Newbie: Hey everyone, I just joined in the hope... - IBS Network

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nickyw profile image
16 Replies

Hey everyone, I just joined in the hope of getting some support from fellow IBS sufferers. My names Nicky (I am a male) and I live in Nottingham.

I've suffered from IBS for years and always had the loose stools. I have had various tests done but everything comes back normal. I think there are lots of other tests that could be done but my doctors don't seem interested in doing them.

I have been seeing a dietician who suggested I go gluten free which has helped a bit, but I am currently going through another bad bout of the poops. I sent a letter to my dietician asking for another appointment but she has ignored me.

I'm pretty much at the end of my tether and would go and see a private doctor if I could afford it because I have lost my faith in NHS doctors.

I guess I'd just like to meet ppl in the same boat as me and maybe I'll learn more from you guys than from my doctors.

Thanks for reading!

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nickyw profile image
nickyw
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16 Replies
patientj profile image
patientj

Hi Nicky. What tests have you had done and what other tests do you think you could have any why?

Regarding your diet, did your dietician suggest the low FODMAP diet at all? One reason gluten free diets might help IBS is that they remove wheat products. Wheat contains a FODMAP called fructan which our bodies can't digest but the bacteria in our guts can, and their digestion of it and other FODMAPs can often lead to IBS symptoms. I wouldn't criticise your dietician if he or she hasn't heard of it: I'm not sure of the rules, but dieticians seem to need to go on a course before they can recommend it to their clients.

How is your health and well-being generally?

nickyw profile image
nickyw in reply to patientj

Hey thanks for the reply. My dietician is aware of the FODMAP diet and has suggested I go on it if going gluten free doesn't work. Is fructan the same as fructose? My health in general isn't great. I have an under active thyroid, acid indigestion problems and I have to have testosterone (prescribed) which I reckon messes with my liver function.

What do you suffer with if you don't mind me asking.

Thanks for taking the time to reply :)

patientj profile image
patientj in reply to nickyw

Fructans and fructose are different things. Fructose is a single sugar molecule, while fructans consist of long chains of fructose molecules. Most people can absorb fructose by itself, although it's preferable if we are consuming more glucose than fructose, but no one can digest fructans. Some people have a genetic condition which means they can't absorb fructose and they also avoid fructans.

You mentioned in another response that you thought you couldn't eat fibre because it would make you go to the toilet more. In fact, the contrary might be true. There are two types of fibre: soluble and insoluble. Eating soluble fibre can actually help both IBS-D and IBS-C. For loose stools like you've got, increasing your consumption of soluble fibre could actually absorb some of the excess water in your bowel and hold your stools together better. What you might need to be careful of is that some soluble fibre might be digested by the bacteria giving rise to additional symptoms. For instance, I think psyllium husk is a soluble fibre, but it can cause wind and bloating. Linseeds are an alternative, and are less likely to lead to bloating.

Skyrooms profile image
Skyrooms in reply to patientj

Thanks for your post. I am taking metamucill. I am doing ok today. I don't want to change overnight. But, I have heard of the problems you are speaking of. I have have IBS for 3 years now. This year I started taking metamucill because I became constipated. I am also taking a laxative, Mirilax. I take 2 teaspoons Metamucill every eve plus one capful of the mirilax. Am I putting myself in danger with Metamucill? If I don't take Mirilax, I cannot move my bowels.:( Until I stabilize more, can you give me your opinion on whether I am ok for now, taking this stuff? I sometimes get bloated. But this week, I have been ok.Tonite, no bloating at all. How safe am I?

Thanks Very Much,

Skyrooms

patientj profile image
patientj in reply to Skyrooms

If you are concerned about the safety of taking different supplements I would say speak to your pharmacist or, if they can't help, your doctor (pharmacists are a little easier to get hold of!). From what I can tell, Metamucil is simple a fibre supplement made of psyllium, but I don't know if that is the only ingredient.

Skyrooms profile image
Skyrooms in reply to patientj

But, you dont approve of psylium seeds?

