Feeling low

[Booth29]

Just had to miss out on another day out because of a bad ibs flare up. Been going on for a week, feel like crying all the time , I’m so fed up. Hardly any good days at the moment, have missed out on three organised occasions in the last 6 weeks. Scared to arrange anything any more, as more often than not have to cancel at the last minute. Waiting to see a dietician, hoping that they will be able to help, nothing else seems to. My diet is so restricted, nothing feels safe to eat. Sorry this is a moan, just at the end of my tether😩

[b1b1b1]

Try the FODMAP diet (see Monash University web site for info.) Take an Immodium if you have to go out and will be away from bathrooms. Learn where there are bathrooms open to the public. Starbucks has good ones, and you don't have to buy anything. Try hard not to isolate yourself and try to avoid cancelling social events. If you stay home you will become more depressed. If you have not seen a gastroenterologist, do so. Also try peppermint pills (IBGuard i you are in the US). In my opinion the best thing is to control the IBS as much as possible with diet, etc. and learn to live with it and go about your normal life. Also, forgot to mention, take probiotics. Good luck.

[JamesGareth in reply to b1b1b1]

Probiotics can cause trouble too - especially on a FODMAP diet so I'd be careful with them.

[b1b1b1 in reply to JamesGareth]

My gastroenterologist has recommended the FODMAP diet AND probiotics. The probiotics are very high strength. I have been following the diet and taking the probiotics for several months and have not had any problems with the combination and have had definite improvement. I would say the improvement is about 50%. He also said that you can have more gas & bloating for the first month of using the probiotics. This did not happen to me, but everyone is different.

[Eliana5]

I'm sorry to hear you are feeling bad. I know very well how you feel. I too, am tired of suffering and just pray for a cure, the right test, or right medication. I know that when I got put on Seroquel, it is a very sedating medication..the cramping and pain stopped, but I still suffer from severe and chronic constipation. I have tried everything, and know that I can't go out or make any plans on a Sunday, as that is my "laxative day" on this day..running back and forth all day, it is impossible to go out. Sometimes I do feel depressed and isolated, it seems like everyone is at church, with their boyfriends, or friends, festivals, or fair, and I am stuck home alone. My therapist told me to think of It as instead of lonesome..but as a personal "me" day..just to hang out and listen to music or research, or interact on the internet. It seems like a losing battle at times, but you have to hang on to hope. Keep coming on here. Lots of great people with same feelings and issues. Have you tried Bentyl or Levsin? I know that when I was prescribed this, it was to be taken 30 minutes before a meal..up to four times a day. Also, insist on having any tests necessary, as sometimes Gastros can be dismissive.

[Linley]

Moan away dear Booth29 that's what's good about this site sharing............what I would add is never give up, make more plans, take Imodium before you go out and enjoy the good days, never let IBS beat you. I have found a good book to read "Take Control of your IBS" by Professor Peter Whorwell, to me this book puts everything in prospective. Good Luck

[Booth29]

Thanks. I’ve had all the tests, colonoscopy, ultrasound bloods etc, tried lots of medication, but at the moment nothing seems to help. Anxiety doesn’t help I know, but it’s hard to de stress when the pain is bad. It’s the pain that stops me doing stuff, also the headaches that I seem to get as well, just feel ill on bad days. I’ll look at the book you mentioned, I’ve heard of professor whorwell on the ibs network website in complimentary terms. It does help just to get things off your chest, sometimes family get fed up hearing the same old moans, fed up hearing myself moaning too☹️

[LCat in reply to Booth29]

Prof Whorwell is one of the very few UK GI Consultants specialised in IBS. You should read his book on IBS which I read : I found it quite helpful.

[Liz1234ty]

Sorry to hear that you are suffering, ibs can come and go so hopefully you will have a respite soon. Your mention of headaches made me wonder if you have been tested for sibo since this is not a standard test and can mimic ibs but often with brain fog and headaches too?

[Booth29]

No not been tested , the headaches are a newish symptom, and just seem to get them when I have a bad flare up that lasts for days. Sometimes I think it’s tiredness as I don’t sleep as well.

