No rhyme or reason

[Regina S.]

So I have been trying to identify the foods or causes that trigger symptoms. Last week good, no symptoms. This week.. a bit of a struggle.  Does anyone know how we are supposed to manage the symptoms if we dont know the cause. Recently trying the apple cider vinegar suggestions I have read about. I am open to suggestions.. anyone? 

 

[Esjie]

Oh yes, I know this "no rhyme or reason" thing.
Same foods as usual, no stress, good sleep =flare up.
Same foods as usual, little bit of stress, sleep not as great =perfect gut.
Trying out more fibre (one week) =splat!
Trying out more fibre another time =perfect gut.
No sleep all night =perfect gut (what's with that one??)
Lovely 8 hour sleep, relaxed and peaceful =hours on the toilet!
Lovely 8 hour sleep another night =perfect gut.
Eat potatoes with skins at my friend's house =fine in the morning.
Eat potatoes with skins at home =flare up!
And so on....

Sorry...I could rant on about this because it often makes no sense to me. How could anyone make sense of that??

The only possible way I have found to cope is to adjust my diet depending on what my gut does in the morning! A reactive kind of approach. I think I have got used to doing this now and it can help a lot of the time, but there are still surprises (when even the 'safest' foods appear to let me down.

I have come to believe that IBS does whatever it wants, and all I can do is duck and weave, and adjust my diet according to its whims and fancies. I have found out for example that if I have a very loose stool flare up, then white rice and lean protein or eggs will certainly help "bind" things until the situation steadies out. (Just the same as we would do for dogs who get diarrhea)
But it's nice when normal things happen because then I can eat more veggies, even a bit of fruit, and some more healthy foods.
But it's always a question of "watch this space for updates"....from my gut!

 

 

[Renee kerckhove]

Hi R

ive had IBS for 22 years. Here’s what I know for me. 
if I eat a food and I get gas, I stop eating that food.  I take IBS one day at a time.  I don’t over eat. That just makes my gut work harder. I found out from my allergist what foods I’m allergic to (causing gas).  FODMAP diet is very helpful for me. I literally jump for joy for any amount of time I get feeling normal. And when I feel bad I feel very very bad. I have clothes I wear when I have gas and clothes when I’m bloated and gassy. Stress for me has been a lot of work and is on going. I’ll say it again one day at a time. I’ve learned compassion towards myself. I pay attention to my body. Sometimes all I can do is write what’s happening to me and the symptoms. I found a gastroenterologist who only had one way of handling IBS. I haven’t gone back. I have a colonic every one or two months or sooner sometimes. Helps me relax. And I massage my abdomen in a clockwise circular motion. It relaxes me and it wakes up my gut. The very hardest part has been not eating foods I absolutely love. It took me a few years of vacillating back and forth eating the foods I loved but having IBS flareups from eating them. The good things I’ve learned is discipline. It helps me in many ways with my life. I have kegeled and kegeled and now I have the best bladder control. But I still have moments where I just cry and then I talk to a friend to help release my tension. 
you’ll find your way and you’re  in the right place to talk and hear others experience. ✨

[Regina S.]

23 hours ago, Esjie said:

Oh yes, I know this "no rhyme or reason" thing.
Same foods as usual, no stress, good sleep =flare up.
Same foods as usual, little bit of stress, sleep not as great =perfect gut.
Trying out more fibre (one week) =splat!
Trying out more fibre another time =perfect gut.
No sleep all night =perfect gut (what's with that one??)
Lovely 8 hour sleep, relaxed and peaceful =hours on the toilet!
Lovely 8 hour sleep another night =perfect gut.
Eat potatoes with skins at my friend's house =fine in the morning.
Eat potatoes with skins at home =flare up!
And so on....

Sorry...I could rant on about this because it often makes no sense to me. How could anyone make sense of that??

The only possible way I have found to cope is to adjust my diet depending on what my gut does in the morning! A reactive kind of approach. I think I have got used to doing this now and it can help a lot of the time, but there are still surprises (when even the 'safest' foods appear to let me down.

