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Maybe IBS? Please help

hb8847 profile image
26 Replies

Hi. I am a 27 yr old male and after about a decade of failing to fix my health problems am about at my wits end, so if anyone has any advice or can help in any way I'd be very grateful.

Symptoms: From my late teens I began experiencing some pretty odd psyghological and physical symptoms which an array of doctors diagnosed as major depressive disorder, or one of its variants (bipolar, generalised anxiety). The symptoms were vast & descibing them all would take too long, but essentially it felt like my brain was ceasing to funtion properly. I had the works; councelling, CBT, meditation, an array of antidepressants and drugs, and shock treatment, none of which had any effect. This was severe, it was getting worse as time went on, and frankly I was running out of options.

Then randomly last summer (June 2015) I decided to drastically alter my diet after reading a random BBC article proposing a link between gluten and dairy, and depression. I gave up both and immediately noticed a change - very minor - but a change nonetheless so I decided to stick with it.

Over the next 6 months I gradually began to notice my symptoms improve - I was still pretty far from OK but prior to this I was barely alive and nothing had helped, so this was a big deal. I was back in the gym and predicting a full recovery within 6 months, but then the stomach problems began.

After about 4 months on the new diet, I started noticing a dull ache in my abdomen just above the naval, which would knock me out for a week or so and then subside. The GP diagnosed acid reflux & prescribed omeprazole, but taking these suddenly brought back some depression-like symptoms so I stopped them immediately & decided to try cutting more from the diet - this time any gluten-free substitutes - and wait it out.

Eventually this improved, and after a few months I was back on course to fully recover. I went an active holiday with my family last Easter which would have previously been unthinkable, and genuinely felt a few months away from fully funtional.

Then on return I slipped up & had a gluten-free snack - one of those chocolate brownie subsitutes from Sainsburys' free-from range - and it completely knocked me out. Bad stomach cramps, general ill feeling, very light headed, and a lot of the previous depression symptoms were back. Notably also I was very consipated, and was only going about once a week. I was demoralised but calm - I felt like I just had to wait it out & I'd probably still be on track. But this time it took longer to recover, about 2 months for the cramps & symptoms to subside.

Eventually they did and I was back exercising, but again slipped up. This time i gorged on some bacon, which I hadn't ruled out and frankly wasn't sure would be an issue, but within a few hours all the same symptoms were back, and worse than ever. My stomach was now in real pain, and I spent the next few weeks curled up in the foetal position. Depression, constipation, all back.

Again gradually the symptoms began to subside, but it was taking a lot longer this time. The bacon was in late June of this year, and only by mid September was I approaching the level I was at before. I had nearly recovered when I began to feel like I was coming down with a common cold - no bother I thought - but this brought back all the stomach symptoms in a massive way and felt like I was back to square 1. Real pain throughout the day, I felt really bad. This was about a month ago, and while the worse of the cold seems to be long gone, my stomach is still really painful for large parts of the day. My bowel movements are very infrequent and when I do go look pretty unhealthy; very gooey & full of undigested matter.

Throughout this I've obviously been seeing the doctor. I had some blood tests - coeliac amongst others - which had all come back negative & was referred to a gastroenterologist who I saw earlier this month.

He basically took one look at my chart and said I had funtional abdominal pain. My stomach pain was being caused by my depression, not the other way round, and a biopsy would be pointless. He prescribed anti-depressants and/or cbt, and was told my diet had no effect on my overall wellbeing. To say I was unimpressed would be an understatement.

Afterwards I looked up funtional abdominal pain and it appears a necessary condition is the absense of a change in bowel movements. My bowel movements had obviously changed quite significantly so I began to hunt around for related conditions, and came across IBS which seemed to tick most of the boxes.

I decided to eradicate FODMAPs from the diet about a week ago to see if it had any effect. As of yet there hasn't been a huge amount of change in my physical or mental symptoms, however my consipation does seem to have eased somewhat; while my movements are still looking pretty unhealthy I'm now going once every 2 or 3 days. The pain is still pretty full on & am still feeling generally quite unwell so am relcutant to jump to any conclusions however.

Anyway this is where I'm at now. If you've read this far, thank you. Currently I'm considering quitting more foods just to see if there's any further change (pork? eggs?) but frankly all I'm really eating is unprocessed meat, some light gluten-free carbs (basically rice and potatoes) and a few varieties of low Fodmap fruit and veg, so not sure if there's anything else I can realistically do from here.

