Ibs - feel as though I can’t carry on

[lostandfound55]

Sorry for the long post.

I’ve been struggling for the last few months. GP advises ibs and nothing they can do but I don’t know how to carry on feeling like this.

Everyday I wake up to a gurgling stomach and have to rush to use the bathroom. Then all morning I feel the need to go again sometimes I do go other times I don’t. This means that I never leave the house in the morning as I don’t know whether or not I’ll need to go and to be honest I feel so bad all the time I really only go out twice a week and that is only to go and buy food. I never go anywhere else now.

As the day goes along I then get trapped wind and stomach pain etc which continues until I go to bed then it all starts again the next day for the last 3 months this is continuous with no give up.

Today is bad as I am having diarreah all morning.

Things I have tried:

Gp- prescribed mebeverine - advised classic ibs and I don’t need any other help from them.

Private gastroenterologist - waste of time really as can’t afford the private colonoscopy. They got the details wrong in the letter afterwards such as wrong symptoms written etc.

Dietitian - lowfodmap diet and elimination diet.

I’m still the same after all of this - I don’t know what to do and can’t carry on like this. I want my life back.

The lucky thing for me is that I did have weight to lose but have already lost over 2 stone so don’t want to lose too much more.

That's handy then. When I was on the very low fat diet, I managed my food and weight very carefully to make sure it stayed stable.

I weighed myself every morning and had a graph on the back of one of the kitchen cupboard doors. If my weight started to slip down I would adjust my day and my diet to get it back up. It was a bunch of work, but it did keep my weight stable.

That sounds like a lot of effort, were you eating low fat for a health condition then?

How are you feeling today? Has the diarreah stopped.

Hi lostandfound55,

I was on the fat-free diet because I burnt out after a long period of caring for a relative 24/7 through illness. I'm still recovering from that. Eating fat did become possible again though.

I'm a bit rubbish here still, but the diarrhoea has stopped as long as I don't eat. It really feels as though I got food poisoning from batch cooking chicken tbh. I'm starting to eat little bits and trying to drink lots.

I'm writing a detailed account of what's going for the gastroenterologist, and that has been useful. Going back through my notes, I realised that the wheels really came off after I had a tetanus vaccine booster a few weeks ago. I got bitten realy badly by a pet and had to have that vaccine, and that was what really put the tin lid on things.

I feel quite encouraged by that, because it seems like a thing that ought to come right in a while. Also that's not a stress thing, so I don't need to come over all Zen and change my life because of that, which would be nice.

I hope things are going okay there for you. Xx

Glad the diarreah has stopped. You’ll have to see what the gastroenterologist says about the vaccine. You are right if that is the cause you would hope the side effects would start wearing off over time.

I’m ok thanks. Just hoping that this diagnosis of gallstones is causing my bowel symptoms as gp has told me that as ibs is common I may have that as well overlapping and I can’t bear to think that I’ll still feel like this after treatment. I’m not sure how much of this is the gp covering themselves as they have told me it’s ibs for 4 months.

I completely understand how much you must want the gallstones to be the cause. It would be so much easier if it could just be fixable, wouldn't it?

I just looked and the write-ups online definitely say that gallstones can cause chronic diarrhoea, so that's encouraging.

Do you have any sense of how long it will be before something can be done about it?

This page here: www.mayoclinic.org/tests-procedures/cholecystectomy/expert-answers/gallbladder-removal/faq-20058481

says that there are some drug treatments for diarrhoea associated with gallbladder trouble. Is that something that you would consider as a stop-gap, now that you have an idea of the cause?

I'm rubbish at taking drugs, so I totally understand if you wouldn't.

@jsp56 thank you for looking up for me and the reassurance. My gp has prescribed me omeprazole to try and said it helps some patients but does nothing for others so I am going to test this out. I have been advised by my gp that I would not speak to surgeon I ntil feb-mar 21 and then the operation gets booked in after that. Looking online at my hospitals waiting times it is 48 weeks. Because of this wait I have asked to be referred privately in the hope it will be quicker but one private hospital said they are doing nhs urgent ops so will be a 3 month wait, I’m waiting to hear back from another. It’s a lot of money to pay but I feel like I can’t keep on feeling ill all the time. Let’s hope this does the job and that we are both feeling better soon.

Hi lostandfound55, That does sound very sensible to ask for a private referral is you can manage the cost. It would be great to get it over and done with wouldn't it? I will cross my fingers for a short waiting list, somewhere close to home for you. [crosses fingers].

I hope the omeprazole works too.

I'm getting gradually better from this probably chicken error. It's tedious work waiting for it though. [drums fingers].

I've been writing down all the details for the gastroenterologist and it's so complicated. I wonder if other people are secretly also complicated?

I think there must be others who are complicated like us.

I’m nervous this morning as had a call yesterday and have an appointment with the consultant to his afternoon. Typically I’ve been having a bad
Morning for going to the toilet so hoping I’ll be ok and not need to go whilst there. Luckily the hospital is only 10 minutes away from my house.

Did any one else eat the chicken that you had? Hope it’s all settling down now.

@jsp56 hope your appointment went well today.

Hi,

I just wanted to come back to this in case it helps anyone. I was the poster jsp56.

It turned out that I was able to solve this by starting to cook meat much more aggressively. I used to cook chicken until it looked cooked, and then sometimes batch cook, freeze and reheat. I now cook it until I can stick a digital thermometer in the middle and have it say 99.5 degrees C. I then eat the meat immediately - no more batch cooking.

I think there were other things at play because one of the episodes was caused by a tetanus vaccine. I think that the underlying problem was that I also had long covid.

I just wanted to say, in case it helps anyone else. Touch wood, it is better now.