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Frustrated
      #346542 - 05/29/09 10:24 PM
MikeCA1870

Reged: 03/30/09
Posts: 110


Hello all,

Well, some of you may recall a couple months ago after I was first diagnosed I wrote a couple posts with questions and everyone was excellent about answers.

I pretty much follow the diet religiously. I have cut out triggers, reduced fat (so much that I went from 5'11" 190 to around 170 now, people at work are telling me I'm too thin, but I don't look rib-cagey), focused on SF and slowly have been expanding my IF (since that's where are the good foods are). I take on average a teaspoon of Heather's acacia every morn and plain instant oatmeal (I add a small handful of dried goji berries). Most days I just snack multiple times on SF and some IF snacks like pretzels, baked chips, Teddy Grahams (LOVE those guys) and skip a true lunch, but others I have a subway sandwich or a chinese chicken salad (white meat chicken with lettuce and a few slivered almonds, without the dressing). Dinner is usually some kind of ok cereal (Cheerios is a favorite) with soy milk though I have been adding a nighttime snack of low sodium V-8 to increase my veggie intake. I'll throw bananas into the mix throughout the day if I have them. In the evening I take another teaspoon of the acacia mixed with a teaspoon of Metamucil.

I get frustrated because I read Heather's book and a lot of the posts here by the "regulars" and it seems over all like IBS (stable) is basically like being normal most of the time punctuated with periods of extreme symptoms. However, with me I'm just a steady 5 on the 1-10 scale every day. I haven't had one day since this all began that I have felt normal all day, but I also feel like a crybaby because I also don't have to run to the bathroom every five minutes or have C for days like the folks on here. I'm just tired of doing supposedly the right things (diet, Align, fiber, exercise, fennel/peppermint/anise/catnip tea, Iberogast, etc.) and while yes there is substantial improvement from the terrible first two weeks, once that happened it hasn't gotten any better.

Typically the symptoms I do get are evolved from anything I used to have before (back when I was "normal" I occasionally had urgent D or just crappy feeling once or twice a month but usually I could trace it to overindulging on a bad food). I don't have true D or C at this time but aspects of both at one time or another. What I mean is some days I will have frequent movements but not necessarily loose (so half D) and others I will have one movement a day but hard and difficult to pass (so half C). The worst thing though is the non-associated stuff that makes no sense to me, such as an overall gross feeling, sometimes incorporating nausea, or what I call non-urgent urgency (the uncomfortable feeling where you know something is going on and your gut doesn't feel quite "right" but not actual urgency), or even lately my body has had weird temperature swings, like I will all of a sudden get hot and flushed in my face/neck/ears (like the feeling you get when you are just getting a cold) but in an hour or two it will recede.

As a result I can live my life like normal, functionally, which I know many of the people on here would kill to be able to do, but I feel sickly and crappy ALL THE TIME.

I would think it has nothing to do with IBS at all except it seems to occur around the times I eat, no matter what I eat, or around the time of using the bathroom. Even now, though it's not bad, my forehead is warm and I just feel a malaise. I never have sharp crampy pain like described by Heather in her book (the kind that could make you pass out) but I have a near constant dull pain, like what dry skin feels like, only inside, or better yet a weak muscle soreness.

I've been able to manage all this in my life but mostly because I don't *have* much of a life. I go to work, I come home. At this point, I can't imagine getting involved in a relationship, traveling anywhere, or being more socially active, so really, my solution is no solution at all.

I'm just really bummed. I think I have passed from the denial stage (I can beat this! I just need to modify my diet and lifestyle!) to the depression stage (I'm going to have this every day for the rest of my life....). I had anger for a little bit but it's hard for me to stay angry for long . Mostly I get mad that in our society you can have problems with your lungs, heart, or whatever, and you get sympathy, but anything having to do with digestive issues and it's humorous to people (they don't make many comedies about lung cancer, but D is a comedy staple). I see IBS as a social disease as well as a physical one since many of the symptoms can be observed by everyone around you.