I have come to believe that IBS does whatever it wants, and all I can do is duck and weave, and adjust my diet according to its whims and fancies. I have found out for example that if I have a very loose stool flare up, then white rice and lean protein or eggs will certainly help "bind" things until the situation steadies out. (Just the same as we would do for dogs who get diarrhea)
But it's nice when normal things happen because then I can eat more veggies, even a bit of fruit, and some more healthy foods.
But it's always a question of "watch this space for updates"....from my gut!

 

 

You have perfectly explained my scenerio.. except I have the constipation instead. But the stomach thing.. is making me go out of my mind. I dont even know what foods causes the flare up... bloating and gas is out of control!  I dont know what is causing this problem.. its been most of my life. I have tried every home remedy, every prescription medication and I am going no where. Was hoping that someone knows of a miracle drug.. I am ready to try anything.  Do you take any medication that helps?

 

[Regina S.]

11 hours ago, Renee kerckhove said:

Hi R

ive had IBS for 22 years. Here’s what I know for me. 
if I eat a food and I get gas, I stop eating that food.  I take IBS one day at a time.  I don’t over eat. That just makes my gut work harder. I found out from my allergist what foods I’m allergic to (causing gas).  FODMAP diet is very helpful for me. I literally jump for joy for any amount of time I get feeling normal. And when I feel bad I feel very very bad. I have clothes I wear when I have gas and clothes when I’m bloated and gassy. Stress for me has been a lot of work and is on going. I’ll say it again one day at a time. I’ve learned compassion towards myself. I pay attention to my body. Sometimes all I can do is write what’s happening to me and the symptoms. I found a gastroenterologist who only had one way of handling IBS. I haven’t gone back. I have a colonic every one or two months or sooner sometimes. Helps me relax. And I massage my abdomen in a clockwise circular motion. It relaxes me and it wakes up my gut. The very hardest part has been not eating foods I absolutely love. It took me a few years of vacillating back and forth eating the foods I loved but having IBS flareups from eating them. The good things I’ve learned is discipline. It helps me in many ways with my life. I have kegeled and kegeled and now I have the best bladder control. But I still have moments where I just cry and then I talk to a friend to help release my tension. 
you’ll find your way and you’re  in the right place to talk and hear others experience. ✨

You definately feel my pain I can tell. Its been going on most of my life. Aside from the constipation, the bloating and gas and squishing stomach is my enemy. I want to cry. I havent been able to pinpoint the foods that cause this.. some times I think its food, sometime I think its stress. I am throwing my hands up and trying to tell myself that this is how it will be forever.. good days and very bad days. There is no cure. I have tried every medication and nothing helps. I am looking or a miracle drug I guess.  It is making me depressed. I am going to try the belly rubs more often, hope that will helps. Any medications you take that help?

 

[Renee kerckhove]

On 3/10/2023 at 9:01 PM, Regina S. said:

You definately feel my pain I can tell. Its been going on most of my life. Aside from the constipation, the bloating and gas and squishing stomach is my enemy. I want to cry. I havent been able to pinpoint the foods that cause this.. some times I think its food, sometime I think its stress. I am throwing my hands up and trying to tell myself that this is how it will be forever.. good days and very bad days. There is no cure. I have tried every medication and nothing helps. I am looking or a miracle drug I guess.  It is making me depressed. I am going to try the belly rubs more often, hope that will helps. Any medications you take that help?

 

 

[Renee kerckhove]

3 minutes ago, Renee kerckhove said:

Regina  I just wrote you with a lot of natural ways I work with my IBS and it’s lost  I’m knew to this site  still finding my way  I noticed at the end of your response to me there was no quote to press and respond so I started new and apparently lost my info  I haven’t forgotten you but I’ll start fresh soon  I have compassion for myself and for you  hope you get this  

 

4 minutes ago, Renee kerckhove said:

 

 

[Regina S.]

HI, I am sorry, I am new as well so have not figured out the lay of the land here.  Not sure if everything was posted and I think the same thing happened to me. I called my doctor, I am trying to find a new medication but most of it is not covered and very expensive. It seems as though the when I am not working my stomack is amazing.. during the week is when these episodes occur. So I sometimes think its from stress.. then sometimes I feel its food.  I dont know, my doctor doesnt know and give up.. I think the Applie Cide Vingegar gummies are helping a bit.. I have read it somewhere.  I am willing to try everything.

