Still Suffering.: Still here after all these... - IBS Network

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Still Suffering.

pwllmawr2 profile image
pwllmawr2

Still here after all these years and still with severe lower abdominal pain, now worse than when I joined all those years ago, had more tests and a CT scan last year again nothing physical showing according to the consultant.

Had an attack yesterday severe pain while sat on the toilet, quite solid stools at first then bad diarorhea, pain eased slightly for a while.

Back in July had last severe bowel pain attack in the middle of the night, leaving me with really bad pain in right side of lower abdomen, had to call and see GP after three days as pain was so bad had unable to bend over to tie shoelaces, GP thought I had appendicitis’s sent me straight to hospital, after being prodded by three doctors conclusion was they thought I had a hernia, anyway had a ultrasound scan last Monday after five months waiting, and yet again nothing showing.

It’s so annoying when it’s getting to the stage where the doctors appear not to believe what I,m saying about the pain even my wife is telling me it’s all in the head.

I’ve really had enough.

15 Replies

Hi there it’s not helping saying it’s all in your head !! It’s an awful painful thing to have ended up in a and e few times . Have you not been given anything for the spasms ? If there’s nothing showing up on the tests then at least they could do that ! The pain does make you miserable and scared and it just gets worse , keep on at them there are meds you can take , don’t give up ! X

Well, I believe you. I have no answers but you are not alone. It's not in your head it's in your f*cking bowel.

Thanks Maureen.

Pansy2 profile image
Pansy2 in reply to Maureen1958

Maureen your spot on lol x

Forgot to say 20 years ago when it all started they told me it was because I was depressed !! I said it’s the pains in my gut making me depressed , so obvs all in my head has to live with it ever since x😔

pwllmawr2 profile image
pwllmawr2 in reply to Pansy2

Hi Pansy2, thanks for the reply, I take peppermint Capsules and have bought a course of pro biotics to try, perhaps all that has been going on this year with covid and redundancies at work it could be stress, looking forward to a few weeks off at Christmas so I can get out and walk the Welsh mountains where I live,

Pansy2 profile image
Pansy2 in reply to pwllmawr2

Hi there if the colpermin don’t work as for something else ! I live in Shropshire and love the great outdoors , the walking in nature will do you good !! X

Have you been getting any help with your IBS? Here is some information about IBS that I have shared with others in this group in case any of these tips are of interest to you:

IBS can be due to a number or combination of factors - these can be stress (including stress from early life experiences) which impacts the communication between the brain and the digestive system. There are lots of free webinars online at the moment regarding mindfulness meditation which might help. Plus you can ask to be referred for CBT or something similar to reduce anxiety - I would have thought online appointments are available. Exercise can play a major role in IBS in terms of reducing stress, helping your gut microbiome and regulating bowel movements.

There is also not absorbing certain types of carbohydrates called FODMAPs very well, the residue ending up in the colon and bacteria feeding off them causing symptoms. Ordinarily feeding gut bacteria is a really good thing - when you feed good gut bacteria these produce by-products that have great health effects in the gut and throughout the body. However, in some people with IBS bad bugs might have the upper hand over good - these bad bugs may cause symptoms such as excess gas, pain or disordered bowel movements. There is an interesting infographic on this here:

gutmicrobiotaforhealth.com/....

This is why it’s worth trying probiotics such as Alflorex (which has been scientifically studied for IBS) or Symprove to crowd out the bad bugs and make their numbers die down. If that doesn't work you can try the FODMAP elimination and reintroduction diet. This is normally under the guidance of a nutritionist via GP referral - this may not be possible at the moment so you can read about it online. If you download the Monash University FODMAP app and Kings College fodmap apps, they will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities, increasing over a 3 day period and wait up to 4 days for symptoms. I go much slower than this - only introducing a small amount (1/4 to 1/3 of a normal portion size) of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms for longer and then try to increment again . I've read your microbiome can adapt to handling a new food if introduced very slowly and your bad bugs are under control with a good probiotic. Ideally you want to eat as many FODMAPs as you can since they are good for your health. Many people with IBS don't have diverse gut bacteria - it has been found that people who lack a diverse microbiome are more prone to diseases in general. In the long run, if you can get your symptoms under control, the ideal situation is to have a very varied diet - lots of different coloured fruits and vegetables, a variety of protein and carbohydrate sources including cereal fibres. This may seem a long way off, but with the right treatment all of this is possible. Last year all I could consume to control my IBS was white rice, protein and limited low fodmap veg. Using the approach above (particularly introducing Alflorex) I am now able to consume far more foods - more than I've ever dreamed of including wholewheat bread which is unheard of for me.

If you are also suffering from pain, you may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:

iffgd.org/lower-gi-disorder...

It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, but this can be helpful in people who are diarrhea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain.

You may also find assistance with anti-spasmodic medication such as mebeverine (Colofac) or enteric coated peppermint.

You can find some info on self management here:

theibsnetwork.org/the-self-...

If all of the usual IBS remedies fail and you are experiencing diarrhea, it is worth getting tested for BAM (Bile Acid Malabsorption), which can cause constant diarrhea - there is a separate test and treatment for that. Good luck.

pwllmawr2 profile image
pwllmawr2 in reply to xjrs

Thank you thats really good information that you have provided, I will work out the FODMAP diet and give it a try, I have been diagnosed with Coeliac Disease and have been gluten free from the past ten years or so, however my symptoms have started getting worse in the last six months.

xjrs profile image
xjrs in reply to pwllmawr2

If your symptoms have changed/worsened, it might be worth contacting the GP again if not done so already. They may want to re-run some tests.

pwllmawr2 profile image
pwllmawr2 in reply to xjrs

Hi xjrs, spoke with a GP about six weeks ago, explained that I was waiting for an ultrsound scan, which I had last week, I explained the pain was keeping me awake at night, once again she went through my symptoms and prescibed Zapain pain killers, and yes they do help, however if I take four or more in 24 hours they make me constipated, I had blood tests at the hospital back in July when I was sent for possible appendicitus, blood tests all normal, every time I have bloods done they always come back as normal, I get checked once a year due to the Coeliac disease they like to keep an eye on my iron levels,

xjrs profile image
xjrs in reply to pwllmawr2

Good that they are keeping an eye on you. Hope you find something that helps.

It most certainly not in your head, IBS is absolutely awful and If you want proof then maybe show these people the book written from Professor Peter Whorwell - Take control of your IBS. Its not enough that you have to cope with this illness, and now also non believers - absolutely devasting. I have been through all that, its really not nice.

The only medication I have found helpful is Mebeverine - which is something I do find very useful, along with avoiding certain foods.

I really hope you get some support soon, its really not nice for you

Best wishes

Debs

Hi Debs,Thank you for your reply, I have tried Mebeverine didn’t seem to make any difference, think I will give the Fodmap diet a try.

Have you tried any other smooth muscle relaxants? Alverine or Pinaverium? or maybe Antispasmodic Meds maybe more helpful like Dicycloverine?

Good luck with the low Fodmap diet, it wasn't much help for me but lots of people do benefit a great deal from it

I hope you get some relieve soon

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