Thx

patientj profile image
patientj in reply to Skyrooms

Ah - I fear I may have been misunderstood. As far as I know there's nothing wrong with them. But, for some people they can cause increased wind and bloating. It's just something to be aware of when taking supplements based on psyllium.

nickyw profile image
nickyw in reply to patientj

PS I have had 2 colonoscopys, 2 endoscopys, a lactose intolerance test and possibly a bacterial overgrowth test. I have also had a blood test for celiac disease but no biopsy.

Skyrooms profile image
Skyrooms

@nickyw...Please find another dietician. You deserve better than that.Have you had a colonoscopy? If not,please get one. You can try metsmuccil to help get you regular. Its also known as psylium seeds. Its good for IBS D AND IBS C.

THERES another website on the internet where you can call and talk to someone. They do sell their own brands of things,but I found them to be helpful to me for 3 years now. I have their tes and am presently taking their prebiotic. I dont know where I would be without them. Its called,*Help For IBS.com*. Here is their phone number:

866-640-4942. Its called Heathers Tummy Care. She has cooking videos on utube.

U can also start the Fodmap diet plan that most hospitals here in the USA FOLLOW or look it up on the internet.

GoodLuck!btw,I eat alot of soluable fiber which can be bought in your heathhfood store as a powder.IMO,soluable fiber is easier on your stomach as oppossed to insoluable fiber.

You have come to the right place. Keep an eye out for your othet replies.

I wish u well.

Sky from

US

nickyw profile image
nickyw in reply to Skyrooms

Thanks for the reply. I don't think I can be referred to a different dietician because she is based in the same hospital as my gastroenterologist. I have an appointment with her in November so I am going to demand that she investigates my condition further or at least tells my gastro doctor to do more tests.

Thanks for the link to help for IBS too. I think I have looked at it before. I can't call that number as I am in the UK :(

I am kinda reluctant to try anything like psylium cause I can't tolerate any kind of fibre. I mean if it helps with constipation it's gonna make me poop worse hehe!

What do you suffer with if you don't mind me asking.

Skyrooms profile image
Skyrooms in reply to nickyw

nickyw:please talk to your dietician about metamucill. It works for both ibsc and IBS D.

why can't you tacky any fiber?

I have IBS C and IBS D. I have to take a laxative every night so I can have a BM the next day.:(

If I don't have a BM, I have to double the dose of my laxative.:(

I have had IBS for 3 years now. i had it as a teenager, through out the years. Then an Ayurvedic Doctor helped me in my 40's get rid of it for 20 years..

Now, its back again 10X worse. Thank

Goodness I dont have that much pain right now. I have all the most uncomfortable symptoms. I wake up sick every single morning with the urge to move my bowels. Every morning is different. Sometimes I am nauseas, or in pain, or constipated. It takes me hours to feel good on any given day. If I wake up at 11am, I do not feel well till 4pm that day.

BTW, one trick I LEARNED FROM MY AYURVEDA DOCTOR WHICH IMPROVED ALL OF MY SYMPTOMS DRAMACTICALLY WAS THIS: I GAVE UP DRINKING ANYTHING COLD,INCLUDING ICECREAM. THE COLD DRINKS HURT MY STOMACH UPON CONTACT. WHEN I GO TO A RESTAURANT, I ALWAYS ASK FOR NO ICE. EVERSINCE I GAVE UP DRINKING COLD WATER, MY PAIN HAS BEEN CUT BY AT LEAST 50%. I USED TO DRINK WARM TO HOT WATER ALL DAY LONG. I THINK IBS LOVES WATER IN A GOOD WAY.

ALSO, WHY CANT YOU CALL THE USA? DOES IT COST YOU MORE MONEY? CAN YOU SKYPE THEM? I WOULD BE HAPPY TO HELP YOU FIND A WAY TO TALK WITH US FOLKS IN THE US.

