Ibs problems

[Hollings]

It does look like we are all in the same boat. Ibs needs to be taken more seriously 😒 as it takes over your life and in my case has totally ruined it. I'm either constipation or have diorhea and I never know which it's going to be!!! I'm totally fed up when I do manage to go out and need to know where the loo is at all times. Then there's the pain sometimes it's so bad that I have to lie on the bathroom floor, well you can't do that when your out. Which causes heightened anxiety which makes my Ibs worse. It's like a vicious circle so it's safer to stay at home which isn't loving a full life.

[Hidden]

The one big problem with IBS is it is not a disease. It is a title you are given when no other label fits. IE; they have no clue what you have! Aside from that it can totally wreak you're life. Unless professionals have had IBS they have little or no appreciation of what we have to deal with.

IBS controls my life if that is what you call being unable to go out to eat, staying handy to the bathroom and existing on bland food, no salt, no sugar, no spice and precious little herb with no enjoyment in it. Well that is the theory, the reality is I cheat, who wouldn't with this restriction and I pay a severe price for it. My choice and still little fun with my food.

Yes I have done all the diets and fades along with fodmap, spice free, gluten free and lactose free foods, yet it persists. Through all of this I have found but one solution, starvation. It cures all the stomach problems, I start feeling human again, then I hit the wall after 2 weeks with no strength or stamina left. So I start the BS all over again, eat because I want to to stay alive which brings back the IBS symptoms all over again. Strange feeling I can't wait until my next starve. I'm now on multi vitamin meds and shakes to keep me alive.

I think the sad thing is that IBS can manifest differently in everyone, so there is no hard and fast cure. What works for some doesn't work for others. A virtual minefield.

I finally gave my specialist an ultimatum, fix it or I will go with self termination. I'm now getting some help after promising to hold off until they have tried their best. I'm 4 months into my deal and suspect I might have alleviated the IBS for the moment. Too much to hope for ever.

So what am I doing. Well between the Dietitian and Gastrologist I have been put on Omeprazole 20mg before each meal at least 30 minutes before eating, it works better than with or after eating and Phloe probiotic for bowel health in the morning. I'm not sure if it is available anywhere else around the world but suspect any reputable probiotic would do the same. When I say each meal I should point out I usually only have a cup of tea and half a plate of bran flakes with minimal trim milk for breakfast. A cup of tea and slice or 2 of gluten free toast with honey and margarine for lunch. Incidentally the honey settles the stomach and reflux. So no omeprazole for lunch, although I'm supposed to. Then I have a very small evening meal which this week has been the wifes mince smeared on wholemeal bread or toast, just enough to cover and no more or I'm into stomach trouble again. Alternatively I might have a chicken thigh or half a small chicken breast with small portions of cabbage, carrots and sweet potato. Smaller than a child's serving.

Once a week I try to have sardines for lunch which will require omeprazole prior as I love tomato sauce with it. Yeah I know, not good but you have to try to enjoy food some time! I stress my meals are very small portions and I know not enough to sustain life in the long term. It seems to me I have a limit on the amount I can eat or drink in a day before running into stomach problems. Of course I finish the day with 2 laxatives and a cup of tea. I get through average 6 cups of tea per day, white and very little sugar.

To date I have little bloating and no stomach cramps, unless I eat too much. I range from constipated to diarrhea and back daily. There are days when I'll start with constipation and go straight into diarrhea for the remainder of the morning. I now have reflux almost constantly and "enjoy" stomach acid in the mouth which strips the lips regularly!

So far all the tests have been negative, I'm supposed to be hypersensitive to reflux. With constant stomach acid in the mouth , burnt lips and the occasional burnt esophagus seems to me to be more than hypersensitivity. We will see when I talk with the Gastrologist again.

I'm generally a very strong willed person but to be bought to my knees with IBS certainly is soul destroying. The brain says fight on and the heart says why bother, this is not life, this is existence only. My Dr keeps telling me I'm depressed and I argue, no, I'm desperate, a whole nother world of pain.

Sorry if this is not a pretty picture, but I am sure it is the extreme end of IBS. I hope this can motivate people to advocate strongly for themselves, because this is not a place you want to end up.

