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Hello all, I need some help/advice


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#1 Roby-in-RI

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Posted 24 November 2020 - 05:41 PM

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Hi all, 

 

I'm new here. And I badly need help/advice from people who are going through the same thing. I'll try and keep this short because once I start writing, I can go on for days. 

 

Well to summarize, I'm a guy in my late 40s and last year I had a series of traumatic events happen all with a few months span: 

 

1. Got bit by a random dog in my throat after saving my dog from it. Got IV's of Ciproflaxin and Flagyl pumped into me for 24 hours and was admitted, then had to stay on them for a week.

2. Then, a month later, I started having pressure/pain in my lower abdomen and had a colonoscopy done (all clear, not even any inflammation, weird).

3. Then a few weeks later my stomach pain was immense! Endoscopy revealed gastritis (sooo painful). Was prescribed Prilosec 40mg every other day. (it took me 13 months to get off that crap and I finally did it). Lost so much weight due to not being able to eat it was scary. Cut out all alcohol and caffeine since those things REALLY hurt now.

 

In the following months after that, my colon went from normal to slowly but surely slowing down. I would change/add something to help like all bran, boom all fixed... for like a few weeks. Then that didn't help.  Next I tried flaxseed, wow worked well... then after a few weeks that stopped working... And so on and so on for 5 months until finally... hardly any movement.

 

That's when the side/back pain, and lower side/front pain started. Now I've come to realize that, for me to be comfortable, I need to have a BM once to twice a day. I've always been that way. Even going once a day (but not nearly enough), I was slowly getting backed up. And after a few weeks of this I was in constant nagging pain and had a CT, showed stool backing all the way into my small intestine. The pain was crazy in back, especially when leaning back in a chair or lying down.

 

So I tried senekot and it was amazing. Just one tablet, with the miralax. I filled up the bowl like 3 times. I was joyful again! I had life. I didn't feel the pain of being backed up 24/7. I had to take it daily to go but it was amazing.. for about 4 months. Then, bam... everything slowed down again.

 

That's when my Gastro (finally, after all the Prune juice, fiber, and miralax/colace) decided to try some RXs. Amitiza, Linzess, both kinda worked but not much. But the Linzess helps with some of the pain. But that's it. I tried Motegrity and was praying for it to work but after like 10 days.. nothing. So I went back to Linzess. Maybe I should try the Motegrity for a bit longer? All I know is that motility is the issue. 

 

Tests done so far: celiac (negative), SIBO and numerous gas tests (negative), rectal motility test (ok, but what about the rest of my colon motility?).

 

At least my doc admitted that I have a hypersensitivity to GI pain. (yay me) If I have a complete BM I'm actually great! But that happens only once in a blue moon when all the stars align and I take a little extra stimulant. I can't have anything harsh because of the pain sensitivity. 

 

So now I'm on my 4th Gastro doctor and I'm still waiting for my Barium X-ray exam in a few weeks. He said it's going to check my small bowel. But what about my colon? I'm crossing my fingers, for what, I don't know. To tell me what I already know? I have slow motility?

 

I've been on Senna daily for about 8 months and it scares the crap out of me (no pun intended), that my colon is going to be harmed / burned out / or altered forever. I just heard so many horror stories but I can't get anything out of any of my doctors other than "If you need it, you need it". 

 

When this all started I did everything right, never used laxatives too long, eat very well, etc.. now for the past 8 months, if I don't have some type of stimulant lax (senna mostly, ducolax when senna doesn't completely do it), I just get backed up and in discomfort and pain so fast.

 

On top of this I'm dealing with Hashimoto's auto-immune disease which is being monitored by Rx and my Endo doctor. I'm getting blood tests every few months to make sure my thyroid levels are in the right range. Because at first I thought I found the answer by being diagnosed, and by getting my thyroid levels back to normal range. I figured it would get things moving down there again.. but nope, not so easy! 

