”.
The editorial goes on to say that “rebranding drastically depleted our resources without the expected return in terms of new members and corporate sponsorship, so we had no option but to make difficult decisions to reduce expenditure.”
In other words, changing from the IBS Network to the Gut Trust cost a fortune and didn’t do much good, and now they’re struggling, cutting down on their helpline hours, increasing the price for membership, and even asking members if they wouldn’t mind reading Gut Reaction online rather than in print to reduce costs.
Now, I’m kind of torn on this subject. I was a fan of the old IBS Network for many years – it was an organisation set up by fellow IBS sufferers and a huge amount of work had gone into supporting us intestinally-challenged folk.
But I was definitely against the name change and rebranding – my blog post from October 2007 tells you why (basically I thought that the name of an IBS charity should really have the word ‘IBS’ in the title).
And I am afraid to say I feel even more strongly about one aspect of the Gut Trust’s work, and that is the involvement of Dr Nick Read. Dr Read is a gastroenterologist and analytical psychotherapist, and he has a huge influence over the Gut Trust, or at least he has a huge influence over Gut Reaction, which if you are a member of the Gut Trust really amounts to the same thing.
In this latest issue of Gut Reaction Dr Read has no fewer than two full articles and then two further pages of replies to sufferers’ letters. He is presented as the absolute authority on all things IBS, and his views have appeared in Gut Reaction for as long as I can remember.
So what’s my problem with him? Well, have a look at some of the things he says:
In an article about IBS self-help groups and patients’ attitudes: “I used to talk to the group at Sheffield, but was somewhat dismayed and embarrassed when the discussion seemed to turn to how doctors didn’t recognise or care about IBS. It seemed that all the grievances that the members had in their lives were being projected on their overworked GPs.”
GPs are overworked and don’t have the solution to IBS, but they often treat us like trash. Maybe that’s why we moan?
Another quote from the same article: “If you can present your doctor with specific questions about diet, stress, drugs instead of overwhelming him with ‘the pain is dreadful and I just can’t cope anymore’ you are likely to be able to work in a constructive partnership to manage your IBS.”
That may well be true, but when I couldn’t cope with my IBS symptoms I could hardly get up in the morning, let alone research all of the things about IBS that my doctor should know already.
In a reply to a letter from the mother of an eight year-old boy who has many health problems including diarrhea, pain, epilepsy and hayfever: “Do reflect on the emotional connection. I imagine Joshua as a rather sensitive boy. Things upset him, but he would not find it easy to talk about them and deal with them. Any tension would be expressed through his body through the sympathetic nervous system and could bring on the illnesses he suffers from.”
In reply to an IBS sufferer’s letter: “Otherwise unexplained gut symptoms are so frequently related to anxieties and stresses that wrench the gut out of kilter. Do reflect on whether there is any cause for stress or tension that might be keeping things going.”
In reply to another IBS sufferer: “Symptoms of bowel looseness that persist after an attack of gastroenteritis can be associated with persistent anxiety or depression that was around at the time of the original infection.”
In reply to another IBS sufferer who is moving house and quite ill: “Displacement can be quite a major source of stress…such dislocation is often felt in the body.”
In reply to yet another IBS sufferer (this is my favorite quote of all): “Perhaps if you could cease to worry so much, learn to relax, your guts would not be so sensitive.”
Yes, ladies and gentlemen, it’s the good old ‘just calm down and stop being so dreadfully neurotic’ defence! Honestly. Anyway, you probably see my point.
I wouldn’t really mind all of this if the Gut Trust presented opposing points of view – from nutritionists, for example, or other gastro doctors. But on the odd occasion when this happens, Dr Read is often given room to disagree with the article and reiterate his old psychological beliefs.
His influence is so strong that I remember reading Gut Reaction for the first time, many years ago, and being surprised to ‘learn’ that I actually had a mental health/emotional problem rather than a gut problem. It was only when I started researching things myself for my websites that I realised that Dr Read was firmly in the minority with his views, and about 20 years behind many doctors.
