I’ve been suffering with what the doctors think might be IBS (not 100% sure) for the past eight years. I am in constant pain but the pain is honestly getting worse to the point where I’m getting fevers over it and (tmi) puking in my mouth. I’m living on cereal as I can’t eat anything without being in pain (I’ve tried the FODMAP diet.) I have a lump by my belly button that has now gotten bigger and is very painful. My blood tests have shown I have a low white blood cell count. Basically I’m at a loss. I try to get help from doctors but it’s like I hit a brick wall. I’ve recently moved so I’m waiting to see a gastro and the GP’s are absolutely no help. I’m currently on cocodamol for the pain but it no longer works and I really just don’t know what to do, it’s got to the point where suicide looks better for me. Does anyone have any advice or what painkillers I could ask the GP for please? Sorry this is so long I’m just desperate.
I don’t know what to do: I’ve been suffering... - IBS Network
I don’t know what to do
Personally,I would not ignore the lump,especially if it's getting bigger. Push to see someone with it. As for IBS I was told 14 yrs ago that was my problem,I have daily chronic pain . I've never believed in IBS,I think that's a get out of jail card when they have no answers for you. I've been through every test,about 6 gastroentrologist,diets,you name it I've done it. I've now been told by my pain specialist there's nothing he can do for me.
But I do have hope,I am paying for a Physiotherapist,and she said if I had seen her years ago,before I got this bad,she would have been able to help me better. But now it's going to take time.
So my best advise would be,when you've exhorted everything else,try a women's Physiotherapist must be really experienced. I think they know more than doctors sometimes. Anyway best of luck🍀And get that lump sorted. One more thing Co Codamol is no good for your stomach.
Hey,
Thanks for the advice. I’m sorry you’ve had to go through that. I’m exactly the same - I’ve had every test done also. I’ve heard IBS is more of an umbrella term. I’ve had doctors comment on how they don’t think I have IBS but it’s like what do I have then 😩 thank you for the well wishes. Sadly I know cocodamol isn’t the best but it was the only thing that actually took some of the pain away now I’m lucky if it lasts an hour. I’m just stuck.
Where's your pain.??
My stomach, belly button, bowels and bum (tmi sorry lmao)
Hi Lilrose92,
I’m sorry to hear you are suffering so badly! IBS really is not a nice condition to have. I’ve found over the past 6 years to get help with it, is just keep pushing the doctors for help. Even though you might feel annoying, eventually they will do something. I’m now on Sertraline for my IBS & off to an IBS clinic - so might be worth asking to see the IBS clinic. But don’t give up, I didn’t and after 6 years - it’s paying off and I’m getting help! Good luck x
Thanks for the advice, I’m actually on that for my depression what mg are you on for the pain?
That’s ok. I’m on 50mg and started taking it Friday. But it’s giving awful headaches & insomnia. How about you?
oh no that’s awful I’m sorry 
is there anything the doctors can do for you about that?
I’m on 150mg
That’s ok, just something I’ve got to cope with 
I’m not sure, I’m going to speak to a pharmacist soon and see if I can get some sleepers. As not sleeping for 2 days is taking its toll. Ah ok, how are you finding 150mg?
I can imagine. Must be really crappy not sleeping well. I struggle to sleep well but it’s mainly just me waking up a few times in the night and waking up at 3/4am to start the day.
I don’t think it actually does the job, it’s for my depression and anxiety but I feel like maybe another tablet would maybe work better than this
Hey
Have u been tested for ceoliac desease ? Or a gluten intolerance? As i was in pain constantly and i did find out i was gluten intolerant and coming of that helped but i did also find a physio and osteo that dealt with groin and stomach and internally as i was in such a mess ...
I thought it was endo and ibs and i have helped myself food wise by not eating inflammatory foods and then i needed to deal with years of pain in that area...
I was so tight in my groin and stomach and pelvic floor and i saw a womens health physio she sorted the pf muscle then she sent me on to a osteo who dealt with my digestive issues and my painful periods and tight stomach and now 18 months down line im almost there.
It can b many things but the stomach pain and sickness reaks of intolerance may gluten mayb dairy....
What i did is i went gluten free a week and had massive difference then dairy free and not much difference at all but i decided to stay with soya milk.
Try not to take any painkiller but i do take probiotics and digestive enzymes and peppermint oil capsules...
I’ve been tested for a lot of intolerances I can’t remember if gluten was one but I know dairy was and it came back fine. I know I’m intolerant of fruit and veg so I avoid them but I’ll definitely ask about gluten.
Everything you’ve described like the pains in the pelvis and bad periods are what I have experienced so I’m definitely gonna look in to gluten.
Unfortunately cocodamol has been the only thing that’s relieved any kind of pain for me and I’ve tried a lot of medication before - this was the last option. I honestly just feel stuck. Thank you for the advice 💓
Unfortunately they can test for cealiac but not intolerance to gluten that is a case of u having to test it urself like i did, just stop for couple weeks and if u feel better u know it is.... i was so ill , I had pain, was so bloated and fat,everything upset me(coz gluten is in everything but fruit and veg and meat) i had psoriasis and hives and within 3 weeks it had all gone so my body was telling me but i just couldnt get what it was.
So for two week i had gluten free cereal, anything that was gluten free for lunch( u can get loads now in free from bit in supermarkets) and meat and veg(alway white meat) never red, we cant digest red meat it doesnt pass well( if u know what i mean) so turkey chicken.... sometimes pork.
