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-   -   IBS 20yr Misery (http://www.healthboards.com/boards/irritable-bowel-syndrome-ibs/902879-ibs-20yr-misery.html)

LouAnn53 05-29-2012 10:06 PM

IBS 20yr Misery
 
This may be a long thread, but my so called IBS is 20yrs. I am 59 years old and have been suffering for about 20yrs. Here is how is goes: I get the urge to have a bowel movement, visit the bathroom and relieve myself. No pain, no problem. About 20 min to 1/2 hour later, I once again get the urge to visit the bathroom again....this time I have a little intestinal pain, and bowels are a little softer. I finish this visit and again about 1/2 hour later I visit the bathroom again, intestinal pain is growing more intense with each visit. To make a long story short, I visit the bathroom every half hour for around three to four hours, BUT have no more bowels to pass, and my intestinal track is having extremely intense spasms trying to pass bowel that is no longer there. The pain is my lower stomach is as severe as childbirth, my rectum is trying to push out something that is NOT there. The pain is enough to make me want to scream as though I am having a baby. I know the pain of childbirth. I had a colonoscopy 9 years ago and they removed two non-cancerous polyps and told me to come back in 10yrs. I currently am taking 60mg of dicyclomine when I get an attack. I have lost no weight. I do have bright red blood in the toilet and blame this on hemmorids. Does anyone have any of these severe spastic colon symptoms??

seabell 06-04-2012 04:29 PM

Re: IBS 20yr Misery
 
I too have suffered from IBS-D for 20 years. My mornings were like yours. I'd park my self right outside the bathroom because many times I was unable to make it to the toilet if I wasn't closer than 10 feet away from it.

I was mostly housebound, and if I ventured out, you better believe I knew where every bathroom was. I carried a bag in my car with a change of clothes, wipes and toilet paper.

When those cramps would hit, I'd fall right into lamaze breathing to get thru them. I think I may have even passed out once or twice from the pain.

I had every test, xray, ct scans...my diagnosis was always IBS. I tried every medication available, OTC and prescription. Went on an antidepressent which totally freaked me out, went on something else that just surpressed me/my emotions... made me feel like I was constantly under a dark cloud, but did nothing for my stomach issues.

I went dairy free, gluten free, existed on protein shakes...nothing helped. I could eat a double pepperoni pizza and have no problem... yet eat a saltine cracker and spend hours in the bathroom.

Not one doctor could help me. I was told to be happy that what I had wasn't terminal.

From trial and error, I found what I can eat and what I should avoid. If I am eating out (a new thing for me recently) I avoid heavy, fatty, greasy and spicy foods. I can't eat a lot of veggies and fruits (which sucks cause I love veggies and fruit!) I alway start a meal with a piece of bread or pasta or some sort of complex carb, just to give my stomach something to chew on. I can eat a salad, in small portions, once or twice a week, but not 2 days in a row and never before a meal...always with. Same with other veggies. I avoid all carbonated drinks.

But what really has made a difference in my life is just over 4 years ago I started taking acacia fiber (google it... in the yellow pouch). It has changed my life. Or given me back my life. I may have a bad IBS attack once a month now and that is if I eat poorly or too much (for instance, very rich creamy ice cream, while it tastes divine, will have me tied in knots for hours).

I am never without this fiber, haven't skipped taking it once. It is not like metamucil or fiber con...they made my IBS worse. This is odorless, tasteless, clear...doesn't leave that jelly like icky stuff in the glass.

I can go on long car rides now, eat out, go to the movies, walks in the park. All the things that I had given up.

counterclockwys 07-25-2012 07:18 PM

Re: IBS 20yr Misery
 
[QUOTE=seabell;4992818]I too have suffered from IBS-D for 20 years. My mornings were like yours. I'd park my self right outside the bathroom because many times I was unable to make it to the toilet if I wasn't closer than 10 feet away from it.

I was mostly housebound, and if I ventured out, you better believe I knew where every bathroom was. I carried a bag in my car with a change of clothes, wipes and toilet paper.

When those cramps would hit, I'd fall right into lamaze breathing to get thru them. I think I may have even passed out once or twice from the pain.

I had every test, xray, ct scans...my diagnosis was always IBS. I tried every medication available, OTC and prescription. Went on an antidepressent which totally freaked me out, went on something else that just surpressed me/my emotions... made me feel like I was constantly under a dark cloud, but did nothing for my stomach issues.

