Having a Bad Week

[Katerina1]

Another painful flare up and couldn't get out of the bathroom when I was due to go out. Happens so often it must be a trigger. Starts with cramps and I have a few seconds to make it to the loo. Then in and out all day with D. Had many tests, colonoscopies, SIBO etc. Tried various meds, CBT, hynotherapy, meditation.

Taking loperamide helps me to leave the house, but wondering whether others find this stores up the problems for later? I find after about three and a half hours the cramps and D return with greater vengeance, almost as though the attacks are delayed rather than avoided. Difficult to make it home too if it hits whilst out.

Also, do others find they feel absolutely exhausted, sore guts and quite fragile for a day or so after a bout?

Try to move on each time and keep going, but always the question when going out, are there loos and what are they like.

Apologies for the moan.

[xjrs]

Have you been tested for BAM (Bile Acid Malabsorption)?

[BabsyWabsy]

These days, I find building up the loperamide starting a couple of days ahead. So for example, if I am going out on Wednesday, I will take one loperamide on Monday evening and another on Tuesday evening. This usually helps for Wednesday morning going out and doesn't overload the system to create cramps.

[Katerina1 in reply to BabsyWabsy]

Thanks Babsy Wabsy. That might be worth a try.

[Linley]

Your not alone as I have to know where the toilets are. My red alert is after a lunch, evenings don't seem to be too much of a prob, think the anxiety is lower when you know there is a toilet not far away. Hope you have some good days 🤞

[Katerina1 in reply to Linley]

Hello, I keep a record of the date and time of every flare up to see whether there may be any pattern. Unlike you, evenings seem to be more of a weakness for me which makes going out for the evening a challenge. A late evening snack seems to set me off. Other times of the day it's often one to two hours after eating when it all flared up. That said, there are also the unexpected any time issues.

[Linley in reply to Katerina1]

Yes, I understand directly after eating at lunch time I tend to feel everything moving and like you if I have an episode it happens within two hours. Have tried cutting out lunch but that's no good either because I get pains so really have to eat regularly. IBS is so unpredictable😞anyway chin up and take care🌹

[winfong]

>> Also, do others find they feel absolutely exhausted, sore guts and quite fragile for a day or so after a bout?

Definitely an issue with me

[Maureen1958 in reply to winfong]

I used to be like that when my son was little, how often are you like this, mine was everyday.

[winfong in reply to Maureen1958]

Mine comes after a bowel movement. Right now, it's C not D, but with much the same effect (I've had D in the past). It's very variable, but I almost always have to rest at least a bit then feel off for at least an hour or so. Bad ones really wring me out, putting me down for the rest of the day. I get those a lot less these days than I did in the past.

[Maureen1958 in reply to winfong]

I just feel dreadful from when I wake up till I go to bed and even in the night now. Slowly over the years it has taken over my life! I really don't want to do this anymore. I try to treat it as a challenge but I am getting bored of that game now.

[Katerina1 in reply to Maureen1958]

I feel for you Maureen. It's a tough condition to live with. Hope you can find some positive moments. I know that feeling of 'it has taken over my life and I don't want it to go on'. I think many here understand those feelings.

[Maureen1958 in reply to Katerina1]

❤️❤️❤️

[Katerina1 in reply to winfong]

Yes it can really drain you. Resting is really important. Sounds as though you have a bit of improvement though.

[mal444]

Hi katerina. I feel for you as im the same. This all started 2 years ago for me. Started with massive bouts of gas with bits of fluid then mucus and bits of stool. Then bouts of passing diarrhea then bouts or just mucus. Ive had bloods. Colonoscopy 7 weeks ago. Clear. Ct and pelvis with contrast. Found a focal constriction but doc said was nothing to worry about as Colonoscopy showed nothing. Now i take loperamide like yourself and this gives me time to go out and do things but when i have flare ups i get very depressed and down and dont see any way out. Ive tried various diets which help but it always comes back. Im like you i have no idea what to do next.

[Maureen1958 in reply to mal444]

Just to say you may want to check out BAM, see link below:

gutscharity.org.uk/advice-a...

Maureen

[Katerina1 in reply to Maureen1958]

Hello,They tested me for BAM and it was normal. Had loads of tests so they have done their best. Only so much they can do.

[Katerina1 in reply to mal444]

Hello, hope you manage to get out and do things in spite of the difficulties. This condition can really get you down. My GP told me to live my life to the full and go out and about as normal. It's had quite an impact though. Also, there are frequent days when I feel sore and not up to it.

