Waiting

[Daisy2191]

So last time I posted I was really relieved that I had been referred to see a gastroenterologist. It's now been 3 months and I still haven't had an appointment through. I didnt expect to be seen straight away but without even a date to focus on It's starting to get me down. I'm still experiencing symptoms in my usual manner, bloating, cramps back pain, wind, alot of mucus in stools, going alot incresing to diarrhoea, fatigue but also now stomach discomfort on a night which Is stopping me sleeping, so nothing has improved but I have had some good days. Don't know whether to go back to my gp or not. Will it just be a waste of time? I'm getting this stabbing pain just under my ribs towards the left side which is becoming a nuisance as I struggle to get comfortable at work in an office chair with it. I feel I've told my gp all this which is why I'm referred but obviously I'm not an emergent case so understand the wait. Feeling very run down and deflated.

[Linley]

Not seeing an end to the waiting only increases the stress. Suggest you contact The Patients Association for advice. Good Luck

[auntyjean]

I would go back to GP and ask him to check it out or ring appointments and see if you are on list. My GP referred me and 3 months later had not heard so rang them and they had no knowledge of me. GP had to ring then it took another 3 months.

[Munchkinfeet in reply to auntyjean]

Similar happened to me, the initial referral letter hadn't been sent from gp because admin staff were off sick. Nobody would have known if I hadn't been persistent. My symptoms had worsened by this time so my gp emailed the consultant directly while I was there in his office

[Bellacat21]

If you’re uncertain about anything go back to your doctor .. and keep pestering until you get an answer and don’t worry .. your health and life is more important ..

[Jbean90]

I would be very interested to hear what they say when you get in. You have my exact same symptoms. I have back pain that floats from the middle of my back between my shoulder blades to my left shoulder blade and everything else you described. Do you hear or feel bubbles on your left side. When you feel bloated? I usually feel it worst after eating. Metamucil did help solidify stool somewhat. So did eating cleaner.

[Daisy2191 in reply to Jbean90]

Yes bubbling is how I describe it. Like I can feel everything as it moves along. Puts me on edge!

[Jbean90 in reply to Daisy2191]

I wish I had more information for you, but this has only recently started for me. After leaving an incredible stressful job. I have had some this symptoms all my life. It just seems now like they are all playing up at once and slightly worse. I get headaches as well they start on my right temple usually. Those are new. I rarely used to get headaches.

[Munchkinfeet]

Hi Daisy, it is worth going back. Your gp could change your meds, repeat bloods and if your symptoms have worsened or blood numbers have changed your referral could become more urgent. Have you had foecal calprotectin done?

I kept contacting my gp as my symptoms just kept getting worse. I continued to lose weight, was in dreadful pain and eventually I had a bleed so my consultant admitted me for observation and scopes, brought the whole thing forward by weeks. Call the appointments department at the hospital, they'll tell you a rough idea of how long you need to wait, call the consultant's secretary too. Tell them you'll take a cancellation. Good luck

[Hidden]

My referral took 15 weeks!! It’s worth going back to check with the gp though as I was referred for an endoscopy that I was supposed to have had before the gastro appointment but my gp admitted she’d forgotten to do the referral!! Good luck.

[jalapeno1234]

If there's anything I learnt with doctors it's pester. Pester pester pester. Thirteen appointments bought me a freaking GBC blood test and stool test, I too have been referred and have called them a few times, humiliatingly I feel like I'm famous at my local surgery for probably seeming like a hypochondriac. However, I believe if it's IBS you have, I don't even think they'll do much...digestion issues are so vague that the only way I've silenced my guts is to punish it with bad food (unfortunately this is the only way I can have consistent solid stools). Still get the WTF days but I think all a gastro will do is tell us to test out trigger foods etc.

[Leemccluskey]

please try to keep your chin up. sometimes you can wait a while because its not classed as a red flag referral which would usually be considered as maybe cancer. The pain you get under your left rib really does sound like gastritis as that's where your stomach is. IBS can cause all kinds of pains indifferent parts of the abdomen and in fact all over the body even in the groin area and even in your feet or headaches etc.

IBS will often at some point cause Anxiety which in itself can cause stress bloating pains toilet trouble and you then get into a vicious circle with the ibs and anxiety making each other worse.

I have tried many different medications from different GPs and different Gastroenterologists. I have tried buscopan mebeverine ranitidine amitriptyline Gaviscon etc and some made me worse. I have been given laxatives saying I may have a sluggish bowel but again it did nothing. I have been told to drink at least 3 litres of water a day but then I was also told even a small glass of water can trigger ibs symptoms.