I went dairy free, gluten free, existed on protein shakes...nothing helped. I could eat a double pepperoni pizza and have no problem... yet eat a saltine cracker and spend hours in the bathroom.

Not one doctor could help me. I was told to be happy that what I had wasn't terminal.

From trial and error, I found what I can eat and what I should avoid. If I am eating out (a new thing for me recently) I avoid heavy, fatty, greasy and spicy foods. I can't eat a lot of veggies and fruits (which sucks cause I love veggies and fruit!) I alway start a meal with a piece of bread or pasta or some sort of complex carb, just to give my stomach something to chew on. I can eat a salad, in small portions, once or twice a week, but not 2 days in a row and never before a meal...always with. Same with other veggies. I avoid all carbonated drinks.

But what really has made a difference in my life is just over 4 years ago I started taking acacia fiber (google it... in the yellow pouch). It has changed my life. Or given me back my life. I may have a bad IBS attack once a month now and that is if I eat poorly or too much (for instance, very rich creamy ice cream, while it tastes divine, will have me tied in knots for hours).

I am never without this fiber, haven't skipped taking it once. It is not like metamucil or fiber con...they made my IBS worse. This is odorless, tasteless, clear...doesn't leave that jelly like icky stuff in the glass.

I can go on long car rides now, eat out, go to the movies, walks in the park. All the things that I had given up.[/QUOTE]
I am brand new to using these boards! My ibs symptoms are 30yrs and running...no pun intended. Back then you didn't really talk about this problem and they did not know to call it ibs. I,m so overwhelmed reading that so many others have experienced what I've been going thru, you know what to call it.....and YOU especially know what has helped you and shared it. I placed my first order for acasia fiber today after googling it, like you said, and ordered the yellow packet. If this works for me as I think it will I'll have relief for the first time in 30yrs and I'll have you to thank.....more than I can say....Thank you!!!

seabell 07-26-2012 05:32 AM

Re: IBS 20yr Misery
 
[QUOTE=counterclockwys;5027582]I am brand new to using these boards! My ibs symptoms are 30yrs and running...no pun intended. Back then you didn't really talk about this problem and they did not know to call it ibs. I,m so overwhelmed reading that so many others have experienced what I've been going thru, you know what to call it.....and YOU especially know what has helped you and shared it. I placed my first order for acasia fiber today after googling it, like you said, and ordered the yellow packet. If this works for me as I think it will I'll have relief for the first time in 30yrs and I'll have you to thank.....more than I can say....Thank you!!![/QUOTE]

(((counterclockwys))) I take the fiber at night before dinner. Mix it into a glass of water and drink it right down. You should start seeing an improvement in your tummy in a week or two and over time, you'll start feeling better and doing things you haven't done in a long time w/o worrying where a bathroom is. One day (I hope) you'll have an [B]A HA [/B]moment like I did. I was out, feeling great, didn't give my stomach a thought in hours, and did a little happy dance right then and there!

Please let me know how you are doing!

SB

counterclockwys 08-08-2012 05:38 AM

Re: IBS 20yr Misery
 
Dear Seabell, I do not know if I should keep doing this thread or not....please school me. I'm halfway through my second week. If I was weaker I'd just quit with the feeling of "better the devil you know, than the one you don't". I wasn't looking for any miracle after 30 yrs....I just didn't think everything would get worse!!! I know I told my stomach "you can't have everything anymore". I love red meat, crackers and cheese, all dairy products....all the triggers. So I read the book, am following the recipes with rice and pasta which I hate and really being controlled...rice milk..are you kidding?!!!

seabell 08-08-2012 07:05 AM

Re: IBS 20yr Misery
 
Hang in there counterclockwys! Are you taking the fiber? I read the book just to get an idea of what my triggers can be, but I don't follow any of the eating plans. I know what my triggers are and avoid them most of the time but I can have them occasionally. [B]Triggers are different for everyone [/B]so eat what you like, but be aware of how you feel after eating. I enjoy read meat and love cheese! I do avoid spicy, greasy foods as much as possible (but I love french fries and can eat them w/o worry).

Have you tried keeping a food diary? I used a regular calendar and scribbled down what I ate and how I felt. I began noticing a pattern and that helped me determine what foods were my triggers. Make sure you do eat carbs with your meals (rice, pasta, bread). Put cheese on your rice! Limit your fruit and veggies. For me, eating with IBS is the opposite for eating healthy (meaning my carbs/protein portions are larger than my fruit/veggies)

Oh, and stop all artificial sweeteners. That was a biggie for me.