[winfong in reply to Katerina1]

Easy for them to say

[bburzycki]

These sound like my symptoms lately. When i am home while they suck that is at least manageable and I get a ton of reading done - but when they happen at work like this week that is much more annoying. I also have been checked for everything and no answers other that it is IBS which I am pretty tired of hearing honestly. And terribly tired during and after these purges.

[Maureen1958 in reply to bburzycki]

Just to say you may want to check out BAM, see link below:

gutscharity.org.uk/advice-a...

Maureen

[Maureen1958 in reply to Maureen1958]

Sorry link didn't work see message to mal444 above.

[Katerina1 in reply to bburzycki]

Hello, I always say thank goodness I love reading. Helps to take my mind off things when I can't make it out of the door (or out of the loo).

[JulieB5200]

Hi,just to let you know you’re not on your own. I suffer the same too.Had every camera test available and nothing is found.So I just keep living the best way I can and try not to panic about it all. I always need to know there are toilets nearby wherever I am 🙄.Sometimes I start eating and have to go mid meal which is especially annoying if I’m eating out.Sometimes I can so worn out with the cramping pain and going to the loo up to 6 times a day.However I do believe state of mind is a trigger for me.The calmer I feel the less pain I suffer.x

[Maureen1958 in reply to JulieB5200]

See message to mal444 above.

[Katerina1 in reply to JulieB5200]

Like you I have to know where the toilets are before going out. Also have a radar key. Find more and more are closed these days though. Eating does seem to be a trigger and my partner is used to me bolting for the loo part way through a meal. Most people seem to feel worn out when they get attacks.

[Luisa22]

I haven't tried loperamide yet. I am trying to avoid it, so can't comment on what it's doing inside the gut. I feel though, that if there's something the body desperately wants to get rid of, then stopping that up might not be a great idea. But that's only IF there's something like that happening.

I guess if there's a food sensitivity, then the body might want to get rid of the offending food quickly?

And definitely yes to feeling exhausted, sore guts and fragile for a couple or three days after a bad flare day. I also get a very sore behind, from all the wiping, even though I use little wet pads instead of dry paper for 90% of the wiping. My butt gets very tender and overworked :/ That can take a couple of days to feel soothed again.

I am lucky that I don't have to go out if I get a bad day. No obligations. I'll go in the garden, and a downstairs loo is only a few steps away. Or go for a little walk when I feel a bit steadier.

[Katerina1 in reply to Luisa22]

Like you, I can stay in and rest if needed so count myself as fortunate. Still feel guilty about cancelling and letting anyone down. Get anxious if I have a doctor or dentist appointment in case I have to cancel at the last moment.The soreness you mention is painful. I wash very gently with cool water and unperfumed soap. Then gently apply a little Vaseline and mostly not too bad.

[Luisa22 in reply to Katerina1]

I find appointments difficult. It's hard to predict how I'll feel on any morning. Even if things are going well, it can still be unpredictable. I have had to pay a late cancellation fee for my dentist twice over the past 2+ years because I could only know I couldn't go about an hour before my appointment time. The annoying thing was, that later in that same afternoon, I felt well enough to go for a 3 mile walk!

[winfong]

Are you under any particular stress these days (I mean, other than IBS, of course)? I find that has a huge effect on me. If that is indeed the case, any way you can get mitigate that would be helpful - changing your situation, talk therapy, pharma ...

[Katerina1 in reply to winfong]

I think you are right in that it is helpful to try and mitigate stress. I'm fortunate to have a low stress life these days. I live in a rural area with time to do things I enjoy. Even minor stress can set me off though.I have tried hypnotherapy, talking, CBT and meditation but they haven't helped. Perhaps extreme stress in the past can act as a trigger.

[Meleber]

Unfortunately I can relate. No appointments for me anymore because I can't trust my bowel. After a 'good' day I can have some bad days, feel literally sick and exhausted. Fortunately my mother (77) can relate although her bowel problems are less severe. Also my few good friends are understanding.

[mrbiff]

Have you tried Metamucil ?

[mrbiff]

It’s the only thing that helps me. I’m the same as you. Had so many tests. The whole gamut. A dozen ER trips only for them to tell me it’s IBS. Not that I want some horrible disease lol. But they can’t really treat or cure IBS so the diagnosis is kinda of BS.

[Katerina1 in reply to mrbiff]

I haven't tried it as I'm nervous about fibre which seems to upset me except in small amounts. I have read about it though. Glad it helps you.