I’m lucky enough to receive review copies of most new IBS books that come out, usually written by leading IBS specialists, and I honestly can’t remember a single one that has presented IBS as some kind of physical representation of emotional trauma. And yet that’s exactly what Dr Read does, year after year, in the only IBS journal there is. Nobody else’s ideas get a look in. That’s just not on.
So I’m sorry that the Gut Trust are struggling, and I’m especially sorry that the people who have put so much hard work into it are now finding life difficult financially. But if it means that we hear a little less from Dr Read then I can’t say I’m going to be crushed.
29 responses so far ↓
1 Sharon // Jul 23, 2009 at 9:59 pm
Hi Sophie and all others in IBS land. I haven’t commented lately but always read and love your monthly rants. I’m with you on Dr. Read. I never pay any attention to any advise or depiction of IBS unless it’s from a fellow sufferer or a reseach scientist conducting clinical trials. But I think the good doctor was well-intentioned and that’s everything in my book.
I wanted to make a quick comment regarding a new something I tried. My allergist recommended it to keep the candida (if it even exists) at bay. I had a high end of normal test result so he offered the usual nystatin or “saccharomycees boulardii.” I actually read about it years ago for candida. Called “yeast against yeast” and I believe was discovered by the french. Anyways, two pills later and I’m somewhat constipated. Not horribly so but I have a slow gut to begin with rather than that horrible diarrhea that so many of your subscribers do. A little research later and I find that boulardii is prescribed for just that – diarrhea- and allegedly with a good deal of success.
Had to let you guys know. No other noticeable side effects. Maybe it’s just me but I find these things simply amazing. I stopped it but I’ll start up again and maybe just up the magnesium I take at night.
Keep up the good work and good research all.
Sharon
2 lolo // Jul 25, 2009 at 9:57 pm
You should all be tested and treated empirically for parasites. I was diagnosed with “IBS” two years ago and I was so miserable that I had to drop my classes and quit my job. With my parents support, I found a brilliant doctor who does not believe in the IBS diagnosis. He said that parasites are more common than people think. He found giardia in my duodenum. Even though My ova and parasites and antigen test were negative, he said that those tests are not always accurate. He has linked certain parasites to ulcerative colitis as well. The combination I was given includes:
500mg tindamax two tablets twice a day
500mg Alinia 1 tablet twice a day
100mg mebendazole once a day
You have to take this for ten days and then take a two week break and do it again. Do this three times and you will eradicate it. Its not fun so plan on staying home.
This combination will work. It worked for me. It is expensive (about $900 per treatment) so hopefully you have good coverage. Family physicians don’t know how to properly diagnose let alone treat parasites. Oh, and flagyl NEVER works. Also, do not look to your gastroenterologist for help, I went through four. All they are good for is colonoscopy and endoscopy.
Good Luck
3 Kevin McCarthy // Aug 7, 2009 at 9:38 am
I don’t have IBS, but it doesn’t take having the condition to realize the arrogance and dominance that seems to characterize Dr. Read. I have close friends who suffer from IBS, and, as far as I know, their cases are mild and hardly related to some psychological disposition or condition. There are plenty of doctors out there who disagree with Read–as you note–and one of them, Dr. Mercola, is featured on his website mercola.com and also icyou.com. icyou is a user-generated website for health care videos. i work for icyou.
4 Carole // Aug 7, 2009 at 1:37 pm
well I firstlty found the gut trust when I was looking for support but was put off joining it by the above.
I agree with all that has been said and was stuggling to cope alone until I thankfully stumbled upon this site am stil not sure how to post messages on it.
5 Amanda Jane // Aug 14, 2009 at 7:43 am
You are so right about the Gut Trust and Nick Read. The politics of the organisation seem to have desparately over taken their role as the charity to support sufferers. I was dismayed to learn that they only have 2000 members and did think they should be trying to broaden this but paying massive fees to a London PR agency did seem a bit of a sledgehammer approach.
