I feel embarrassed describing my poop but am at the end of my rope with my gut issues.
I’ve had IBS for 25 years but the last 5 years have been non-stop, daily issues.
Over the last 4 years I have had endless tests. A colonoscopy and gastroscope in 2019 which was clear, a clear ct scan later that year, last year a pill camera endoscopy to check the small intestinal area and several negative FIT tests.
This year I’ve had a fully comprehensive stool test (this came up with dysbiosis, Candida and higher levels of E. coli). In July this year, I had another colonoscopy (with microscopic colitis biopsies) and have recently had a bile acid malabsorption scan. All back ok.
Despite avoiding my known food triggers (diary, high fat, eggs, chicken…), eating low fodmap, only drink water etc. I exercise also yet I am still having daily issues.
I have endless gurgling, growling guts. Have upper issues such as excessive burping, a gnawing acidic feeling, awful nausea. I have lower gurgling, rectal pressure and feeling as though I need the loo all the time, bloating so bad in the evening that I look pregnant (and it is so painful) and excessive flatulence.
(Sorry, this if this is tmi). The one thing that I absolutely hate and which really controls my life is this feeling of urgency as soon as I wake. My stools are a soft, sticky consistency like peanut butter yet are really hard to pass and leaves me needing to wipe and wipe and leaves me feeling the need to still go as I feel full in my rectal area (often 2 or 3 times in the mornings). I absolutely hate this.
I don’t know why everything has been so much worse in recent years? I am now 50, female and in perimenopause so not sure if hormones are making this worse (I do have some gynae issues too). I ask both my gastroenterologist and gynaecologist and they both shrug (helpful🙄).
Two weeks ago, I tested positive for SIBO. I have no idea if this is something which I’ve acquired additionally to IBS or whether this has been the cause of my issues all along. I had asked my gastro for years but she has always said that I wouldn’t have this and there is always some underlying issues causing it (God only knows what the heck that is? So I am now going to have to investigate the cause of this!).
I have an appointment with her tomorrow so it will be interesting to see what she says.
Sorry for my ramblings but my main concern is this awful soft sticky poop and feeling of needing to go all the time. What can I do to bulk out and firm up my stool so I can feel completely empty? Noting seems to help and fibre makes things worse.
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rustydog
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I'm sorry to hear what you've gone through but it's great you've been proactive and had tests done and doing the best you can to take charge of your health
My heart goes out to you! I have had IBS/C and slow transit colon for over 30 years and have found that when you have a functional bowel disorder there’s not much help out there - you don’t mention if you’re taking any medication for your condition and if that’s at all helpful and I’m surprised they’ve only just discovered you have SIBO which may be the cause of all your problems. Good luck today with your appointment, hopefully they will put you on antibiotics for your SIBO and you never know this may be the cure you need! keep us updated
I tend to rotate my meds according to my symptoms but in general I take gaviscon as and when needed, 1/2 an imodium twice a week and mebeverine on occasion. After trialling all IBS meds these are the only ones which work for me (well! only sometimes, it is quite hit and miss tbh).
I’m quite annoyed I have only just tested positive for SIBO because I have asked for years if they think I have it as I tick all the symptoms but have always been told no they don’t believe I have it 🙄
I have this at the moment, it alternates between hard stools and then going a lot and sticky stools, and pressure like i want to go all the time. I usually have to take mebervine, and drink less water and no fruit for a couple of days, and nothing greasy. Then it firms up again and the cycle starts again
I don't know if you've seen my other posts about SIBO and SIBO tests? SIBO tests, unfortunately are not accurate, so yes you may have SIBO and equally, you may not have it. Have you taken probiotics in the past and if so, did those probiotics make your symptoms gradually worse and worse? If this is the case, this may be an indicator since you are adding bacteria on top of bacteria in the small intestine. If you've taken probiotics on a good trial (say 3 months) and your system has gotten used to them, then perhaps it isn't SIBO. Note true SIBO cases are meant to be rare and not as prevalent as some will tell you (especially those who are making money from it).