 

So here I am, on a daily routine of:

 

Linzess - in the morning
Colace - 2 times a day 
Lactulose - 2 times a day
Miralax - 1 time in the middle of the day
Senna (Senekot) 2 tabs (one dose) at night

 

And this is just to go a bit and still have pain later on.

 

I just don't feel any joy anymore, this is taking so much out of me. I just need direction and help. I'm taking so many osmotics, I'm downing a ton of water a day and peeing like crazy because of it so I don't get dehydrated, and take electrolytes so I don't get an imbalance either.  I realize everyone's body is different, but I'm willing to try anything once. I'm going gluten free because why not. It's can't hurt. I'm even looking into Hypnotherapy.

 

Can anyone ease my mind about stimulant laxative use because It's really the thing that worries me the most. I feel if I need stimulants to go normally and not be in pain when there's stool still in my colon... Won't this get worse and worse over time since stimulants cause dependency and harm or alter the colon? 

Also should I try the Motegrity again for a longer time? Can I try both Motegrity and Linzess? 

 

Sorry that was too long. I knew that would happen. But I'm out of answers and feel so helpless right now. Please tell me there is hope. Thanks for reading.

 

Rob



#2 annie7

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Posted 24 November 2020 - 06:09 PM

so sorry for your problems.  living with chronic constipation is miserable.

 

re  tests:  the sitz marker test (colonic transit study) measures colonic motility.

 

my gastro doc, who is one of the best in the country, told me to take whatever i needed to go and that it was safe to take stimulant laxatives.  see the links i posted below; they all say the same thing.  so if you need to take them (like i did) then take them.  

 

i know people who take both linzess and motegrity.

 

here are the links re stimulant laxatives:

 

https://pubmed.ncbi....h.gov/15654804/

 

https://pubmed.ncbi....h.gov/12702977/

 

https://pubmed.ncbi....ih.gov/8234421/

 

https://www.ncbi.nlm...les/PMC2809429/

 

good luck with everything....


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these are just my own thoughts. for expert medical advice please contact a health care professional.


#3 Kenny

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Posted 27 November 2020 - 03:29 PM

@ Roby-In-RI :If i understood your post correctly , looks like your problems started after  you "Got IV's of Ciproflaxin and Flagyl".

 

I am assuming you had no problems with constipation prior to this ??

 

Have you considered the theory that maybe the antibiotics have destroyed your healthy gut flora ? Maybe trying to restore your gut flora with probiotics will help you ?



#4 Gooby

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Posted 27 November 2020 - 03:48 PM

@ Roby-In-RI :If i understood your post correctly , looks like your problems started after  you "Got IV's of Ciproflaxin and Flagyl".
 
I am assuming you had no problems with constipation prior to this ??
 
Have you considered the theory that maybe the antibiotics have destroyed your healthy gut flora ? Maybe trying to restore your gut flora with probiotics will help you ?


I had a similar experience in that I had an infection and then two massive courses of antibiotics to cure the infection. Before that I never had constipation issues at all. I could eat all the white bread, cheese, donuts, etc. I wanted to eat and never had constipation. I would go like clockwork every morning with one big stool in the shape of my lower colon, fully formed together, no pebbles or stones or even cracks indicating constipation, and almost as important, that was it. I was done after that for the day. There was no incomplete evacuation of my colon and rectum. Nothing lingering behind in my rectum for the rest of the day. But after the antibiotics, everything changed, everything slowed way down. And yes, various things worked at first and then stopped working. The problem with ordinary probiotics you can buy online or at the store is that they are mainly the kind found in yogurts and lacto fermented veggies, and sadly, they do nothing about chronic constipation. They are not the right kind of bacteria for that part of the colon. What might work would be a fecal matter transplant, but even those are not even 40% effective. They fail for constipation most of the time.