The question now is where they go from here!
6 adam // Aug 22, 2009 at 9:41 am
well first of all congrats on such a great site.
ok here goes…i have been suffering a LOT from gut probs for nearly 2 yrs.hav done all tests and evrytngs normal so i thought it was ibs.but the doc says it cant be ibs bcos he gave me colospa which is supposed to be a time honoured treatment for ibs and it didnt work.
the other thing is…if i havent previously emptied my bowels and i try to use my brain for some thing resource intensive(like multitasking) then i feel like emptying my bowels.eg-if i try to play chess when i havent emptied my bowels then i feel like going.(mind u,its not as if i can use this to my advantage!!!).its not due to stress or anything like that,its just, the very act of thinking a little hard stimulates my bowels.is this a symptom of ibs(not many seem to have it).
another thing is that thro all my troubles even when i eat something that doesnt agree with me i
NEVER have pain.any advice.
7 Sophie Lee // Aug 22, 2009 at 9:55 am
Hi Adam – sorry to hear about the gut problems. For lots of different treatment ideas and reviews have a look at http://www.irritable-bowel-syndrome.ws
What I can say for sure is that any doctor who says that you can’t have IBS just because Colospa (mebeverine) hasn’t helped doesn’t know the first thing about IBS.
Plenty of sufferers, me included, find anti-spasmodics like mebeverine to have little or no effect. The idea that it could be a diagnostic tool because it works so well on IBS is just nonsense.
8 adam // Aug 23, 2009 at 1:12 am
hi sophie -thanks a lot for ur advice.the thing is i dont have pain also so i was wondering if it could be parasites like lolo(above).im going to try and get in touch with him/her,hope he/she reads this.
9 valen // Sep 2, 2009 at 11:26 am
I haven’t looked into Gut Trust yet, but I will. My mom just sent me this article that said”Though it’s not known for sure, experts believe that when you have IBS, there’s a breakdown in the normal communication between your gut and your brain. Nerves in your GI tract shoot pain signals to the brain when there’s nothing really wrong – just a little gas passing through, for instance. Or garbled messages may get sent from the brain to the muscles in the intestines, causing them to overcontract so food is forced through with lightning speed, triggering diarrhea. In other cases, muscle contraction slows almost to a standstill, leading to constipation.”
I know this is true for me. I am 19 and have had IBS since I was 10. I have had large amounts of stress and anxiety my whole life and that is why (i believe) that i have IBS. I have tried EVERYTHING especially diet, doesn’t matter WHAT I eat I still have symptoms. Right now I am trying to get my head straight so my gut will follow. I also do have a condition CRPS (chronic, regional, pain, syndrom) which is where the brain and the nerves send mixed messages. My foot could be blue, swollen and in excruciating pain when it is not injured in the slightest way. Everybody is different with this IBS stuff.
10 lolo // Sep 4, 2009 at 11:27 am
Hi Adam,
I suffered for two years. It’s not easy to eradicate. There are other parasites that cause IBS symptoms too. Blastocystis Hominis is another common one. There is a different treatment regimen for it. I could post it if you would like.
Now I am taking extremely high doses of probiotics. I take 800 billion of thirteen different strains every day. Liver transplant patients usually take 450 billion per day.
It will take some time but you will beat this. Let me know if you need anything else.
11 adam // Sep 6, 2009 at 12:50 am
hey lolo-good to hear from you at last!!!
so whats up with the bacteria ,i thought u were completely fine.anyway i would be grateful if you could post the treatment regimen.also what kind of doctor did u got to exactly.
well i hope u feel better.
12 adam // Sep 6, 2009 at 7:10 am
what are your views on the ibs treatment centre?
13 Diane J Standiford // Sep 10, 2009 at 3:07 pm
Awkward situation at best, what a bummer. I was glad to find a blog on this topic.
