I don't know what else to do... I'm getting no... - IBS Network

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I don't know what else to do... I'm getting no help from the doctors.

ccprincess profile image
21 Replies

Hi everyone. I've suspected that I've had IBS for a very long time now. a couple of years ago I went through private healthcare and had blood tests and an endoscopy done, and they couldnt find the cause for my stomach pains so they said it is most probably IBS. they suggested that I see a dietitian but I didn't go to this as it wasn't as bad at this age. For the past year however, my IBS symptoms have become extreme. I suspect that antibiotics I was taking caused this; I have stopped these now. Anyway, I have been seeing my gp about this and the doctor said to me that she suspected that it is IBS but she must do blood tests to confirm this for me; in order to rule out other conditions. I did these blood tests; and as suspected they came back normal; hence indicating that I most likely have IBS. Unfortunately, this doctor has now left for maternity leave, so I had to go and see different doctor regarding my blood test results. This doctor told me that it is IBS and prescribed me wth mebeverine tablets. He told me to also FODMAP diet. I accepted and asked if I could be referred to a gastroenterologist because I was urgent to find the right treatment for me as it has been so severe. He initially refused and said that he will refer me once I've tried out these tablets etc. I asked him again and told him that I have had ongoing issues and really would just like it to all be sorted. Thankfully he referred me. I then spoke to my university regarding this due to the fact that I have exams in 3 weeks and want them to be aware of my condition incase I have to leave to go to the toilet for a long period of time (embarrassing!). They agreed to help me, they were so kind and said to me that I can get extra time incase something like this does happen (which happens almost everyday for me). Before they could officially give this to me though, they said to me that ill need to get a letter of diagnosis from my doctor surgery. I didn't know that this would be a problem at all, since they said that this was what I had and even gave me tablets to help? I waited about a week and called the doctors to find out if it had been done yet. She stated that they declined my request and say that I have not been diagnosed. I was so confused? She seemed very confused to and made a telephone appointment for me to speak to a doctor regarding why I have been refused this letter. Today I had that call. I waited another week for this (bearing in mind I am limited for time considering my exams are so soon). I spoke to him on the phone and he was SO rude to me. he wouldn't let me speak and kept repeating " you havnt been diagnosed" I kept repeating " how can I be diagnosed???". He wouldn't give me an answer and said that the gastroenterologist will do this ( I havnt received an appointment for this still however and don't know how long it will be). I was shocked that he wasn't helping at all! I was the one who asked to see a gastroenterologist to TREAT it not DIAGNOSE it so I am really truly shocked. I then tried to explain to him how I saw the first doctor who told me that the blood test would diagnose it and that I couldnt understand why I was being told different things by the doctors. He proceeded to say to me that he doesn't have the time and that he will not diagnose me. He then hung up the phone on me. Im speechless. I cannot believe that my doctor is treating IBS as if it is a joke. As many of you may know, it is such a serious condition when it has such an affect on our daily lives. and for someone to not want to help you, I just feel like theres nothing more I can do. I've been in the same cycle for so long and everyone is refusing to diagnose me. I understand It is tricky to diagnose but this is just really upsetting and I feel so stuck. I don't know what to do next? can someone please advise me on what to do. I feel so fed up. has anyone else had their doctors not taking this seriously either?

Thanks for listening haha!! Rant over. :(

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21 Replies

Have you ever tried taking some probiotics? Also, can you tell me what your diet is on a typical day. I'm only asking because, I could tell you what I've been doing that has worked for me.

