In the middle of it: Hi everyone, I have had... - IBS Network

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In the middle of it

IBS-D-Sucks profile image
32 Replies

Hi everyone,

I have had IBS-D for over 40 years and feel like I am at the end of my rope. I'm in the middle of a bad flare up and had a panic attack at my doctors yesterday. She prescribed sertraline, alprazolam, and Viberzi.

I have been reading about the sertraline and am scared of taking it. I swear if I have any more diarrhea than I already have, I will kill myself. I just can't handle it anymore.

I need some hope guys. I'm just so unhappy, frustrated, and don't trust medication anymore. Does sertraline help, or will it just make me worse?

I've tried so many things. This bastard is still giving me hell. Help.

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IBS-D-Sucks
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32 Replies
Mrs-Gee profile image
Mrs-Gee

I have been taking sertraline for 4 months now. The pamphlet that comes with it on side effects was scary and it put me off starting it but I eventually bit the bullet and started. For the first few weeks as expected a bit of nausea then that passed and started feeling calmer. My husband has noticed the difference. Possibly caused weight gain but then again could be post Christmas.

Luisa22 profile image
Luisa22

Yes, Sertraline is an anti depressant of the SSRI type. So it "does stuff to Serotonin". I know someone who had them and they were really helpful for him but he didn't have IBS D.

Someone else I know was prescribed it. She was always inclined to be constipated, though she doesn't have IBS. She was so pleased because the Sertraline cured her constipation tendency as well. She said she's never been more regular in her life! So that shows its likely effect on the gut.

I always suspect Setrotonin being out of whack for some causes of IBS in the first place.

If you have actual clinical depression that is different to having anxiety and or panic attacks or feeling really low because of IBS I wonder if other methods of handling your anxiety levels might work better for you? But I don't mean to say "go against your doctor's advice" here.

However, there are all sorts of things out there which can help with anxiety, from meditations, apps, counselling, yoga, breathwork, and even acupuncture etc.

Catlover16 profile image
Catlover16 in reply toLuisa22

We all know that anxiety causes IBS which then causes the IBS to be worse. Here is one idea we can all try which doesn’t cost a penny. The advice was given to me by a radiologist when I was having a bad time with cancer - write it all down. Don’t just write about now. Write your whole life story, starting with where you were born, your parents, your siblings, your childhood. Write it just for you, not for your family or publication, and put down your innermost thoughts. You will be surprised by what you remember and you may be surprised by what you are still angry or hurt about, but you will also remember happy times that may be lost to time. The survival instinct makes us remember the bad times, but we need to remember the good times as well. You don’t have to do it all at one go or every day even. Give it a go. I am 78 soon and have got up to my 40 birthday. A little way to go yet!

Luisa22 profile image
Luisa22 in reply toCatlover16

Thank you very much for that, Catlover16. It's strange you mentioned that because it is what I've been doing for a couple of years or more. I had no idea why. I just started doing it.

Have you seen videos by Dr. Gabor Mate? There are many, free on YouTube. He puts forward the theory that all our chronic illnesses throughout life, and some very major and life threatening ones, are caused by not being our "authentic selves" because of very early conditioned responses in life. There is no blame. It's just the way we have learned to live and also to gain approval from others.

There is a lot more to what Gabor Mate has to say, but what he says is easy to understand. I feel he has a message for us all. What I said doesn't do him justice.

Catlover16 profile image
Catlover16 in reply toLuisa22

I have headed my life story Me: I did it Their way - a play on Frank Sinatra's song I Did it My Way, because nobody can do it their way. We are always being somebody else - someone’s child, parent, wife/husband/partner/sibling and so on. We are never able to be ourselves, not even when we are alone. I am surprised at what memories were brought back and at times how much hurt, anger and disappointment is lying deep within my mind. No wonder our minds get in a twist now and again. Thanks for your reply.

IBS-D-Sucks profile image
IBS-D-Sucks in reply toCatlover16

Thank you! I’ve started CBT for anxiety and am doing better.