Again I have that familiar feeling of running out of options. I know there is a link between my stomach pain and my mental symptoms, but feel deep down that the stomach is the root cause and not vice versa. I know given my recovery from depression over the past year and the subsequent emergence of IBS-type symptoms that my diet is having at least some effect on my overall wellbeing. And it seems given this recent setback over the past month that my immune system is in some way linked, and that a viral infection can cause my stomach symptoms to flare up if they're not fully recovered. What this all means however I'm not sure. My main concern at the moment is whether I can do anything further to speed up my recovery, or help diagnosis through altering my diet even further. Any help with any of this would be massively appreciated because frankly I'm not sure where else to turn.

Again, many thanks.

Hugo.

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hb8847
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26 Replies
Nick137 profile image
Nick137

Sorry I can't help Hugo but your symptoms sound very much like mine except I don't suffer from depression but anxiety. I have bad lower abdominal pain (below my belly button) all day & every day, bloating and very mild constipation. Unfortunately none of the usual medications (Buscopan, Colefac & peppermint capsules) have helped nor have a few other things like Symprove, VSL3 or SilicolGel but that doesn't mean to say they won't work for you. I am just about to try the FODMAP diet again but try and stick to it a lot longer.

hb8847 profile image
hb8847 in reply to Nick137

Thanks Nick, yes I see no reason to discontinue the Fodmap diet just yet so hopefully this might start to have an effect. Regarding medications, I'm yet to try anything - I'm a bit concerned about doing further damage to my insides without being fully sure of what's causing my symptoms. Many thanks for the advice & best of luck in the future with your symptoms.

Nick137 profile image
Nick137 in reply to hb8847

I think the anxiety makes my symptoms a lot lot worse as on rare occasions my anxiety lifts my stomach gets better.

Justawish profile image
Justawish

Sorry to hear that I do agree with you and think that the connection between the gut and our mental state is far greater that we think it is. As for the diet, having a food journal is very helpful. I have tried the low fodmap diet and have enjoyed some improvements of my symptoms ( cramps, acid reflux, etc.) what really changed the deal for me was the AIP autoimmune protocol ( meant to be followed for a couple of weeks or months depending on your condition before reintroducing any irritant foods),You also have the SCD or GAPS diets. I deeply encourage you to look at those diets and do some deep research. You may have a leaky gut. Maybe because of SIBO or Candida overgrowth who knows. Leaky gut is the cause of a lot of issues including depression. I personally do a combination of AIP and Low fodmap as I noticed that I have sensitivities linked to high fodmap foods. I wont lie to you being a traveler it is hard for me to 100% respect the guidelines. Good luck and tell me if you need some links or source of information about leaky gut :) There is actually a seminar going on about Thyroid but you can still get interesting info about the brain gut connection and leaky gut. thyroidconnectionsummit.com/

hb8847 profile image
hb8847 in reply to Justawish

Hi Justawish, thanks a lot for all this, it's definitely given me a lot to think about.

Regarding your experience with AIP, assuming you suffer from IBS have you completely managed to manage your symptoms with the diet or do they still flare up? And just for reference would you recommend a certain amount of time to leave it after starting the diet before expecting a change in symptoms to occur? I see no harm in trying AIP so think I'll start it today and keep a log of how things go.

I've yet to have a look at the other diets you propose but will keep them in mind if my issues persist. I'll also do some research on leaky gut - is this something that can be diagnosed, or helped with something further than dietary changes? As keen as I am to get a diagnosis for all this I'm dubious about whether it will actually get me any closer to getting better, as most solutions seem to be dietary which I can all try myself.

And yes regarding your first point I'm in complete agreeal that there's a lot of brain-gut related issues our medical profession appears to be unaware of. I won't go into my mental symptoms, suffice to say they were severe, and not once in 5+ years and hundreds of doctor and psych visits did anyone mention anything to me about my stomach. I fear a lot of people are suffering unnecessarily through our lack of understanding in this area.

Thanks again, your advice was greatly appreciated, and best of luck with your condition.

Hugo

Justawish profile image
Justawish in reply to hb8847

I am from France and here it is even more difficult to get the right test done. So I have done a lot of research and reached to the conclusion that I have a leaky gut. I strongly advise you to read more about this here: draxe.com/7-signs-symptoms-... he also has many other articles about this. Before you go on the AIP diet I think you should definitely follow others advice and stay on the low fodmap diet a bit longer to see if it is sufficient. If not you can have a look at the AIP diet or SCD or GAPS diet. Everyone is different and for some people low fodmap is enough, Gaps works betters etc. It also depends on the underlying reasons of your symptoms, As for me I am still not symptom free but I am getting better. (Started 4 months ago did reintroduce some foods) Since I am travelling I have a hard time respecting fully both diet and have sometimes some of the non allowed food. I still have a long way to go but I am sure that you will find the best diet for you. I also realised when looking at other IBS sufferers that low fodmap does work but not for everyone so you may have tweak existing diets to make it your own. You said in another message that you may sensitive to gluten. I just listened to one of the Thyroid Conference talks one of the expert said that its not because you are eating gluten free that you are safe. Other components can mimic gluten and causing issues for certain individuals.