 

[Renee kerckhove]

On 3/10/2023 at 9:01 PM, Regina S. said:

You definately feel my pain I can tell. Its been going on most of my life. Aside from the constipation, the bloating and gas and squishing stomach is my enemy. I want to cry. I havent been able to pinpoint the foods that cause this.. some times I think its food, sometime I think its stress. I am throwing my hands up and trying to tell myself that this is how it will be forever.. good days and very bad days. There is no cure. I have tried every medication and nothing helps. I am looking or a miracle drug I guess.  It is making me depressed. I am going to try the belly rubs more often, hope that will helps. Any medications you take that help?

 

Ok I’m back. I’ll be brief this time. Take a look at the FODMAP diet. It explains how carbs and sugars are fermentable in our gut. Get cracking on researching IBS.   You can cry and curse as much as you want to but no whining. I just take laxatives and and stool softeners.  I think living with IBS is like being a diabetic. I think it takes a lot of courage to make change and enjoy my life in the best way possible. Never give up. ✨

[Regina S.]

Hi, yes it is like being a diabetic. I am starting to follow Fodmap but I do think it is stress for sure. My doctor is prescribing me Bentyl.  I am going to try that again. Fingers crossed! Thanks for your advice!

 

[Renee kerckhove]

On 3/13/2023 at 5:46 PM, Regina S. said:

Hi, yes it is like being a diabetic. I am starting to follow Fodmap but I do think it is stress for sure. My doctor is prescribing me Bentyl.  I am going to try that again. Fingers crossed! Thanks for your advice!

 

I’m glad you’re hanging in there. I know hard it is. You’re trying something and I’ve got my fingers crossed for you. Two years ago I had total knee replacement. I decided I’d better follow the fodmap diet exactly thru this recovery. Worked like a dream. For about a year. Then it stopped working. So I went to sessosides and dulcosate sodium. They worked for awhile then stopped. I’ve just ordered a new product I haven’t tried before. So I’ll let you know how that works. I was abused growing up. For what that’s worth. 
it took me a very very long time to accept  IBS. For all the things I’ve tried over the years trying this trying that, I must admit I’m more comfortable with my IBS-c. 
when I first found out I had IBS-d. Whew. I had to know where every bathroom was and I had about five seconds to get to the bathroom. That means I kegeled real hard to make it to the bathroom. I don’t have to find a bathroom pronto anymore. My telling you this is to keep it real. Hope you get this. 

[Regina S.]

Thanks! I will let you know how it works out. Let me know how yours goes too. I noticed the same thing, things work, then they dont work.. its like there is an evil brain in my stomach saying... Im going to get you.. its never going away.. ha ha. I am sorry you were abused,  I went through some tough times growing up myself which is why the anxiety has a big to do. I am going to start drinking more wine at home, I think it helps me relax.  I guess it is what it is.. a lifelong never ending good days bad days journey. Hang in there!

 

[Renee kerckhove]

14 hours ago, Regina S. said:

Thanks! I will let you know how it works out. Let me know how yours goes too. I noticed the same thing, things work, then they dont work.. its like there is an evil brain in my stomach saying... Im going to get you.. its never going away.. ha ha. I am sorry you were abused,  I went through some tough times growing up myself which is why the anxiety has a big to do. I am going to start drinking more wine at home, I think it helps me relax.  I guess it is what it is.. a lifelong never ending good days bad days journey. Hang in there!

 

You nailed it. “It is what it is”. If you are ever interested I have a wonderful therapist and she uses EMDR. Look it up if you choose. Helped lower my anxiety and now I hardly ever have anxiety. Wine sounds great. And it’ll be a couple of weeks before I know if my new med works. I ordered it. I’ll hang in there. Thanks. I do better if I choose one thing to try at a time otherwise I get overwhelmed. ✨

[Regina S.]

Thanks I will look it up, I will try anything. Let me know how your medication works. I havent tried mine, supposed to be an as needed thing. So far this has been a great week, no symptoms.. knock on wood. No idea why at all its been good. Just trying to follow Fodmap as much as possible. Keep me posted.

 

[Renee kerckhove]

14 hours ago, Regina S. said:

Thanks I will look it up, I will try anything. Let me know how your medication works. I havent tried mine, supposed to be an as needed thing. So far this has been a great week, no symptoms.. knock on wood. No idea why at all its been good. Just trying to follow Fodmap as much as possible. Keep me posted.

