Steroid use for chronic IBS

Digestive health
1

Can anyone advise me on this one, I have chronic IBS, its not just flare ups, its there permanently and I find I need to open my bowels up to 22 times a day, round the calendar, nothing i have tried so far has alleviated it apart from a short course of steroids, which were very successful, my symptoms abaited greatly, but the Consultant said unless i have chrones deseise she could not recommend them and even dissaded my GP from prescribing them, is this correct, that you have to have something like chrone?  

As I would say my condition is equally as dehabilitating as chrones and if the steroids actually help, where is the argument?  Does anyone have any experience of them being used for IBS and feels happy to comment?  I also have a prolapsed bowel, which is a nightmare, despite major surgery which was very little help.

2

Poor you, that sounds awful I can't say I have ever tried steroids for my problems, but I do know that continued use isn't good for you. That being said, if they work it seems very unfair that the consultant isn't allowing you to use them.

You condition sounds similar to mine, except I feel the need to open my bowels but I struggle to. I constantly feel like my tummy is heavy and I bloat regardless of what I eat. Like you I suffer daily, regardless of what I eat, or what I do, what meds I take. I have recently also discovered I have a prolapsed small bowel too. I am currently waiting for some further tests in January to hopefully find out what the problem is and a solution. I have a very low quality of life the same as you.

Have you had any tests to confirm what you have? IBS is an 'easy' diagnosis and is often misdiagnosed. I have only started seeing progress since I changed GP's because my previous one fobbed me off with IBS, or a 'phase'. I would suggest maybe asking to be referred to a different specialist, the hospital in St Marks is said to be the best. The tests are god awful and I don't want to have to go through them all again but if it improves my quality of life and I get some answers then I will do them.

I hope you get some answers and some relief soon. Its not right that the consultant is preventing you from taking something that is proven to work without suggesting an alternative way forward, especially when it is affecting your every day life.

If you ever want someone to talk to, I am here. I have battled my condition for 18 months and know how lonely it can feel

Take care,

Becki

 

3

Hi Becki, and thanks for your response, like you I struggle to open my bowels despite my frequency as I strain furiously and can't help this as it's 'there' irritating me, various Consultants have told me not to and don't seem to understand that when you need to 'go' biologically, you have to, simple as that.  I wouldn't worry about the prolapse, I had surgery for mine and it did stop some of the bleeding and afterwards I felt more 'comfortable' although in my case it wasn't particularly helpful but we are all individuals after all and your reaction to any proposed surgery may be different.  It's not painful, I didn't feel a thing ;-). Good luck!!  Fi xx

4

You sound exactly like me, it's miserab;e isn't it have they found out the route cause of you struggling? I have read that prolapse repair only works if you stop straining, so the cause of it must be fixed before surgery is considered. They won't operate on me due to being too young, but I am going for a third opinion in January which will hopefully find out why this is happening and then repair may be discussed if needed.

If they have only diagnosed IBS and aren't helping you deal with this then of course your surgery won't have  helped you because they haven't addressed the cause of it in the first place! I would recommend going to a specialist, St Marks are known for finding out what is wrong when other specialists are at a loss because they deal with people like us all the time.

My symptoms are always there but i have noticed a great difference when I cut out gluten. I don't have an allergy to it but it is very hard on the digestion, gluten free tends to be lighter and easier to digest. Maybe that will lessen your symptoms like it has mine? I can't eat big meals either, I graze throughout the day to avoid the heaviness I am plagued with. I also don't eat a lot of rich foods and avoid most meats as well as they take longer to digest.

I really hope you find the cause of your problems and your health improves, I have been battling with depression due to this condition, it has completely taken over my life so I can completely empathise with you.

Never stop pushing for answers and if the doctors don't know, ask to be referred to someone who does. It is appalling that someone so ill has to battle the system to be taken seriously, but our lives depend on it.

All the best for the future xxx

 

5

THanks Becki, I've had four years of this, constantly being on the loo, I am amazed that I cope, I have photography, poetry and art hobbies and manage around my flat, the chores, get out when I can to see friends and family, but confess to being bedridden for large parts of the day as the straining, and the frequency, which the medics have literally drawn a blank over, so we are no nearer a sollution, is so exhausting and painful. I get deferred leg pain that is quite searing, as is the rectal pain itself.

One or two things occuring, I am vegetarian, but eat some bread, largely pittas, occasionally rolls, fajitas or wholemeal hovis actually, but when I requested allergy testing it was dismissed by one COnsultant and ignored completely by another, so i am in the process of finding a new consultant at Bournemouth hospital as opposed to Poole, which is nearer to me, naturally, but can you tell me where this hospital you mention is located, its probably out of my catchment area, having said that.

