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Getting very distressed
      #191663 - 07/05/05 06:33 AM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

I'm almost at the point where I would like to go to my Dr. and tell him I want a colostomy............The constant D and unGodly cramping is completely devistating. I've had two episodes that started around 11:30 pm and continued until 5 a.m. the next morning, I can't go to school or work after this and how do you explain IBS to your boss, no one understands. This happens even when I'm eating just my fiber and the safe stuff.........I am soooo frustrated, I don't have any clue what to eat anymore. Still can't get into see my GI guy until August. I hate this stupid illness. Sorry guys very frustrated and just venting a little, however I have investigated the colostomy.....

--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

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Re: Getting very distressed new
      #191666 - 07/05/05 06:44 AM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

My mom's friend has IB-D pretty bad. She actually did go the colostomy route, after her doctor suggested it, to give her colon a rest.

While it is not the easiest to have a colostomy, it helped her tremendously. She feels much better now.

I'm sorry you are feeling so distressed. I am too. I wonder if a colostomy would help IBS-C? I haven't gone for days. I feel your frustrastration.

Anytime I hear someone say, oh, it's only IBS, I want to throttle them! If they only knew the toll it takes on your quality of life...there is no life when you are suffering as badly as we are suffering.

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: Getting very distressed new
      #191674 - 07/05/05 07:05 AM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

What fibre are you on and at how much? What are you eating? What meds are you on?

I would never consider that route myself. However you may well want to check that this is IBS.

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Been there too new
      #191693 - 07/05/05 07:34 AM
franny

Reged: 05/16/05
Posts: 508
Loc: N. FL

I truly do understand the thoughts that some type of surgery has got to be better than the constant suffering. I had decided to go to our local surgeon to discuss what surgical options were available to me. BUT somehow I came across this website and after slow deliberate changes, (safe foods, meds, sfs, immodium, teas etc)things began to settle down. I don't mean instantly but the pain really let up fast. The D and spasms took longer and I had a noticeable difference when I began the Acacia and taking Immodium every day. After reading a gazillion posts around here I know that this will always be a back and forth state. It is awful when the "it's only IBS" gets thrown at you. Nobody can understand what it's like to be totally unpredictable from day to day with this problem. Please keep us informed how you are doing.

--------------------
Franny
IBS/D
Celiac

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Re: Getting very distressed new
      #191694 - 07/05/05 07:34 AM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

Linz,
I'm on Citrucel and have been for 2 years, I take it faithfully, I eat Heather's diet faithfully, I do get my soluble and insoluble ratio correctly. I have followed her diet for almost 2 years now and have had IBS for like 20 years, I've had two colonoscopies. They bot confimred IBS diagnosis and where in my colon the problem is. In the past 15 years I have been on 4 different IBS meds, Bentyl, Donnatol, Levsin and finally Librax, which is what I'm on now and have been for probably 7 years. I also take Prevacid for my GERD and have for years. When I'm not constantly cramping and having D, I always try to make sure I get my fiber grams in per day, I drink no caffeine, milk products, no pop, stopped chewing gum, everything that is Heather's top 10 no no's...........This is what is so frustrating, the longest I have ever gone with out an attack in the past year and a half is 1 month............Hope that answers some of your questions.........

--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

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Re: Getting very distressed new
      #191706 - 07/05/05 08:06 AM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

I was almost at that point, too, a year ago. A colostomy sounds horrible, but when I though it might be the only thing that could let me lead something even approaching a normal life, I was willing to consider it. I got lucky because I found this Website by chance (I did a Google search on "beano + IBS") and Heather's approach has worked wonders for me.

It may be that Heather's guidelines simply are not working for you, but before you go the colostomy route, here are some thoughts and alternative approaches:

Would you consider posting what you are eating and supplementing for a few days to see if anyone on the Board can spot a possible problem area? I'm not trying to say you're doing things wrong, but sometimes the people here can see something you may have missed.

You could try a different SFS. I'm IBS-D - before starting Heather's diet I was about as D as it gets many days - and I take acacia. I also take a lot of it - 8 teaspoons which is 20 grams of SF per day.

You could consider an anti-depressant, not for depression, but for IBS. I took Elavil which worked well for me for a while. I eventually had to go off it because I neeed to keep increasing the dosage to have it keep working and the side effects caught up with me. However, even those few months of relief were wonderful (this was before I found this Website) and it's possible Elavil or another AD would work for you long-term.

You could try the Breaking The Cycle diet for a few days and see if your D quiets down. If so, then maybe Heather's approach can work for you with some tweaking, like maybe less IF.

Have you tried the hypno program? I haven't, but I know some people swear by it.

Check out this post for an interesting regimen. You mention you've tried Bentyl and I don't know how you were taking it, but if LauraSue's use of it is not what you were doing, perhaps it would work for you. Also, note LauraSue's use of Immodium - you don't mention trying that and maybe using is it as a preventative measure would help.