And nothing hurts worse that getting a call from my doc a week after every test telling me everything looks normal.

For those that were able to read through all this, I have a question based on one of Heather's recommendations:

In Heather's book, she recommended a lot of different herbal teas. I have tried many of them, and some taste good (peppermint, anise) and some taste awful (fennel). Since they all seem to have complimentary usages, would it be all right for me just to mix them all together? I bought them as loose herbs - or is there a commercially made combination someone has found that I can purchase? I'm in bay area, CA, so if it's holistic, there is somewhere nearby that has it - guaranteed. I also want to get into ginger, but brewing a dried herb is a lot easier than buying fresh ginger, slicing it up, and brewing that.

Thanks everyone!

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Re: Frustrated new
      #346557 - 05/30/09 10:02 AM
Sand

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

I'd have two big problems with your diet: not enough protein and not enough. See if you can slip some protein into your breakfast maybe in the form of a hardboiled egg white. My ideal eating schedule is three real meals a day with three small snacks - mid-morning, mid-afternoon, and just before bed. So I'd also advise being sure to eat lunch and eating a real dinner. For a long time, I started my day with a hot decaf tea and 1/2 cup of applesauce with 1 teaspoon of Acacia stirred in. I found that made my tummy a lot more accepting of breakfast.

My pattern of recovery was that urgency subsided first, then frequency, then feeling "off". My worst symptoms subsided almost immediately but actually feeling good took about 6 months of careful eating and slowly increasing my Acacia dosage. I found that Acacia helped me a lot. I've gotten very sloppy about my Acacia but I felt my best when I was taking 7 teaspoons a day. And it's super important to be sure you're getting lots of fluids.

As for the teas, mix away. The only way I could ever tolerate fennel tea was to mix it with peppermint tea or hide it in a strongly flavored herbal tea. A company called "Traditional Medicinals" makes a tea called "Eaters Digest" that contains peppermint, fennel, and ginger, along with rose hips, papaya leaf, alfalfa leaf, and cinnamon bark. I've tried it and find it quite drinkable.

Remember, though, that the teas have different primary uses. Peppermint is a good anti-spasmodic; ginger is good for nausea; fennel is good for gas. So if gas isn't an issue, don't force yourself to drink fennel. As for ginger, a number of companies make ginger teas. Lipton makes Ginger Twist which is good and Stash makes Lemon Ginger which is yummy. If you want to brew it from the root, you can make your life a little easier by remembering you don't have to peel it and by slicing it when you get it home and storing the slices in the freezer. You can also buy ginger root already sliced or (I think) chopped in jars and I think you can buy dried ginger root powder. And remember you can make stuff like gingerbread, also.

BTW, Lipton also makes a peppermint tea and Tazo makes a tea called "Refresh" which is an insanely good mint tea with a little tarragon.

HTH.

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

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Re: Frustrated new
      #346603 - 05/31/09 03:39 PM
glasgowgirl

Reged: 09/01/08
Posts: 413
Loc: Vancouver, Canada

Hi Mike

Sorry to hear your feeling so down. Have you tried ways of reducing anxiety and stress in your life? The hypno CDs really helped me. Yoga is awesome for reducing stress. My tummy always feels so calm after a class and I'm way more limber than I was before. I can actually touch my ear with my foot now.

I also make sure to get out of the building when I'm at work even if it's just for a ten minute stroll around my building.

Also not eating enough is a big trigger for me. I messed up last night by not eating dinner and was rewarded with a mini attack this morning.

As for the social side of things I think it is important to push yourslef a bit. I'm doing that right now. I've always been on the antisocial side so it can be hard for me. So right now we're doing things like inviting friends around for dinner or going to the movie theater that's just up the road from us. Yesterday we walked to the beach and back.

Finally have you tried a calcium supplement? The caltrate website has a little calculator for working out how much you need and how much you need to take in a supplement.

Just saw Sand's post about the hard bolied egg white. I was actually just thinking about this as I'm really bad at keeping protein in my diet. I was thinking about boiling several and keeping them in the fridge at work for snacks. You can also just add a egg white to a smoothie.