ccprincess profile image
ccprincess in reply to

I have tried probiotics called acidophilus but unfortunately this didn’t help me. The mebeverine does seem to be helping with the diarehhea though. My diet is very mixed. My breakfast is usually smoked salmon eggs and sourdough bread. My lunch is different because I’m st university ( normally quite greasy foods to be honest) and my dinners are generally healthy . I’ve cut out chocolate as I’ve noticed this caused flare ups as well as crisps. Xx

in reply to ccprincess

Well It took a long time to figure out what worked for me but here is what I've found to work. 1. Start drinking water throughout the day and cut out soda's. I have a soda every once in awhile because I still enjoy them. 2. Find a good brand of probiotics and take them for two weeks before you give up on them. 3. Instead of the typical breakfast you're eating, try drinking protein shake, smoothie, or even better Ensure with protein is what I use. I drink at least 3 Ensure's throughout my day between meals. 4. Low sugar Gatorade is great if you feel dehydrated but if you buy a water bottle take it with you wherever you go. 5. Try taking Benefiber once a day to help keep you regular. 6. Work on changing your diet to less greasy foods. Baked chicken breast's are just one example and chicken digests much easier than beef. I will try to come up with a better list of foods to eat that work for me. I just don't have time right at the moment to do this. But when I get home tonight I'll start working on a list for you. I hope that this was somewhat helpful. Good luck.

ccprincess profile image
ccprincess in reply to

Thank you so much I really appreciate you doing that for me. Yes I have cut out sodas also. They really affect me. I only have them a few times a year! I’m not too bothered about it. I have also cut out all red meat but this wasn’t for Ibs so don’t know if this has helped. I will definitely try the probiotics again and Gatorade too.i have noticed hat greasy foods seem to affect me the most (for example after a takeaway like McDonald’s especially). My mum cooks a variety of meals so it would be great if I could suggest some that would be good for me. We have lentils once a week (Not sure if this is any good) and I have a lot of chicken as I don’t eat red meat xx

in reply to ccprincess

No worries. I'ts nice to chat with someone else like myself. Tty later. :)

Marygulliford profile image
Marygulliford in reply to ccprincess

Hi. I too suffer from ibs. Probiotics are worth taking and imodium in mornings. I take two. Doctors don't have answers for IBS I'm afraid! Wishing you luck and remember you are not alone, but you have to find what suits you best. Stuff change of clothes in your bag, and wet wipes, for emergencies. That helps calm you as well.

clouisa profile image
clouisa

Hi it is disgusting how you have been treated. Take action and report to the person that runs the doctors surgery or Pals may be helpful. Im finding my doctors very unhelpful too at the moment...its happened before and i paid for a private consultation...sorted in less than an hour!...i would and will pay again and thats what im planning to do..good luck x

ccprincess profile image
ccprincess in reply to clouisa

It’s awful isn’t it. Can’t beleive it. I am definitely going to report him. I think I’m going to go through private healthcare once again too and tell them the situation. I’m sure they will help much more than the gp has.

Good luck to you too! Xx

clouisa profile image
clouisa in reply to ccprincess

a couple of years ago i had a car accident i walked away fine, 48 hours later i had numbness and tingling in my head...my doctor after two weeks of repeated visits said it was nothing to do with my accident and i said well its too coincidental to not be as iv never had it before...he was so off with me..i went private and i had post concussion syndrome and it had everything to do with the accident...he gave me some meds and said 18 months till its completely gone and he was spot on...cost 250 but was well worth it...my doctor didnt even bother to do the referral i asked for for the private consultant...useless.

lucycornwall profile image
lucycornwall

Hi, I feel so sorry for you, I have experienced similar issues, major anxiety about exams and having to sit near doors etc. I don’t know what your symptoms are but I get very upset stomachs after eating food of any description, basically it’s not what I’ve eaten, it’s just because I’ve eaten, then I suddenly and very quickly need to be near a toilet. I’ve had it for about 10 years now and I’ve just turned 28, I’m still learning how to manage flare ups because my stomach reacts so badly to stress. After trying all the medications, the only thing that works at all for me is lomperamide (Imodium). I take either two or four before bed to settle my stomach the night before I need a good day and touch wood these enable me to just about get through the day. I don’t eat much at work and I’m always terrified of going anywhere but honesty Imodium has been a lifesaver, without it I would be a complete wreck. That might not be too helpful but that’s the one thing that helps me. I feel your troubles tho, being young and trying to find your place in the world whilst dealing with something that can be so debilitating yet misunderstood is so difficult. I hope you get the help you need x

Maureen1958 profile image
Maureen1958

Hi, if I was you, I would go straight back to the university people you spoke to and tell them what your doctor said. I'm sure they don't need a formal diagnosis and they could do it unofficially. It's certainly worth a try anyhow. Maureen.