FOR NOW, TRY TO STAY AWAY FROM CAFFEINED DRINKS AND STIR FRIED ANYTHING.I AM NOT A DOCTOR, BUT EATING HEALTHY AND IN MODERATION CAN HOPEFULLY HELP YOU.

PLEASE CONSIDER THE METAMUCCIL AGAIN. TELL YOUR PHARMACIST YOUR PROBLEM AND SEE WHAT THEY SAY ABOUT A SUBSTITUTE FOR METAMUCILL. THEY SENT ME HOME FROM THE HOSPITAL WITH METAMUCILL, WHEN I WAS IN FOR IBS.

GOOD LUCK AND KEEP IN TOUCH.

BEST,

SKY

USA

in reply to nickyw

The Fodmaps system was developed by the Monash University in Australia who are still doing online testing of foods. Go to their website or get the phone app it's the best and most thorough place for info on Fodmaps.

The app is fantastic and makes it very easy to understand and to follow and because it's on your phone it is with you when shopping and eating out etc.

Try going dairy free as well as gluten free first of all as those two things are often enough to make a considerable difference.

Good luck

daisie2013 profile image
daisie2013

Hi Nicky have you tried cutting out all dairy as well as gluten & wheat? I've been gluten/wheat free for decades then started being poorly again & had a lactose intolerance test at the Northern General hospital Sheffield which was positive & have been so much better since. I'm still careful with what I eat following the lowfodmap diet mostly but now it is manageable although it's not easy & it does dominate your life, do hope you get some relief soon.

mary53 profile image
mary53

Hi my husband had good results with fodmap. ..also he had a test for bile malabsorbtion. ..had to have it privately and meant drinking something a little radioactive and then seeing how long it took to go through....very quickly in his case...now takes coleostyamin. ..not sure if spelling. The combination of the two allows him to manage his condition. ..eg he used to frequently have to get off the tube on the way to work for the loo....very rarely now....Usually when he has sneaked something like a sausage roll. Hope this helps. Mary

hi

sounds like youv had all the tests. i suugest you try Normacol its a fibre natural .i take it in place of the fibre i dont have from following a Fodmap diet. it stopps me from getting D and constipated. i avoid onion, mushrooms, garlic, shrimps,prawns,unpeeled fruit n veg. Amytripline can help with d as it reduces messages from the brain t the gut when we are anxious or stressed. low dosage only so can stop with out withdrawal being a problem.fizzy drinks and strawberries too are a problem for me. iv suffered for over 20 yrs but better these days. walking good for ibs as is yoga physical stuff.

regards

geff

Skyrooms profile image
Skyrooms

I understand what you are going through. I am in the US and I have trouble with talking to doctors about IBS and diet. 2 of my doctors always tell me my problems are not food related. I just shake my head and get very confused. If I you, I would save my money for nutritionists that know a lot about IBS. Use the NHS doctors to get info. about FODMAP program. Get the tests from the doctors. Get your IBS controlled medically by doctors. i.e.: I am taking daily fiber and a laxative. But, I don't want to be on this the rest of my life. I want to stay with this online group, and experiment with alternative fibers from the health food store. And, I would like to experiment with FODMAPS. However, I need to find a nutritionist I can work with. I would pay doctors for second opinions. But, I don't trust that they understand me.They can do good colonoscopys. But, they don't have the time we need to go over all the food that is good or bad for us. I have to ask my doctor 20 times sometimes, before she will say, don't eat that food.She just says, its the IBS and I believe she believes that its stress related. I am not a doctor. This is just my opinion of how doctors work for me. I would save for a nutritionist and learn all about IBS as much as I could from educating myself. Eversince, I found this group, my mental health is much better. And, I have learned more here than from my doctor. But, please keep your doctor close by for medical questions. I usually take questions to my doctor after reading on this group.BTW, the first thing I did when I saw an ayurvedic doctor was give up drinking cold water. So, I never drink anything cold anymore. Its always room temp. Ice kills my stomach.

Sorry if I said a few things a few times. I am kind of tired.

Good Luck,

Skyrooms

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