I'm also wondering if your taking a little to much IF. If your prone to D then a little less is maybe advisable.

Hope this helps

--------------------
Stable IBS D

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Re: Frustrated new
      #346667 - 06/01/09 04:53 PM
Little Minnie

Reged: 04/16/04
Posts: 4987
Loc: Minnesota

As Sand said, eat more. Also you need more IF within the SF base. Don't have a salad alone BTW, but definitely snack on more than simple carbs and bananas. Don't Teddy grahams have HFCS? Eating and drinking more and upping the SFS sometimes help regulate the amount of poo. Your diet could be causing a vitamin deficiency. Has your doc done blood work for that?

As for your general malaise- I have that too! No one else ever says it is IBS related though and doctors haven't explained it. I know what you mean about it being tied to poop time. I felt great Sat and this morning and after pooping got all the symptoms you describe. I also get them for a day or many days together. In November I had it for 3 1/2 weeks. I can't explain what it is or whether it is tied to IBS or not- sorry. I drink ginger tea (peeled ginger root steeped in water really well) when I have it and sleep a lot. Sleeping helps and then usually when I get up late in the day it goes away by dinner.
This general malaise for me is not really connected to IBS otherwise. I don't have to have a flare up to get it. Blood work is negative too and it is a mystery I wish I could solve.

My suggestions for you are eating more (definitely more protein), light and regular exercise and upping water/tea and SFS too. If you feel slightly headed toward depression, lots of vitamin D worked well for me.
Good luck!

--------------------
IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!

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Re: Frustrated new
      #346677 - 06/01/09 07:13 PM
seashell

Reged: 05/22/09
Posts: 25
Loc: CA, USA

I will second the Eater's Digest tea, it's very tasty and has mint, fennel and ginger - all work miracles. I also second getting some exercise. A few yoga stretches in the morning and evening are great. But, you need to "get out there" in the sun and get those endorphines working. This is coming from someone who hated exercise and the only class I ever flunked - P.E.! But, now that I'm in my early 40's I can tell you that I *need* my walks. I try for 15-30 minutes, it really really helps your mood AND your digestion. About 30 minutes after a brisk walk, I literally feel high for a few hours. This is also coming from someone who has been on/off anti-depressants for years. I just this week weaned myself off Lexapro. It's a wonder drug for anxiety and highly recommend it but after re-engineering my life and reducing about 90% of my stress levels (took about a year), I want to be as med-free as I can. Best of luck to you!

--------------------
IBS-C, gas & bloating
----------------------


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Re: Frustrated new
      #346678 - 06/01/09 07:17 PM
MikeCA1870

Reged: 03/30/09
Posts: 110


SAND - The acacia in applesauce idea was golden. I really didn't like the taste of it Acacia at all, and I found a good substitute at Whole Foods that was acacia but mixed with stevia and it tasted great. The problem was it was expensive and the amount you needed to take to get 5g SF basically made it run out in two weeks or so. I haven't even made a dent in a month on the Heather's Acacia. So mixing it in Applesauce is genius. Thanks for that.

When you say slowly increasing the dosage what do you mean practically? I've noticed when I take more like even a day later I feel gassy and bloated after eating a regular meal that normally works (today it was avocado and cucumber California roll sushi). Plus I have noticed when I focus on acacia I get the C feeling more often so I think, at least while I'm on the Nortryptyline, I need to mix in more IF.

I mixed up some catnip, anise, and hibiscus(for flavor and vitamin C) tea. It tasted great but I don't think it worked as I used it an hour before bed and in Heather's book it says Catnip is good for relaxation and insomnia but I've been sleeping fine lately, had a usual day yesterday, and then tossed and turned last night for 5 hours, eventually getting a precious 3 hours of sleep. I don't know what the heck caused that. As for ginger, I think I'll try a commercial ginger tea rather than trying to boil my own.