Eastbourne11 profile image
Eastbourne11

Hi do try the FODMAP diet. BUT please read the book first. Basically it is eliminating sugars. You can eat most things, although pasta can be eaten because there is little sugar in it , you must not eat a lot - same with pulses - a little. The book explains everything. I have been on it 15 months now and fingers crossed it has saved my life. Book is probably available from the library :- title The Low FODMAP diet by Dr Sue Shepherd and Dr Peter Gibson. I do hope this helps.

RoseyTB profile image
RoseyTB

Hello ccprincess, read your little rant and felt that I had to answer you. I am really sorry to hear that you have been having a hard time with the doctors. IBS is really hard to get diagnosed as it isn't really classed as an illness, so few doctors will give you a definite answer. Like you I had been having problems with my stomach for donkey's years, and all they kept saying, was take more fibre. So I did as they said, but to no avail. Made no difference. to cut a long story short, I eventually was diagnosed with it, and told that I had to have a plain diet. Chicken, no spices or fatty foods, just plain food. It kind of worked, then I came across this really brilliant book, "Irritable Bowel Solutions" by Professor John Hunter. Best thing I ever read, there are several different types of IBS, and if you answer the little questionnaire as honestly as possible in the book, you will know what type of IBS you have, and you can then follow his diet suggestion. Mine turned out to be that I cannot digest fibre very well, so it builds up in my stomach, feels like I am poisoning my body at times. I found it invaluable, to actually have some-one who understood the problems we sufferers go through. I still get flare ups, and I have to make sure that my diet doesn't have too many high fibre foods together.

Also stress is a big benefactor, and as you say that you are having exams, this will not help your stomach. It will take you some time before your stomach will settle down, but believe me, once you know some of the causes you will be able to get on with your life so much better.

I do hope this helps you and you feel so much better soon. Take care of yourself. x

Stuart24 profile image
Stuart24

Hello, after 27 years of suffering with IBS-D I have found that the long term solution that actually works is all about vitamins and fasting and both are equally important. You are effectively the manager of a food processing factory, I know that is obvious, but I have found that IBS is not about medicines, but about changing the way you run the factory.

