IBS? Not sure what to try next!

Digestive health
1

This may be a long post, so thank you to anyone who takes the time to read through!

I'm 22 years old, female. When I was 16, I started getting odd tummy aches in the morning. After I went to the loo, I felt better. Because I was in sixth form/college, it wasn't always possible for me to go to the toilet when I needed, I got some sort of anxiety whereby I now find small quiet enclosed spaces stressful - incase other people can hear my tummy rumble or I'm particularly gassy.

I never really thought too much of this issue, just that it was an over reaction and eventually I'd forget about it and move on. This hasn't happened annoyingly.

I started uni in 2014, where I had constant bad acid reflux so was put on omeprazole and lansoprazole*. I was told if I did have any tummy issues, these should actually help. For a brief period, they helped the reflux. This year, around march time, I started getting constant upset tummys and feeling generally unwell. I gave in and saw a Dr. in April. I took some tests and it came back positive for h.pylori, so I had a week of strong antibiotics. This brought great relief and I started feeling better.

One week after I finished this medication, I started to feel the same as before but worse. Went back to the drs. and got told the h.pylori may not have been the issue and seems like it could be ibs.

Since then, every dr. tells me it's ibs and offers me something new to try: mebeverine, buscopan, peppermint type medications, immodium. Nothing helps anything; some of them actually make things worse!

Last time I saw a doctor was 2 and half months ago when it was really getting me down, but again they haven't been able to advise more than IBS and send me on my way.

In the past 7 weeks, things have gotten much worse. I've developed new symptoms in that when I try sleep, I get light pins and needles in my hands and feet, constant twitching in my arm muscles, leg muscles and eyes. I don't sleep because of this, it causes my entire body to ache. The tingling sensation doesn't fully go away, even during the day. My legs also become quite stiff when generally walking in the day.

This coupled with my current ibs symptoms of : constant 'raw' feeling inside my stomach, it just feels inflamed continuously? the need to go to the toilet multiple times a day (either in the morning or generally throughout the day), gassy towards the end of the day, intense hunger pain like feeling, feeling sick, stabbing sensation in my lower left abdomen.

I've tried cutting my diet down, tried excerising, tried various tablets and can't find any (even brief) fix.

It's become highly stressful to work with as I feel anxious/exhausted and unwell all the time.

Could this be more than IBS or can anyone else reccomend something that might help slightly?

As you can imagine, since being told it is IBS, I've read A LOT of posts regarding it. I'm not sure if the pains and sleep aches are related to ibs or not?

I could waffle all day regarding this ongoing issue but that's probably enough for now..

Thanks to anyone who replies,

regards

2

Yes to me sounds like IBS amongst other things....You seem to have also lots of stress and Anxiety. This could be beacuse of the IBS or the IBS could be because of the stress....Its chicken and egg.

Bad sleeping, pins and needles are classic Stress and Anxiety symptoms IBS is and can be just another stress symptom as well. Acid reflux can also be stress related and IBS related.  In a nutshell you need to break the Stress Symptom Cycle.

All you have discribed I have had in Spades...

 

3

hi, having a similar conversation elsewhere ....I had similar issues ongoing most of my life. Finally diagnosed in my 40's with auto immune disorder. Had symptoms ongoing getting worse by the decade. 

It was affecting my central nervous system in the end. I hope you have agood gp and I suggest you ask for a referral either to an immunologist or a a rheumatologist. That's the only way you can probably get an answer to what is going on.

Ask for your esr and crp and ana to be tested. Blood tests not always done as a matter of course. Even if they are out of kilter you might need to push for a referral but do it. You can't go on suffering like that all of your life. 

IBS sometimes has underlying causes - like mine. I knew it wasn't really IBS and they just couldn't diagnose what was going on. Everyone with my disorder has 'IBS'. 

4

Hi,  I have been told I have IBS too however I do not have pains, cramps etc that come with IBS. Keep at your doctors, I just keep going back to mine until they work out what is wrong with me.  Since you have developed new symptoms I would go back to see them.

Have you had any bloods done?  Also handed in some stool samples to be tested for infection?  Calprotectin?  The doctor can do this.  Even ask them if they could check. 

5

Your symptoms do sound like IBS which can cause joint pain.  My joints ache too and I get tingling.  However, I have had this for years before I got IBS.  There are many other anti spasmodics you could ask your doctor about.  It takes time to find one that suits.  Sometimes even low dose anti depressants can help some people with the stomach pain.

I tried Mebevrine and I got a lot worse and I panicked that I had something more than IBS because I developed new symptoms.  I then tried Buscopan and felt a lot better.  Peppermint treatment however gives me heartburn.