Jackie1612 profile image
Jackie1612

hi sorry that you are going through this.

I did take sertraline for anxiety and it did help the IBS. The diarrhoea was much reduced. I didn’t really notice the improvement until I stopped taking it when the anxiety went!

Sertraline did affect the condition of my skin and hair, but I did not have any other side effects.

Perhaps you should try it for a while?

No other medications have worked for me, but I am now trying amitriptyline because I have been bad with IBS for a few years. My IBS is more mixed now.

Have you read “When the body says No” by Gabor Mate? This might help. “ The body keeps the score” by Bessel Van der Kolk is good too.

Luisa22 profile image
Luisa22 in reply toJackie1612

Oh wow...strange you should mention Dr. Gabor Mate, Jackie1612 ! I just posted a reply above before I had read yours! Nice man.

IBS-D-Sucks profile image
IBS-D-Sucks in reply toJackie1612

Thanks. I’m in therapy now and doing better. My therapist recommended Tge Body Keeps the Score :)

xjrs profile image
xjrs

med.unc.edu/ibs/wp-content/...

The tricyclic antidepressants (TCA's) help with diarrhea and the serotonin reuptake inhibitors (SSRI's) help treat constipation.

It seems SSRIs might speed up motility which is the last thing you want for IBS-D. Maybe ask for a telephone chat with the GP to talk this through. TCAs (amitriptyline) tend to be more constipating.

On a side note, have you tried any good probiotics? Some that have been scientifically studied include Alflorex and Symprove. I've tried many over the years and Alflorex worked best for me. Many people's IBS is due to a gut bacterial imbalance.

Poshy profile image
Poshy in reply toxjrs

Hi xjrs

I have only been on this website a short while but you seem to be very knowledgeable with IBS. Is it your own suffering therefore research and findings that have enabled you to be well informed? I am impressed.

xjrs profile image
xjrs in reply toPoshy

Thank you Poshy. I have suffered with IBS for 27 years. As I got older my symptoms got worse and less controllable. I've tried everything known to man and made some big mistakes along the way including relying on and wasting money on not very qualified people to help me. Since these people made me more ill and I wasn't able to work at that point, I decided to make use of that time and take control of the situation myself by doing my own research. I now feel much more healthy and the condition is far more stable by working with the information that I found, though I still need to work around my residual food intolerances. I post on here to try to give people information to try to avoid some of the mistakes that I made, which slowed my progress. In the mean time, at the request of some on here, I've been putting this information onto a website so I can share it with others. I've been working on this for some time, but stalled on multiple occasions due to house renovations and two house moves. Hopefully I'll come out of the other side of that and be able to complete it to share on Healthunlocked this year.

Luisa22 profile image
Luisa22 in reply toxjrs

I would really love to see your website, xjrs Good luck with your projects in the meantime. and hope you get chance to finish the website too.

XDjames profile image
XDjames in reply toxjrs

The scientific study on Symprove is a Symprove-sponsored PhD student's not terribly impressive paper (based on my experience as an academic journal editor). While it was a worthy effort (so credit for that), the benefit indicated is marginal and it does seem to work for some.

xjrs profile image
xjrs in reply toXDjames

Interesting information XDjames . Also, just goes to show how personalised IBS is with known culprits for IBS such as an imbalanced microbiome, but there will be a subset due to other causes, which is why some regimes work for some but not all. I surmise that eventually IBS will be split into multiple syndromes with different tests and treatments for each.

