Irritable bowel syndrome support

[Kima]

In addition, the guidelines state that:

1.1.2.2 The following tests are not necessary to confirm diagnosis in people who meet the IBS diagnostic criteria:
[...]
colonoscopy; barium enema
[...]

In short, your GP's claims are not supported by the NHS guideline.

[Duellist]

Oh, my GP was against any idea of a colonoscopy; it was the surgeon who wanted to do it and my GP told me it was very unpleasant and that she didn't think it was necessary. On the other hand, this same surgeon couldn't tell my stomach from my gall bladder (opposite sides of the body, among other things) and two GPs commented on how scary that mistake was from someone licensed to cut people open.

So, I suppose I should go and bother them until they send me to a dietician; conveniently, there are half a dozen GPs there and so I can just keep seeing them until one of them refers me.

[Kima]

I am still actively recording everything I eat and the symptoms that follow. The least I can say is that it's often been confusing, especially when comparing my findings to lists of trigger foods on the internet. I am now looking into the low FODMAP diet and it's definitely caught my attention. I have a big problem with fruits and vegetables and I saw that the four winter veggies I have found to be safe for me (carrots, parsnips, sweet potatoes, and squash) are all low in FODMAPs. Also, it could explain a mild intolerance to dairy and wheat that does not prevent me from enjoying some of these products (i.e. I can take a little yogurt but not too much milk, oats and spelt are fine, even wheat bread in limited quantities but not pasta, etc.). I encourage anyone who is interested to look at these ressources:
http://shepherdworks.com.au/disease-inf ... odmap-diet
http://ibsdietplan.org/patsy-catsos/

I am seeing my doctor on Monday and will try to persuade him to refer me to a dietitian, or at least have a good look at my options. He tends to say things like "you have to live with it" and "stress can be a factor" which is all good but completely unhelpful.

[Duellist]

That FODMAP diet looks worth a try. If the results really are as quick as a day or two, at least it will be fairly easy to confirm. If it works out, it definitely sounds like something to discuss with a dietician, just to make sure I don't end up turning orange or getting scurvy. If it doesn't work, at least it's one more answer off the list...

[Kima]

I saw my doctor today and we talked about my symptoms before having the usual discussion about food, stress and exercise. He prescribed a clay-based remedy that I can try over the next few weeks and something stronger for heartburn if needed. When I mentioned FODMAPs and the possibility of seeing a dietitian he was non-commital, saying instead that it's best to rely on my own experience. He also agreed to do refer me for bloodwork, including a test for gluten intolerance. He seems reluctant to send me to a gastroenterologist, even though he knows someone I could see.

Two odd pieces of information stand out:
-He reminded me that I came to see him when I was 12 complaining of pain following each meal. I remember suffering of digestive issues when I was a teenager but had no idea it had started that early.
-He said that if I have children the pattern could change for the better. He went on about his wife who got much better after her pregnancies and is experiencing a resurgence of symptoms now that she's reaching menopause. I've never heard of such a thing... and I can't believe my GP is prescribing babies!!!

[Kima]

I'm trying hard not to feel discouraged after yet another difficult night. I woke up in pain at 3am, ran to the loo at 4.30, and haven't slept since. Now I'm preparing for a long Saturday of professional training. All of this trial and error is exhausting. Sometimes it looks like there is no end to it

[truthseeker]

Been there Kima. It stinks when the pain is enough to wake you. And exhausting. Chin up, it'll get better. Work right now is very stressful for me. It is the one trigger I seem to have little control over but I'm trying to work on my meditation. It's keeping me somewhat grounded so far. I hope there'll be changes soon.

[NovaStar]

I'm trying hard not to feel discouraged after yet another difficult night. I woke up in pain at 3am, ran to the loo at 4.30, and haven't slept since. Now I'm preparing for a long Saturday of professional training. All of this trial and error is exhausting. Sometimes it looks like there is no end to it

Hugs Kima.
Drink loads of water and make sure you don't get dehydrated as well.

I've finally had my hospital appointment confirmed - it's not until 8 March!!

[Kima]

Thank you for your support. It's been tough and I've just had another bad night.

@truthseeker: I would like to get my meditation back on track since I find it extremely helpful when I'm in this kind of situation. That is one thing I can hold on to.