I hope some of this helps. I know that if you're at the end of your rope, gathering yourself up to try new things can seem overwhelming, but a colostomy is a big step, so I hope you can find another way.

Take care.

--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Re: Getting very distressed new
      #191707 - 07/05/05 08:07 AM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Have you tried any other SFSs?

Also, PPIs like Prevacid can cause D, so you might want to consider changing to another one to see if it helps.

What about eating IF? Have you tried cutting it out completely for a while? I needed to do that to stabilise - back then any IF would trigger off the D again.

Have you not tried Immodium?

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Re: Getting very distressed new
      #191735 - 07/05/05 08:56 AM
lalala

Reged: 02/14/05
Posts: 2634


Cheryl,

I understand how you feel! Sometimes you feel so horrible and hopeless, you want to resort to drastic measures. Please know you're not alone and we'll help you get through this difficult period.

Could the Citrucel be causing you problems now? Are you using the orange or clear mix? I tried the orange mix years ago, after having a difficult time with Metamucil; unfortunately, the Citrucel wasn't any better. Two ingredients in Citrucel orange, citric acid and potassium citrate (which is also in the clear mix), can actually cause diarrhea. I would say that, along with the PPI, could be keeping you from becoming stable.

And how about stress? I think one of my biggest non-food triggers is anxiety and stress. Is anxiety a problem for you too? Are you doing anything to manage the stress?

Like Linz, I also had to cut out IF completely when I was first stabilizing in addition to taking Immodium as a preventative. I'm able to tolerate Benefiber (guar gum) and inulin (found in my Luna bars!) as my SFS. Another thing I did was try to keep my eating habits and sleeping habits on schedule and I tried not to stop eating at least two hours before bedtime; although this didn't stop the D, I started to go to the bathroom at regular times, usually in the morning. This might help you from having attacks during the night.

Well, I hope this helps and that you start feeling better soon!

Take care.



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Re: Colostomy Route new
      #191736 - 07/05/05 08:56 AM
jblake

Reged: 05/20/05
Posts: 41
Loc: East Coast, USA

I went the colostomy route for 6 months but not by choice. I had that surgery due to severe C that wouldn't respond to anything else. It was a shock, although they told me what to expect and I thought anything had to be better than the pain. But it took me weeks to recover, not so much from the surgery but from the mental shock of what all a colostomy entailed. Actually I don't know how long it would have taken me to recover mentally because three weeks after the semi-emergency surgery for the C, I was back in the hospital for a second surgery due to adhesions of the small intestine to the large intestine from the first surgery (which I understand is not all that uncommon). That was such a shock that the colostomy actually took a back seat to trying to recover from two major surgeries in a month.

I then had several hospitalizations after the colostomy reversal (due to C) and at times would think maybe I should just have a permanent colostomy, but then I would remember the inconvenience of it all and that lead me to research and finding this website.

I know my problem is C and yours is D but I would really be cautious of making that decision. If you want more information about what life with a colostomy is like you can email me. My insurance did not cover the supplies even though the surgery was a medical neccesity, and the supplies are expensive.

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Re: Getting very distressed new
      #191925 - 07/05/05 02:26 PM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

I sooo appreciate all the advice and I'd love to be able to share what I'm eating daily, I guess my biggest problem, aside from the D, is the Un Godly, labor pain, cramping that goes on for hours before I even go blast....I could live with D, if I didn't have all that miserable cramping.

The D/cramping episodes started on July 1, I don't remember what I ate Friday, but Saturday, I had Half a bluberry sour dough bagel, from Panera, they are IBS safe, I take the citrucel caplets, 4 in the am, and 4 pm, I drink at least 4 bottle waters a day along with peppermint tea, that is the only two things I drink, since I had such a severe episode Friday, into Saturday, I had sourdough pretzels and applesauce, (natural) for lunch, and for dinner I had a half a sub, from subway, honey/oat bread, turkey, pickles, shredded carrots and seedless cucumbers on it, along with lays baked potatoe chips, regular. Up until recently I had taken 3 librax a day I "gradually" (over a period of a year) lowered the dosage since the 3 a day did not help and Heather's diet seemed to be working and I was on 20mg prozac and birth control pills. About 5 months ago, I quit the BCPillls and about a month ago I stopped the prozac. Since December of last year my IBS had been doing pretty well, I quit taking the librax 3x a day and just take it at bedtime, since 90% of my episodes are at bedtime. I try not to eat 2 hrs before bed, but I do drink peppermint tea just before going to bed. I thought I had remembered a couple years ago, before heather's diet and this board, I ate whatever, I knew salads killed me, but I started taking the prozac and asked the drug rep when he came in the office if it had any indications for IBS, he said no, they can't market it for that, but a lot of people that take it had some definite relief, I think I quit it because I was getting heavy? Don't remember. Sorry. Saturday I had a 11:30 p.m. to 5 a.m. cramping, with the heating pad and no rest until I could finally go to the bathroom, it "usually" starts out normal and a little firm, but always ends up like water, after about the 4th BM. After that episode, in the am I had my fiber, half a bagel (Panera) bagels are all made from sour dough and are IBS safe, (I don't get the ones with a lot of fat in them). I had rice and pasta noodles, with spray butter, which is not really spray butter, no fat, no dairy, stuff, and a slice of sour dough bread. D again during the night. Yesterday, I had a banana for breakfast, sourdough pretzel, lunch and an apple, dinner was baked tostitos with soy cheese, and baked beans. I never over eat, I can't. With these latest episodes I have started back to 2 librax a day, and I am very hesitant with the imodium because I'm afraid if I take it the cramping with prolong because I can't get the BM out, since the cramping lasts so long, and I usually have to go at least twice before it's full blown D. Any other suggestions would be so grateful!!! What is the trick with imodium, i'm afriad I'll have the cramping longer if I'm Constipated................ I forgot to mention, I've taken Prevacid for years, so I don't think that is a problem, Nexium/prilosec gave me diarrhea and the only fiber I used to take was Fibercon,,,,,,,,,not good!!!! Sorry friends, I also have noticed in the past week that 2 or 3 times my BM"S have had that awful sulfa smell, but have not eatin any gassy veggies, what causes that smell..........