14 lolo // Sep 12, 2009 at 4:45 am
I take High doses of probiotics because I had giardia for so long that it eventually affected my secretory IGA in my intestines. SIgA in a healthy person is around 400-800. Mine was 66. I had a very bad case but it wasn’t always that bad. At first it was only bad every few weeks. I was still able to work and go to school. After about a year and a half
it turned into daily discomfort. After going through 4 gastroenterologists, I ended up going to an MD that I had to wait 3 months to see. He was a general surgeon resident that saw a lot of unnecessary procedures being done so he opened his own clinic and he is basically a detective now. He has patients with ulcerative colitis that he has saved from colon removal. As far as the IBS diagnosis, He doesn’t believe in labeling intestinal discomfort as IBS. He believes there is always something that causes the irritation. After everything I have been through, I have lost faith in doctors. You just have to find that one doctor who thinks outside the box.
I don’t know where you live but your best bet is to find a homeopathic doctor. They are great for properly diagnosing parasites. You could also try an infectious disease doctor. I had posted the drug treatment I had above. It was very hard to take. The side effects were almost unbearable. If your case is not as serious as mine, try taking Artemisinin and goldendeal for two to three months. I take it now just in case there were a few cysts left. The doctor recommended it and I think it was a good idea. He actually suggested the herbs at first but I was so ill that he gave me the tindamax, vermox, and alinia. If you give me your email I can send the name of the company with the herbal combinations I take. DO NOT RELY ON GASTROENTEROLOGISTS FOR TREATMENT. If they had properly diagnosed me in the beginning, I wouldn’t have lost a year of my life. They are necessary for colonoscopy and endoscopy and that is it. Everyday they ruin people’s lives by mistreating.
When I went in for my colonoscopy, I asked my gastroenterologist to ensure that she took biopsies and to order them to be tested for pathogenic bacteria and parasites. I had all of my lab paperwork sent to me and all they looked for were cancerous cells. They also tested my samples for H.pylori which I had already told them I didn’t have because I had just been tested twice for it before. They did not listen to me at all. Again, you will get through this. It’s just funny that the internet is more useful than most doctors.
15 lolo // Sep 12, 2009 at 4:51 am
Oh and my doctor is also one that corresponds with that clinic in Australia. He also believes that the HPI treatment is always and option when all else fails. He has had a few patients that have been successfully treated with it. He doesn’t use it as the first line of treatment but he is open to it. There is a great lab in the US that makes the bacteria I take. You have to be a health professional to order it. Thankfully my mom is a pharmacist but I am sure your doctor will order for you.
16 adam // Sep 12, 2009 at 6:09 am
hey lolo-
thanks a lot for all your help.i really hope you get cured.
17 lolo // Sep 12, 2009 at 9:07 am
Hi again Adam,
How bad are your symptoms? I am cured but the problem with the parasite I have is that it reproduces through binary fission so there is a chance that if there are any cysts left, they could produce a whole new infection. Mine manifested itself in a way that is harder to eradicate. The initial medications made such a big difference because it killed off the troph stage (active stage) so I am taking the herbs just in case. The only symptoms I have now are from the herbs but I would rather take them than have to take those meds again. Give my an idea of what your symptoms are like. Are you able to live your daily life? Would you consider taking the herbs.
18 adam // Sep 13, 2009 at 3:03 am
my symptoms are bloating and irregular bm’s that are slightly watery.i never get any pain.no i m not able to live my daily life.i get light nausea rarely and im intolerant to a few foods.i had given my email address but it doesnt seem to b showing so here it is again- [Note from Sophie - afraid I don't let email addresses get through the comments on the blog, as they're easy pickings for spammers. Lolo, if you'd like Adam's email address then send me a note and I'll get it to you.]
19 lolo // Sep 14, 2009 at 10:55 pm
Hi Sophie,
Yes please send me his email. Thank you.
20 Kathleen // Sep 20, 2009 at 1:51 pm
Adam the IBS treatment center saved my life. they have the best tests. I was diagnosed with multible food allergies,almonds,sugar,gluten intlolerance,eggs,dairy. I know this sounds alot but there is so many other foods out there just get educatued. Its hard but most people don’t have the food allergies that i do. It will cost you about a $1000.00 the first visit and with all the tests. It might be cheaper since you won’t have the problems that i did.