A typical day of eating for me consists of: english muffin with peanut butter and banana for breakfast. Lunch can be ham and cheese and crackers, melted cheddar on tortilla chips (yeah, I love cheese) or even a PB/jelly sandwich. Dinner is chicken or beef, rarely pork because I find it hard to digest, Friday night is Pizza! Side dishes are pasta, rice or potatoes and some veggie. I snack on nuts (something I could never eat in the past) grapes (not too many), and the occasional Oreo cookie!

If I do get an 'attack', I sort of follow the BRAT diet... bananas, rice, applesauce, tea, but I'll put the banana on a soft bagel, rice in chicken broth. A baked potato, butter on egg noodles. All of these foods settle my stomach.

My goodness, I'm throwing everything I can think of into this post... I wish for you the relief and happiness I found with a 'behaving' stomach.

Please keep in touch. I'd love to hear how you are doing.

SB

p.s. do you take imodium or something that will slow down the motility in your intestines?

ladybud 08-08-2012 07:24 AM

Re: IBS 20yr Misery
 
I firmly believe that many people with IBS really have food allergies or intolerances. I am one of those. After 40 years of suffering with IBS, I found out I am diary, gluten and yeast intolerant, and as a result, had leaky gut syndrome that made me sensitive to 31 foods in all. Since taking out just the 3 items, I am like a new person. The key to this though, is you must get IGG food testing done, not IGE. IGE is used for severe, acute allergic reactions to foods like shellfish, peanuts. Most allergies are more subtle, and IGG shows that delayed allergy response. So when people get tested with IGE (the standard allergy test method), they are told they are negative for the allergy, but their IGG (not tested) may have been positive. I would explore that option so you don't have to struggle through the trial and error method of figuring out what foods to avoid. A functional medicine Dr. is more likely to be in tune with that type of testing. Try googling "functional medicine physicians" for your area.

ladybud 08-08-2012 07:31 AM

Re: IBS 20yr Misery
 
PS Ten years seems like a long interval between colonoscopies for someone who has had 2 polyps removed. Usually it is 3-5 yrs. I would try to schedule my colonoscopy now to see if anything new has cropped up and to get a clean slate for trying to get this better controlled. The blood could be from something other than hemorrhoids. It is just not safe to assume that. Tumors in the bowel can cause tenesmus too-that feeling of having to go so urgently, but nothing is there.

counterclockwys 08-08-2012 07:49 AM

Re: IBS 20yr Misery
 
SB...I will keep waiting & hang in there. My stomach is just saying "you want to play games with me I'll play a new one!". Fiber... is 1 teaspoon at noon and one with dinner.
Rice, pasta, and sour dough bread are my newest friends...I love the bread toasted. Never any art. sweeteners...sugar guy me and I love gummy bears! No immodium or anything else as it never seemed to help in the past, but I haven't tried it with this new diet either. All your suggestions give a light at the end of the tunnel... so keep throwing..thanks again!!! Am I posting right..there's not enough room on quick reply?

seabell 08-08-2012 08:37 AM

Re: IBS 20yr Misery
 
You're posting fine but can also hit "Post to this Reply" on the bottom left of post you are reading (does that make sense?)

I take 2 heaping tsp of the fiber at night, preferably before I eat. If my stomach was a little off, I may take a little bit more of the fiber.

You're not going to like this...but give up the gummy bears for a bit. I loved Twizzlers, but found that they are one of my triggers. I wonder if gummy bears have something similar in them (some sort of gelatin maybe) that makes both candies soft and chewy? Maybe makes them hard to digest?

I take imodium and have a script for lomotil. I know that both help slow down my food process. I take imodium almost daily with no problems.

Hope that light at the end of your tunnel gets brighter and bigger!

counterclockwys 08-15-2012 08:30 PM

Re: IBS 20yr Misery
 
Hi SB....In frustration, I'll ask a lot of questions. I definitely acknowledge that our triggers may be different. Do you make your own pizza? I tried pizza out and it didn't work...gas, bloating messed me up and yes I love pizza..I just can't eat it anymore. For three weeks I held to the schedule till my birthday last week. And I did go out to eat...just one meal...and I couldn't sleep all night my stomach was roiling and boiling sooooo bad. Okay, I get it ....it just is not worth it anymore to think in terms of trying to be "normal" this early in the game change. In this third week I will increase my fiber to three teaspoons a day. You said that you take yours in the evening at one time. Did you find that by doing so you had better results with more fiber at one time? So far all I can tell is that it seems the more fiber I take, the worse my bloating and gas seem to be getting. Diarrhea symptoms have not changed so far...6 to 8 times a day. I accept your challenge to keep a strict diary of what I'm eating and the consequences instead of just trying to "remember". It really may further help to define what I need to change even now with a IBS diet. And I also will try to add imodium daily. GIVE UP GUMMY BEARS!! OK...I'm open to try anything. Thanks for the help ! Still hanging in there: counterclockwys