@NovaStar: Don't worry, I do drink a lot of water, in fact it always impresses people around me. I actually drank over one liter last night
Good that you have an appointment, although it may seem far away. Have patience, and I hope it will be helpful to you.

[springrays]

Hello there
Would you consider acupuncture? Could you request it through your doctor? Would they consider it?
Were all so individual with our symtoms its been really good seeing how we all deal with it the best we can,

I was diagnosed 13 years ago and at the time was provided with antispasmodics and up to 5 antidiarehals a day (sorry my spelling is suspect!! ) yep they should have bunged up an elephant....but not me!! When my system finally gave up and i went through my pain barrier and a 10 day hospital stint i was finally taken seriously.

Things which helped me slowly regain control over the situation-
When the pain and loo visits where bad and regular- Hotwater bottle, lots of water to drink, a food source which will bung you up..for myself it was white rice as any fibrous foods would automatically be rejected, avoid the foods you know you cant eat ,for me anything wholemeal, rye, corn based, lettuce, coffee, citrus, alchohol, anything steamed or slow cooked (I think the process of cooking makes a big difference), too much sugar or fat......dang, i still drool over the thought of crunchy nut cornflakes

The doctors took me off the medication i had been on and replaced it betablockers aka happy pills and my workmates called them for around 6 months and provided me with relaxation and cognative therapy...personnally i have to say this really helped me chill out and control the situation better. I wasnt as fearful of leaving the house and when i did i always had loo roll & baby wipes with me and knew where all the loos i could visit where in the area this really helped me feel reasured for if the pain and mad dash feeling arose.

Overall though the best thing for me was acupuncture, i was able to get it half price through my health plan so took the plunge. I had sessions weekly for a period of three months....then once every two weeks for around a year. It doesnt work for everyone but for myself the results were fantastic.

These days i can eat most of the things i couldn't, with the exception of corn or rye, just in moderation and my system has really setteled down...just with the odd blip.

Make sure your bowls have time to heal between the blips and your system may slowly heal as mine has for now & yep and i totally agree the lemon and ginger tea is excellent and really soothing for the system.

The main thing is though dont give up and try not to let it control your life....i know it can be easier said than done

BIG HUGS and a hotwater bottle,

[Silverleaf_Willow]

Hello everybody,

I've been reading through all of the postings here with great interest and decided to share my experiences. Two years years I was told that I possibly has IBS. I had the symptoms of Crohn's disease and/or ulcerative colitis but the doctors ( I was seeing my GP, a surgeon,and a Gastro-Intestinal Specialist) could not pinpoint exactly what was wrong with me. A random spree of testing wasn't a lot of help so I went back to my job and my life to muddle through as best I could. Don't get me wrong, I did appreciate everything the doctors did for me, but in the long run it came down to the old "I just don't know" (quoting my GP here). I know that sounds familiar to some of you.
I asked him if it was diet or stress induced, and his answer was 'possibly'. Yah, thanks Doc.

I went home and started making adjustments to my diet. I eliminated gluten and then dairy foods. I tried to remember to include stress-relieving meditations and such into my daily routine, but they got forgotten somewhere along the way. I was doing not so bad, maintaining mostly and flare-ups were small enough not to interfere with my job.

Then several months ago I made a big mistake. I went to the pub for an end-of-of-the-year drink with my co-workers (work is seasonal and I won't see most of them until we return to work in the spring).
As I went down the list of things I could possibly drink (no wheat, rye, barley, milk, cream, carbonation, etc) and finally decided on scotch (well distilled) and chased that with black coffee. I should have limited myself to one. There are easier ways to really hurt yourself.

That one night of alcohol and caffeine kick-started the absolute worst and biggest flare-up of symptoms that I've ever had. I'm still dealing with it (thank the gods I'm not working right now). At this point I've seen both my GP and my surgeon and I'm on a waiting list to see the specialist again.
Alcohol and caffeine are now on my "I can live without it list". Although I would like to get stable enough to enjoy a half glass of mead during a ritual

They put me on corticosteroids to get my symptoms under control. I dislike taking drugs. But they seem to working and I guess I'm okay with short term use. I still believe that long term effects are a result of diet and stress.