I am also a sufferer with schizophrenia and have had this used as a 'blanket term' to dismiss very real physical symptoms and twart a full investigation into them, its dreadful, I was even accused of 'forcing myself' to use the loo prior to a 'hands on' examination under aneathetic, when neither colonoscopy nor xray had shown up the fact that I had a full prolapse, which was found at the hands on, and subsequently, about a month later I had a ventral mesh retropescy operation which was supposed to put it right but failed to address it as I am still needing the loo and straining rigorously up to 22 times daily, round the calendar.

It's distressing, but as the medics have no answers, i live with it as best as possible, although thinking of asking about anti spasmodics, this silicol gel that another forum user was mentioning, and also now that I have binned off the former consultant, about my having steroids for a short spell again, as wil try anything.  i hope you feel better soon, Becki but know its a long hard road sometimes with little sollutions being presented by the so called experts, isn't it? Best wishes, Fi xx

6

Hi Fi,

Apologies for the very delayed response, things went a bit manic leading up to Christmas and then I didn't have a very good Christmas and I am not stressing over my tests which are now next week!

I hope you managed to have a good Christmas break despite your health problems, I hope yours didn't get in the way too much like mine did.

The hospital I am going to on Monday is in Harrow, in London. I am not sure they have a catchment area as I have been told by my GP that they see patients from everywhere. They are said to be the top specialists in this field and I believe see patients from as far as Scotland! I would definately ask to be referred to them, they are NHS funded also.

I am getting myself all worked up over the tests, I have had them before and the only reason I got through them was because I believed I would get answers and a diagnosis and not have to go through them again. But here I am, with no answers, a worsening condition and having to have them again. I have no hope of ever finding out what is wrong and don't think i will ever be normal. I have a horrible feeling these tests are going to be a permemant feature in my life and I don't think I have any self esteem or respect left to face them again. They are so humiliating, my dignity was stripped from me when I had them the first time, I don't think I have enough strength to suffer the torture of them again. And there is no guarantee at the end of it that I will be any closer to normality.

I unfortunately don't have a choice, I have been told if anyone can find out what is wrong with me then they will be able to but after months of being told it is just a phase I am far from hopeful.

I will let you know after my tests how I get on and do my best to review the hospital and staff for you so you can make an informed decision if they are the people for you.

Hopefully we will find a way of living rather than coping with this debilitating condition. I am ready to feel 'human' again as I am sure you are!

All the best,

Becki xxx

 

7

HI Becki, so sorry for delay in getting back to you, I have tonsillitis currently, and feel like death.  To answer your question, it wouldn't be practical for me to be going all round the country visiting hospitals, but my new GP has done me a referral to Bournemouth hospital which I feel is more modern a hospital to Poole, where I was being seen up till now.

I have ordered some silicol gel from Amazon, it is not yet available up and down the country on prescription as they haven't rolled it out, but I have heard good things about it and can't wait to give it a go!

The Consultant I saw in gastroenterology, I really didn't feel had her eye on the ball at all, she prescribed me laxatives knowing full well I had a 16 - 22 times a day (no exageration) bowel frequency and although she claimed they 'bulked up' the stools, this was rubbish, born out by the fact that it gave me galloping diarrhoea!! Worse than I have to start with!

Originally, where I have mental health problems, the doc put me on sodium valproate, avoid like the plague as the topmost listed side effect, unbeknown to me, who was glad to be on something I felt would at last help, was diarrhoea!  And also increased aggression and possibility of developing a learning disability.  I am not joking, from the word go I had the diarrhoea and didn't relate the cause, was on them for three and a half years, no one thought to look at a side effect leaflet, including myself, I admit, and when the aggression etc started creeping up on me as well, they eventually took me off them, but I am convinced they were responsible for my developing the prolapsed bowel in the first place, a nasty and very powerful drug, evidently.  Although I have been off them for five months, I am convinced where I was on them for a long time, virtually unsupervised, and they are so powerful, that they are still working their way through my system, and if you look at another powerful drug, considered far more lethal, steroids, they stay in your system for over a year, so I have some hope that there may be some improvement in my condition later, but realise once you develop a prolapsed bowel a lot of the damage, sadly, has been done, and in my case, surgery was largely ineffective, which is a shame of course.

Anyway, Becki, persevere with your tests, I realise they are daunting, but will help diagnose what's wrong, or at least it pays to look at it that way.  Incidentally, I had proctogram and colonoscopy but it wasn't until the Consultant surgeon did a 'hands on' examination under anathetic, that they found I was heavily prolapsed, or fully, I should say, so whether that information is any help to you, I hope so anyway.

Look after yourself and feel free to contact me if you want to chat, all the best, I am heading for the covers now as throat feels dreadful and will until the anti biotics kick in a bit more, Fi xx