Cheers

[Angie11 in reply to Hidden]

I can relate to absolutely everything you say. I feel that life has very little to offer me right now. An app next month with gastroenterologist for the umpteenth time. I know he is fed up with me. I’m getting desperate. My gut is so confused between steroids, laxatives, constipation then diarrhoea. Like you eating very little.

The nausea is overwhelming. Just don’t know how to cope any more.

[Hidden in reply to Angie11]

I think you will cope. What is the alternative? You have to cope despite all else, there is but one alternative and it is too damn final to use before exhausting everything else. One thing that really screws up the stomach much more than most realise, is stress. Mainly stress from worrying about your IBS. It all compounds on itself.

I read everything I can and turn over every stone to get where I believe I should be. You know we are our own best advocates. I never accept a no. My thought pattern is how do I make that a yes, then proceed to make it happen. No is not a solution, just a copout! I'm not afraid to be vocal and stir with everything I have. What are they going to do. Stop giving me what they are not giving me!

There is a product called Rescue remedy which is available around the world in pastille or as a fluid drop. I personally use both but of late the fluid has been giving me reflux, so I use the pastilles to good effect, two at a time sucked until they are gone. Not a cure but a definite help for me.

I never let a day go by without a BM. If I do it is a sure sign of trouble from day 3. I use canned peaches on bran or canned pineapple, in fact anything I know will give me diarrhea. Then inevitably I spin into a day of diarrhea. That is far more preferable as far as I'm concerned. Keep the fluids up which is why I drink so much tea and I don't do any strenuous activity, I don't like water, or it dries me out causing constipation. As I said before honey does help settle the stomach but it is only short term and I can't eat honey all day with type 2 diabetes, wish I could. I stick with fish or chicken and never buy pre made foods. Always make what I eat at home so I know exactly what it contains. I control my diet very rigidly. Until I cheat of course! But essentially I stick to what I have found works for me, be it not much. I look forward to fish and chips soooon. Because of what I don't eat I have to take vitamin D3, B12 and some multi vitamins to keep the immune system working and the brain functioning. Occasionally I knowingly cheat and pay a heavy price of uncontrollable flare ups until I can get it out of my system. A minute of heaven for days of hell. Doesn't seem worth it, but damn it is good in the moment!

My dietitian told me I'm one of her rear clients, always trying new and different ideas to beat the IBS, prepared to try anything. Apparently most of her clients don't even try to help themselves. They want the cure handed to them, nice if you can get it!

Living like this is pure hell on earth, I can't accept this life, I refuse to accept this life. Neither should anyone else.

Cheers

[Angie11 in reply to Hidden]

Thanks for replying. I love your positivity just wish I could buck myself up but I’m struggling. Every time I try and take control my gut says NO and i end up back in the bathroom. I’ve have to cancel other hospitals app all the time because of the fear of needing the loo. Can’t take Imodium , much too risky as I keep get getting a blocked bowel and always need laxatives. I take Constella and Andrews Liver salts. On the odd day that I take a break from laxatives I end up double over with cramps.

But I know at the end of day it’s me that has to live this life and I must try and get control of my situation

I’m glad you are feeling more in control

I have seen the rescue remedy ,I’ll give it a go

thanks again

[Hidden in reply to Angie11]

I'm not always positive. I have had my dire days, no pun intended and probably always will as long as I have health issues. Dr google has been my friend. I research everything I can and believe only a fraction of what I read. I go for the scientific backed evidence and not the anecdotal evidence. Once in a while I have tried things that have no scientific bases and are just pure gut feelings and I have to say some do work. Although not usually permanent, just short term fixes. I was moments from ending it all when I had to stop a clients suicide attempt. I didn't have to but couldn't do nothing. That woke me up to what I was about to do myself, I'm 4 years on since and he is doing well. He keeps asking how I know what he is thinking and doing. I can't tell him, because I have been there.

It has taken me 70 plus years to accept a few facts in life that we all know but pay no heed to.

Our stomachs and what we eat are what we are, it is vital for the body to work and life itself.

Exercise is important to get the body functioning to do what it has to do with all the food it has been fed.

Socialising lets our brain focus on other things and not ourselves, stewing in our own fat.

I should listen to my self!

