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Anyone out there with IBS?

post #1 of 25
Thread Starter 
This is a relatively new one for us, but Gary is SO suffering.

What has worked for you? And do you have any good links to sites with info?

Gary has always been a big "fried food" fan - but things are getting so uncomfortable for him that I think he's close to being willing to radically change the diet. Any tips, links, thoughts or suggestions would be appreciated!

Laurie
post #2 of 25
I have been googling GERD diets and info all morning for my husband. Ran across this site as well that's specifically for IBS: http://www.aboutibs.org/Publications...uidelines.html

Hope it helps!
post #3 of 25
I have IBS with a dash of "we think it's Crohns"
I avoid all fried foods, all milk products, certain vegies... and somtimes even chocolate *ACK!*
I am on Amnytriptaline and Sufasazamine (sp?) I have in the past been on oral steroids and I recomend against them.
This is a great list of resources http://www.dragonpack.com/ibdsupport...s/support.html

I will look at my resources I have at home tonight and give you a PM
post #4 of 25
I have IBS, but its IBS with constipation. I have to get at least 40 grams of fiber a day, and eat very little "white" starches. I don't know anything about just regular old IBS though. I was prescribed Zelnorm, but I only take it when I absolutely have too. If I take it everyday it gives me migranes.
post #5 of 25
My doc thinks I might have IBS but I don't know a whole lot about it. I mainly try to avoid certain foods (sodas, desserts or anything mostly sugar, and anything greasy or spicy), especially on an empty stomach. Also I know that stress can make it a lot worse so when I start to feel bad, I really try to relax.
post #6 of 25
I think I remember that Gary has been under some pretty heavy stress lately, and that just kicks this stuff into high gear.

I had to carry immodium and kaopectate with me EVERYWHERE. When I got ready to leave the house to go to the bus stop, halfway there I would have to turn around and go back home.

If he can seriously find some way to relax and use the immodium and kaopectate (unless it is the constipated kind....mine wasn't) and watch his diet maybe he can avoid going to the doctors. I put up with this for about a year and half, never mentioned it to the doctor (I was too embarassed) and after a while, like after I got my car....it all stopped.
post #7 of 25
I take immodium with me too. I really think that stress is the main factor, and then food.
post #8 of 25
before I was diagnosed I spent a fortune on Pepto, immodium and all that stuff, nothing worked I was going nuts.
post #9 of 25
Thread Starter 
I REALLY appreciate the feedback. And yes, there's been a LOT of stress in our lives. We're actually pretty sure it's related in some way to the cluster headaches. There is a study out there indicating that both have to do with seratonin somethings and that there is a link - but that doesn't help solve either problem.

I think what may have "set it off" is the caffeine. For many people, caffeine is a powerful and quick abortive for the clusters. When Gary was in cycle before (Mar - Aug), he discovered in June-ish that espresso really worked well and quickly. But of course it throws your gastro system into spasm if you're not used to it. ....and he got up to 20+ espressos a day!!!!!!!!

Even now when he's having a bad attack, he'll do 2-3 espressos. The way he figures it, having the pain and problems of the IBS is a lot better than wanting to shoot himself because his head feels like it's imploding while his sinus feels like its exploding, along with feeling like his eye is being dug out of his head with a red-hot drill. (Clusters are supposedly 100x more painful than migraines - and when in cycle, they hit 2 - 8 times a day and last for 1/2 hour to 3 hours. They're INSANELY debilitating, and they are called "suicide headaches").

His IBS is with diarrhea, not constipation, and the poor guy is going to the bathroom 20+ times a day sometimes. He's done all the "oscopies" and biopsies - and they've put him on tincture of opium to slow his system down. But having been a heroin addict as a teen and having just gone through everything we have with Naomi, he really doesn't want to use this as a long term solution (it isn't helping a whole lot at the dosage level Doc recommends anyway). ...and the over-the-counter products stopped working long ago.

Personally, I think focusing on diet at this point is going to do more than anything to help. But other than cutting down on the amount of fat in the diet, I'm not sure where to go - which is why I've been looking for good links. Otherwise we're just at a loss. And for the bad cluster attacks, he just can't give up the caffeine - although we know it's making everything so much worse.

Thank you so much for your thoughts, help and input!

I should probably go looking for some good books, too.....