XDjames profile image
XDjames in reply toxjrs

We need something like ZOE (which does not cover IBS) but for IBS. Personalised medicine for IBS should be a major growth area given the tech (e.g. body-worn sensors, AI etc.) that's out there and developing fast. Pubmed shows the same growth in academic publications with 'IBS' in the title as with 'heart/liver/pancreas' etc.. Given the impact this s****y condition has on so many people it's not fast enough growth. Much more research (ie. £) needed.

xjrs profile image
xjrs in reply toXDjames

Wow. You are preaching to the converted. One of the next things on my list to add to my website is how much wasteful, repeated research there is regarding IBS. For example, multiple countries with studies into FODMAPs, when there are already centres of excellence on this. You probably know more than me, but as I understand it, the problem with research, is it's organisation and management. Grants are made available and scientists apply for the money based on what they want to study, but no one is driving the research from above i.e. 'IBS' is the problem statement, x person has accountability for solving that problem, let's hire all the scientists and multi-disciplinary teams that we need to crack it, let's use individuals as the guinea pigs and look in depth into their physiology, microbiology, micro-chemistry etc. and find some commonality and split IBS into sub-groups (or a combination of sub-groups). Let's really understand what is going on at a micro level, the very first step in a chain reaction that causes symptoms and whether that first step in that reaction can be returned to a normal response.

XDjames profile image
XDjames in reply toxjrs

Yes, researchers compete for funding in their little area and if they can grow a team and launch their researchers to support the cause and work together (rather than fighting among themselves) a specific area can become a major research theme. The funders I know tend to identify themes that they want to grow (or shrink) and there is steer on this from a panel of researchers. So you try to show how your research fits in with one of these areas. So support to grow a research area could be (in the UK) tend to be first bottom up then top down. In some countries (e.g. Singapore) it's more like top down drive in areas where talent can be bought in (e.g. Dolly the sheep) to make a big impact in a sexy new and ultimately financially rewarding research area. I don't know how NIHR/MRC work I know folk who know and do this multi-(or rather inter-) disciplinary stuff in a different area, with patient participation groups and will ask them. So far all I can see on MRC/NIHR are amitryptiline and CBT, but UK Biobank -the mother of all longitudinal studies with PPGs- shows some more fruitful directions.

xjrs profile image
xjrs in reply toXDjames

Yes. It would be interesting to understand how the UK works. Thanks.

With researchers picking their own work, it's a bit like setting up a company and letting your staff pick and choose what they want to do each day, which would be unheard of, highly unprofitable, unfruitful and without direction. There should be a goal (solve IBS) and management is needed to bring skills together (the researchers) to solve the problem to a conclusion (with targets etc to ensure value for money). What I learned from management courses is that detailed oriented skilled workers should be left to do what they do best (the detailed work of research) with others doing all the coordination, bringing different people together, tracking progress, setting goals, creating new goals based on results to conclude a topic and solving problems between teams to ensure no blockages to reach the end point. Otherwise it's a bit like having sheep running around a field all day. No wonder there has been very little progress regarding IBS over the decades, since no one is driving the ship. After all much of funding comes from the tax payer and should be working towards solving real life problems (to a conclusion) for sufferers and only that. Not, oh, I'll try this or that, which ends up with concluding 'more research is needed' but no one ensures that that takes place, until the next research team has the mind to look at it (which could be years later).

XDjames profile image
XDjames in reply toxjrs

Not sure how much you know but the majority of research in any discipline/topic at least in the UK is driven by academics, wherever possible collaborating with other stakeholders (because they get more brownie points and deliver greater impact, as well as having more fun -fun is a big motivator).

Universities pride themselves on the quality of their research and there is a QR component (quality of research which counts publications and tries to quantify real world impact -again more brownie points according to lives saved, £zillions generated, new jobs etc).

This is a large chunk alongside student FTEs (bums on seats -overseas ones are better, never mind the quality feel the width) and very generous overheads on research funding from a range of sources. These sources include UKRI (MRC), NIHR, EU and charities.