One thing that worked for me for a number of months was fasting (but drinking only water with electrolytes like SmartWater) for a week at a time each month. Somehow it seemed to reset my digestive system or give it a break and let it rest. Also, contrary to what you might think, less food is better. Overeating is one of the worst things you can do. The smaller the meal is, the easier it is on your weakened digestive system. I am going to try it again after I do a colonoscopy prep and clean it out fully again, and then take a week off from eating. And I am going back to tiny meals again. Good luck.

#5 aries_wmn

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Posted 30 November 2020 - 03:07 PM

One thought. My GI doctor says the tests for SIBO aren't all that accurate, so she treats for it without testing. May be worth asking your new GI doc about it.



#6 Roby-in-RI

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Posted 04 December 2020 - 09:39 PM

so sorry for your problems.  living with chronic constipation is miserable.
 
re  tests:  the sitz marker test (colonic transit study) measures colonic motility.
 
my gastro doc, who is one of the best in the country, told me to take whatever i needed to go and that it was safe to take stimulant laxatives.  see the links i posted below; they all say the same thing.  so if you need to take them (like i did) then take them.  
 
i know people who take both linzess and motegrity.
 
here are the links re stimulant laxatives:
 
https://pubmed.ncbi....h.gov/15654804/
 
https://pubmed.ncbi....h.gov/12702977/
 
https://pubmed.ncbi....ih.gov/8234421/
 
https://www.ncbi.nlm...les/PMC2809429/
 
good luck with everything....


Thank you for the links Annie. And the reassuring words. I will definitely ask about the Sitz test next time I meet my Gastro in Jan. I guess I was really surprised, frustrated, and really bummed to find out that the doctors really don't have the answers I thought they would. There are still so many unknowns when it comes to gut flora and the brain-gut connection.

Another thing I realized about these constipation RX's are that they seem to trade one discomfort for another.
Like Linzess works a bit.. but if I take it for too many days it creates really uncomfortable pressure in my front sides. Plus a ton of gas too. So I'm constantly bouncing back and forth between taking it on and off just to get the helpful effect but not enough to cause more pain.

I think the most aggravating thing is not being able to sit back in a chair for a while without pain creeping up where the descending and ascending colon are. I know that if I'm completely cleaned out, I have very little pain. But I need to eat to live so I feel like I'm caught between a rock and a hard place.

Here's hoping for more tests. Thanks again

#7 Roby-in-RI

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Posted 04 December 2020 - 09:44 PM

I had a similar experience in that I had an infection and then two massive courses of antibiotics to cure the infection. Before that I never had constipation issues at all. I could eat all the white bread, cheese, donuts, etc. I wanted to eat and never had constipation. I would go like clockwork every morning with one big stool in the shape of my lower colon, fully formed together, no pebbles or stones or even cracks indicating constipation, and almost as important, that was it. I was done after that for the day. There was no incomplete evacuation of my colon and rectum. Nothing lingering behind in my rectum for the rest of the day. But after the antibiotics, everything changed, everything slowed way down. And yes, various things worked at first and then stopped working. The problem with ordinary probiotics you can buy online or at the store is that they are mainly the kind found in yogurts and lacto fermented veggies, and sadly, they do nothing about chronic constipation. They are not the right kind of bacteria for that part of the colon. What might work would be a fecal matter transplant, but even those are not even 40% effective. They fail for constipation most of the time.
One thing that worked for me for a number of months was fasting (but drinking only water with electrolytes like SmartWater) for a week at a time each month. Somehow it seemed to reset my digestive system or give it a break and let it rest. Also, contrary to what you might think, less food is better. Overeating is one of the worst things you can do. The smaller the meal is, the easier it is on your weakened digestive system. I am going to try it again after I do a colonoscopy prep and clean it out fully again, and then take a week off from eating. And I am going back to tiny meals again. Good luck.

@ Roby-In-RI :If i understood your post correctly , looks like your problems started after  you "Got IV's of Ciproflaxin and Flagyl".
 