I've read over a lot of the good food/bad food lists put out by various IBS groups and made some adjustments to my diet based on them. Some foods I eliminated right away as they could affect me within an hour of eating them. I like the fodmap diet sheet (thanks for posting the link. Kima), most of the bad foods are ones that I've already eliminated. Except onions and leeks (hmmm, I eat onions a lot, they'll be my next to go for a couple weeks).

I'm looking for a local dietician, eliminating too many foods from one's diet could cause deficiencies and I have enough to deal with right now.

One thing that I'm finding really helpful is daily healing meditation. In the mornings before I rise or in the afternoon if I'm having an uncomfortable time, I like to listen to the healing meditations on Phillip Carr-Gomm's "Sacred Nature" CD. http://itunes.apple.com/gb/artist/phili ... d377293144
Clothed with Flowers, and The Healing Island of Moy Mell. They help me a lot.

It's difficult to find any specific help as symptoms and treatments are so subjective to each person. I think it helps to share what we know in a forum such as this, as what one person has experienced can be just the thing that makes all the difference to another. Thank you to everyone who has posted here.

[Silverleaf_Willow]

Oh, my GP was against any idea of a colonoscopy; it was the surgeon who wanted to do it and my GP told me it was very unpleasant and that she didn't think it was necessary. .

I did want to comment on the scope tests for anyone facing them. I've had both the flexible sigmoidoscopy and a colonoscopy done. They are not fun, but they are not a bad as you might think.
They are also usually only done if the surgeon is looking for something other than IBS.

**ICKYNESS WARNING for medical details**

I had the sigmoidoscopy done first (I've actually been through it twice now). I was awake for the procedure and was able to watch the results on the same screen that the surgeon and nurse were looking at so we could discuss what we were seeing. It was an educational experience, and for anyone who just said "yuck", the inside of your sigmoid colon looks like the inside of your cheek, a pinkish membrane over muscle. ( You spend the day before the procedure eating gelatine and drinking water and fruit juice and taking an industrial strength laxative so your insides are clear of fecal matter).
During the sigmoidoscopy, the surgeon looks for signs of deterioration, polyps, diseased tissue etc and can (through the scope) take pictures and tissues samples from suspect areas. It's a very interesting procedure, but somewhat painful as to get a 'good look' the sigmoid is blown up with air so you suffer through some serious gas pains. (The air gets vacuumed out as the scope is withdrawn).

The colonoscopy was done by the GI specialist and I was under anesthesia, so although the procedure is a higher risk than the sigmoidoscopy, you don't feel the pain of having yourself 'blown up' like a balloon.
In my case, although they did not say so, I suspect they were looking for polyps and signs of cancer as I had been passing a fair amount of blood. The tests found nothing of importance and my status remains as suffering from IBS.

**icky stuff done**

[NovaStar]

Thank you for your frank post Silverleaf - I certainly would rather know what I'm likely up against, instead of sugar coating or hiding it - and at the end of the day, if it can rule out the likes of cancer etc it's a much better option!

[Susanne]

Good morning!
Just a word on colonoscopies.... I am a nurse & part of what I do it sedation & patient support during colonoscopy procedures. In the US there are a few choices for patients. You can be totally out for it with an anesthesia provider present, conscious sedation with a trained RN present or with no meds at all.
The conscious sedation is what most people choose and even though you are not totally asleep & can interact with the MD & RN most people won't remember the procedure due to the amnestic effects of one of the meds.
I had my colonoscopy without meds. While it's not exactly comfortable it's a great way check out a view of yourself that you seldom see!
I recommend a colonoscopy to anyone with bowel troubles or over the magic age of 50. It can help direct a course of treatment in some cases and I have seen enough instances of lives saved by this simple diagnostic procedure to convince me!
Sue

[Kima]

It's great to see so much info on possible treatments and personal experiences! I'm so glad this thread is working well and that so many of us find it helpful. To those who have been reading the posts without contributing: do not hesitate if you want to join the discussion. By now quite a few of us have shared potentially embarrassing details, but it feels good to have a place to discuss such things freely and receive encouragement. Thanks everyone!

Hello there
Would you consider acupuncture? Could you request it through your doctor? Would they consider it?