 You’ve had an enjoyable week. Can’t beat that. I’m glad you’re looking at FODMAP. My flare up is finally settling down. So I’m happy too. ✨

[Renee kerckhove]

On 3/17/2023 at 11:54 AM, Renee kerckhove said:

On 3/16/2023 at 9:01 PM, Regina S. said:

Thanks I will look it up, I will try anything. Let me know how your medication works. I havent tried mine, supposed to be an as needed thing. So far this has been a great week, no symptoms.. knock on wood. No idea why at all its been good. Just trying to follow Fodmap as much as possible. Keep me posted.

 You’ve had an enjoyable week. Can’t beat that. I’m glad you’re looking at FODMAP. My flare up is finally settling down. So I’m happy too. ✨

Expand  

Hi Regina

well the Indian herbs I tried for IBS-c were really strong. I cut to half strength and it was still too strong. But I finally came out of my 6week flare up. No bloating still some gas. I get colonics once a month when maintaining and twice a month when my IBS is flared up. Colonics are not always a persons first pick. Not all doctors agree that this is a workable and safe treatment. But I’ve been ibssing it for 22 years. Lots of tests went to gastroenterologist for awhile. He only had one idea. That was it. So I’ve made my own decisions that help me and colonics is one that I do. Seems creepy at first but I watch my cats poop doesn’t creep me out. And I like open colonics more than closed. 
mom happy when I’ve had a colonic but I go right back into sadness. And yes I have a wonderful therapist. I think the IBS-c keeps me from doing things like even taking a walk which I love. So if you are finding ways to participate in life despite the IBS-c, do share with me. That would mean a lot. I hope you’re doing okay. 

[Regina S.]

Hi, sounds like you are doing better with the current plan. Seems like a lot of work but I guess it is worth it. I have been doing what I have been doing, which is nothing since I dont know what triggers it but my week last week was good and so far this week. I have my new medication but only took it once so far so hard to tell if it works. Praying that the good days continue on. Just when you seem to have a grasp on it, the changes.  I wish I can give you more advice because I am miserable when I get an episode, seems like nothing works when that happens.  I think .. as noted in my title, there is no rhyme or reason, so we cant control what we do not know. I guess acceptance but easier said than done.  I think what works for  doesnt work for someone else. Its like there is a brain in my stomach that is fighting me. Anyway, hope you have better days... for both of us. 

[Renee kerckhove]

10 hours ago, Regina S. said:

Hi, sounds like you are doing better with the current plan. Seems like a lot of work but I guess it is worth it. I have been doing what I have been doing, which is nothing since I dont know what triggers it but my week last week was good and so far this week. I have my new medication but only took it once so far so hard to tell if it works. Praying that the good days continue on. Just when you seem to have a grasp on it, the changes.  I wish I can give you more advice because I am miserable when I get an episode, seems like nothing works when that happens.  I think .. as noted in my title, there is no rhyme or reason, so we cant control what we do not know. I guess acceptance but easier said than done.  I think what works for  doesnt work for someone else. Its like there is a brain in my stomach that is fighting me. Anyway, hope you have better days... for both of us. 

I’ll try. Thx. 

[Esjie]

On 3/11/2023 at 2:01 AM, Regina S. said:

You definately feel my pain I can tell. Its been going on most of my life. Aside from the constipation, the bloating and gas and squishing stomach is my enemy. I want to cry. I havent been able to pinpoint the foods that cause this.. some times I think its food, sometime I think its stress. I am throwing my hands up and trying to tell myself that this is how it will be forever.. good days and very bad days. There is no cure. I have tried every medication and nothing helps. I am looking or a miracle drug I guess.  It is making me depressed. I am going to try the belly rubs more often, hope that will helps. Any medications you take that help?

 

No, I am not taking any pharmaceutical medications. But I do take Tormentil herbal tincture. Not all the time, just when my bowel movements are a bit too loose, and I get slight discomfort in the lower abdomen about 4 hours after dinner. I have also tried Silicol gel, but not sure if that does any good for me. The Tormentil can certainly help, but I take the maximum dose whenever needed, which is 1 teaspoon 3 times a day. I sometimes include astringent herbs auch as blackberry leaf tea (strong)

I also take homeopathic remedies  and some remedies can work really well sometimes. I work with a practitioner. But they haven't actually 'cured' me totally.

