Horrific mornings

[XDjames]

Just a rant really in case anyone has similar experience.

Every morning, without fail, is a nightmare. Regardless of the previous day and how I feel when I go to bed I wake with pain from nasty to severe to excruciating and need to expel the alien before I can think off getting out, by which time however I slept I feel shattered -and sore. Always there's wind, sometimes lots of wind, can be extreme high pressure, pressing just the right hurty button inside and so much that I can't believe what on earth is causing it no matter what I eat/don't eat. Typically ~3 hours before I start to feel human, on an amazing day it's hour and a half and on a terrible day it's longer, if at all. I always wake a couple of times during the night and need a couple of paracetamols and then usually more when I wake up. aware of the max 8 limit and don't risk codeine.

Don't sleep? Go to bed 3 hours early so I'm ready by a normal time?

Curious if anyone else has such experience and how they deal with it.

[BabsyWabsy]

Sometimes this happens to me. If I eat late/too much I am cramping and on the loo by 3.0 am. Very rarely, I might also vomit, but this is uncommon. On a normal night, I am up every couple of hours anyway for a pee (BP meds). This morning, 5.0am. cramps and I am trotting to the loo. Great innit? You are not alone. It should settle within an hour or two, but I may be trotting again after breakfast. It is very annoying and inconvenient. I get it. We are a similar age group.

[Jackie1612]

sorry that you are going through this XDjames.

The mornings have also been a nightmare for me. (I do not have pain at night, though, so I am fortunate). Sometimes I could not get out of the house until late afternoon.

I decided to try amitriptyline in desperation.

This has helped a lot with the pain. I don’t know whether you have tried it? It took me a while to build up to the low dose of 10 mg at night.

The side effects have taken some time to sort out as it does cause bad constipation. I take four Dulcoease tablets a day, it’s a stool softener, which helps. I tried Dulcolax, but that caused severe pain.

Amitriptyline sometimes does not work and I don’t know why it is inconsistent.

Despite all the side effects, my life is much easier with it than without it and I can eat, for example, eggs, which I have not been able to tolerate for a year or so.

my GP agreed to put amitriptyline on repeat prescription because at my age, I’m nearly 75, it would not cause any harm.

[Frasina]

I do not have your issues any more, however, around 8 years ago I did and it lasted for around 6 months; (I documented it so I can refer back if and when). I saw 3 different GP's during this time - all saying it was just a bad flare of IBS and I needed mebeverine, imodium, paracetamol and if stress is causing it, amitriptyline (which I only took for 2 weeks as it had side effects).

The GP's were right on the stress front (not anything else I may add), so I decided to try some counselling as there were times I did not manage getting to the loo early morning and even if this happens at home, it is soul destroying. Like you, I could not leave my home till midday most days. The pain was very bad and I was at my wits end. I tried all the OTC meds for wind as wind pain is excruciating when bad, I even did a 'white diet' for a few weeks which helped but long term not the road to go down.

Miraculously after this time frame, things settled a bit and I continued to have 'mini flares' lasting a few weeks until 3 years ago when everything got much worse again. This time I paid to see a gastroenterologist - I had no blood but had lost a stone in 4 weeks which for me was very alarming. He put me on the 2 week pathway back on the NHS for a colonoscopy and I found out that I have patchy pancolitis as well as IBS. Of interest, is the meds I am on for the colitis has helped the IBS and although I still have 'mini flares' they are just that.

In my case, stress exacerbated the condition for sure. So, my thoughts are that GP's (unless they suffer badly too) have no idea what we go through and I sympathise with how you feel right now. You can self refer for anxiety counselling online which is free and helpful. But, if you are concerned it may be more than IBS, see a gastroenterologist if you can.

[xjrs]

My IBS was experienced as overnight/early morning mid to lower back pain. This meant that I struggled for years to sleep and the only way that I could sleep without pain was if I could sleep standing up. Considering I am not a horse, this wasn't possible! The timing was when the bowels were at their most active preparing for a BM in the morning. If your bowel nerves are sensitive and easily triggered, this is the time that they will be aggravated the most. Being low FODMAP helped for a while, but in the end it didn't matter what I ate, I still got the pain (that is the draw back of being low FODMAP for years, since it compromises the microbiome and makes IBS worse in the end).

I'm not sure if I have mentioned this to you already, but 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 probiotic have helped me with this intestinal pain.

The reason why Alflorex helped me is that my IBS started with a bout of holiday food poisoning. This led to a gut bacterial imbalance, which is true for many IBS sufferers. This imbalance can also be caused by other things such as restricted or unhealthy diets and stress. When bad bugs dominate the system, they can oversensitise the nerves in the gut too. When put together with visceral hypersensitivity, with the brain incorrectly interpreting signals and then the gut sending even more signals than it should, it ends up being a double whammy effect. If this is true in your case, something like Alflorex might help to bring things back in balance. When I took Linaclotide, it reduced my pain by 50%-60%. After taking Alflorex my pain reduced to zero and only comes back when I am challenging with new foods and before my body gets used to them (or I have to continue to give them up). Alflorex which has been scientifically studied for IBS has made me more tolerant to a much wider range of foods. Having a more diverse diet increases bacterial diversity in the gut. Bacterial diversity helps to additionally keep bad bugs away, in turn helping IBS symptoms. There is also the Nerva gut directed hypnotherapy app to consider. This helps to calm intestinal nerves.