6

hi Pippa i have heard this said before about IBS causing joint pain. That may be right I can't comment. But personally I wouldn't accept that as a diagnosis of IBS without ruling other things out. For me personally I began with IBS and developed other symptoms over the years. 'Tingling' and joint pain are things I would want to have a fuller discussion about. 

Often IBS is diagnosed when there is another condition underlying. I was diagnosed by a gstroenterologist who thought there was nothing else going on. He was happy to discharge me back to my gp when I actually had an underlying condition. 

I think that IBS should only be diagnosed when everything else is ruled out. Glad you found something which works for your symptoms. 

7

My IBS was diagnosed after everything else came back negative.  It was identified when I went to the doctor eight times with stomach pain, change of bowel habit and nausea.  It took three months of testing.

In my case, I have always had joint pain and tingling and I think it is unrelated to my IBS.  Damp climates, a sedentary lifestyle and lots of falls are probably more to blame.

8

hi Pippa, it was the same for me. All my tests were negative except that I had raised ESR and CRP. But with the range of symptoms I had going on I didn't accept IBS as a realistic diagnosis. I was not food intolerant but my stomach was bloating and painful randomly. 

During this period I was sent to a rheumatologist and she referred me to a gastroenterologist and an oral immunologist. The gastro could find nothing remarkable after investigation. He diagnosed IBS. I said this was wrong. After seeing the oral immunologist she diagnosed an auto immune disease. At my next gastro appointment I asked him why he hadn't picked up on it. His response was 'I've never seen anyone with that disorder before'. Ok but I feel certain he was taught about it at medical school. Anyway, what I am saying is there is no actual blood test for auto immune disease just indicators. If people don't do the right investigations then they don't find the needle in the haystack. It then took me a year of seeing an immunologist to get a proper diagnoses.  

The change in my life was massive. I wouldn't take these answers from docs I'm afraid. Not without exhausting all possibilities. I feel for you and everyone going through these trials and accepting and working around our poor quality of life. A visit to someone who understands auto immune disease might benefit you. I will try to send you a link to something very interesting I was readin on this the other day which highlights the difficulty in getting a dx. x

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Thanks.

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Thanks for the replies!

I similary don't want to just accept 'IBS'. I fortunately until these problems started coming along, haven't ever been ill before (other than the usual sickness bugs/flu once every blue moon). Everytime I hear 'IBS', I know almost nothing will be done to help my situation. In some ways I'm grateful it isn't a life threatening illness. But, to not sound overly dramatic, I feel like it's ruining my life at current.

I have to take time off work, and whilst they are super nice about it, it must be annoying for them aswell as making me look totally unreliable to other staff.

Even at weekends, I don't like going places because I'm never sure of how I'll feel when I reach the destination.

Someone mentioned stress/anxiety and that is true, caused entirely by the problems I'm having right now. But said, it's hard to break either one of the cycles.

I have booked a doctors appointment, but since I'm not an emergency case, I have to wait 3 weeks!

I'll be taking some of the ideas mentioned in here with me; at this point I'm desperate for any help. I just don't understand how something like this comes up out of the blue and suddenly you're stuck with a daily battle and no answers!

Very frustrating.

11

My IBS came on suddenly; almost overnight.  One day I was fine and the next morning I had raging stomach pain.  I didn't believe I had IBS when it was first suggested because I had read about IBS overdiagnosis.  However, when my doctor explained it all to me and why he thought I had it, everything made sense and my stomach began to settle.  Stress is a factor in IBS and is the trigger in my case.  When I accepted my disgnosis, I got better.

12

I wouldn't. IBS has become a catch all for when a doc can't explain what is going on. Once I had treatment for auto immune disease my IBS symptoms disappeared within a week along with all of my other symptoms. Acutally symptom and pain free for three glorious years now in which I got my life back to normal. x

13

That is annoying the length of time you have to wait for an appointment, however hopefully progress is made at the appointment. 

I was the same as you, never unwell before all this, odd cold here and there, then all of a sudden flare ups of being nauseated for days/weeks on end, struggling to eat, losing weight.  I feel like it is ruining my life too.  I get worried going places, hoping I'll be ok when there.  I managed to control this a bit better, I even went for CBT therapy but it still just hits me out the blue and I'm then unwell.  I have no control, can wake up in the morning unwell or be fine then half way through the day it hits me!  Totally understand where you are coming from.  Its the unwell feeling that comes first then anxiety/panic etc.  I am glad your work is being very understanding, always helps. 