Laurie
post #10 of 25
First off- what kind of IBS does he have? Because what might help one kind- may several harm another. I have severe IBS with diarreah. It's a nightmare I also have gastroparesis (delayed stomach emptying- i'm one of the few oddballs out there with this condition that does not have diabetes- also- what happens with this is like a dumping syndrome- all of the food will be delayed digesting - then when it finally does- it gives me aweful diarreah (sorry if that was tmi- but it kind of explaines it), severe GERD, a hiatial hernia as a result of the gerd, lactose intolerance, and just found out recently that i have polycystic ovarian syndrome. it's a lot- and to be honest- there's not much they can do for the majority of my GI problems- because what they would do for one issue would make another one worse. So right now we treat the ones that are the worst- which would be my GERD for me- i take two Zegarid a day to help keep it under control (and i'm only 21and healty) There is nothing they can do/give me for my IBS- they tried and it got worse/stayed the same depending on the medicine. i even tried taking imodium in the mornings to help throughout the day- doesn't phase me. So right now- i just watch my diet- which is hard to do because at one point they had me on low residue, low fat, the gerd diet, yeat free die- things like that- but you know what- once i stopped worrying about what i could eat- i kept a food journal and through trial and error i figured out what triggered my symptoms and what didn't and that has helped a lot. So first and foremost- keep a food journal and take that to every doctors visit so they're on the same page as you are. Also- my dietician i went to once was a total idiot- she made my symptoms worse than better- so i'd say don't waste your money on that if you can help it- try to just avoid the foods that trigger his symptoms. / They might give him protonix or zelnorm if he has ibs with constipation- but see, since i have ibs with diarreah- that's a no-no for me because it would make mine worse. So make sure you know what kind he has first. Also- the biggest side effects as far as ibs goes for me are cramping and diarreah- and it's EVERY day for me. Also- coupled with the pcos- the cramping is a nightmare lately- so what has helped me a lot is using a heating pad on my abdomen when i'm home and also those thermacare heat wraps when i'm out that and just sticking to foods that i know won't aggervate me. I avoid all milk and instead use lactaid milk! it's awesome and tastes just liek the real thing you can cook with it and everything. Be sure your hubby is tested for food allergies if he hasn't already been- because a food allergy can really trigger IBS. (for me- i can't have much dairy, and they think i have a yeast allergy- so i'm getting tested in march.) Good luck!

also- your hubby might be they type they can help alieve his symptoms with medicine. for me- they can't because what would make one thing better would aggeravte another. so there's pretty much nothing they can do for me right now as far as my ibs goes- i just try and watch my diet and i know where every bathroom is on the way home- it gets frusterating. i feel for him. I am always going to the bathroom and there's nothing that really helps- one thing that is really good though are those Cottonell Fresh Wipes- they're really gentle and reduce the odds of him getting hemmroids if that's an issue for him. Also- i do not recommend some of the meds you said they put him on- namely the opium- the side effects can be worse and overall give him more issues than help him. I wish i could help you out more i really do- but they've yet to even figure out how to help me- i'm pretty lost about the whole thing. The GERD is compeletly managed with my medicine....but the IBS- it's still a nightmare Just make sure he avoids foods that trigger his symptoms and also- keep him away from super sugary and caffinated things.