I am assuming you had no problems with constipation prior to this ??
 
Have you considered the theory that maybe the antibiotics have destroyed your healthy gut flora ? Maybe trying to restore your gut flora with probiotics will help you ?


Thanks for your input Gooby and Kenny.
Correct I was fine and regular before. I may try the fasting thing but I'm already too skinny for my height and I'm afraid of losing too much weight. But it is something I would like to try, even if it just gives my colon a rest from all the crap I need to take daily. I'll give it a shot for a few days.


I've also tried multiple probiotics as well as getting them from foods. So far I've tried Culturelle, Philips colon health, Align, and Garden of Life's brand that has 23 different strains. I honestly can't tell if they help or not. But I take one anyways once a day

#8 Roby-in-RI

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Posted 04 December 2020 - 10:15 PM

So with my hypersensitive GI tract, I've also been trying to ease the pain so I can have some semblance of a normal life. Pretty much everything my Gastro doc recommends are anti-spasmotics which is odd since almost every one of them has constipation as a side effect. But sometimes they help with the pain.

The other issue is that they all make me sleepy so I can't take them during the day. Some of them I can't even afford. I don't have all the names in front of me now, but I'll post them here when I get a chance.

Does anyone have any natural recommendations to help with the pain of a super sensitive colon? I can't take NSAIDS due to it effecting my stomach and I definitely want to stay away from opiods. I drink peppermint tea sometimes, and fennel tea as well. I'm open to other things to try, if anyone has any things that they have tried.

#9 annie7

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Posted 05 December 2020 - 08:58 AM

yes, do get some tests done.  that way you'll have a better idea of what's going on.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#10 SumitG

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Posted 14 December 2020 - 05:18 PM

Roby - Sorry to hear about your condition.

 

I have had these issues for last 17 years. I have started relying on Ayurveda after so many years of meds, laxatives, and what not. Ayurveda can help you manage it on day to day basis but complete cure is still not there for some. Your anxiety will come down, you will start enjoying and start having control on your day and routine with BM becoming more predictable. 

 

I control my food and diet based on what suits my body type (every body type is different as per ayurveda). And I take shiro-dhara therapy sessions for a deep calming effect. Ayurveda therapies take time to show results and in 2-3 months you would be much happier person. Unfortunately, due to covid, these therapies are suspended at many locations. Even i am waiting for them to resume and currently doing meditation at home instead. One thing which is good for C type IBS is dried figs. It relieves gas and heat accumulated in body from stool not passed properly. And it provides roughage which binds your stool. Let me know if you want to know more. Happy to share my experience with various foods.



#11 Roby-in-RI

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Posted 14 December 2020 - 08:14 PM

Well I just recently had a Barium Xray to rule out any small bowel issues. But it looks like I passed that test with flying colors.

 

Sadly it's been a painful few weeks. Although I did actually have 3 to 4 days in the past month where I was actually semi ok. It's never longer than a day though. 

 

Today has been really bad. This morning I actually had diarrhea for the first time in forever.  I'm not sure what is going on but at first I was relieved, but an hour later the pain just started increasing in the lower backside of my colon. 

 

I'm just venting. I wish my doctors would test me for other auto immune diseases since I already have Hashimoto's and my father was diagnosed with celiac later on in his life. I had a celiac test last year that was negative, but who knows.

 

So far I've been diagnosed with IBS C but I can't help but feel I have a painful inflammation issue in my colon. The doctors are always thinking spasms or gas. And maybe sometimes it is. But it feels like there's more going on in my colon. Right now it's almost a burning pressure feeling. That pressure pain feeling up and down both sides of my back. I mean, am I at the beginning of and IBD like ulcerative colitis? That's how much the pain is half of the time.

 

I didn't want to get another colonoscopy done since I had one last year, but my gastro is for it. And with this much pain and discomfort for this long of a time, I feel like I don't have a choice.  Thanks for listening. I'm hoping tomorrow is better..