--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

Edited by cjc (07/05/05 02:32 PM)

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Re: Getting very distressed new
      #191933 - 07/05/05 02:51 PM
lalala

Reged: 02/14/05
Posts: 2634


Thanks for taking the time to post all this! It sounds like you're doing all the right things. I've never tried the Citrucel caplets, but the ingredient list reads safer than the mixes, so that's probably not it. I'm going to do my best to point out a few foods you listed that sort of jumped out at me:

Do you usually eat an apple without problems? Is it a whole apple? I know just half an apple, even if peeled, gives me a stomach ache, gas and bloating.

What about the soy cheese? Soy cheese still contain a couple of ingredients that a few IBSers, like myself, are sensitive to: casein (a milk protein) and carrageenan (an additive). I noticed a significant descrease in gas, bloating, and urgency when I cut out soy products that are dairy food alternatives and contain casein and carrageenan. Not everyone is sensitive to these additives, however, it might be worth a try to avoid them if you're still struggling to get stable.

Do you know what was in the baked beans? Sometimes the canned ones can be high in HFCS or restaurant ones can be made with ham. Just whole beans can be problematic because of the IF skins. You could try mashing them to mechanically breakdown the IF and make it easier to digest. Aren't beans sulfur-containing foods? Couldn't this lead to the odor and gas you experienced?

What about the sourdough bread? By keeping a food journal, I've noticed that eating sourdough bread in the past has triggered an attack--I've also experienced smellier stools with it too. I'm not sure why, but I found when I switched to regular French bread and limited the amount of yeasty bread I ate a day, certain symptoms improved, such as frequency and odor. It could be an intolerance or sensitivity to yeast.

Do you take a probiotic or eat soy yogurt? I find eating soy yogurt helps reduce odor.

With Immodium I would take 1 caplet in the morning or the evening, depending when I felt most crampy or rumbly, before I had an actual attack. Now that I'm stable, I take 1/2 to 1 in the morning before an important event or traveling. If I take two Immodium, it's usually after an attack, and I do notice that it makes me more crampy, gassy, and then a bit constipated for a few days. With 1/2 to 1, I get the desired effect but without the constipation--I'll have a regular BM the following day, although I will be a bit more gassy.

I hope this helps. How are you feeling this afternoon?

Edited by Maria!Maria! (07/05/05 03:01 PM)

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Re: Getting very distressed new
      #191953 - 07/05/05 03:33 PM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Well baked beans are majorly gassy for me - I can't eat them at all now. Pickles, shredded carrot, appleas and soy cheese are also all triggers for me.

And it doesn't sound like you're eating very often at all! For safety, you should be eating something SF every 2-3 hours.

The trick with Immodium as a preventative is to take a low enough dose. If even 1/2 a tablet once a day makes you C, then you can get the drug (loperamide) on rx in liquid form to allow you to take teeny amounts. I have to say, I do recommend it.

If you're on Prevacid, you shouldn't really be drinking peppermint tea!

Have you tried narcotics like codeine for the pain?

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Re: Getting very distressed new
      #191959 - 07/05/05 03:42 PM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

Quote:

I take the citrucel caplets, 4 in the am, and 4 pm




If I'm reading Heather's SFS FAQ page right, you're getting only 4 grams of soluble fiber a day. I would definitely try increasing that - go up slowly. As I said, I take 20 grams of SF from acacia a day. That's high for a D, but I think 4 grams is too low.

You don't seem to be getting a whole lot of IF, but you may be getting more than you can handle or possibly you just can't handle certain kinds of IF. For example, I noticed there are a lot of sour dough items in your diet. The sour dough bread and rolls I see all have whole wheat in them - from what I can tell, it is used in the starter somehow. Perhaps you cannot handle that - my gut objects to any whole wheat at all. At a minimum, I would try Maria's suggestion and switch to just plain French bread for a while. I also agree with her that soy cheeses can be problematic. Since you're not stable at this point, I suggest you avoid any dairy like the plague.