I would consider it but I'm in the midst of a little financial disaster (hopefully it will be short-lived). You should have seen the face of my GP when I mentioned the possibility of trying hypnotherapy... No, he would not recommend me for that.

One thing that I'm finding really helpful is daily healing meditation. In the mornings before I rise or in the afternoon if I'm having an uncomfortable time, I like to listen to the healing meditations on Phillip Carr-Gomm's "Sacred Nature" CD. http://itunes.apple.com/gb/artist/phili ... d377293144
Clothed with Flowers, and The Healing Island of Moy Mell. They help me a lot.

I listen to the same two tracks and like them very much, especially Clothed with Flowers (although I find the name completely cheesy). The other two on the album I find very irritating - they do NOT help me sleep. But the two meditations you mention are very soothing and healing. I listen to them perhaps once or twice a week: when I cannot sleep at night, when I'm particularly anxious, or when I need to lie down but find myself restless.

[Kima]

I've been on the low-FODMAP diet for just over a week (before that i was still having milk and yogurt) and I already feel better. I may well be among the 3 in 4 people who benefit from it. Unfortunately, since I am going to a conference abroad, then a retreat, and later a week-end in France, I cannot do the proper elimination diet now, but I will make sure that I put time aside for it at the end of March and all of April (no restaurant!) In the meantime I can keep FODMAPs low and experiment a little.

It's been tough but so far it's well worth it. I have read Patsy Catsos's IBS Free At Last ( http://www.ibsfree.net/ ) which is a good introduction but the most useful step was to order the low FODMAP diet booklet directly from Monash University in Australia ( http://www.med.monash.edu.au/ehcs/docs/ ... m-2010.pdf ). Finally, I have updated info from the very source of research! I'm glad I ordered it so I can find my way through the contradictory info on the web. Shipping is expensive for Europeans, so if anyone following the diet has a specific question about the contents of the booklet, feel free to PM me.

Apart from that, my blood test results should be available on Wednesday but I don't expect any big discovery - I think my GP is doing it mainly to say "See, nothing else is wrong, I've done all I can, now stop bothering me" He won't refer me to a gastroenterologist or a dietitian, so if I stay on the low FODMAP diet I'll have to make sure I don't get scurvy I really wish I could have hydrogen/methane breath tests for lactose, fructose and polyols malabsorbtion. Instead I am forced to do the complete elimination diet and challenge each of these groups one after the other.

My mum also gave me some Acorus Calamus root to make tea. Who does she think she is, an Ovate?!! It's a little bitter but it feels nice and could help with many minor ailments I have.

[Duellist]

I have spoken to a few people who said the low-FODMAP diet worked for them and how it managed to be both fast and dramatic, good enough to notice the difference a couple of days later. After a week, I didn't get any better and so I stopped. I told myself I would not get my hopes up, but I really hoped this would be the one. On the other hand, part of me was really starting to miss cakes and bread last week; I almost felt relieved when it didn't help and I could eat the (frozen) lemon-meringue pie my wife had bought before I started.

I suppose, statistically-speaking, there is a bright side; my failure means a way out of this for three other people.

[Kima]

I'm so sorry to hear that the diet didn't work for you. It is recommended to wait at least two weeks to see if there is a positive outcome, but it's true that many people feel a difference after just a few days. I think it is working for me because it has diminished my symptoms, although I certainly cannot say I am IBS free at this point.

It is hard to give up so many foods, but I am starting to find out which alternatives I can live with (rice milk = yuck / buckwheat or spelt bread = yummy) and how I can plan my meals around my tastes and not just the diet. This being said, my grocery bill is going through the roof. I'm broke.

[Al Hakim]

You should try papaya kernels, ginger or black cumin. I would also suggest omitting milk products (b/o its contents of lactose). If it is not working: A test on gluten intolerance should be carried out. Furthermore, the daily nutrition should be rich of fibers (i.e. to reduce white bread and muffins)

[Kima]

The gluten test came out negative, which wasn't much of a surprise. I would like to be tested for lactose and fructose intolerance but my GP has definitely lost interest. I'm getting used to the low FODMAP diet and my IBS still has its ups and lows. Has anyone tried calcium or magnesium supplements?