#12 Kenny

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Posted 15 December 2020 - 04:27 PM

If you are suspecting UC , here is the story of a guy that cured it with kefir . He was officially diagnosed with UC

 



#13 Roby-in-RI

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Posted 15 December 2020 - 08:50 PM

Roby - Sorry to hear about your condition.
 
I have had these issues for last 17 years. I have started relying on Ayurveda after so many years of meds, laxatives, and what not. Ayurveda can help you manage it on day to day basis but complete cure is still not there for some. Your anxiety will come down, you will start enjoying and start having control on your day and routine with BM becoming more predictable. 
 
I control my food and diet based on what suits my body type (every body type is different as per ayurveda). And I take shiro-dhara therapy sessions for a deep calming effect. Ayurveda therapies take time to show results and in 2-3 months you would be much happier person. Unfortunately, due to covid, these therapies are suspended at many locations. Even i am waiting for them to resume and currently doing meditation at home instead. One thing which is good for C type IBS is dried figs. It relieves gas and heat accumulated in body from stool not passed properly. And it provides roughage which binds your stool. Let me know if you want to know more. Happy to share my experience with various foods.

It sounds interesting. The figs I have heard about but not about the heat part. I can try it. I was looking into a Naturopathic doctor here in my state but we don't have health coverage for that via insurance yet. Funny thing is the state next to me does. Unfortunately it's too expensive. I wish money wasn't an issue but it is for me right now.

Right now the Linzess both hurts as much as it helps. Some days I just want to stop taking all the crap I'm taking to give my poor colon a rest but the last time I tried that I got backed up fast and it was immensely painful. It's like I have to pick which pain to live with. Nighttime is the worst I notice.

And other foods have you tried that ease the colon but don't cause more pain or slow it down?

Have you tried kiwi fruit? My doctor mentioned to give that a try if my colon can handle it.

#14 Roby-in-RI

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Posted 15 December 2020 - 09:09 PM

I'm curious, has anyone been given antispasmodics for their pain? I'm wondering because thats all they seem to prescribe me when I mention the pain I'm in.

Dicyclomine and hyoscyamine were prescribed first and I only take one very rarely, and only at night. I also don't take them often because they can cause constipation. Seems like everything does.

I haven't tried these below because they were not covered by my insurance.

Chlordiazepoxide-clidinium was one, and phenobarb-hyoscy-atropine-scop was the other.

I was just wondering if anyone had experience with any of these.

#15 SumitG

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Posted 15 December 2020 - 10:37 PM

I havent tried kiwi fruit for my condition, but i just googled and saw that Kiwi pacifies the gas in your body. So you can definitely take, because  IBS sufferers predominantly have lot of gas issues. In fact, the pain in stomach, if not because of any physical deformity, is nothing but the gas which is troubling you there. 

 

For pains - try foods, fruits and drinks which pacify your gas (also known as vatta in ayurveda). Some foods which I can recommend off hand are ginger, buttermilk, fish and many more. Attaching a link below with a good list to choose from. Dont take cold water at all, instead have lukewarm water. Fig also is helpful but roughage content in fig can lead to gas in your gut if you eat too much of it and dont consume enough water along with it. Fibre absorbs water from your body so with fibre intake, you have to have good water intake, else it leads to constipation and gas (which is the opposite of what we want to achieve). I started with 1 fig a day soaked overnight but eventually settled with half a fig because too much fibre started troubling me after some days. You have to see what suits you. The weather in your location also plays a role into what you should eat. In case you are interested to read more, I can recommend svasthaayurveda.com. Below are some links 

 

www.svasthaayurveda.com/how-to-balance-vata/

www.banyanbotanicals.com/info/ayurvedic-living/living-ayurveda/diet/vata-pacifying-diet/


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#16 Kenny

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Posted 20 December 2020 - 01:56 PM

I'm curious, has anyone been given antispasmodics for their pain? I'm wondering because thats all they seem to prescribe me when I mention the pain I'm in.