I really would try the Break The Cycle diet for a few days and see if that helps. If it does, then re-introduce IF very, very slowly and carefully. I'd go with cooked IF first - it seems like raw is harder to handle. And be sure to keep all dairy out at least until you're stable with a reasonable amount of IF. I still won't touch dairy. Also, my experience has been that I cannot handle fat well in the morning, which is my worst time. If your worst time is at night, then I'd be particularly careful about eating fat late in the day.

As I understand it, both the diarrhea and the cramps result from your colon going into spasms, so I don't think the diarrhea is actually relieving the cramps, although I know it feels like it. If I'm wrong about this, I hope someone will correct me.

What the Immodium should do is ease the spasms, which should help the cramps while it prevents the diarrhea. (BTW, your pattern is totally familiar to me: cramp, bathroom, bathroom, bathroom diarrhea, bathroom worse diarrhea, bathroom mostly liquid diarrhea, done. Cramps stop, diarrhea stops, but really, really tired. I don't get a sulfur smell, but I used to get ammonia smell when it was really, really bad.)

The meds I can't help a lot on. I take Immodium when I go out near home and Donnatol when I travel longer distances. They both help, but the meds I tried before I got on Heather's diet and acacia did nothing, so for me the meds are the icing on the cake - Heather's diet and acacia do 90% of the work and the meds just mop up the last little instability.

The one thing that does stand out is that you're drinking peppermint tea before bed and you're taking Prevacid. Maybe one of the GERD people can help out here, but I thought Prevacid was for reflux and peppermint tea is not good for reflux, especially right before bed.

As for the prozac, if you flared up right after you got off it, there might be a connection. I just don't know enough about it. Maybe someone else can chime in here.

The two big things I would suggest you try first are increasing your SFS (slowly!) and going back to just soluble fiber foods for a few days, then adding in other foods (very slowly!). It took me 6 months to go from all soluble fiber foods to baked beans and even longer to get to pickles. I know you've been doing this for a while, but something seems to have de-stabilized you badly (or perhaps you were never completely stable) and I think the best thing is to kind of start over.

I also like the idea of taking Immodium as Maria suggests, but I never did that (wish I had) so I can't speak from personal experience there.

I hope some of this helps.


--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Re: Getting very distressed new
      #191964 - 07/05/05 03:53 PM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

Maria!Maria!

Thanks for the tips, If I put apple, I meant applesauce, the natural unsweetened kind, if I do eat an apple, is it skinned and I cut it in small pieces, if it's apple, I try to eat it after the SF, since I did read that apples without the skins are safe. I don't have baked beans often, but I always get Bush's vegetarian style, and try to get all my SF in before I eat them and don't eat them in huge amounts, just enough to get my ISF. I have only ate the sourdough bread, since it does seem to be a favorite of the board and considered safe. I have never tried any other safe "white" bread, french, country, we have a delicious bakery close to wear I work, they have all kinds of homemade, maybe I should try me a loaf of french. I just assumed the sour dough was the safest. I will get the imodium and experiment, I will try taking one when I start cramping up. The most frustrating thing is the timing, as I said, seems to be usually at night, after I've gone to sleep, the cramping wakes me up and keeps me up.

Does anyone know any findings on BCP's (birth control pills) and IBS or Prozac and IBS, wondering if I should try starting them up again, just to see.............
Today, I have had my Citrucel, water, Half a bagel for breakfast, the other half and some pretzels and a graham cracker for lunch, dinner I'm going to try some baked white meat chicken and plain rice and some applesauce, to get my fiber in...............I have to work tomorrow, so I hate to eat anything that I think might trigger an episode. I think I will start an eating journal, I keep a D journal, pretty sad huh, now I think I'll keep the food journal

Thanks again!!!

--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

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Re: Getting very distressed new
      #191965 - 07/05/05 03:54 PM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

Linz,
I drink the peppermint tea for my tummy cramps and gas, does it and Prevacid have a contraindication with one another. Prevacid is the only med that helps my awful GERD. I guess since I saw the carrots on the SF list I assumed they were safe, that's why I added them to my sub and I LOVE seedless cukes...............Can you eat regular cheese or low fat or fat free cheese?? I dont' eat often, cause I'm usually not hungry Like If I eat oatmeal for breakfast, I'm usually not hungry by lunch time and a lot of the time make myself eat something.............I need a gut replacement, forget the boob implants and botox, I just want a normal tummy....................:) I'm going to get some Imodium and keep it here and start trying it.