[Esjie]

On 3/29/2023 at 3:21 AM, Regina S. said:

Hi, sounds like you are doing better with the current plan. Seems like a lot of work but I guess it is worth it. I have been doing what I have been doing, which is nothing since I dont know what triggers it but my week last week was good and so far this week. I have my new medication but only took it once so far so hard to tell if it works. Praying that the good days continue on. Just when you seem to have a grasp on it, the changes.  I wish I can give you more advice because I am miserable when I get an episode, seems like nothing works when that happens.  I think .. as noted in my title, there is no rhyme or reason, so we cant control what we do not know. I guess acceptance but easier said than done.  I think what works for  doesnt work for someone else. Its like there is a brain in my stomach that is fighting me. Anyway, hope you have better days... for both of us. 

With myself, I suspect fluctuations in serotonin in the gut. And I have no way to exert any control over that. I also notice that I am always worse at this time of year, the Spring. I steady out a lot in summer and in winter usually. For some weird reason I have been worse every day since our clocks sprang forward! And I don't know why because that didn't alter my sleep habits at all. It's given me migraine auras too (light displays in my vision.)

There is no way I want to be prescribed SSRI's as I know in my gut feelings that wouldn't be the answer for me.

[Regina S.]

Hi, I definately think stress is involved.. sometimes, sometimes its food but I am tires of taking so many things to go to the bathroom. Its out of control,  I just dont get it.  I definately do not want to take SSRIs .. I am asking for trouble and a whole new set of issues if I start that.. no way!

 

[Mr.David]

Hello, I am 74 and was having burning pain and cramps on both sides of my intestines and kidney area for several weeks and because I am a veteran and moving into my old home state I did not have a regular doctor. So seven weeks before I could get an intake. My doctor did x-rays and bloodwork and his best guess is IBS-C. I do not have a Gastro appointment yet. Burning pain and cramps every day that seem to move around. Constipation. I tried so many laxatives that the doctor told me to stop taking them because they were irritating everything. The only one that seem to work is Senna. I think it is plant-based. But this does nothing for the constant burning and pain every day. Is constant pain and burning normal for IBS-C. I have had chronic anxiety all of my life. I have come back to Washington state where I had a lot of stress because of losing loved ones, my job closing down and my daughter moving away to school in New York. That was ten years ago. My daughter is a working professional in New York with a great career but I could never afford to live close by. I lived for 10 years in Myrtle Beach South Carolina. Then Covid. And I had to move. I have been moving around a lot and finally have come home. Completely stressed out. I was doing rather well at first and then suddenly got an upper respiratory infection that was bad. On top of that dehydration and constipation and now the constant burning pain. Is this burning and feeling sick ever going to stop? Somehow my sinuses are involved. Familiar to anybody?

[Regina S.]

Hi Mr. David. I am so sorry you are going through this.  Sounds like you have had a lot to endure and no wonder why you have so much anxiety.  I feel bad you are going throught this. I am dealing with the IBS-C ..luckily I havent had a stomach issues is a few weeks,  I cut out some things and now I take some laxitives an psyllium husk. As for the burning cramps on your sides, I am sorry I cant shed any light on this. I am not familiar with that feeling. Are you getting a lot of squishing in your stomach.. movement.. gas? If so, that i the IBS that I had.  Hoping you get to the bottom of this soon.  Feel better.

 

 

[Dee920]

Im so sorry you going through all this. And that you've had so much suffering with this complicated and incurable disease. I suffer from IBS-D/recurring SIBO and I have found the Low Fodmap diet really helps. I follow it pretty closely, severely limiting sugar, gluten, vegs and fruit. It doesn't always work but it helps. A lot. Also, hot water bottle or hot pad and rocking in a rocker helps when things flare up.  I am so sorry.  I wish there was more we could do for each other. But it is good to have this place to talk about it and find support and understanding. 

[Regina S.]

Thank you Dee920, it seems to be in remission thank GOD.. and the Fodmap has helped. My dilema is the constipation.. pumping mysekf up with all sorts of remedies but at least I havent been suffering with stomach discomfort. I do know its a lifelong battle and we van only take it obe day  at a time.