In any case, you won't have SIBO unless you one of its causes. If you have one of the causes that will need treating first otherwise it will keep coming back. This list is below. Perhaps you can discuss this with your GP/gastro (note that the first four causes of SIBO in the list below should be identifiable through a small bowel MRI scan):
Stasis: dysmotility – problems with muscle contraction in the gastrointestinal tract
Surgery (loops, vagotomy, bariatric)
Short Bowel Syndrome
Stuck open ileocecal valve (which sits between the small and large intestine) allowing bacteria from the large intestine to flow back into the small intestine
Achlorhydria – no stomach acid – unlikely if you can experience acid reflux. Additionally a faecal elastase test would show if you aren’t breaking down proteins correctly (which require stomach acid for digestion)
Hypochlohydria – low stomach acid – see above – the only real test is a PH test directly into your stomach, but many practices do not carry this out and home testing is inaccurate
PPIs – proton pump inhibitors for GERD/acid reflux – this is particularly related to long term use
Malnutrition – excess bacteria in the small intestine can compete for nutrients that your body needs
Collagen vascular disease – immune system inflammation e.g. arthritis
Immune deficiency
Advancing Age
Chronic Pancreatitis – this causes constant abdominal pain/fatty stools
Chronic antibiotic use
IgA Deficiency – identified from GP blood tests
Coeliac Disease – identified from GP blood tests
Crohn’s Disease – identified through GP tests and colonoscopy if GP tests indicate referral is needed
NASH – non alcoholic fatty liver disease –identified from GP blood tests
In answer to your question, I did see your reply last time and thank you. I made a note of everything you had written so I could ask my gastroenterologist various questions relating to all of this.
I have had ongoing gut issues for the last 25 years and have tried literally everything to help alleviate the symptoms. Very little helps. I have trialled all the known IBS and digestive issue diets (have been low fodmap for some time), I do not consume any foods or drinks (I only drink water), known to cause me issues, I have tried all of the IBS medications available. I have spent a small fortune on hynoptherapy and private gastro appointments etc……….sadly all to no avail.
I am even under the UCLH’s neuro-gastroenterology team and they don’t seem to be able to help me (I have been told for years that it’s all in my head 🙄). Although the dietician there is wonderful, he understands that I have ARFID which started in childhood and was exacerbated when I first developed my gut issues at 25 (maybe 25 years of poor eating habits for fear of triggering symptoms has lead to dysbiosis?).
It seems that I don’t really fall in neither the IBS-c, d or mixed categories.
My issues are mainly severe gas symptoms. I have awful upper and lower digestive woes and they all appear to be driven by gas, ie excessive burping, nausea, flatulence, painful bloating to the point of looking pregnant, excessive gurgling which will go on for hours. When I lay in bed I will experience a large hard lump around the Ileocecal valve area, after a while this ‘pops’ and disperses so obviously gas yet I experience this ‘lump’ nowhere else within the colon and intestinal area, so not sure exactly why it collects there?
I did a comprehensive stool test earlier this year and it flared up a few things - a high dysbiosis index and high secretory IgA levels (not sure if this has any correlation to an IgA deficiency as I’ve not investigate this issue?).
I have tried various probiotics and they all make the gas worse.
I do have joint hyper mobility and am looking to get checked for Ehlers danlos syndrome (I score highly on the Beighton scale, even at the age of 50). I also have had years of gynae issues and my sister has endometriosis, I have some structural issues in my pelvic region and need to talk to my gynae in regards to this.
This morning, I had a follow up appointment with my NHS gastroenterologist (I had the SIBO test through the NHS). Sadly she didn’t seem too interested in me looking for the root cause of these issues, she said it was not really worth it (?) and to take a 2 week course of Rifaximin and see how I feel afterwards. I am determined to at least investigate any possible causes even for my own peace of mind.