one last suggestion- has he had a Gastric Emptying study done yet? that might be somethign worth looking into- it will tell them how fast his bladder and stomach empty and might be able to give them a better idea of how to treat him. All they do is give him eggs and water to eat and drink and take x-rays of his stomach every 15 minutes until it's digested. the eggs/water are radiocative- but they are safe- i had it done not too long ago- it's no more radiation than you'd get from a normal x-ray. they've done everything on me- upper and lower scopes, biopseys, ct scans, ultrasounds, tons of blood and other tests, bravo ph monitor implant- everything.....and they got the most information from the Gastric Emptying study and upper scopes on me. (if you can save some money that way- try those two first sweetie).
post #11 of 25
i have had ibs since i was 11 and now im 24. it never goes away although it can die down for years then start back up again.
stress is a big part of ibs and can easliy trigger it off, a bad diet is also a no no , even though i still eat a lot of fried stuff and takeaways but belive me i suffer. i can be doubled up in pain for hours if a bad attack comes along. that is manly with the consterpation side of it . the other side Lose stools. i have a problem with that one the most. if i need to go i have to go right there and then. so i have to be carfull while outside. i havnt been to my doctor since i was a kid about it . but i will be going soon as its getting to a stage where i cant go out very far from home. i used to take iboufuin(not sure how its spelt) that helps relife some of the sweling and pain. i know in most chemists they do some stuff for it but cannot remember the name. you can ask your doctor for a diet sheet of what not to eat , and things to eat to help with it.
if he gets the constapation side of it with the really major pain . i found sometimes a bowl of any sort of weat ceral can help. it has done with me in the past . normally shredies lol.it is not uncommon , but can be very painfull and can even effect your job if you suffer bad , it did mine.
wish him well with it .
post #12 of 25
also wanted to add that i canot rember the last time i went a day without having some sort of cramp or pain in my stomach , or when a week went by with out a bad mirgrain. with my ibs i can go a yr with having the bad diarreah , which is where if i need to go i have to go there and then. that is not nice i can tell ya ( never been caught out just yet though) then all of a suddon i will be constapatied then i will be in bed the hole day up to a week in agony. then it will be back to the diarreah. but its my own fault as i am not a healthy eater. never have been , any sort of veg makes me fell sick belive me iv tried force feeding myself with it lol. pasta i hate rice i hate. a very fussy eater me.i can go anything from 2 times a day up to 10 times a day. depending on how bad it had been that day.
i know this sounds very daunting but it dosnt have to be . with me i perfer to try and ingor the situation then do something about it. stupid i know.
post #13 of 25
I was diagnosed with IBS as a teenager. My dad had an ulcer and I was raised on a ulcer diet - nothing fried, nothing spicy, boring meat and potatoes.

I got IBS when I moved out of the house and started cooking for myself, and I cooked what I had eaten all my life. My IBS was more on the constipation side with serious (bent over in pain) cramping whenver I ate things like onions (Whoppers used to kill me but I loved them), fried foods, etc. By the time I had the diagnosis and the doctor saw my diet, he told me to convert over to high fiber and spicey foods. The IBS was triggered by the bland diet and my system couldn't handle irritants the rare times I ate them. Within a year, all symptoms stopped. Knock on wood, I don't have symptoms unless I get a lot of stress in my life and I just work on stress management when that happens.

Poor Gary!!
post #14 of 25
either case of ibs, constipation or the opposite, you should eat fiber. Fiber puts you in the middle. If you get constipated, it will loosen things up and if things are too loose, it will firm everything up.

I had my gallbladder taken out last year and since then, my ibs has been even more horrible but if I eat a yogurt a day...i have no symptoms.

I think you have to find what works for you. It's also worse for me if I don't eat breakfast. I have to eat regularly. If I skip a meal and then eat...20 minutes later, i'm in the bathroom.

I hope your husband will find what works for him, it's no fun, that's for sure!
post #15 of 25
I have dealt with colitis aka IBS and diverticulitis since I was 11

I drink aloe juice or gel( the latter is better but tastes ick...) .Take enzymes before eating fattening or high high fiber foods ... PROBIOTICS... lots of green tea ... watch the insouble fiber leval ( keep it moderate and souble moderate to high) ... I watch my gluten as that triggers it for me ... Feel free to PM me .. as my brain froze
post #16 of 25
Thread Starter 
Unfortunately, yogurt is out of the question. I eat it - but he just can't deal with it in any way, shape or form.

He's had gastro problems since we've been together. Ulcers, GERD. He's been on Protonix for years. He's had surgery. But this? He was throwing up and had constant diarrhea when we went back to the gastro docs. He got tested for everything again. Hasn't done the stomach or bladder emptying studies though -didn't even know those existed.

The issue with him is diarrhea, and it has been since August, really. No constipation problems at all. No relief. No break. And even with the tincture of opium, he's still in the bathroom up to 20+ times a day. A good day is when he just has to go like 8 or 10 times.

Everything seems to be a trigger. He even fasted for 2 days. So I guess water is a trigger! Or his system just won't "reset." And as to the vomiting -the doc said that basically the gastro system is "one smooth muscle." And depending upon where the food is when his system spams, it either comes out as vomit or diarrhea.