seabell 08-16-2012 06:39 AM

Re: IBS 20yr Misery
 
The reason I take my fiber at night is because whatever I put in my mouth previously, zoomed thru me, so I'd take all meds (vitamins etc) at night when I was home, safe and sound, and near a bathroom. I usually didn't eat anything during the day if I had to be out.

I think you have to limit what you eat for the next couple of months to non spicy, non greasy, gentle on the tummy foods and give your stomach a chance to heal while on the fiber. Eat smaller portions a few times a day as opposed to 3 large meals. Gas can be caused by swallowing a lot of air, so be aware how you are eating when you eat. So often we are in a rush and gobble our foods. I used to count to 32 while I was chewing and keep my mouth closed (no talking) so I wouldn't swallow air. Oh, believe me when I tell you I tried everything to better my stomach issues. I know I tried Beeno and it didn't help at all. Peppermint oil does help, as well as Peppermint Tea.

I wouldn't increase the fiber (it's the acacia fiber right?) until the gas stops.

I'm so hoping you see an improvment soon!

SB

p.s. I forgot to add that when I eat, I try not to drink anything (unless its a PB sandwich!!). I remember reading somewhere that your digestive system works better w/o the addition of liquids so of course, I had to try it.

counterclockwys 08-16-2012 07:44 AM

Re: IBS 20yr Misery
 
Thank you, SB! I also have been cutting back on size proportions to about half. I know that is helping and I may even lose a few pounds. I can't seem to stomach the peppermint pills...too strong..burn a hole in my stomach and give me heartburn. But I've been drinking herbal teas for many years and especially like mint teas so that's a plus. I always drink tea with my meals and in between...so I'll eat and then drink afterwards to see if it helps. As for the Acacia Fiber, I took for granted that it was "Heather's"...it seemed to be the best out there..hope thats right! Thank you again for all your suggestions. I know that they may not all work for ME..but some may and I'll keep trying and believe something will happen even if its way too slow...I really do want some kind of relief...and I was kidding myself...I was looking for a miracle! counterclockwise

seabell 08-16-2012 08:02 AM

Re: IBS 20yr Misery
 
The horrible aspect of IBS is that there is no "cure". Doctors would love to be able to give us a pill and voila...we are all better. But when they tell us to take certain drugs and it doesn't work, and they give us certain tests which reveal nothing, they would like nothing better than to show us the door. I have heard that its all in my head and to be thankful that its not terminal. :confused:

It is boards like this one where you can find out really helpful info, different things to try, different things that have worked for others, which will hopefully work for you. I know how happy I was when I found this board and realized that I wasn't alone in my tummy issues.

Yes, it is Heather's and her peppermint tea is awesome too.

Have you ever been tested for gluten allergies? When I first went gluten free, I think I lost 20 pounds because food was so hard to find. My grocery store now has an aisle of gluten free foods.

Try to find the multi symptom imodium. It works on diarrhea, cramps, gas and bloating. I take 2 tablets every morning if I'm heading out and sometimes will take 2 if I'm going out to dinner.

SB

counterclockwys 08-24-2012 05:25 AM

Re: IBS 20yr Misery
 
Hi, SB! This is now a whole new ball game. This past week I've kept to a non-trigger IBS diet..it is now soooo important. I also did not increase my fiber..as you suggested. What I did do was to begin taking my 2 tsp of fiber in the a.m. with my hot mint tea and added 1 immodium tab.....now five days ago! I know that YOU KNOW this is awkward. Most people want to share when they get a new car, new house, new clothes. I'm excited to share ...for me..a huge change in my gi tract. No diarrhea for 4 days!!! This is the first time in 30yrs. Now I 'm sure I'm not there yet. I have no idea what's going to happen in the next 2 days....am I going to have a huge accident I didn't expect?...I just don't know yet....but this change is very good! What a journey. Again...I thank YOU for your insight, helpful suggestions, and sincere "leading". I keep going back through all of the posts so I remember......here's looking toward my AHA moment! Counterclockwys.


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