I would ask for further tests before accepting IBS at your doctor.  With IBS it can also be triggered by a certain food you eat.  Perhaps keep a food diary from now until 3 weeks time when you see your doctor.  Note down when you don't feel right.  See if there is any pattern.  I have done this however I have had no luck which is why I don't agree I have IBS as it happens with any foods for me!  Can eat something one week and be fine, next week, same thing and be feeling sick.  Could be worth a try for you but.  Means you can tell your doctor you have done a food diary already in case they ask you to do it.

Good Luck!  Let us know how you are keeping and how you get on, if you get any answers in the next few weeks!  Hopefully we can all help each other get to the bottom of these issues!

Lorne.

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It is common with IBS to have a reaction to a food one week and feel fine on the next week with the same food. Perhaps try Fodmap if a food diary has not shown a pattern,

15

Hi Margaret,

I was wondering what your symptoms were for auto immune disease, if you don't mind sharing?

I was given antibiotics for a sinus infection in March 2015, shortly after this I started feeling sick, totally out the blue.  It lasted a few days with some softer bowel movements and a bit off food, then it went away.  I assumed I had a virus.  However this then kept happening to me.  Coming more often, lasting longer periods of time.  Really struggling to eat as the nausea is so overwhelming.  I have never actually been sick.  My bowel movements have never went back to normal since the beginning of this.  Always softer, looser and pale in colour. 

I have had so many tests done (X-Ray of stomach- showed inflammation of small bowel, MRI of small bowel, Ultrasound scan, Gut Hormone blood test, Endoscopy, CT scan of head, Blood tests, checked for coeliac disease) and no one can find out what is wrong with me.  My doctor said it must be IBS and gave me Buscopan.  They didn't help at all.  Neither did Peppermint Capsules.  I do not have pains or cramps or diaareah all associated with IBS.  I am at my wits end!  Does it sound similar to you?

Thank You,

Lorne

16

Yes Lorne exactly the same. My whole deal began with sinus problems and IBS. I had a few things going on in tandem. Then it seemed to be one thing after another. I went to different docs and got nowhere. The fact you have inflammation could be more significant than you know. 

17

sorry meant to continue that. 

I was extremely fatigued. I knew it wasn't IBS to be honest. You can tell. This was in no way food related. Bloating and cramping in the stomach. Nothing relieved it. IF it's mild I get some relief from Buscopan but really. Nothing worked. Blood work all fine. It was a mystery. Kept being sent away with the words ringing in my ears 'are you stressed'. I thought my god....isn't everyone! But no not really that stressed at the time.

Everyone was drawing a blank. My doc was about to diagnose me with chronic fatigue. I had by that time started to get joint pain. She said she wasn't happy to diagnose that until I had exhausted all possibilities. So she referred me to a rheumatologist. She realised there was an underlying inflammatory condition. She sent me to a gastro guy. He said IBS. I just thought that was a joke. But then I went to an oral immunologist (my eyes and mouth had been quite dry). She basically realised I had an auto immune disease. 

From there I got a referral to an immunologist. After a year of monitoring symptoms...maybe even more, I was finally diagnosed. 

 

18

Sorry, i meant to mention, the inflammation part is interesting. There is often nothing to see in our blood work or scans. Mine are always totally clear. I have an auto immune/auto inflammatory condition. It causes problems because the immune system is misfiring and it thinks there is illness where there isn;t so causes inflammation in rushing to your defence. Hence the reason it can affect you anywhere where you get inflammation. Commonly that is in the GI system but can also affect the joints, brain and central nervous system. For me, it affected my CNS eventually. But for some people it will only affect other areas. Therefore very varying symptoms from one person to next. So hard to diagnose. 

While all of that sounds terribly scary, the best thing to happen to me was being diagnosed. I've just spent 3 years of being symptom free with good treatment. No IBS, zero symptoms. It has been great to be without it for that time. I know what you are going through believe me. 

19

Hi Margaret,

Thank you so much for your reply. This has really helped. I am getting blood results tomorrow and I have another appointment at the hospital next month and this is good to know the symptoms you had, some were similar to me, so will see what the consultant says this time round. If no help I can start exploring auto immune. A bit like yourself I'm not willing to just accept IBS. I want everything tested first and every corner examined!

I am so glad to hear you finally got the answer you'd been hoping for and hopefully I will be on the same boat soon.

Lorne

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Yes hope you find answers. What sort of consultant are you seeing?? Rheumatologist would be most useful I think. Ask him directly what your inflammatory markers show. Ask him if he can tell you are your esr crp and ana normal. These are not foolproof but are markers in the blood.