A rant: IBS is doing its best to destroy me

[XDjames]

This thing is reducing me to a gibbering wreck. It's relentless. Sleep messed up (all-nighter on Tuesday, I have enough will power to resist but could I even risk a sleeping pill not knocking me out if the 'discomfort' is too intense?). Guts feel like they are full of gaseous acid sludge, desparate to blow it out but can't, it's a lottery if I can start my day at all. Can barely concentrate, no energy to do anything but listen to the radio and hang on to the next day (tomorrow will be better .... ), weight has tanked, worried about what and when I can eat, GP can't help of course, wife says 'you have to get them to help you ......'.

'Miserable' doesn't come close, my wife is putting up with a lot, it has to get better and I know there are folk with far worse situations.

At least the weather is crap so I'm not missing a lot.

[xjrs]

Sorry to hear that. I think you'd previously mentioned wind. When you get these really bad episodes, have you tried Rennie Deflatine (suck 2 tablets)? It will tackle the wind, by breaking it up into small bubbles and may help with the pain.

I used to also sleep with a heat pad strapped to me. You can get ones that turn themselves off after 90 mins. Unfortunately, the manufacturer doesn't do the one I have anymore, but there will be others. Apparently heat can help to 'switch-off' pain signals.

We'd discussed Alforex before. I'd also mentioned Linaclotide (for IBS-C) which only acts locally in the gut.

[XDjames in reply to xjrs]

Thanks,

I have Windeze (same ingredient I think), hot helping so as to notice. I have an old-tech hot water bottle, may try that, thanks for the pointer.

I'll ask my GP about Linaclotide, might have an effect on the visceral hypersentivitity.

[Mutleyforever]

Hi XD, do you feel your discomfort/ pains are visceral hypersensitivity with slow motility or constipation if so, I have had some success in taking Duloxetine ( now on 60mgs daily ). The side effects for the first week were unpleasant, but after 2 weeks I have found a great difference. Over a year ago I was put on Imipramine but couldn’t tolerate, as I felt my insides were seizing up! This year I requested to try an SSRI and was started on Duloxetine and would recommend if you are in a similar situation. Best Wishes.

[XDjames in reply to Mutleyforever]

Thank. Motility isn't enough to clear me out -but I get bouts of D too. Anyway I certainly have VH, I'll ask the GP about that one, amitriptyline doesn't work for me, I take mirtazapine.

[bluejourney]

Have you had hydrogen and methane breath testing for bacterial overgrowth (SIBO/IMO) in the small intestine? If not, it would be useful to eliminate that as a cause, as there are good treatments for that.

[XDjames in reply to bluejourney]

Thanks I've got a foodmarble gadget and it's variable what it says., certainly does not correlate with that strongly with eating. I'll wheel it out again.

[bluejourney in reply to XDjames]

I’ve got an AIRE 2 as well, which shows hydrogen and methane. I think it’s a marvellous invention. I find sometimes the higher/lower gases correlate with food, but other times it’s stress and how good a night’s sleep I’ve had. Being out in the fresh air/sun/socialising seems to lower them. Maybe serotonin/vitamin D have an effect. Also I get a zero score after tandoori chicken! I think they don’t like chilli. I’m about to have another course of antibiotics for IMO, so hoping for the best. Look up any uTube interviews with Dr Mark Pimmental, or Alison Siebecker. I’ve found them very helpful about IBS/SIBO. I’ve heard charcoal can be good to control gas.

[TheSufferingOnes]

I suffer horribly from ibs pain and I often feel like I want to die. I suffer from severe anxiety, my BP is too high and the ibs pain is just the "icing on the rotten cake." Most people don't realise just how horrific the pain can be. It's like nothing on earth, so I can fully understand how miserable you must feel.

[XDjames in reply to TheSufferingOnes]

Yeah, I get some pretty dark thoughts. But it's crazy to think like that. Anyhow it seems I'm too valuable so there is both carrot (good to be wanted) and stick (bad to be wanted). Until the last 10 days I'get get a break from the pain but seems hard to get that now and I feel totally wrecked and weak. I'm doing what I can -these big dips have for me have usually been followed by a respite, so I'm holding onto that hope and looking forward to the good things that I can get into when I have more energy and less pain (yes, it's hard for some to get their head round 'a bit of tummy ache').. And good weather arrives soon!