This is based on some excellent publications, and also just observing how healthy people live. First, go to the doctors and get yourself checked for intestinal infections, and whatever other tests they want to do, you can be a carrier of some bugs and only suffer occasional flare-ups. But, if you are all clear then the first thing to sort out is your vitamins and the timing of your eating (fasting periods). An incident of food poisoning or infection can start you on a cycle that you need to make a really concerted effort to break out of. IBS causes vitamin deficiencies which are very difficult to overcome in most people’s diets, especially because you are probably eating selectively to manage your symptoms. Your vitamin levels affect the health of your guts, and the health of your guts affects your vitamin absorption, so it is a vicious circle that you have to break. Get some really good, expensive, multi-vitamins (ideally constituted for your age) and take them without fail every day before your breakfast. Do not get the ones with high calcium and magnesium initially as certainly in large doses these minerals can mess you up as they consume your stomach acid, and you should get enough of these minerals from your diet. If you are on low FODMAPs, go for all lactose free dairy products to boost your calcium. At the same time, sort out your fasting periods straight away. Your small intestine should be practically sterile, and your stomach acid along with bowel cleaning during fasting (called MMC) will usually do this. You need to fast for this to be effective, and by that I mean, ABSOLUTELY NO eating in between meals, only water, or tea with saccharin. Imagine that you never washed your dinner plates and just kept putting food on them all the time!, they would be filthy. You need to give your small intestine plenty of time free of food for cleaning and maintaining the factory. God didn't design us to have cupboards full of rich foods permanently available day and night. Your stomach will sort itself out when you have got control of your small intestine (although if you've got gastritis you'll need to finish a course of omeprazole first), and then your large intestine will improve later as nutrients are more efficiently absorbed from your small intestine. Eat a good breakfast at say 7am (porridge with 50% lactose free milk) or what suits you and then a good lunch at 12 o'clock - absolutely no food in between. After lunch, no food again for at least 5 hours, and eat well again for your evening meal because it has got to get you through the night. No supper or snacks, no food or milk at all until breakfast the next day. In general, do not eat fried or roasted starches, i.e. crisps, chips, roast veg or fried rice. The high temperature that gives the lovely crispy bits, makes complex polymers that are very difficult to digest, they feed the bacteria and make you ill. Starches should only be boiled, and this is enough. Red meats take a long time to digest, only have them once a day, and just a light salad to go with them, not a load of starchy foods, as they have conflicting digest times. You will feel hunger in the fasting periods, but you must not respond to it - only with water or no-sugar drinks. Importantly, when you are feeling better, do not resort to your old ways, you are still recovering, and you need to make a life-style change to have this level of discipline in your eating and continue with it. Start doing some exercise if you don’t already, as this will really help with your gut motility. Your intestines take time to fully recover, it takes a few weeks at least, and you need to persevere. You then need to maintain a healthy and consistent way of eating and always keep the vitamins topped up all the time to prevent you from relapsing. There is a lot of support for L-glutamine to help with nutrition specifically for your intestinal lining, this means buying 500g of the bodybuilder powder type and having a couple of tea-spoons of this a day, one before breakfast and one just before you go to bed, and you can have this in a light cordial drink. A lot of this was taken from this GENIUS paper below, but it does fit exactly with what I have experienced, and for the first time I really feel in control of something that has been a burden for years, but is not longer. Good luck.

Treatment and Management of SIBO — Taking a Dietary Approach Can Control Intestinal Fermentation and Inflammation

By Aglaée Jacob, MS, RD

Today’s Dietitian

December 2012, Vol. 14 No. 12 P. 16

I'm so sorry I haven't gotten back to you yet this past week we had a loss in our family. I was busy with the funeral and with family that flew in to be here. I will get you a list as promised. I just didn't want you to think that I had forgot about you. How are you doing so far?

ccprincess profile image
ccprincess in reply to

That’s not a worry at all. So sorry to hear about your loss. I havnt had a good week unfortunately. I have tried out a new diet where I have cut out crisps chocolates sweets and fried foods. Unfortunately something I’m eating must still be affecting me. :(

Have you ever been tested for Crohn's disease???

ccprincess profile image
ccprincess in reply to

No I havnt been. I’m waiting to be referred still to the gasto where they’ll likely do more tests. I don’t think it is Crohns because I’m affected straight after food xx

Well I don't know if u know this but alot of foods can cause Crohn's to flare up a d cause bloating, diarrhea, constipation and general terrible feeling in your gut. I'm not any that you have Crohn's but it's an easy test to get done. You just need to be persistent and ask to have it checked out. Also, if you don't mind me asking. Do you have something that you can take for ANXIETY? STOMACH ISSUE'S CAN TRIGGER A PERSON'S ANXIETY SO BADLY THAT MY DOCTOR HAS ME ON AN ANTI-ANXIETY MEDICATION.

ccprincess profile image
ccprincess in reply to

Oh really. Will ask to get checked for that just Incase. I haven’t taken any tablets for anxiety even though my doctor did prescribe them just because I am so scared to mess up my stomach even more after the antibiotics. I don’t want anything to ruin my stomach lining. The only medication I’m on is mebeverine at the moment. Has ur anxiety mediation helped? I do get really bad anxiety when I’m out and about. I tend to stay at home because I’m too scared to go out.

I meant to say that "I'm not saying that you have Crohn's "....

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