He is good Dr. I went through natropath for a year before i went ot the IBS treatment center in seatlle washington. She got me on the right path but did,nt get the testing that i needed. The mainstream Drs did’nt help me either. I wasted alot of money on trying to figure out myself on books.
I spent 4 yrs feeling bad and just getting worse. Don’t waste your time and energy and money and go to the IBS treatment center. I think its better to go to specialist for IBS. He has been through it and knows how you feel.
the primary thing they found was yeast infection. plus they found pinworms,Iron deficiency,clostridium difficile bacteria. This is what you get when you let your food allergies go. This is just my oppinon. You can have multiply food allergies and hopefully some of these will go away.
Will see after i get rid of the yeast and get my digestion on tract. he recommended nutritionist that understands IBS and problems with it. I need to save some money before i go. I’m feeling like a real person again. The fatigue is going away. The Anxiety that i was having ,is alot better. still have some. I’ve read that it can take 1 yr to get rid of yeast. The pain in my left side is finally going away. i had alot of stomach issues.
The only thing i would advise ,If you can’nt stay away from the food your allergic to than you won’t get better. Hopefully sugar won’t be on your list of food. That is exstremly hard. There is other sugars out there that i can eat but not now since i have yeast problem,they feed on sugar.I blew it and eat alot of dried fruit and got sick for a week due to the yeast problem.but i’m adjusting.
I’m feeling so much better its worth it. Keeping myself busy so i don’t think about food. Be Positive and stay away from your food allergies and life will be good
21 Patrick // Sep 29, 2009 at 4:52 pm
I’M SO CONFUSED. I am long term sufferer of IBS-D but have only just found this site/blog. I am very active on the HelpForIBS.com site and am very puzzled at the differing approaches. HelpForIBS encourages the consumption of wheat products as long as they’re not whole wheat (i.e. white bread, pasta etc.) as stabilizers while here, most advice is for a complete boycott of wheat. I know it’s an individual thing and you would probably say I have to figure it out on my own with experimenting but I’m surprised at such a difference in schools of thought on this. Could the difference be attributed to IBS-D vs. IBS-C?
22 Sophie Lee // Sep 30, 2009 at 7:51 am
Hi Patrick – welcome to the site! I’m afraid that there are about 20 million schools of thought when it comes to IBS, rather than just two…
Some people will tell you that diet isn’t even important for IBS, some will say gluten-free is the way to go, some like Heather at helpforibs.com believe that it is soluble fiber that is most important (hence the white bread etc…), some will say that wheat-free is necessary but an entirely gluten-free diet isn’t…I’m afraid it’s just a reflection of the fact that IBS is not easy to treat and people are, as you say, individuals.
On the bright side I would say that a gluten-free diet and Heather Van Vorous’s diet are likely to help a good number of people, so I would try both and see what happens. Personally I find gluten-free to be the most helpful but I do hear from people who find Heather’s approach useful too.
I don’t think the difference is related to IBS-D vs IBS-C, I think it’s just that a reflection of the fact that there are lots of theories about IBS but not much agreement on what is the best treatment method – although most people do now agree that soluble fiber is better than insoluble, so that supports Heather’s approach.
23 Chris // Oct 1, 2009 at 6:34 pm
Hi all
Firstly, a great site, Sophie. Just wanted to know if Rifaximin is available in Australia (as per Dr Mark Pimentel’s book)?
Thanks for your help.
Chris
24 Sophie Lee // Oct 2, 2009 at 1:57 pm
Hi Chris – glad you like the site! I’m afraid I’m not sure if Rifaximin is available in Australia – the Wikipedia entry for it seems to suggest it is used in the USA and Europe and doesn’t mention Australia, so that may mean it isn’t available over there, but I don’t really know anything beyond that, sorry.