Universities are (badly run!) businesses. In the end while they prioritise teaching (rule #1: don't f**k up, rule #2 it's diminishing returns, it's really hard to get promoted to top levels just for teaching so do it professionally but don't kill yourself doing it ), the route to the top is actually through research and competing for what's out there. There are even income quotas for research according to level - usually not enforced but sometimes they are, even with suicidal consequences. So it's up to academics to find ways to extract money from funders in a way that grows their career. And hopefully they derive a lot of professional satisfaction doing it along with the miseries of huge investments of time for a failed proposal. There are many agencies that direct research from above and tell their researchers what to do but I find relatively few in the UK, they have largely been privatised and so compete directly with academic institutions.

BHF, Parkinson's, Cancer Research etc. support research but I think Guts Charity etc. are small beer. There's very little media excitement about IBS or other such conditions unfortunately. Everyone wants to save the planet and defeat cancer (worthy causes but there is other stuff to do).

xjrs profile image
xjrs in reply toXDjames

XDjames , thanks for explaining. From what you are saying it is very much bottom up. The statement: "So it's up to academics to find ways to extract money from funders in a way that grows their career" - is very telling. This is very much about individual needs and a gravy train, so no wonder there is very little in the way of direction or overall progress.

I know what you mean about lack of media excitement regarding IBS.

There are so many incurable diseases that must be placing a massive burden on the NHS, resulting in work sick days or rendering people 'economically inactive' - that's just the bottom line, but there is also a huge amount of suffering involved. Actions towards reducing suffering should be at the forefront of everything that we do. It's pretty shocking that there seems to be no one in government coming up with a strategy to tackle them and drive that strategy forwards, so that funding isn't just about advancing someone's career, brownie points or doing things for 'fun'.

xjrs profile image
xjrs in reply toXDjames

XDjames , I'm registered with UK Research and Innovation MRC news Update and came across this when digging through their links in their latest email:

hrcsonline.net/wp-content/u...

It's the latest report on percentage of spending of research funds on specific health categories. Page 31 shows that "Oral and gastrointestinal" is around 2% of the overall funding. Note that this includes 'Oral' so 'gastrointestinal' will be less than this.

I've just compared this with number of sick days per health category from NHS Digital interactive tool:

app.powerbi.com/view?r=eyJr...

Month on month comparison peaks at around 8.8% of all absences for Gastrointestinal Issues (May 2019-Oct 2023)

Month on month comparison peaks at around 8.9% of all absences (2019 months only - pre-COVID)

Purely from a sickness absence perspective, Gastrointestinal Issues are under funded by much more than 4 times. This may be increased further from stats into non-working sickness.

It doesn't take the publicity of the condition for government officials to work out where funding is needed. The figures speak for themselves. It seems public health research has really dropped the ball on this one.

XDjames profile image
XDjames in reply toxjrs

That's impressive, good spot! It's what I couldn't find myself. I'm not sure even my colleagues in that field know those sources. The unmatching percentages are disappointing but not terribly surprising given more publicly understood research needs (cancer, heart disease, infections diseases ). The Guts survey jla.nihr.ac.uk/priority-set... links to the results, which is a kind of research roadmap that (if the researchers are collaborating well enough rather than competing) should lead to large i.e. multi-£m research projects such as the 'programme grant' -which is just about the most serious type of UKRI funded research vehicle -and lo here is something I was looking for i.e. a 'research strategy' ukri.org/who-we-are/mrc/who... which alas is high-level rather than topic-directed.

I'd love to get the raw data behind the UK HRA. For academic research, some of the UKRI sub-agencies publish details of funded research -'grants on the web' but I can't see anything on MRC. I think I'll look for a tame researcher who might know how/where to dig.

xjrs profile image
xjrs in reply toXDjames

Thanks   XDjames . I saw the results of the Guts survey. I was really disappointed to see that the matter of food intolerances (and how to fix those to be able to eat more normally) which affects nearly every person with IBS, was never mentioned. It also doesn't mention about the 'IBS state' in a person and trying to reverse that state to a normal response i.e. a cure. Some of the questions I could answer myself off the bat and research has already been conducted (e.g. visceral pain in IBS etc.) There is far too much repetition and going around in circles with IBS research. There is only one question: what causes IBS and how can IBS be reversed (cured)? From this a number of sub categories, multiple causes will open up. This can only be found out by studying as many sufferers as possible at an individual level by multi-disciplinary teams looking at all the connections to the gut including neurobiology, microbiology etc. and start noticing the common threads, whilst also firstly looking at all the research and answers that have already been found, to avoid waste in both time and money.