Thanks

--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

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Re: Getting very distressed new
      #191967 - 07/05/05 03:58 PM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

Sand,
I do get more fiber than just the "Citrucel", the pretzels I eat have fiber, applesauce and the sourdough stuff I eat has fiber. I do eat bananas, nutrigrain bars, most anything I try to eat, like no yolks and pasta plain, have some fiber, I try not to rely on just the citrucel for my SF fiber. I would say probably in a day I get about 10gm of SF fiber. I may have asked this before, but where is the break the cycle diet on the board?? Thanks so much to everyone, lots of tummy hugs

Cheryl

--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

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Re: Getting very distressed new
      #191974 - 07/05/05 04:08 PM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

Quote: (BTW, your pattern is totally familiar to me: cramp, bathroom, bathroom, bathroom diarrhea, bathroom worse diarrhea, bathroom mostly liquid diarrhea, done. Cramps stop, diarrhea stops, but really, really tired. I don't get a sulfur smell, but I used to get ammonia smell when it was really, really bad.)
OMG, I can't believe there is someone out there that KNOWS what I'm talking about.......Thanks Sand

--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

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Re: Getting very distressed new
      #191977 - 07/05/05 04:18 PM
lalala

Reged: 02/14/05
Posts: 2634


Your D journal isn't sad! Lol! I mark the # and quality of BMs I have on my calendar as well as in my food journal! The food journal has been a great help; I've been able to pinpoint some things I never would have thought of such as the soy substitutions for dairy that contain casein and the sourdough bread (although I admit when it comes to bread I can overdo it, which would probably make anyone sick).

There might be some studies posted in the IBS Research Library about the birth control pill and IBS. I know for some people the Pill has made their IBS worse. However, in my experience, the Pill has actually helped; I've been on it for about eight years now. I did go off it for about a year and during that time my IBS worsened--especially the week before and during my period. I did have to experiment with a few different pills before finding one that reduced my cramps and duration of my period. Because my periods are shorter and the cramps minimal, I find I rarely ever have a D attack during that time. I still get period farts, if you know what I mean! Lol!

If your attacks happen at night, why not try taking 1 Immodium before you go to bed or following dinner? At least this way you can get some rest and break that cycle! Speaking of breaking the cycle, here's a link to Heather's recommendations I think you asked for earlier: FAQs (including BTC overview) and What to Eat When You Can't Eat Anything (I hope this is the right info you wanted).



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Re: Getting very distressed new
      #192058 - 07/05/05 08:38 PM
Betharoo

Reged: 01/28/05
Posts: 815
Loc: Ontario, Canada

I get the same attacks that you and Sand describe. The horrible, horrible cramps that take your breath away. Bathroom, bathrooom, bathroom, some D, explosive D, liquid D, done and completely drained (literally) and ready for bed.

I am not sure about your bakery but mine here glazes their sourdough bread in egg which could be a problem. I would try white bakery bread. I cannot stand "wonder" bread or any with preservatives so I always buy bakery bread, french or white sandwhich bread is safe.
I have GERD and cannot have peppermint caps, teas or anything because it irritates it. Have you tried fennel? it soothes and calms my tummy.


--------------------
Microscopic Colitis, IBS-A, GERD, Hiatal Hernia
Bethany, Ontario, Canada

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Re: Getting very distressed new
      #192078 - 07/06/05 05:12 AM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Peppermint tea is a MAJOR GERDs trigger, so you should not be drinkinng that. Try very strong chamomile and fennel instead.

Cooked carrots are fine. Raw, the relatively small amount of IF can be a problem for some. The cucmber SHOULD be fine, but the skin has plenty of IF in it. Baked beans are soooo bad. Soy cheese usually has casein in it.

Try snacking instead of doing meals. I'd be so ill if I was eating that infrequently...and so little! Tiny amounts of food are fine...just frequently.

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That is no where near enough! new
      #192090 - 07/06/05 05:53 AM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Heather recommends 12-15g a day from SFSs ALONE and plenty more on top of that from food. I take 15g SF from Acacia a day...and oatmeal, and pasta, and bread, and crackers, and bananas.....! Get the idea? That is no where near enough SF to help. No wonder you have D and cramps!

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Re: Getting very distressed new
      #192440 - 07/06/05 04:33 PM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

In a healthy digestive system, the food is moved along, digested, and moved out by a smooth, gentle rhythm - like waves in a calm summer sea. In people with IBS, those rhythms are rough and violent - like the ocean in a hurricane. What Heather's diet and the use of an SFS do is keep the rhythms smoother and gentler in two ways. First, eating something triggers the rhythm to start or to pick up the pace. For IBSers, the trigger foods tend to make the rhythm start hard - rough and violent. Soluble fiber foods tend to make the rhythm start easily - smooth and gentle. That's why eating soluble fiber as the first part and the biggest part of a meal is so important.

Second, IBSers' guts want to spasm, like an eyelid twitch or a charley horse. When that happens the gut squeezes itself together, like a mostly empty toothpaste tube. If you can keep the gut - the tube - filled with something semi-solid (like toothpaste) the spasms can't bear down, can't get a foothold. This is why a LOT of soluble fiber is so important: it makes a gel that keeps the gut full and prevents the horrible spasming from starting or continuing. It's extremely difficult to get enough soluble fiber just from food to keep this fullness going - that's why an SFS is so important.