25 Chris // Oct 2, 2009 at 4:13 pm
Thanks, Sophie, for your Net digging. Yes, it does seem that it may not be readily available in this country. If any Australians see this and know either way, could you please leave a post. Thank you!
26 Phil // Mar 1, 2010 at 9:11 pm
My daughter started with ? ibs at 12yrs. She had abdo pain,bloating,nausea,belching,altered bowel function and loss of appetite for 6mths. After many negative tests the doctors px anti depressant and psychotherapy to which we declined the kind offer. I put her on a wheat/dairy free diet didn’t kill the pain on its own but reduced the other symptoms but peppermint capsules killed the pain after 2-3wks. So basically after many trials now we now know wheat n dairy r her triggers and stress is definitly not a trigger as she never gets the pain when she’s under pressure. She only gets it when she has wheat or dairy. Now we do stick to the diet but sometimes we slip up if we haven’t read the label properly or if eaten out (which we do rarely) and been contaminated that way. But what is frustrating is that if she has had wheat it takes 2-3wks to go with peppermint capsules. If she has dairy it takes 1wk to go with peppermint capsules. Tried baclofen and mebeverine with no effect. So basically if she is not contaminated with wheat or dairy she doen’t suffer the pain. I must add though what seem to trigger it to begin with was a bout of gastroenreritis. Then left her with a sluggish bowel mainly constipated. This is much better now as she is more regular. So we are keen to find a quicker cure to arrest the pain because when she has it she can’t go anywhere and she is crippled. I can’t see how antidepressants can work in her case and i wouldn’t want her to be on them long term when she only gets the pain with wheat n dairy. She had the pain twice last year and she has it presently. This is an important year as it is her gcse year n we really don’t want her to suffer or miss any exams. obviously we will be much more vigilant with diet n its not that she eats wheat n dairy knowing its that its just sometimes food can be contaminated with it. So we would be very grateful for any suggestions on treatment.
27 Sophie Lee // Mar 3, 2010 at 10:21 am
Hi Phil – I’m sorry to hear about all that your daughter’s been going through. I started suffering from IBS at exactly the same age so I know what it’s like.
Have you had a look at http://www.irritable-bowel-syndrome.ws ? That’s my IBS treatment site that lists a large number of available different treatments for IBS with reviews from fellow sufferers.
Unfortunately I can’t offer any specific suggestions for treatments as I just don’t know what would work for her, but I really hope that you find something to reduce her symptoms even further. Best of luck.
28 caitlin // May 5, 2010 at 2:51 pm
i have been in constant pain for six weeks and had pain at least once a week for six before that. i’ve been to gi doc at least three times in last yr w colonoscopy and endoscopy and of course they found nothing. i guess im IBS-A casue i get the pain when im constipated but the worst it gets is when im having an “attack” or bout of diharea. the pain is so unbearable and i would rather die than go through it but it seems like there is nothing i can do to stop this from happening. i had close to three months that were pain free that i thought were due to an antidepressant i was on (that i tricked my pediatrician into giving me bc my gi would do nothing) but as of lately my gi took me off it because it didn’t seem to be really doing much. im at my last hope bc im going to see Dr. Wangen at the ibs treatment center in seattle, if he cant solve the problem then idk what ill do bc i cannot live like this any more. im also going to a hypnotist (but find i have a hard time getting into a “trance” because my stomach is always distracting me. and am thinking of doing acutpunture. i have very little faith left that anything will help me and i dont even want to wake up in the morning. has anyone done either of these two therapies and had success/failure (i want to hear both so i don’t get my hopes up and be let down.) same with the ibs treatment center. i am just at the end of my rope w this
29 Kat // Aug 12, 2010 at 10:24 pm
very enlightening – thank you. i have had ?ibs for 18 years (since i was 16) following an infection. It causes extreme pain (i would liken it to childbirth) and embarrassment. Not convinced its “all in the head” – definately some irritation/infection. What tests/meds are available in the uk?
Leave a Comment