There are others but above all I recon not eating man made or adulterated foods is the best advice I can give anyone and the only one I follow religiously. We have all been brainwashed into thinking we have to add salt, sugar and God knows what to our food. It is all an acquired taste perpetuated from birth.

For every medication we take there is a reaction. The difference is what we can tolerate taking. Not everyone can tolerate the same things, as with food, indeed life itself.

That aside there are meds some must take to sustain life and in the process shortening life itself. Damned if you do and damned if you don't. Sadly I have slipped into that category of late.

Last of all, never take your meds on an empty stomach with IBS. For sure that will make it worse. Six months of that and I spiraled into my worst flare up ever, that I'm fighting now. It put me back 10 years and made me feel like crap. Ten years of hard work wasted to start over again. At least I'm a little bit savvy now and won't be making the mistakes of past, I hope!

Cheers

[Hollings in reply to Hidden]

I know exactly where your coming from on flare ups I barely eat anything and after about a week I slowly start eating again. It's better when I'm laying down but unfortunately you can't be horizontal all of the time!!! I've also started listening to Nerva a relaxation programme but you have to pay for it. When your desperate you will try anything. Life with Ibs is hell all you can do is struggle with it from day to day.

[Merlinjardin]

Yes I have not been out for about 3 years now IBSC feel so ill and in pain. I get nagged to go out but I don’t feel like it. People don’t understand

[Angie11 in reply to Merlinjardin]

I know exactly how you feel.

[Stuart24]

Hello, I used to advise a lot of different things and did a lot of research into IBS, mine was D. However, like me I think a lot of people certainly with D, have an underlying infection of the intestinal or bowel lining and it is a simple matter of treating it with the right antibiotics. I suffered for years and had no end of tests, but more recently I was diagnosed with diverticulosis, but more importantly I insisted on treatment for diverticulitis and this has effectively cured all my problems. The first line treatment for diverticulitis is a course of Co-amoxiclav. This was a year ago and I have been absolutely fine since and I eat anything I want now, and don't really have rules other than to have lactose free milk and a digestive enzyme with a heavy meal of carbs. The same happened 20 years ago when I saw a consultant in Venezuela, he gave to two antibiotics and I was fine for a long time, until at some stage I was re-infected. I would like to see GP’s respond to IBS-D in the same way as treating diverticulitis. It at least gives some baseline then on which to go further if necessary, this was the attitude of the Venezuelan consultant.

[Evangeline22]

I have had ibs along with other things for over a year and I couldn't agree more, first it was diarhhoea and then constipation, feeling unwell, trying different foods tablets anything to help but none do, so I fully get where your coming from.

The doctors just don't take it seriously and it is hell, not obviously as bad as some illnesses, but certainly up there.

I hope you manage to get some comfort and the pain must be shocking if you are having to lie on the floor with it, poor woman.

I thought there would be medication to help survive it but all I have been offered nothing but constipation tablets.

Good luck lets hope there is a better way of coping anytime soon.

[bungi1961]

I had breast cancer 2018 had lump removed and something done in my armpit that followed by chemo/radio stuff and had to be careful eating with that ETC then at the end of 2019 my son died without warning the Doctor hasn't said as much but I think that's where this IBS & Diverticular Disease started for me as in 2021 I had 2 colonoscopies and 7/8 polyps removed that's when the D Disease was found and I am all ways scared to eat and frightened to eat"CATCH22" with it all the time I had another scan this year Jan/Feb 2023 I have spoken to a dietician on the phone sevaral times no face 2 face meetings they just send out leaflets try this try that ETC and I am left 2 handle it all on my own never able 2 go out unless I know where the toilets are and missed out on load of stuff even not seeing my Mum before she died and I could not see her 4 the last 4 years before she did as COVID came along and I had 2 self isolate only hospital things chemo and now it is making me so cross and angry with the constant worry of messing myself if I do so I have been a prisoner to the house ETC i have been given mebervine albervine omeprazole buscopans cocodamols and still on anastrazole(chemo) I almost rattle I have a yakult 1st thing in the morning gluten free pasta and brocolli why I bother I really don' know what 2 do? and I've only just scratched the surface and could not attend Mum's Funeral as it was over 150 miles away