[XDjames in reply to xjrs]

Thanks: I had bad experience of amitryptiline (the horrible head I got afterwards, I was taking ti for sleep tough so it may need a different dose). Also I seemed to have a bad reaction to alflorex after one dose. I will look into these again; what dosages did you use? Yes, visceral hypersensivity describes it perfectly. All the discomforts amplified by 1000. I'll take a look at Nerva.

[xjrs in reply to XDjames]

I reacted to amitriptyline after 1 pill (the lowest dose - 10mg is used as a nerve pain agent I believe). After 18 hours I had severe heart palpitations and was told not to take it again.

Interesting you had a reaction to Alflorex after 1 dose. What was the reaction? Everyone's bodily makeup is different in terms of what may be missing/needed and intolerances, unfortunately.

I had a very bad reaction to a high dose multi-strain probiotic (actually vomited) and Alflorex is much lower dose single strain, but as I said everyone is different.

[XDjames in reply to xjrs]

I can't recall the effect but I was taking it a couple of times before a horrific period of being barely able to sleep, get out of bad, calling 111 etc. and ending up wit a scheduled colonoscopy that found (of course) nothing. Hard to say Alflorex was the cause but I had to consider everything I was consuming. I'll try this Biokult for a bit first.

[xjrs in reply to XDjames]

Some people get on with Symprove.

I had no side effects from Alflorex and after 1 week my pain was gone. I couldn't believe it (though I'd also been on Linaclotide for the time for the full pain effects to take place which was at least 10 weeks and that reduced the pain only by 50-60%) . The pain only comes back if I am challenging myself with new foods that I am still intolerant to or before my body gets used to them.

Alflorex is a low CFU probiotic. I've read that people with IBS tend to get on better with lower CFU probiotics (<10 billion). Alflorex has 1 billion bacteria. It's just that the strain is a strong one, normally passed from mother to baby during a natural birth to prime the guts defences which is why it can be good at fighting infections/imbalances.

[XDjames in reply to xjrs]

Thanks: I drew a blank with Symprove, despite sticking with . I'll try Bio-kult for a bit. This doi.org/10.1186/s12876-018-... suggests it works well, plus some of the other posts I've seen. There is also some literature out there on Alflorex. Maybe my timing was wrong and I might give it a go if bio-kult doesn't move the dial.

[Winke]

I am just am same as you wake up every morning to pain in stomach and now my hip as started giving me pain i thought this growing (84) was supposed to be ok i think some times i wish i was not here But hat the hell i am till here and moaning 😜😚😚

[Winnats]

Sorry you're having such a dreadful time XDJames. One thing that's helped me with the pain is taking Biokult 'Everyday' probiotic, 1 after breakfast, 1 after evening meal, though a higher dose can be taken. They're a bit pricey but worth it to be able to function without pain. You're right to keep away from codeine as that'll make you more constipated for sure. I see Jackie1612 mentions amitriptyline has helped her, but it made me too unwell to persevere with - it's so difficult and chancy to find what helps. I also find that what I eat makes little difference to symptoms. I also take Laxido and a small amount of Fybogel which seems to keep things more regular. Hope it eases off for you soon.

[XDjames in reply to Winnats]

Thanks: I have biokult, will try as you suggest.

[Liz-D]

I feel for you. On top of IBS,I have Fibromyalgia. The Gremlins associated with these conditions regularly scheme against me. Every night I'm up at best 3 or 4 times, at worst, I'm up every 30 to 40 minutes. Pain is my biggest cause of aggro as is RLS, the cramps can be damn near tear inducing. Oh, and pretty toxic.On the meds side, I take Paracetamol, Ibuprofen and Codeine at tea time along with my Fibro and maintenance meds. I'll take Paracetamol, Ibuprofen and Codeine at around 9:30pm so that, when I go to bed just after 10, I'm a little less painted and grotty. I only take the Codeine those two times, I know too much is a waste of time. However, if things are really bad in the early hours I'll take Ibuprofen and Paracetamol. I have to eat though, in order to have Ibuprofen so a wee snack while I'm up. (Makes for extremely happy cats, I can tell you.) If I don't have the Codeine I know things will be very much worse for me. Maybe giving them a go, along side the Paracetamol would help you too. Hope you find the relief you need. L.

[Luisa22]

I used to be quite frightened, every morning because I didn't know what my body was going to give me or what to expect. even though I'd felt OK most times before going to sleep, and had slept fairly well (6-7 or even sometimes 8 hours straight through.)

But mornings always felt like having a bucket of cold water thrown on me.

So much so, that I dreaded getting out of bed. I would lie there feeling nothing, and know I had to get up, and face it all again.

But that did kind of evolve into a situation which wasn't as bad. So now, I accept that I won't have a perfect bowel movement, that I will get a bit of pain before "going", and that I will also feel strange, alienated, and a bit down mentally (until I get on with the day.)

Out of the blue I can sometimes get surprises which are positive.

I only take homeopatrhic remedies for it all, and careful diet, otherwise I take nothing.

So things with my IBS, while not perfect at all, are acceptable now, and occasionally normal.

Changes like that can happen so don't give up hope, and I wish you well with whatever you try to help you.

But do be careful with any foods which irritate your gut and you know or suspect they do, the day or evening before. I eat very simple fairly bland home cooked foods, but can eat a number of vegetables now and have a fairly healthy balanced diet.