I am on several SIBO support groups and from communicating with the sufferers on there, I understand it is often not as simple as just taking the antibiotics, so I will look into supporting myself after the Rifaximin with the correct diet and maybe probiotics etc. My gastro said to avoid prokinetics as this may cause diarrhoea.
However, with the info I have gleaned from the support groups and a few books I’ve borrowed from the library I know I will have to give this a few months and see if I can attempt to tackle this myself.
If I feel better (please, just please 🙏🏻), I will be overjoyed and will be able to live my life properly for the first time in over 2 decades. If not then back to the drawing board (but I honestly can’t even contemplate going back there 😢).
I think it’s going to be a bumpy journey but I have nothing to lose as I only live a half life with the symptoms I currently suffer from so nothing venture and all that………..🤞
The fact that probiotics make it worse, is interesting. A trial of Rifaximin is sensible to see if this helps and if it does help, this may be used as a diagnosis, but really they need work through the cause list with you, especially if you benefit from it, otherwise you're just going to need repeat rounds of Rifaximin, which is stupid. My gastro referred me for a small bowel MRI scan, that covered off some of the points and then we had a discussion about the remainder, all highly unlikely in my case. Agree you should chase this through. It may be best to lay off probiotics until the root cause is found (if necessary). I believe Rifaximin is limited to action in the small intestine (a gut selective antibiotic), maybe confirm this with the gastro. Fingers crossed, you'll get to the bottom of it. You've done well to acquire the knowledge that you have and sometimes that's half the battle. Good luck.
By the way one great point is that NHS is offering you Rifaximin (which is expensive) and rarely prescribed in the UK.
Thank you. I was a little downhearted when she said it wasn’t worth investigating the cause. The last thing I wish for is repeated prescriptions for the antibiotic (and as you say, it’s very expensive, she quoted £300 when I saw her privately. It makes wise sense for her as an NHS consultant to advise me to find and get to the root cause).
I have had a small bowel pill camera endoscopy but I am not sure what additional findings a small bowel mri would detect in comparison to the pill camera?
The Small bowel MRI might help identify the first 4 points in the cause list i.e.
Stasis: dysmotility – problems with muscle contraction in the gastrointestinal tract
Surgery (loops, vagotomy, bariatric)
Short Bowel Syndrome
Stuck open ileocecal valve (which sits between the small and large intestine) allowing bacteria from the large intestine to flow back into the small intestine
Sorry to ask so many questions but did you have to take a laxative for the small bowel mri?
I have had 2 colonoscopies and the pill camera within 4 years and obviously had to take bowel prep for them. I don’t react well with the prep. Promised myself I wouldn’t take them again unless I REALLY had too but am really interested in the ileocecal valve issues as that area is where I experience a lot of discomfort.
Hi. Never feel that you're giving too much information. This forum gives us all a much needed platform to talk to people who understand completely what you are going through. I've had very similar experiences to you. I'm 69 and over the last few years .y symptoms appear daily and my sensitivity to foods is worse than ever. One thing that helped a lot was discovering foods which are high in soluble fibre. These create bulk but also a soft gel that helps you to poo more easily. Go online and find a list of them. It was quite a game changer for me because I discovered there were actually vegetables I could eat safely. Sweet potato is very good. A word of warning though..don't have too much as it does send you to the loo! I hope this helps. IBS puts so many limitations on your life doesn’t it?
Bless you, thank you. I actually live for the forums and support groups, no one in my real life wants to talk about my guts issues anymore, they’ve all had enough of my groaning about it all. I will definitely look into fibres, thanks.
These gut issues have completely dictated how I live my life, sadly. I feel for all suffering with their tummies.
Are there any clues other than joint hypermobility that your connective tissue might be involved? For what it's worth, I believe my IBS (which like yours presented primarily as gas, not falling clearly into one of the standard types) was caused by distortions in my connective tissue, resulting from somewhat hypermobile joints combined with dental traumas. Based on my own experience, other clues might be things like small unexplained persistent lumps (I have one behind one ear), fatigue/mild back pain from standing, intermittent feelings of blockage in nose/ears, dry skin on toes/elbows/fingers, toes bent at an angle when relaxed, stiffness/tension that doesn't seem to respond to massage in the same way muscular stiffness does.
