What's going on with my digestive system

Hi Emko

Thank you for your response and advice. It all helps in one way or another. Sorry its taken so long to respond, I keep meaning to check this discussion for new replys.

I'm glad to hear that the gallbladder removal has helped you, are you still enjoying a pain free life? I have to say one of the first things my doctor did was refer me for an upper abdominal ultrasound, and that revealved nothing out of the ordinary. In fact every test I've had done has shown nothing, yet I'm still ill and experiencing pain on a daily basis. I've had numerous blood, urine and stool tests, ultrasound, colonoscopy, endoscopy, sigmoidoscopy, head MRI (still awaiting results), and the only thing found were polyps (which were removed and benign), and slight inflammation of my colon. Basically, I have now been diagnosed with IBS, Gastritis, CFS/ME, stress related disorder, anxiety, and have been referred to a Rheumatologist for suspected Fibromyalgia. I'm not sure what else the doctors can investigate, but it feels like I'll soon exhaust all possibilities, with no answers, and be this way for many years to come.

Thanks again for your info, I do appreciate it. Long may your life free of pain and illness continue.

So sorry its taken a while to get back to you, I've stopped getting alerts to my discussion and thought everything went quiet. So sorry to hear about your son's problems, I'll tell what I've learned over the past few months, hopefully something will help.

Well, I've had a proper diagnosis, IBS! And from what I've read it does seem to be that way for me. As you can see from my discussion I've had so many tests and procedures carried out on me and everything comes back clear. I still have doubts about the diagnosis, but I think thats more anxiety than anything, which doesn't help IBS at all.

Diet changes have helped me the most, although its not curing the problems as I've been having quite a bad flare up over the last few days, and the pains have me in tears too. A few things I have noticed from what you've said that won't help your son's are what they are consuming. Curry's and rich and/or spicy food is a big NO NO, as is alcohol. Smoking is bad too, and I have cut down considerably, whether or not its helping my IBS is another matter, but I do feel a lot healthier because of it, average blood pressure and heart rate have lowered a lot since cutting down on smoking and cutting out rich, spicy foods. Smoking saturates the blood with chemicals that replace the oxygen the blood normally carries. The oxygen is needed to help healing processes within the body, so obviously smoking will delay or even stop the healing process. I only eat fresh foods now, no processed or fast foods at all, only drink water, apart from the odd couple of cups of decaf coffee. I've gone lactose and gluten free and that has helped a lot. Its about finding trigger foods, mine are white bread, eggs, onions, garlic, pork (mainly chops or roasting joints, I'm ok with bacon), a lot of fruits and most vegetables seem to react badly too, and no processed foods. I'm due to see a dietician in a couple of weeks to get a FODMAP diet going. I did try myself but my knowledge is limited and it is complicated, you do need the help of a dietician to make sure the FODMAP is followed properly.

Has the doctor that dealt with your son issued any tests or procedures for your son? The doctor can't really make a diagnosis of IBS without eliminating any other possible causes, which is why endoscopies and colonoscopies are used. If you want to make sure your son's get the treatment they need, suggest to the doctor your son(s) are having red flag symptoms, I would say bleeding from back passage is a good one that will get the doctors actioning your concerns. I know its bad to lie if your son's don't experience this symptom, but its so hard to get a thorough investigation otherwise. Even if you just get an Ultrasound, it will help, at least that will tell you if all their upper abdominal organs are ok.

Other than that Valerie, I don't really know what else I can share with you that might help, but do try and request your son's change their eating and drinking habits. Think fresh wholesome foods, cut down on fats and sugars, and lay off the alcohol and cut down on smoking.

Hope that helps and as I'm aware people are still needing advice, I will update this discussion if I have any new developments.

Take care and all the best!

Sorry to hear about your problems, I can totally sympathise with you and I do hope your symptoms do not cause you too much grief.

If you check out the reply to Valerie that I wrote up this morning, it'll give you an insight into how I've been and what I've done to try and help the symptoms myself. However, I have to follow a FODMAP diet properly, with the help of a dietician, which should be starting in a couple of weeks. This will hopefully tell me what my trigger foods are, although I have found out some myself, and hopefully get me to a point where I am able to get back out to work.

We are all different, and what helps me, may not do anything for you. Its about trying to find your triggers, and the only way I did that was go on a totally bland and rigid diet, and introduce different foods each day to see if they'd react with me. Its not the ideal way, and you have to be prepared for flare ups, but it has helped discover some of my triggers, and now I can have weeks of feeling ok, instead of the IBS affecting me daily. As I said in Valerie's reply, I still get flare ups, and even though they are painful and debilitating, they aren't as strong and painful as I used to have. I am still taking Omeprazole and Mebeverine, whether they help or not I don't know, but at my next medication review I will be requesting to wean myself off Omeprazole first, as I've heard it can make some people feel groggy.