Do keep on with Fodmaps as it does take quite a long time for the full benefits to appear.

Do you have the Monash University app for your phone? It makes things so much easier as it is based on a green, Amber and red traffic light system and can be with you when you shop or eat out so you can check you are buying the right things.

I've used it now for about four years and am almost entirely symptom free. I do have moments when I eat something I know affects me but also know the consequences and back it up by taking Imodium. Even then only one tablet usually helps get me back to normal within a day or two.

Good luck

hb8847 profile image
hb8847 in reply to

Hi sashapet, no I was unaware of this app, I'll get it now.

Regarding Fodmaps, how long did it take before you noticed a change? And is it IBS you suffer from?

Glad to hear you're now symptom free, looks like there may be hope for the rest of us :-) thanks for all the advice. Hugo

in reply to hb8847

I went gluten and dairy free for four weeks and noticed a difference then went full Fodmaps which took about a further two months before I really felt it was truly working. I still eat nearly all 'green' foods as a base but can eat other s occasionally. I can now also eat some wheat products but again only one thing occasionally and although usually dairy free I can also get away with an occasional ice cream or yogurt. At least I feel good enough to have actually tried a short 3- day break recently and ha e booked a week away in the sun at Christmas. Haven't done that since 2007 so big improvement in my confidence.

Hope it works for you

hb8847 profile image
hb8847 in reply to

Thanks sashapet, interesting to hear it took a few months before having an effect, I think I'll give Fodmaps a bit more of a chance before writing it off. Good to hear you've almost recovered, thanks again and best of luck with your upcoming vacation.

christina1952 profile image
christina1952

Hi Hugo - don't mean to worry you - it probably all is IBS, but my son had undiagnosed Crohn's disease. After suffering terrible bouts of pain and repeated hospital and doctors visits over those years they were all treating him for depressive episodes and more or less thought it was "all in his head". The terrible depression/anxiety/breakdowns we now know were a direct cause of Crohn's flare ups when his bowel was not absorbing his nutrients as well as being destroyed by this horrible illness, cumulating in him having emergency surgery last year where he had nearly all of his small bowel removed.

It was a bad time, but he is now better than he has been for years and is living life to the full.

Please, please ask your doctor if this could be Crohn's, and request a colonoscopy, camera, scan whatever you have to just to rule it out in case. As I said this is not to scare you but the tests may also put your mind at rest a bit.

Wishing you well.

hb8847 profile image
hb8847 in reply to christina1952

Hi Christina, thanks for your advice. I'm aware of Crohn's but as of yet haven't heard it mentioned by any of the doctors. Interesting that your son suffered so badly with mental issues, this does sound very similar to what was going on with me. I'm seeing the doctor in a week and will try and push for some sort of camera scan, may I ask did your son experience stomach pains whilst suffering from depression? Mine only really began when I gave up gluten/dairy and my mental symptoms started to improve. Regardless encouraging to hear that he's now recovered. Thanks again for all your advice. Hugo

christina1952 profile image
christina1952 in reply to hb8847

The reason this rang an alarm bell with me was that my son's depression came whenever he had a flare up of what we know was CD. Ask your doctor the direct question "Could this be Crohn's?". Once you have mentioned it he may have to action some tests. Don't leave it just in case. I just wish I had known about it 12 years ago as it would have saved him so much pain and suffering. He was told his stomach played up because of his depression and anxiety and was fobbed off with one medication after the other. Not one doctor had the sense to check him out until his bowel ruptured and he became septic and could have died. I'm still very angry as you can tell.

Yours is probably just a reaction to certain foods etc.. but please just ask the question.

hb8847 profile image
hb8847 in reply to christina1952

I will Christina. I'm sorry your son had to go through all that. In my visit to the gastroenterologist earlier this month I asked outright whether there was a chance the problems with my gut could be the cause of my mental symptoms, his response was that this could never the case as it's always brain affecting gut not vice versa. It struck me as a rash statement at the time and given your son's experience it would seem so.

christina1952 profile image
christina1952 in reply to hb8847

I agree that depression/anxiety can play havoc with the digestive system and cause many stomach problems, but to say this can never be the case is very untrue as I'm sure many on here will tell you.

My son was fobbed off with "all in the head" for many years but the depressive episodes came with the intense, crippling periods of pain. Had he been diagnosed years before he would not have ended up in the terrible state he was. Every time he had a flare up his mental state went to pot, and every time a bit more of his bowel was being destroyed.