Although the distinction isn't really true, I visualize the soluble fiber I eat as the fuel that gets my digestion going smoothly and the cushion that softens the blow of foods like protein, fat, and insoluble fiber. I think of my SFS as the gel that keeps my gut inflated, so it can't turn on itself. You need both.

Given that, my suggestions are the same as everyone else's:

Increase your SFS. Based on my own experience, I think this is absolutely crucial. According to Heather, 2 Citrucel caplets provide 1 gram of SF, so to get the 12-15 grams, you'll need to go up to 24-30 caplets. (I'd really think about a powder to use at least at home. Check out Heather's SFS FAQ I reference in my earlier post and find one that does NOT have any Insoluble Fiber in it. I love acacia myself.) Go up slowly. I started with 1/4 teaspoon of acacia per day. After 3 days, I added another 1/4 teaspoon, after 3 days another 1/4 teaspoon, and so on.

I really do think the Break The Cycle diet is a good idea for a few days.

Eat lots of small meals or snacks at fairly close intervals. Even a handful of pretzels can make sure you've at least got something in your tummy. Letting my stomach get empty is the worst thing I can do - the food hitting the digestive tract kicks up a real storm. If you do get hungry, eat only pure soluble fiber, a little at a time, until you've got a fair amount in your stomach.

I'd also keep it very simple: bread, pasta, noodles, mashed potatoes, sweet potatoes, simple chicken and fish dishes. Cook even the SF vegetables like carrots and zucchini at least in the beginning.

Try Immodium to ease the cramping and control the diarrhea. Once you get your diet and SFS in better order, you might find that the other meds do more to help, too.

My own experience was that I ate almost totally soluble fiber foods for quite a while. I added to them egg whites, chicken, fish, and shrimp. Stuff like IF fruits and vegetables I approached cautiously, cooked, and well wrapped in SF. If a food wan't on the soluble fiber list and wasn't a safe protein, I assumed it was my worst enemy for the first several months I was on this plan. This isn't as boring as it sounds. I ate Kree's Crock Pot Chicken Stew, for example, from the beginning. Heather's Cinnamon Zucchini Bread was a great way to get some calories and some vegetables in me (but not first thing in the morning - it's a little high in fat for that). Heather's Smoky Eggplant Hummus was an early winner for me and ShellMarr's Artichoke Hummus is just as delicious - and easier. Once again, these two recipes got vegetables down me safely. Applesauce and pretzels became my new best friends. I'm lucky enough to be very fat-tolerant (although not first thing in the morning), so Heather's Guacamole (in EFI) with lots of Baked Tostitos was also an early winner for me. I tolerate tomato sauce and onions well, so spaghetti with sauce worked for me too, almost from the beginning.

Even now, my diet is primarily soluble fiber. I start each day with applesauce blended with a teaspoon of acacia. I work at getting some fruit into me (I'm becoming addicted to smoothies) and vegetables (I can actually tolerate small salads occasionally), but I'm still mostly soluble fiber plus protein. Heather's breads are still a primary source of fruit and vegetables for me.

This is what worked for me - I hope some of this helps you. If you have questions, ask. It's nice to meet another D (two, counting Betharoo) whose experience is the same as mine was - I feel a little less weird. And as for those horrible attacks - Heather's diet plus acacia means I no longer have atacks like that triggered by food. The attacks can still crop up when triggered by stress - or when I eat off program - but even then, they're not nearly as bad as they used to be. I wish the same for you.

--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Just another opinion..... new
      #192447 - 07/06/05 04:51 PM
barbie

Reged: 04/22/04
Posts: 2435
Loc: Texas


I have read your posts and I'm sorry you are having so much trouble. You have gotten a lot of great advice from some of the others.

I am one of the few that cannot tolerate SFS. There are a couple of gals on the boards that can't either. It made them feel so crampy & gave them explosive "D". I do better without it. I know it has helped so many on the boards but I just wanted you to know this as another approach for help.

I do better when I eat things like pasta, breads, rice, baked or grilled chicken and stuff like that. I can eat some veggies if they are cooked....like carrots....but certainly not cucumbers. I get my fiber from oatmeal.

I also take Librax. I started taking it 3 times a day 30 mintues before meals. It really helped me. I am down to 2 tablets a day now and sometimes on a good day only one. Imodium has been a must for me and also Phazyme for gas.

Also, I noticed you mentioned a food diary. That is one of the most important things you can do. It helped me immensely.

Be sure and check for Sorbitol in anything you eat or drink...even chewing gum or candies. It gives my tummy a fit.

I hope you feel better soon and that some of these ideas will help you.

Barbie


--------------------


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Re: Getting very distressed new
      #192448 - 07/06/05 04:59 PM
Jessica Anne

Reged: 07/06/05
Posts: 13
Loc: Bucks County, PA

I know just how u feel. It is all just so fusterating and the pain is so unbearable and frightening. I'm so fearful of that pain. It's just so horrible and no one understands. I've went through many of those horrible, firghtening and unbearable times. It lasted all night and then the next morning. But for me mine, it wasn't D, it was the complete opposite and let me tell u the pain was so horrific I was literally screamin out loud. I don't even like to think about it because I am just so frightened from it. Belive me I know just how u feel and I'm sure many others experience that same thing. I do hope u get better soon!