I have lots going on with my body tbh, not sure if they are all connected to joint hyper mobility or not or if I have just become hyper aware over the years?
I have constant (and bloomin annoying) tinnitus, tmj disorder and bruxism, dental issues (but probably down to the bruxism), blocked on the right side of my nasal and ear canal area, sore tongue, visual issues (eye flashes and I suffer from aura migraines).
All of my joints click, I have hip issues (was born with double hip dysplasia), lots of gynae issues and an unusual tipped and tilted uterus (which presses on my rectal area!), pelvic, hip and lower back pain (been worse since I had pubis symphysis dysfunction with both pregnancies). I also have issues with feeling lightheaded from crouched to standing position.
I get the muscle stiffness and tenderness thing too. My muscles often feel like I’m coming down with something but never do. I also suffer from exhaustion all the time, very little energy, could literally sleep 10 hours a day and still feel knackered!
Ok, I get quite a few of those as well so I'll share a bit more just in case it might be of use to you. I'm not at all medically qualified, and while I've had IBS and joint hypermobility diagnosed, none of the doctors I've seen have been able to give me a diagnosis related to connective tissue; it's purely self-diagnosed that that is my underlying issue. I don't know what you have, or whether what I'm doing might help you or carries any risks, but what I've been doing for a number of years now to try and treat my connective tissue problem is as follows.
I lie down on my back, relaxing as completely as possible, and use my inner awareness to locate points of pressure and discomfort. I then work muscles that affect those points, either clenching and releasing the muscle or muscles alternately in a pulsing action, or pushing or pulling in a constant action for up to five or ten seconds till something gives and the pressure shifts or reduces.
I've done yoga at various times when I was younger and I remember the stretches then would result in a slow, smooth change, I would very gradually be able to bend farther. With this condition, there's this jerky kind of change instead - the pressure shifts, there's a sort of gliding sensation where things are moving smoothly inside, then you hit another blockage and it takes a bit more time and exertion before everything suddenly shifts again.
When I first started doing this, there would be little or no gliding between one blockage and the next; as time went by, the typical amount of gliding time gradually increased a lot, and it became possible to do some of this in other relaxed positions, sitting up or even standing - but the more the tension that's involved in holding the position, the harder it is to do the work and the less well it goes. Having said that, changing position occasionally is also helpful - sometimes lying on my side, or sitting up on the toilet or slumped in a comfortable chair can be more effective than lying on my back.
Based on what I can see (not much, but lumps are visible), feel and hear (when things shift), there are long thin strands of connective tissue running between my joints, and they've somehow gotten twisted - not just a bit but a lot, into a great big tangly mess. My connective tissue seems to have formed knots, like how when you keep twisting a thread it loops back on itself. But it's like a sprung system - if you pull the loop free, it naturally returns to straight under its own pressure.
I think it's working - it feels like the connective tissue/joint system is supposed to flow freely all the time, and it feels like I'm freeing parts of it up to flow more freely every day. But it's been an extremely long, slow, and sometimes uncomfortable process, and I won't know for sure till it finishes, if it ever does. My IBS is gone, but the fatigue, brain fog, emotional vulnerability, almost constant discomfort & lack of libido, dry skin and brittle nails in my hands and feet, and issues with eye focus are very much still with me. The edema I used to get in my ankles in hot weather is gone, the dry skin in my elbows is completely gone. The big lumps in my ankles and feet from distorted connective tissue there have come down a lot, I can see my ankle bones again. I don't get ill every time someone in the family gets a cold or virus, my immune system is so much better than it was, I rarely get a virus these days.
I don't have bad tinnitus, but I do get a quiet ringing in my ears quite a bit of the time which actually doesn't bother me because it's not loud and because sounds are one of the cues about what's going on when I'm working on unwinding my connective tissue. There are scrunchy noises like pulling velcro apart when a tight bit of tangle pulls free, and quite rumbling noises like distant traffic or sometimes like our central heating boiler firing up, while it unwinds. The ringing gets a bit louder or quieter as things shift.