[Liz1234ty]

Oh ok might well be simply tiredness causing the headaches. Howevet When combined with ibs syptoms it can indicate SIBO or parasites so worth chasing your gastro for additional tests as the standard tests are quite basic e.g rule out wheat intolerance, bowel / colon cancer and IBD and food poisoning but thats about it.

[JamesGareth]

God it can be so hard huh? (((you))). My only advice is to work with your diet. It seems to be the only way. Sometimes when its bad I restrict to just plain toast with small amount of butter, non-ripe bananas (during the day) and then chicken, mash potatoes and tomatoes or carrots for an eve meal. Which seems to settle it down. And water. The FODMAP idea looks interesting. I found a lot of things on their 'no' list that does cause me trouble so you might want to explore that more fully.

[Eternity78]

I can totally feel you ..i'm in the same situation or may be worse ..tried every thing ..keeping my diet super boring restricted , but still suffering especially from excessive gas and bloating ..loud noisy embarrassing gurgling sounds , involuntarily abdominal twitches and movements " i can visually see my belly moves in a sea wave motion like if there is a baby inside " ..i have been housebound for 2 years now ..basically can't go out with all these ibs symptoms and meds don't work any more ..previously i used to have bad and good days ..can take 2 imodium and go out to run some errands and stuff , but now it gets worse and worse and no good days any more ..lost so much weight due to starving my self " i weigh now 39 kg " ..pale skin and mostly bed / couch ridden ..fed up with gastros and my psychiatrist ..they only put me on sedating pills and make me sleep for complete one or 2 days !!

this is Not the proper path for " quality of life " i know ! but just like you ..don't know what to do any more ..loosing the battle with every new pill i take 😳 sorry for the lengthy moan without giving any advice 😟 ..but to let you know you're NOT alone feeling that way😩💔

[asbayford]

I'm So sorry to hear you're going through this, I felt the same! You're not alone x

I was put on mirtazipine for the anxiety ibs gave me but it slows everything down as a side effect so now any ibs flare up is short lived (usually just few hours), more rare and solid! Best for

Ibs - D not ibs - C. Because of the anti anxiety side effect of it I no longer care if I were to flare up anyway lol! Just a thought

Worth a chat with the Dr

Sending love x

[Honey-Bear123]

So sorry to hear about your suffering. I’ve had ibs since a gallbladder removal over 30 years ago. approx 15 years ago I agreed to paroxitine which is antidepressant 20mg. It helped slow my gut down and gave me confidence to start going out on errands and such. I worked nights up until 3 months ago because of ibs. I’m now on days and just think to myself tough I’m not the only one who suffers. so do get some bad bouts cramping fainting diahorrea but mine mainly chronic constipation now. It’s still hard to go for meals and days out but I really do recommend a type of antidepressant it gave me the ‘ i don’t care if stomach kicks off and I can do this attitude’ I still eat very little when I’m not at home and take Imodium when I have a special occasion or appointment. Hope this helps. And hang in there you will get a rest from it eventually x

[martart]

I understand to the moon and back. I have been going thru the same , for decades now. We just learn to do what we have to do for ourselves and hang with the people that understand . Feel better soon !

[Booth29 in reply to martart]

Thanks everyone for your support, it does help. Hoping that the dietician appointment comes through soon. They advised not to try any exclusion diet till I’ve seen them, so just have to stick with being as careful as I can with what I eat till then. I’ll think about the antidepressant as well, docs mentioned it in the past, but things weren’t as bad then so didn’t try them. 🤞🏼

[martart]

let us know how it goes with dietitian . Best of luck with it !

[Booth29]

Will do, thanks

[LazzaBeep]

I had exactly the same thing. I was too scared to do anything in case I had an attack. My specialist has put my on VLC #3 and Lepicol. This has worked wonders! It hasn’t got rid on it but has helped with my attack’s.

Both can be brought over the counter and VLC #3 can also be prescribed (I have mine on repeat now) so that might be worth a try for you hope you feel better soon