I do hope my replies can help in some way, and I wish you all the best! Anything else you'd like to know, please reply, I should start getting alerts to this discussion again.

Take care.

Nice to hear from you, and so sorry you've hit rock bottom, I can sympathise, I'm still struggling a lot to live with IBS, and it does get me really down a lot of the time. It is sort of a relief to have a diagnosis, however there is always those thoughts in the back of my mind 'have they missed something?', or 'is this really just IBS?'.

I did say in one of my replies today that I can now go weeks feeling ok. I should say that I feel ok in the sense that the pains, nausea and bloating are a lot easier to cope with than they were, but there is always, and I mean always, a feeling of nausea and illness which just keeps eating away at me everyday. I get the odd day of feeling almost 100%, but days like these are very rare for me.

I'm now hoping and praying that the dietician can help get these symptoms under control, so I can start to have a relatively normal life again. Have you, or are you seeing a dietician? Only asking as I tried the FODMAP myself, but found that I wasn't very strict with it. I need that person there to prompt and push me the right direction to make sure I do things properly, and I'm hoping it will give me the incentive to do everything by the book.

Please stay strong Ella, I know how difficult life can be dealing with the symptoms we are going through, and the fact that there is no easy cure out there makes it especially hard to face the day when you know you'll more than likely wake up feeling sick or in pain. There is always hope that it'll get easier with the right help, and that is what I am looking forward to, whether it works or not, only time will tell, but I will update this discussion with any news or developments that may be of help.

Take care and keep in touch. If you need any help or advice, just send a message, I'm always willing to try and help however I can.

I truely appreciate your response. 

I plan to do one last blowout this weekend, coffee/booze (not much) then chuck the baddies out as we are going away tomorrow, one thing i can say the wine helps sooo much! In the short term.... But long term ..

Im also going to get a comprehensive stool analysis done, to rule out paraistes, fungi yeast and senstivities. The results will take weeks as they have to go overseas but it will rule out alot!

I too was unofficially diagonsed with gluten/lactose intolerance but its the underlying inflammation that causes these, once we heal the inflammation then the senstivities go away.

I do need to ask "what do you think has helped you THE MOST" since you've had the diagnosis? Was it the cutting wheat/dairy?

I went to that gastroenterologist and he wanted to start by telling me to cut out fruit and veg!!!!  He said they aggravate IBS, not all but most and eat simple carbs? That blew my mind cause how healthy a lifestyle is that!!! 

You've said that by eating wholefoods you feel alot better so if you could share roughly what you eat ina day id be grateful. And yes once i get an official diagnosis il head to a dietician too. Ive seen a couple but the info is somewhat contradictory to one another. 

Thanks Paul x

Why not have one last blowout before you chuck all the baddies away, I hope you have a good one! 

Probably best really, cause you might not like what I'm about to say. One thing that has helped me a lot is cutting out alcohol, not only did it ease my symptoms but after a few days of cutting it out I noticed my average heart rate drop considerably, and so did my blood pressure, all good things really, I do miss the odd pint or two though. I just need to address the smoking now, which I have cut down a lot on, but just can't seem to totally let go. As I said before, smoking slows or even stops the healing processes due to the oxygen in the blood being saturated by chemicals, and the body needs oxygen to repair.

With regards to my diet, I have to say it is very basic, very plain, and not much variety, but it does keep me going. I'm too worried about trying other foods cause I don't want to experience anymore pain, I've had enough pain over the last 18 months to last me a lifetime. As far as my symptoms go, your Gastro is correct, I find that all the fruits I would normally eat aggrevate my symptoms, as do most vegetables, so I don't eat fruit now and a limited amount of vegetables. I found that wheat was a serious problem for me, if I eat white bread it causes me serious upper abdominal pain, yet brown bread seems ok, although I haven't eaten it since coming out from my colonoscopy, when I was given a ham salad sandwich in the hospital, which was made using brown bread. I've gone lactose free after eating a yoghurt and it causing me considerable pain, however not sure if it was the yoghurt or the fruit content. Also, I've cut down loads on refined sugar intake, the more sugary foods I eat the worse I am the following day, and I only drink decaf coffee too. I have stopped eating pork and eggs, as both of these react and make me bloat severely, yet I can eat back bacon. All these changes have helped to improve my symptoms generally, although I still get flare up days, but these are no where near as frequent as they used to be. I have heard that eating organic foods are good for IBS sufferers, but not sure of the validity of these claims.