I just did that for two weeks and knew straight away it werent for me it had to go.best thing i ever did.... i lost two stone, my guts are happy, my skins great, my period pains halved,it great.
I did see some physio and that after but that what i would try first if i was u! If that dont work u know it not gluten then were move onto next move. U must b very anal about it though as in one bit of gluten and u may aswell forget it as ur never know
Also the only thing i would say with cocodamol it inflames ur lining of ur gut. BADLY.
I got taken of them and naproxen as my liver and kidney function was terrible in last blood test. Three months without them there back to normal
Well thank you for the advice I’m definitely gonna try going gluten free. Seeing as at the moment all I can actually eat is cereal I’ll look for a gluten free version 😂
So it takes two weeks to notice a difference with gluten?
I’ve tried naproxen. Maybe it’s just something I’m gonna have to work out with my doctor when it comes to painkillers. I don’t want to be taking cocodamol because as you say it isn’t good but when it’s the only thing that even remotely helps one becomes desperate.
Yeh i know i was on naproxen and cocodamol for 18 months it was till had blood test i was taken straight of and i noticed my stomach got even better after!
So try to see gluten first.... yeh i noticed in about 4-5 days i was getting better then by two weeks i just knew, it was mad... now if i eat anything with gluten in my gut flares straight away.
Yeh cereal they do good kelloggs ones or there own makes in most supermarkets. Morrisons choco pillow are my fav lol i think it my one meal i dont care if it sweet
Ok! I will try it thank you for the help💓
Hi - this sounds like it could be more than one problem e.g my husband had a painful and protruding belly button lump and it was an unbillical hernia; a really simple op to fix. My mum has a hernia above stomach which causes her acid reflux and vomiting but is controlled via pills and i have endrometriosis which causes pelvic pain, heavy and painful periods etc. All this is treatable, its just docs are dismissive. Took them 14 years to diagnose my endo! Really hope you find a solution soon.
Hi,
Thank you for the reply. I’m sorry you all had to go through that. I was wondering if it was a hernia, I’ll definitely get it checked out. Wow 14 years? I’m so sorry, that’s a long time. Thank you 💓
Hi....I too was thinking hernia. I won’t take no for an answer from my doctor as they are only too happy to chuck pills at me. I insisted they tested for h.pylori even though they insisted I had gastritis, the test returned positive. Please return to your doctor and get the lump sorted. Once that is dealt with other symptoms may improve. Good luck x
I agree with you on the doctor part 100% more like sticking a plaster over the problem then dealing with it. I will definitely go back. Thank you 💓
I feel for you as I suffered the same for years. Recently the pain had got so bad and so persistent that I was beginning to believe in my heart that it must be more than the IBS I had had formally diagnosed. Gp was no help, and seemed uninterested.
I had tried all the different diets with little or no relief. Every time I thought I had cracked it,, the pain would gradually start again.
I gave up refined sugar, processed foods, grain products, dairy, all to no avail, and then I began to think that there was not much lft to give up. Then it dawned on me that really all that I was eating was meat, fish,fruit and veg. So I wondered what vegans eat, and decided to look into that.
I discovered that there is a new movement amongst modern health professionals, with lots of research to back it up, that advocates a Wholefood,, Plant based diet. And they recognize the vast numbers of people suffering with IBS and various inflammatory conditions, and have discovered that eating animal related produce is nearly always - if not always the root cause.
I decide to see if I couldfollow that way of eating for a month just to see if it would make any difference to me. Within 5days the pain was a lot less, and within a month it was gone.
I am 5 months on now, still doing it with no desire to resume eating meat, or evencheese which I really did love. I've not even craved ice cream through this long hot summer!
There are blogs to follow online, enthusiasts demonstrating Wfpb cooking on Youtube.
There are magazines on sale and lots of recipe books to give you a clue as to what you can / should eat. Amazon has been my 'go to' for books and (in UK) Ocado has been great for some of the ingredients less commonly available.
I still cook meat for my family as usual, but let me tell you they always look at my food and say how good it looks and smells. My grandson even said he wouldn't mind eating my way some of the time.
Give it a try. You have nothing to lose - apart from pain. Good luck!
I’m really sorry you had to go through that but I’m glad you found something that works for you!
Unfortunately I’m intolerant to fruit and veg (only became that way when I got sick) so any veg or fruit and I’m in trouble lol so I’d never be able to do a vegan diet. Thank you for the advice though 💓
lilrose92 - so sorry you are suffering...I had chronic diarrhea for years and finally had my doctor prescribe Welchol for me. Stopped the diarrhea in it's track...immediately! I switched to Colestipol now, for it is less expensive and it works just as well. These 2 drugs are bile acid sequestrants and work so well to control/stop diarrhea. Get that belly button looked at, please..sooner the better! Nothing to mess around with, OK? Hang in...
I’m sorry you had go through that but I’m glad you found something that works for you. I promise I’ll get it checked out. Thank you 💓
As stated, cereal is literally the only thing that DOESNT hurt my stomach when/after eating. I’ve had a colonoscopy and endoscopy around six years ago - it’s been eight years I’ve had a lot of tests. I’ve had an allergy test. I’ve also done a hell of a lot of research in the eight years to try to understand what’s been happening with me. I’ve been battling with doctors constantly so to say I need to “take control” is actually quite rude to me sorry. The FODMAP diet did not work for me. I’ve tried a lot of things and unfortunately eating cereal is the only thing that helps so right now that’s what I’m doing until I get my appointment with my new gastro. Thank you.
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