I was invited to be part of the Guts survey panel, since I'd previously stated interest in getting involved, but this had to be in person and in London, so I didn't attend. They wouldn't entertain the meeting being held on Zoom. Since a lot of people with IBS find travel or staying away or having to eat out a challenge, I thought this was short sighted.

I wasn't aware of the James Lind Alliance, so thanks for that.

It is difficult to know how to influence change without being a 'name' in the medical field or a celebrity.

In the past I've tried contacting senior officials (such as Professor Dame Anna Dominiczak) regarding approaches to research management and even Chris Whitty's office, but then COVID hit and I felt it wasn't worth pushing at that time and really not sure what influence I'd have.

Poshy profile image
Poshy

I must admit in my getting old age that I am right off drugs really though they appear to do a job. But at what cost I ask myself? They do not right a wrong which is IBS in our case but there are not many solutions either, only costly ones. Anything artificial can surely not be good for us? The jury is out......

Superzob profile image
Superzob

Can’t speak for anti-depressants, but I would certainly recommend Alflorex for IBS-D. It took 2 months to work for me, but now I don’t generally get diarrhoea, but some urgency due to constipation! But, overall, I think this is a better option for me.

On the issue of anxiety, IBS is certainly made worse by that (but not caused by it), and having IBS causes a vicious cycle which results in increased anxiety, especially with IBS-D. I believe Amitriptyline (a tricyclic anti-depressant) is often prescribed for this (and evidently works in a lot of cases), but it would seem that any means of reducing anxiety would help - it would reduce the “flight or fight” stress response which exacerbates IBS-D. There are a number of non-drug options for this which you might wish to explore with your GP.

Whitesugar profile image
Whitesugar

Have you been tested for Bile Acid Diarrhoea? It is greatly misdiagnosed as IBS

Scinder profile image
Scinder

Hi I have been on steraline for about 18 months after severe anxiety attacks. I only take 25mg, I cut the tablet in half! I find it does help calm my IBS down as well as helping with my nerves. I don't like taking tablets either but it was the lesser of 2 evils in the end. I would say try them and see, just monitor how you feel.

Squash56 profile image
Squash56

Hello

IBS D is dreadful I have suffered for years, plus anxiety, not sure what started first. Went through lots of tests for it to be confirmed IBS D. I battled on for years but then my anxiety got worse and panic attacks on a morning. My GP eventually persuaded me to use sertraline, started on low dose worked up to 50mg a day. It was difficult for a few weeks but worth it in the end. Within a week even on the low dose my bowels improved. I’ve now been taking it for a year. My bowels remain much improved but do on the odd occasion get D. I do still have some anxiety but able to cope as don’t want to increase the dosage, however I am concerned about coming off it. I understand it will need to be carried out VERY slowly.

Overall I would say it’s worth it for me as I feel like a new person able to cope as I did in the past. Good luck

FrostGyre profile image
FrostGyre

What do you eat and drink in a typical day?

Kariss profile image
Kariss

Hi, I have suffered from IBS for many, many years and I was on sertraline a few years back for anxiety and depression. Every drug which has to pass through my stomach usually upsets my IBS but after a couple of weeks of slight nausea as it got into my system, it was fine. I stayed on it for about two years with no repercussions. For me it was a good medication, but we are all different! If you try it I hope it works for you - good luck!

-lilybet profile image
-lilybet

I’ve heard and seen good results from sertraline from my daughters perspective she suffers terribly with CPTSD and other mental health conditions…. Can I ask why you’re scared of taking it ? Do you have a good support network around you?? X

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