GLASGOW - Since being diagnosed I have begun exercising a lot more and moving more into cardio away from weights. As mentioned earlier, I'm losing weight so I can't keep on much muscle mass. Before IBS my primary staple foods were whey protein shakes and bars. I have considered meditation, yoga, and tai chi. Meditation is a no brainer, but I think I need to choose between the other two because both are a commitment - the benefit disappears the moment you stop (doesn't it suck that the bad things you do last with you your whole life but the benefits of good things go away once you stop doing them?). I want to try hypno but I used a MP3 self hypnosis thing recently, which wasn't IBS specific but more relaxation, change your mind type thing. An English guy - McKenna I think. Anyway, I couldn't go under. I was relaxed and meditative, but I was definitely not in any state of hypnosis, and before spending the money on the IBS tapes I want to be sure it works on me, as for some people it doesn't. I'll try the calcium, but I think I read somewhere around here it either promotes C or D. Also, to answer your IF question, like I said above I have off and on C now, it was only D in my life before I was diagnosed and right when it started a few months ago. So the IF helps with the C.

MINNIE - The main reason I posted was to see if anyone else had the random maybe not connected side effects. Therefore, I'm not glad certainly but definitely more comfortable knowing similar things happened to you. I'm most concerned about the temperature shifts, as aside from post menopausal women that doesn't usually happen to people. Yup, teddy grahams have HFCS, but it's not a main ingredient, and I have been eating them for weeks and they don't seem to be connected to whether I feel good or bad that day, so I let it ride. As per the vitamin deficiency, that had me worried too, especially vitamin C. I just got a multivitamin supplement today I think will be gentle enough to work. It's by a company called New Chapter Organics and it's a special men's blend. It claims it's easy on the stomach because all the stuff in it is cultured food (made with probiotics somehow, I didn't really get into the details). Plus, they ask you to take three a day, and I figure if I just take one I will still get a boost, but less chance of too much.It has ginger and peppermint extracts in it, too.

I'm going to see an acupuncturist for anxiety and I'll see what they got re: digestive stuff. I got the idea from Heather's book so it must be somewhat relevant. Other than that I think anxiety plays a role but I don't know how big. I have been way more stressed and anxious in the past and had no problems. I don't know how fundamentally IBS changes my sensitivities but I certainly feel more relaxed these days.

For protein I got some canned tuna and salmon. I also noticed hemp milk at Whole Foods had more protein than soy or rice milk, but also more fat, though it said the fat was the heart healthy kinds. It's also cheaper. My staple is soy but I tried rice (too watery and too many calories for little nutritional - fiber and protein - benefit), and I just got almond today for the 1st time. I get these little guys called Amazake which have tons of fiber and are delicious but they are only in small bottles and very expensive. If I could find large jugs of it that would be great.

Oh also, anxiety is a prob but depression definitely not. I'm depressed with a small d, like bummed, not depressed with a big D, like clinically. This has been confirmed by a medical professional!

Thanks again for the responses everyone!

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Re: Frustrated new
      #346691 - 06/02/09 06:05 AM
Sand

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

I'm glad the Acacia in applesauce idea worked for you - it was a life-saver for me.

When I started on Acacia, I started with 1/4 teaspoon a day. After 3-5 days, I went up to 1/2 teaspoon a day. Another 3-5 days, 3/4 teaspoon a day. And so on. Every so often - like at 1 teaspoon, 2 teaspoons - I'd stick at that dose for a week. It took me a long time to go up but my body never complained about it.

That said, I'd tend to blame the California roll rather than the Acacia for the gas. For reasons I don't begin to understand a lot of people struggle with cucumber and avocado is high in fat. I tolerate both but when you're first starting out they can be tough - especially if you're not eating enough so they're going into a pretty empty stomach.

More IF sounds like a good idea for you. You'll probably find you'll do better if you peel, chop, cook, puree it to start with. Learning to love smoothies is a good way to get some IF into you, well smashed and mixed with lots of SF. I don't know anything about hemp milk but a lot of people who don't like soy or rice milk enjoy almond milk.

HTH.

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

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