I assume the distortions in the connective tissue cause pressure and distortions wherever they occur, and this tends to impede circulation of fluids. Sometimes as I work on the connective tissue I can feel the fluids coming back in somewhere they'd been cut off from before, and it feels amazing as well as cool and wet.
As well as the work on my connective tissue, I did use Atrantil for a bit and it may have been part of what helped my gut heal - it got better fairly slowly over the course of a year or more after I stopped taking it, and the improvement while I was on the Atrantil was modest but measurable but it was the only thing I'd tried that did seem to help at all. I even persuaded my gastro specialist to give me a short course of the antibiotics they use on SIBO, and it didn't make a noticeable difference. But I could feel the pressure my connective tissue was putting on various areas in my gut and bowel when working on it, and it makes intuitive sense to me that prolonged physical tension in the gut would cause digestive issues, just like stress does. I could even feel the gut discomfort easing sometimes as I worked on the connective tissue. So I'm pretty confident that the connective tissue disorder was the underlying cause of my IBS.
I have very similar symptoms to you and have travelled a similar exploratory path. I really feel for you. It all takes so much effort.
I have coeliac disease and limited scleroderma which presents, in my case, mainly with gastro intestinal motility issues, weakened sphincter muscles and reflux. Am in the process of being tested for SIBO.
Wondering if you have been tested for coeliac or scleroderma? Just a thought.
It is quite draining isn’t it? Sorry to hear you suffer too, it’s definitely worth looking into SIBO.
I have been tested for coeliac and it’s was negative. I don’t present with any scleroderma symptoms although I do have Raynauds but I think that may be related to connective tissues issues?
Have you tried Psyllium husk? It’s a soluble fibre that forms a kind of gel in your gut and helps ‘smooth the passage’. I have BAM (diarrhoea) and take one capsule before my main meal in the evening. My granddaughter has coeliac disease with a tendency to constipation and finds two a day helps her. It helps normalise a BM so is useful for different kinds of bowel conditions. I get mine from Amazon, have a look at the reviews there and research it online and see if you think it might help you.
Sorry to hear this. My symptoms are quite similar to yours. I'm in my 20s and have had IBS (Both constipations and diarrhea) for about 5 years now. My colonoscopy came back negative and endoscopy indicated only mild gastritis.
I eat the most bland self-cooked (almost low FODMAP) food, exercise everyday, sleep 8h and drink 3-4L water. I still don't see any improvement in my symptoms - trapped wind, loud gurgling sounds consistently, wind and burping, stomach churning rapidly and false alarms and sometimes diarrhea. Due to these reasons, I can't be in quiet rooms and as a student, I find myself struggling due to this. I feel extremely embarassed when my stomach starts the loud noises in quiet classrooms, and sometimes even makes me rush to the bathroom multiple times due to false alarms.
I've also avoided all sorts of social interaction since I don't know what might happen. I sometimes wonder how I'd manage these symptoms for the rest of my (hopefully long) life ahead.... it feels as if I have to put everything on hold due to IBS. It frankly affects me mentally as well, since I know I'm missing out of so many opportunities compared to my peers.
I really feel for you and hope that you find strength and comfort somehow. Take care and good luck!
Thank you. I really do feel for you, my issues started when I was 25, it really did have a negative impact on my mental health and my social life. Have you tested for SIBO?
That's a long time. Can I ask how you've found your way around IBS these past 25 years? For example, going to the office or taking a trip with family etc.?I am dreading going to uni right now and subsequently to a workplace, so much that I'm considering working only remotely which means I have to give up on so many opportunities
I haven't tested for SIBO yet. Would you recommend it? I'm seeing a new GP tomorrow and hope that they take IBS seriously and provide access to tests or medicines that might help
Tbh, I have struggled over the years. I was training to be a dispensing optician back when it first hit me at the age of 25. I now only work 8 hours a week. IBS took that opportunity away from me. I’m probably not the best IBS sufferer to ask tbh as it has really affected my life in a very negative way.