Dicyclomine and hyoscyamine were prescribed first and I only take one very rarely, and only at night. I also don't take them often because they can cause constipation. Seems like everything does.

I haven't tried these below because they were not covered by my insurance.

Chlordiazepoxide-clidinium was one, and phenobarb-hyoscy-atropine-scop was the other.

I was just wondering if anyone had experience with any of these.

I have tried antispasmodics (You name it , iv tried it ).

 

But I do not suffer from pain , I tried it just to see if it helps relieve any of my IBS symptoms. My gastro put me on Mebeverine(I was on it for 3 months) .

 
It did not help me one bit (I experienced no side effects though so if your doctor recommends it , I think its safe to try)

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#17 Roby-in-RI

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Posted 11 January 2021 - 09:11 PM

So far, not so good sad.png

 

I tried the fasting and it did help a bit but I got very weak. I could only do it a few days and had to eat something. I added Kiwi fruit and I can't tell the difference. I think it's because when I'm in this much pain it's hard to tell is something is helping even a little. I used to eat tons of fiber, now it seems I can't tolerate it at all now. 

 

Thank you for your advice everyone so far though, it appreciated.

 

But this pain is wearing me down. I'm trying so many things. Things that should work. My doc wants me to up my Mirilax and not take the Senna. So I did that for a few days and omg the pain was even worse, I had to get back on something so I tried a super cleanse with cascara sagrada and a lot of  herbs like slipper elm, marshmellow root etc.. Finally went a decent amount but 3 hours later the pain is back.. Just constant.. Night time is the worst, and in the morning is not much better due to the pressure on my sides or back from the mattress. 

 

I keep telling these doctors it all comes down to this::  If I'm empty, I'm in no pain, like after a complete clean out. As soon as I start eating, later on in the day the lower back pain / side pain / lower ab pain just comes right back. No matter what I eat, and I'm pretty restricted by this point. I'm basically living off oatmeal and soup at the moment.  It's almost as if my poor colon has no protective lining and can't take the gastric juices and bile my body is making to break down the food. And since it's not moving it just sits there and burns.

 

Feels like i'm at the point where the stimulants may be harming me but at the same time without their help I'm in just as much pain with no motility.

 

Just venting again. I have a date with a second colonoscopy Feb 19th at least. And even though I can't afford it, I have an appointment with a really good Naturopathic doctor, who will at least listen to me. On top of that I'm finally seeing a psychologist just to help deal with the mental anguish part of all this. I just can't do this alone anymore. 

 

Funny thing is I'm actually a very positive person! Here's hoping next time I post I'm in a better place than where I am now. 



#18 Roby-in-RI

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Posted 11 January 2021 - 09:18 PM

If you are suspecting UC , here is the story of a guy that cured it with kefir . He was officially diagnosed with UC

 

Thanks Kenny, I'll look into it. This does look suspicious as it's an ad for selling his services but I'll keep an open mind about anything until I learn more



#19 GJMody

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Posted 12 January 2021 - 05:27 AM

Kenny thanks for posting the video. I drink kefir daily and keep my diet simple. I have IBS-C. I also have bipolar disorder. Because of bipolar meds I had constipation. But my psychiatrist didn't change my meds inspire of constipation side effects. Then I read about kefir. So now I take 3 dulcolax every third day and kefir - one or two glasses daily. This has helped my constipation. I also take prucalopride - 4 pills a day and 50mg Lesoride once daily. Regarding diet I have cut out trigger foods - no dairy, no meat, no junk food, no wheat, no sweets. I eat rice n lentils, sorghum bread, corn bread, salad, veggies. I also take Miralax.

#20 GJMody

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Posted 12 January 2021 - 05:28 AM

*inspite





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