It doesn't matter what he eats (so far). Within a few minutes he's in the bathroom. What we can't figure is why he's not losing any weight.

Anyway, the search goes on.....

Laurie
post #17 of 25
Thread Starter 
Quote:
Originally Posted by sharky View Post
I have dealt with colitis aka IBS and diverticulitis since I was 11

I drink aloe juice or gel( the latter is better but tastes ick...) .Take enzymes before eating fattening or high high fiber foods ... PROBIOTICS... lots of green tea ... watch the insouble fiber leval ( keep it moderate and souble moderate to high) ... I watch my gluten as that triggers it for me ... Feel free to PM me .. as my brain froze
We do drink a LOT of green tea.

Laurie
post #18 of 25
I have mild IBS....the biggest things I avoid are dairy, sweets, coffee/espresso (ugh, I think coffee is the WORST for me) and heavy/fried foods.

I don't really medicate...I take immodium with some success. Getting a good night's sleep and yoga and also learning how to pause and rest during the day help me more than meds have. But I'm also a mild case.
post #19 of 25
I have IBS-D, wee fun. Anywho, mine left for quite sometime and I'm trying to figure out if it's back. When it was really bad I was on Lotronex and Lomotil. I'm pretty sure Lotronex is off the market though- but it really worked for me. I've also done Bentyl and Donnatal.

I highly recommend www.ibsgroup.org

It is a wonderful self-help organization with an amazing message board and tons of info on IBS, treatments, foods, clinical trials, etc.

The best advice I can give is for him to do an elimination diet- this is important because what triggers him may not trigger others and vice versa. Caffeine, chocolate, and spicy foods do not trigger me, but they are a major trigger for some others.

With the elimination diet start off with clear liquids and move up with bland foods, adding one every few days or so. Start with water, tea, broth- advance to plain boiled potatoes, applesauce, jello, advance to plain toast and just keep going. This will help identify triggers. The BRAT diet is a good idea to start with- Bananas, Rice, Applesauce, Tea (herbal tea like chamomile is a good start, as Green Tea could potentially be a trigger).

Keeping a food, stress, symptom, and lifestyle journal is important. He should log what he eats and what happens and if anything was out of the ordinary or stressful that day. Also pay attention to stress symptoms like tightening jaw, grinding teeth, stiff neck, etc. Stress can be a huge trigger.

I had success with cognitive behavioral therapy, diet, and exercise, with medications like Lotronex to stablize things.

I can't remember if you mentioned medical testing, but colonoscopy, sigmoidoscopy, endoscopy, upper and lower GIs can all be important in eliminating something more serious. Don't forget about getting tested for parasites as well.
post #20 of 25
Have good old food allergies and intolernce s been ruled out??? I vomit if I eat something I am allergic too
post #21 of 25
Thread Starter 
Quote:
Originally Posted by sharky View Post
Have good old food allergies and intolernce s been ruled out??? I vomit if I eat something I am allergic too
That we did do. He's not allergic to anything.

I'm going to check out the various links. We were hoping to find suggestions for "tricks" to get his system to reset. Because he's done the fasting routine, and even just water for two days kept him running....

Laurie
post #22 of 25
I hope you can find what works for you soon. I know it's very frustrating, and usually takes quite a while to figure everything out.
I kept a food journal for over a year, then analysed it to draw connections.
Also the stress conection can't be overstated. It's amazing what stress does to the body. Once you learn to recognize the signs and react it's just amazing what a difference it can make to your life!
You have to keep trying to find the answers, don't get disheartened when things don't immediately change. It can really take a while!
post #23 of 25
Quote:
Originally Posted by LDG View Post
Unfortunately, yogurt is out of the question. I eat it - but he just can't deal with it in any way, shape or form.

He's had gastro problems since we've been together. Ulcers, GERD. He's been on Protonix for years. He's had surgery. But this? He was throwing up and had constant diarrhea when we went back to the gastro docs. He got tested for everything again. Hasn't done the stomach or bladder emptying studies though -didn't even know those existed.

The issue with him is diarrhea, and it has been since August, really. No constipation problems at all. No relief. No break. And even with the tincture of opium, he's still in the bathroom up to 20+ times a day. A good day is when he just has to go like 8 or 10 times.