I would definitely ask about SIBO especially as you have many ‘gassy’ type symptoms as I have. My GP hadn’t even heard of it 🙄
Have you tried controlling your symptoms with the low carb/keto? I’m looking into this especially for my SIBO, apparently it helps the symptoms greatly.
Good luck with your GP appointment, I do hope you manage to get somewhere with it. People just do not understand just how controlling and disruptive digestive issues can be.
I'm sorry to hear that life hasn't turned out the way you hoped it would. But I really am inspired to see how you've managed to make adjustments based on this. I know it must not have been easy for you - sometimes I wish I could just stay at home forever and not have to go outside to avoid embarassment. So what you've made out of this situation motivates me. Maybe I won't achieve all my goals, maybe I'll just work remotely and not have the best career I'd have wished for, but there's hope to do some little things and lead a decent and comfortable life.
Thanks for that! I'll definitely ask the GP about SIBO and look into the low carb keto diet. So far, I hadn't made major modifications to my diet (except avoiding spicy food, oil and processed food) as my previous doctors didn't believe it'd help. But I recently looked into the low FODMAP diet and tried it myself for a few days. It didn't really make a difference but in all fairness, I probably didn't try it long enough.
I truly believe that if you tackle it full on now, at your age, there is no reason to believe that you can’t turn it around.
The low fodmap diet wasn’t a thing when I was first diagnosed. We were just told to add in more fibre (which we now know will,often exacerbate symptoms) and reduce stress (easier said than done!).
Low fodmap definitely helps people. Have you downloaded the Monash app? If you stick to eating all green lighted foods for 6 weeks or so you will most probably see a great improvement. Ideally, it is best done with the help of a state registered dietician. There are also some great low fodmap support groups on FB.
I am sure you can tackle this and achieve your dreams and ambitions 🤞
Thank you for your kind words! I certainly hope so and also wish that you find relief with your symptoms too
I asked my GP if I should try the low FODMAP diet but she suggested that I wait. I have been recommended a blood test and a stool test for H. Pylori after discontinuing esamoprazole for a couple of weeks. I asked about SIBO but she said we could discuss that once my test results are back. At this point, I've given up on getting cured and don't have much hope, but will see how it turns out
Hi rustydog, I hope you're managing IBS and have been doing well!I wanted to share that my H.Pylori test came back positive. Took a whole month to get it done and chat with the GP! They'll put me on antibiotics for a week, so fingers crossed some of these symptoms ease up... I am trying to stay optimistic but don't want to set my hopes too high. Let's see.
My Doctor prescribed Fybogel twice a daily. It's made life a lot easier for me. Stools are better formed and less sticky. I have less accidents as well. I still have the occasional hiccup but these are much more manageable since taking the Fybogel
This is a late response to a months old post. I hope your situation has improved, you have so many awful symptoms. I recognize some of them, as I have IBS-C and SIFO (fungal overgrowth), poor motility and leaky gut. An abnormal amount of yeast was discovered through a comprehensive stool test, as well as lack of good bacteria. Doctor prescribed a high dose of Nystatin capsules. Within a week the bloating , gas and pain were diminished, then went away. I had to cut out all things that yeast feeds on. My skin issues (rosacea and athletes foot) are almost gone and my depression has lifted. I am staying on Nystatin for 4 months, before we move forward to start treating sibo and healing leaky gut. In the mean time my doctor recommended that I take high dose magnesium bis-glycinate caps at bedtime and motility pro cap first thing in the morning.My life is better now than it was 6 months ago but have a long way to go. The ibc-c is controlling everything, and slow mmc transit is the suspected cause. Also low stomach acid, for which I take betaine-hcl caps each meal. But treating the yeast overgrowth has been a huge win so far. Wishing you well, best wishes for the holiday season, from Canada
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