I don't want to alarm you but it maybe your consultant id no good and might not fully diagnose what level or type of ibs you have but please don't worry about that as if your in the uk you have every right to request more tests and another referral to another Gastro consultant. again if your in the UK as your consultant doesn't help you then ask your GP to Professor Peter Whorewell in Manchester University Hospital Bowel Centre. Also look him up online as he has written a book and he has a few YouTube videos explaining how he treats his patients in a consultation and how he tries Gut directed hypnotherapy for 12 sessions on nearly all his patients using his team of clinical hypnotherapists. You only have to travel to Manchester maybe once to the first consultation but its well worthwhile as the Professor gives you a consultation for as long as you want or until you have nothing more to ask or say. most consultant referrals last maybe 25 to 30 mins but my first appointment with him lasted over an hour and may last one was 55 minutes and I was already feeling guilty as I was 20 minutes late! He believes it will only stress you out and make symptoms worse if you feel you don't have much time to think and explain your symptoms or ask all the questions you want. the twelve hypnotherapy sessions consist of relaxation and gut directed suggestion. In no way are these sessions anything like Voodoo regression or ungodly etc they are just teaching you to relax and focus .

IBS is often described as being a second brain in your tummy or gut or often described as a headache in your tummy which to be honest is really what it is. its like a malfunction and your gut which goes from your mouth the your back passage can present pain and spasm which can defer pain anywhere in the body like headache stiff joints pain in muscles foggy brain tummy spasms pain in mens testicles back pain pain in fingers and toes and lots more.

Again I don't want you to worry I am just explaining what can happen and to be honest I was so worried about lots of symptoms I had and thought this cant be IBS and having had numerous cameras up and down and ct scans blood tests stool tests ultrasound scans etc which all came back normal I initially felt relieved and my symptoms would all calm down but then come back worse as I got anxious thinking the hospital tests must be wrong or their missing something major. I used to think this because when I looked anywhere like google or the NHS website it would always just say IBS was either diarrhoea Constipation or a mixture of both with maybe bloating and painful spasms. Trouble is often I wouldn't have toilet trouble at all but terrible back pain at night and needing to urinate several times at night causing me to wake up.

When I met the professor and found this website I felt so relieved to find the many many extra symptoms I was experienced were known as being ibs related and experienced by many other people.

So I hope this eases the worry and helps to lift your spirits as you will get treatment and help but I hope it also inspires you to not just settle with your GPs diagnosis and know that actually GPs don't fully understand IBS and often just use it to end your appointment saying "you have IBS that's it" each time you have an appointment. The truth is it doesn't matter how many tests you have if you want more even for just peace of mind you can have them.

Right now the Professor says previous Gastro consultants have tried me on lots of medications that I seem sensitive to or have made things worse. He has currently prescribed Kolaticon Gel which is like a powdery White liquid which is an antacid (for gastritis and acid reflux heartburn etc) it is also an anti flatulent so it gathers all the gas bubbles together to enable them to pass easier (trapped wind can be very painful in your tummy chest or back) and its also an antispasmodic to stop your bowels going into spasm and causing you painful spasms and cramps also in your tummy. You could ask your doctor to prescribe this but actually GPs often don't realise this Kolanticon Gel is great for IBS. So ask your GP to look it up or go and buy a bottle from the chemist as its available without prescription and you could then take it into your doctor and tell them you want it prescribing as it says on the bottle its for symptoms of IBS and is given by Professor Peter Whorewell who is considered to be a world leading expert on the bowel and on ibs and is the head of the only NHS bowel and hypnotherapy research and treatment centre in the uk. I also forgot to mention treatment by hypnotherapy can be done by skype on a computer laptop tablet etc so depending on where you live its not a problem to receive treatment. The professor also gives me a prescription drug called Nortriptyline which is similar to amitriptyline which I couldn't take. They are both anti depressants but now used more to cancel out pain and in particular nerve pain and also to relax you and give you restful healing rem sleep. so until you get your appointment with a gastro consultant you could ask your GP for both of these (Kolaticon and Nortriptyline) to ease your pain and help with IBS and you could even memorise them and suggest them to the consultant when you see them.

Sorry I have gone on a bit but just trying to help in case you go through months or years of getting nowhere like I did and feeling helpless and worried all the time. IBS does not damage your body or cause bowel cancer etc If you got bowel cancer in the future it wouldn't be because you had IBS.

Good luck and I hope the above helps and hopefully others who see this. One thing to always remember is your not alone millions and millions of other people have ibs and many will have it better or worse than you.

If you cant get referred to the Professor in Manchester University hospital then you could go and see a private professional hypnotist but at around £100 a session its not cheap for maybe 12 weeks and you really must check they specialise in IBS gut hypnosis. Failing that if it allows you to reply to this message then maybe I could explain how I was taught the self hypnosis that the professors team teaches all his patients. He sees between 2000 and 3000 patients a year! I really don't know how he does that but he does.

Again good luck

Lee