Everything seems to be a trigger. He even fasted for 2 days. So I guess water is a trigger! Or his system just won't "reset." And as to the vomiting -the doc said that basically the gastro system is "one smooth muscle." And depending upon where the food is when his system spams, it either comes out as vomit or diarrhea.

It doesn't matter what he eats (so far). Within a few minutes he's in the bathroom. What we can't figure is why he's not losing any weight.

Anyway, the search goes on.....

Laurie
I'm exactly the same way as your husband- nothing helps my ibs with diarreah except my diet. also- please bring up the Gastric Emptying Study with his GI doctor- that is the only test that really helped my doctors have a grasp at the magnitude of my issues. One suggestion- go to Walgreens or your local store and buy a can of FiberSure (in the green bottle) put it in everything you cook! It will harden up his stools when he has diarreah and loosen them if he gets constipated- it is a wonderful metiator so to speak. It helps. I also vomit extremly bad as a result of my GERD (so much so it's caused a hiatial hernia.) they had me trying nexium, prevacid, mylanta, tums,zantac, and quite a few other things- the ONLY thing that has ever helped me is Zegarid- and one single does is not enough -i have to take a double dose- one in the morning and one at night. They will not do surgery on me for my GERD symptoms because it will make my IBS and gastroparesis worse- i'm wondering if the surgery they did on your hubby for his gerd symptoms has made his IBS worse? It's something to ask his doctor about for sure. I also tried the fasting thing - didn't work, i still got sick- and was not only sick but miserable because i was starving. My biggest suggestion is for him to talk to his doc about a Gastric Emptying study, keep a food journal- identify and eliminate trigger foods (it takes a while for them to completly get out of his system- which is why he can go even a day or two and still get sick- if he has gastroparesis it will show up on the gastric emptying study- the thing with Gastroparesis- is it's a delayed emptying of the stomach- which you'd think he wouldn't have since he's going to the bathroom all the time- but what happens with me (i have it) is that I will eat- and it will stay in my system (causing bloating and cramps) then all at once- my stomach will have spazms and it will empty everthing at once....hence the "dumping syndrome" or diarreah. So everytime you eat- the symptoms happen over and over again when you eat "trigger foods" So he's really got to be patient and keep a food journal- he's got to identify what sets him off (and for me-sometimes it seems like EVERYTHING does for me- but make him stick with it- once his stomach finally settles down- he will begin to identify what he can/can't have.) Also- you mention he had allergy tests done already- but did they test for certain allergies that are food related? They normally do not for standard tests. You have to request additional ones- particurally for Gluetin (wheat and things of that nature- it's in virtually EVERYTHING! They'd do a celiac blood test on him to rule out celiac disease which is a gluetin allergy- they did it to me and it took only a few minutes for them to draw the blood.- i was negative by the way- but had tried the celiac diet- it was AWEFUL- but i will say- if he has it- Wild Oats- identifies ALL of their gluetin free products and many can also be found at your local grocery store- there are ways to cope if he has it- and i have lots of recipes too if he needs it from when i tried the celiac diet) / Also- have Yeast ruled out- there is a book called "The Yeast Factor" and there is an online group i believe it's called "the tuesday morning club" - or something to that effect- try googling it- they have TONS of insight into Yeast allergies- which, once again yeast is in tons of things- so it could very well be a yeast or other food allergy- so please make sure he's been tested for those. I am having another round of allergy tests in march (specifically yeast and other foods) to see what all is going on with me. I'm sorry this is happening to your hubby. But please let him know he's not alone and there are other people out there just like him who are going through the same thing- it might make him feel a bit better pm me if you wanna talk more about this. Also- if he's having IBS with diarreah- do not touch protonix as one of the side effects of that drug is diarreah in and of its self- it could make him much worse. / For now thoguh- definitely make him start a food journal and add Fiber Sure to everything you cook (it's odorless, and tasteless- he'll never be able to tell)
post #24 of 25
has he been tested for gallstones? My symptoms didnt line up but low and behold, I had gallstones. They thought I had an ulcer which i know you said he had but it could be hiding and the symptoms attributed to the ulcers.

You just never know but whatever it is, i hope he can at least get it under control soon!!
post #25 of 25
I've had it for years and i take Peppermint pills which help with
the cramps and i also take 3 chewable Papaya pills which help
with digestion...I'm also on Zelnorm..all of them really do help
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