Some doctors can't seem to get it in their heads that anyone suffering with severe toilet problems/pain is going to get depressed and suffer immense anxiety, especially when they get to the point where they can't live a normal life. If the problem is a physical one, for him to say it's always the brain affecting the gut is stupid, for many people it's the other way around.

I hope you ask the question anyway and get on OK

Nesie237 profile image
Nesie237 in reply to hb8847

I think IBS is a play between recurrent anxiety and gastrointestinal symptoms. You're depressed, your gut hurts, you get more depressed, etc., a vicious cycle. They feed off each other and you go back and forth. I don't like the "it's always brain affecting gut" remark. Very cavalier attitude. And it sounds like baloney to me. I've been a nurse for 25 years, have known countless gastroenterologists and have never heard one of them utter such a statement. Doctors can be pretty full of themselves. Don't take that statement as gospel truth. Keep fighting for your health, mental and physical. Best wishes, Nessie 237

I wonder if you have COLIAC disease you sound like my friend Chris.

The stuff he eats is very limited and he is stick-thin !?

I have bipolar and at mo am on CITALOPRAM they keep my bowel transit regular-3 times a day is normal for me; any less and I feel ill.

S x

hb8847 profile image
hb8847 in reply to

Hi S, thanks for your advice. Yes I have considered coeliac disease in the past but I was blood tested for it in the summer and the results were negative. I was dubious as I'd heard you needed to be on a gluten-containing diet for the results to be valid, which I was not, but my GP seemed certain this wasn't an issue.

Out of all the possibilities I think Coeliac disease is probably the most likely given that eradicating gluten is the only thing I know has had a concrete effect on my health thus far. But then why would I still be getting ill from supposedly non gluten-containing foods? It's all very confusing. And then even if it does turn out to be Coeliac there's not much more I can really do to help; I've been on a strict gluten free diet for 18 months and as far as I know that's the only treatment. Regardless I think I'll try and push my GP for an endoscopy just to rule it out. Thanks again.

in reply to hb8847

ABSOLOUTLY; I cant believe you not had one already !

All The best

S x

Nesie237 profile image
Nesie237

Upper and lower scopes, endoscopy and colonoscopy would be a great starting point. Maybe change gastroenterologists? Maybe you can find one with newer information, more willing to explore causes with you. Again, good luck, Nessie 237

hb8847 profile image
hb8847 in reply to Nesie237

Thanks Nessie, yes I feel at least an endoscopy would seem a sensible approach. I'm seeing the GP next week and hopefully she'll give me another referral, I'm not sure what the protocol is on asking for a second opinion so I suppose I just state my case and see how it goes? You seem to suggest I have a look for a specific gastroenterologist but other than going private I wasn't aware that was an option?

Nesie237 profile image
Nesie237

I live in the United States, I'm sure health coverage is different, but maybe when you see your GP you could ask her the second opinion question, tell her what the guy said to you (it''s always the brain affecting the gut). That is just not true. A person can have a gastrointestinal problem regardless of what's in their heads. It's just that the GI stuff can make someone anxious and depressed. Who wouldn't be? Let us know how it goes, Nessie 237

hb8847 profile image
hb8847 in reply to Nesie237

I will do. Thanks for all your help Nessie

Nesie237 profile image
Nesie237

You're welcome. I was thinking you could just ask your GP if you could see a different GI doctor. For me, as long as a doctor takes my insurance, I can choose. I have changed GI doctors because I didn't like the first one's unpleasant attitude. This one is more reasonable and caring. He listens. These are not easy things to talk about. Nessie 237

christina1952 profile image
christina1952

Yes definitely push for examination of both ends or ask for second opinion

hb8847 profile image
hb8847

Update for anyone interested - The doctor's appt was productive, she agreed that a diagnosis of funtional pain in the presence of a change in bowel habits was surprising. Annoyingly the GP surgery hadn't received the notes yet from the gastroenterologist so was unable to move forward with another referral but has in the meantime set me up with blood & ultrasound tests & a stool sampling kit, so hopefully that might glean some results & at least gives me something to move forward with.

Regarding diet, I've continued with FODMAP and added the AIP diet onto that 12 days ago. About a week ago I noticed a notable uplift in some of my symptoms - both mental & physical - but this has since regressed so I'm reluctant to read too much into this as yet. My bowel movements however have changed; I'm still going very infrequently, around once every 8 or 9 days, but the consistency is more solid, the colour is better and there appear to be far fewer undigested foods. While I'm pleased there has at least been some change I'm not sure how much to read into this given how infrequently I'm still going & the lack of consistent improvement elsewhere. Is this an early sign that something is working, or is this just normal for anyone who changed diet in such a significant way? And if it is a good sign, why might I still be experiencing stomach pain & the related synptoms, is it from prior damage? If anyone has any input on this I'd be very grateful.

Hugo

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