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Re: Getting very distressed new
      #192482 - 07/06/05 07:21 PM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

JessicaAnne, barbie,Betharoo,jblake,sand,Linz,Maria!Maria!, Augie, & Franny, and anyone else I may have missed, sorry, I am so very happy that you all took the time to help out a fellow IBSer. It is so very frustrating to live with this idiotic, frustrating disease and have people look at you like your an idiot when you try to explain it..........Let alone everybody that thinks I'm on a "diet" and I get made fun of because I'm thin, I have have a hard time trying to tell them it's a diet, but not a weight loss one.......frustration setting in......anyway, I have read all your posts and have got a lot of great ideas and suggestions and I was D free last night and with my adjusted eating habits today and wishes and prayers, I will be D free tonight also!!! I am thinking about the Acacia, however, the only concern I had was when I was taking fibercon, I noticed that Acacia was one of the ingredients and it makes me scared, fibercon did me in really bad!!! Citrucel wise I'm getting 6mg of fiber right now, along with my daily food, I've been trying to get 10-12 gm a day for now and will increase it. I do want to try the fennel tea as suggested, I miss my coffee, so I have become so hooked on my morning and evening peppermint tea, I miss it and I think it was a mind thing. It is weird however, the peppermint didn't bother my GERD, so I thought it would soothe the colon spasm when it happened..........oh well, live and learn, I have started a food diary, and have lots of new things to try, I was to be IBS free......at least for more than 1 month, which is the longest I have ever went. I don't chew gum, gave it up after I read Heather's book and I always check for artifical sweetners, especially sorbitol, big D problem for me. I did buy the two bottle pack of heather's peppermint caps, for the colon spasm, am I not supposed to be taking those either. I do have a healthy supply of Gas X, Phayzyme, etc. and have yet to get the imodium, getting that tomorrow. I'm going to a health food store tomorrow and will get the french bread, I've not had sourdough for over 24 hours now, seeing if that is a culpret. Can you find Acacia and fennel tea in health food stores? Thanks again to all of you, with MUCH appreciation.

Cheryl

--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

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Re: Getting very distressed new
      #192627 - 07/07/05 07:03 AM
Betharoo

Reged: 01/28/05
Posts: 815
Loc: Ontario, Canada

great! one night without D means you are one step closer to one week or one month without it!
Good Luck

--------------------
Microscopic Colitis, IBS-A, GERD, Hiatal Hernia
Bethany, Ontario, Canada

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Re: Getting very distressed new
      #192638 - 07/07/05 07:32 AM
Alyson McG

Reged: 05/20/05
Posts: 317
Loc: Vancouver Washington (IBS-A, but D prominant)

Hi Cheryl,
So good to hear you had a good night. I can relate to the coffee, I too miss it sooo much. I tried to have some a couple of weeks ago, what a mistake! Took me three days to recover. Grr...Before I bought my kit from Heather, I went and bought Fennel seeds at my local HFS, that's all her tea is. I put the some of the seeds in a ziplock and "beat" them a little to break them up and release more of the flavor. The fennel has really helped. I have been unable to find a plain fennel tea in teabages, but I did find one by Yogi brand that has fennel in it, along with other very helpful herbs. I believe it is called Stomach ease, I love the flavor and is very helpful. I alos wanted to ask, and I'm sorry if I'm repeating someone else, but what kind of calcium supp are you taking? I was taking a regular cal/mag supp for ever adn then someone explained to me that magnesium causes D, and calcium citrate was just as hard. Had no idea! I switched to calcium carbonate and it helped quite a bit. Tends to lean towards C, which for us usually only means slowing the D, I never got C from it. Also, have you tried beano? After years of gas( I always figured it was just a sales pitch, and couldn't really work, I'm a skeptic like that), I finally tried it, and it has helped tremendously. Another thing that has helped me, I have found that a good bowl of oatmeal( I prepare Heather's peach recipe) everyday is the only food , so far, that doesn't hurt me or cause me awful gas and bloating and I believe it has helped to keep me somewhat stable. I too am pretty sensitive to sourdough, and many other breads. I hope this helps. Feel free to email me if you want to, I'm always glad to help.

Alyson

--------------------
Everything in life happens for a reason, patience will eventually tell us what that is......

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Re: Getting very distressed new
      #192735 - 07/07/05 09:34 AM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

I am so glad Tuesday night was a good one for you and I hope last night was just as good.

I certainly agree that people don't get it if I say I'm on a "diet". I just tell them that I have a stomach problem (or I say IBS if I'm comfortable with that) and that I have to be super careful how and what I eat.

The only reason I suggested a powder SFS was because 24-30 tablets is a lot to take. If you're happy with the Citrucel, by all means stick with it.