A typical day starts with either a bowl of gluten free rice puffs with lacto free milk, or a pot of 'Perkier' (gluten free porridge), again made with lacto free milk. Sometimes I have a bacon roll, but it must be lean back bacon and in a gluten free roll. I use real butter, and not the spreads you can get, as a lot of these are made with sunflower oil, and I react to sunflower oil. We have changed to vegetable oil for cooking, and that has helped me a lot. I have a couple of gluten free biscuit breaks with a decaf coffee a day, to tide me over to my next meal. For lunch it is usually a chicken or beef salad roll (lettuce and tomatoes are added and the only salad type foods I can tolerate). This usually comes with some gluten free crackers and lacto free cheddar cheese, and a bag of gluten free potato snacks (not flavoured, just plain salted ones, flavoured ones mess me up). For dinner, I will have new potatoes (skin removed) chicken, beef or fish with vegetables (broccoli, green beans, carrots and parsnips are the ones I can tolerate), and I use bisto best gravy as required. I usually have a few chocolates in the evening to give that sweet, feelgood feeling, but not many, if I eat too many it aggrevates my symptoms. If I'm feeling really groggy I go on a rice diet for a couple of days, this is where my main meal is substituted with white rice, and I add a very small bit of chicken and bit of gravy, just to add a bit of taste. I find doing this eases my symptoms a lot quicker than if I kept to my usual diet. One meal that agrees with me, that I find odd, is a roast dinner. It'll only ever be beef or chicken and the vegetables I mentioned earlier. With bisto best, cooking with vegetable oil and having gluten free yorkshire puds, this meal never gives me any problems, and the one I look forward to most (pretty sad when the highlight of my week is having a roast dinner! ). My partner is going to experiment with some gluten free baking for me, I really miss my bit of cake. However, we have to look into buying sugar and egg substitutes which is proving to be very expensive. And that is the main concern I have with any of these gluten / lactose free foods, they cost so much, our weekly food shop has gone up by £15 - £20 a week because of my IBS, and as I'm still out of work, we are finding it quite a struggle financially. I have heard of doctors issuing prescriptions for free from foods, which I will be researching in more depth, any help financially needs to be looked into.

And there you have it Ella. Not sure if any of this will help you as we are all different, and what may be good for you, may not be for someone else. I've refrained from putting brand names on the foods I eat, as I don't like advertising on other sites, some moderators don't take kindly to advertising on their sites, but if you want to know what brands I use, send me a private message and I can give you the info you need. However, there isn't a huge selection of gluten free foods available in supermarkets, so you shouldn't have a problem working out which I use. Oh, and by the way, I don't buy supermarket brands of these foods, a lot have eggs in them, which I have to avoid.

Take care and hope you have a good weekend.

Nice to hear from you, and sorry to hear of your suffering, at least the omeprazole is helping a bit, as it does for me. I have posted comments on here recently, but usually replies to other peoples comments, but have a good look through, you might find something of interest to you.

Well, I had my appointment with the dietician and I have to follow a strict low FODMAP diet again, as doing it on my own wasn't allowing me to be so strict, or so the dietician thought. I personally think I did rather well, and I've been eating low FODMAP foods before I saw her, and even though all my symptoms are not as intense as they were, I still wake up everyday feeling some pain or nausea. I know it takes time for the FODMAP to relieve the symptoms of IBS, which is what I've been diagnosed with, but something is telling me that this isn't going to help much. I can't explain why, you just know your own body, and you know if things are working or not. I will persevere with it and give it the time it needs, we'll see what happens in the near future.

I'm still taking omeprazole, mainly for acid reflux which I do suffer from, and mebeverine for bowel cramps. For me it's my bowels that cause me the most problems, my stomach doesn't cause me as many problems as it used too, although I still bloat and need to burp frequently. I seem to produce a lot of gas down there and when I'm really bloated in my bowels, it causes the worst nausea and pain, and I can definitely feel the referred pain from my bowels in my chest. When my stomach hurts, its just the stomach, but when its my bowels, then thats when I feel the all over pains and quite severe nausea.

Not really much else to report, my quality of life is still pretty poor, and I do try to keep my spirits up, but its hard when all I'm doing is making sure I do all I can so I don't get anymore severe flare ups. If I'm being totally honest, I don't know what I'm doing anymore, from one day to the next. It just feels like I'm trying to survive as best as I can, I'd love to have my old life back!!!

If you want to know anything specific, just let me know and I'll help in anyway I can, but there aren't really any new developments I can share with you that might be of any use. Just trying to face up to the fact that these problems are going to be with me for some time yet.

Take care and all the best!

I do hope that you can get control over your symptoms, sooner rather than later. Take care and try to stay strong!