The peppermint caps should be okay - they're coated so they don't dissolve until they get to your intestines, which means they shouldn't bother your reflux. However, I have seen posts on the Board from people who try them and get pepperminty reflux from them, so you'll just have to try and see. I'd say take one (not right before bed) and see how you do.

Take care.



--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Telling people about IBS, remembering Beavis & Butthead new
      #192747 - 07/07/05 09:44 AM
lalala

Reged: 02/14/05
Posts: 2634


Quote:

I certainly agree that people don't get it if I say I'm on a "diet". I just tell them that I have a stomach problem (or I say IBS if I'm comfortable with that) and that I have to be super careful how and what I eat.





That's sort of my method of telling people what's wrong as well; I have different levels depending on whom I telling. SInce I've lost so much weight, I can't even say the word DIET or people around me get flustered and try to get me to drink milkshakes and eat donuts. If I say, IBS, I get a strange look and sometimes a giggle. Remember Beavis & Butthead, that MTV cartoon from the 90s? Anyone else remember Beavis' personal experience with IBS? Yeah. Hilarious.

I used to just say I have some sort of stomach or intestinal bug. But since it's IBS and I was having attacks so often, I decided I should be more honest with those people who are determined to know WHY DOESN'T MARIA EAT COOKIES OR CHOCOLATES? So these are some things I typically say to those friends or coworkers or visiting family members. They don't always get it.

1) I'm lactose intolerant and have a problem digesting certain high-fat foods, sugars-like HFCS-and proteins-like those in red meat.
2) I have IBS. IRRITABLE BOWEL SYNDROME! So don't irritate me with your questions!
3) I have a functional bowel disorder I don't wish to discuss.


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Re: Getting very distressed new
      #192799 - 07/07/05 11:25 AM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Heather's products are available in some stores now...I think you'll find a list if you go to the shopping page. I would def. recommend Heather's fennel; tea over HFS stuff as it's so much fresher and therefore stronger and nicer.

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Re: Telling people about IBS, remembering Beavis & Butthead new
      #192806 - 07/07/05 11:47 AM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

Quote:

these are some things I typically say to those friends or coworkers or visiting family members. They don't always get it.

1) I'm lactose intolerant and have a problem digesting certain high-fat foods, sugars-like HFCS-and proteins-like those in red meat.
2) I have IBS. IRRITABLE BOWEL SYNDROME! So don't irritate me with your questions!
3) I have a functional bowel disorder I don't wish to discuss.




ROFL. I really like your second "explanation". I'll have to try that one next time someone asks.

--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Re: Getting very distressed new
      #192949 - 07/07/05 02:45 PM
LtDanFan

Reged: 12/17/03
Posts: 588
Loc: Ohio

Sand,
I would like to try the Acacia, it is very difficult taking a zillion caplets everyday, I'll check out the store and see what Heather's got goin on. The peppermint caps do seem to work, but there are days when I do get a real heavy GERD pepperming in my esophageus and times I don't??? I never really thought about not taking it at night, thanks for that tip. I know soluble fiber is soluble fiber, I wonder why some people can tolerate the citrucel vs the metamucil, vs the acacia......... I will definitely try the fennel tea. Does anyone know what the majority of the SFS everyone on the board takes?? Just wondered.

Also, I had another good night last night.. woo hoo

Cheryl


--------------------
IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13

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Re: Getting very distressed new
      #192970 - 07/07/05 03:49 PM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

I think Citrucel has a powder, too - I don't know anything about it, but since you tolerate the caplets, maybe that would be something to try. Just remember - no citrusy, no artificial sweeteners.

Why some people can tolerate one SFS and not others is one of life's great mysteries. An even greater one is why some people cannot tolerate any SFS.

I'm so glad you had another good night. Two in a row!

Take care.

--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Alyson, about Beano new
      #193809 - 07/10/05 09:54 AM
Cyndy

Reged: 03/05/05
Posts: 1301


Do you take it with every meal? Or just the meals that you have certain types of gassy foods, like brocolli or beans?

I wonder if this would help if you took it even when the meal just had some bread or regular veggies that are less gassy since all foods probably cause some gas.

I am leery about beano as it contains mannitol or xylitol in both the liquid and pill form. Why would they put an artificial sweetner that causes gas and GI distress into a product that is suppose to help with gas?

Which form do you take, liquid or pill?

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Re: Alyson, about Beano new
      #193827 - 07/10/05 10:49 AM
Alyson McG

Reged: 05/20/05
Posts: 317
Loc: Vancouver Washington (IBS-A, but D prominant)

I take the caplets and usually only take them with a meal that I know for sure will cause me great gas, like say with a boca burger. I will take them more frequently if I'm having a particullarly bad gassy day. I didn't realize that there was an artificial sweetener in it....hmmm.... that IS interesting, maybe that is why I don't get complete relief????

By the way, how are you feeling???

--------------------
Everything in life happens for a reason, patience will eventually tell us what that is......

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