# Guilt with suffering IBS-D



## Friday (Dec 9, 2008)

Does anyone else feel a certain amount of guilt/weakness in character being a sufferer of IBS? I think this stems from years of being told 'it's in your mind, you'll grow out of it' I try my best not to let friends down. I dose up with imodium to get me out of the door but sometimes that doesn't work in time. Or when I get there to eat out I can't eat as I feel too ill. I then feel guilty for letting my friends down and am too ashamed to tell them what is wrong with me (how do you bring up the fact that you have urgent diarrhoea over a meal out with friends?!). For the same reason I don't get to see members of my family, I fear making a time to meet and having to let them down.I feel like I must be a weak person to let IBS take over my life like this. I have worked so hard to not let it depress me, but it does. In fact I spent most of last week in tears as I feel like a failure that I can't get on top of this and feel better for just ONE day over the past year. My Dr asked me why it had flared up so badly. I think it's the anxiety of waking up every day wondering how the day will be and know I will spend a lot of time in the bathroom! I also feel guilty taking imodium. That may sound mad. I read somewhere on this forum - 'if you were a diabetic, would you refuse insulin?' I have this stuck on my wall to remind me, but I feel like a failure having to take imodium every day to help me thru. And I wonder how long I will have to take it and how long it will work for before my system says 'no more'!I've tried hynotherapy (the 100 Audio tape), acupuncture, homeopathy, you name it! Sorry to go on. Just needed to let off steam and hope there will be somebody else out there who knows how I feel.


----------



## Guest (Jun 18, 2009)

Hello there , I have had IBS-D for 20 years now and at times it can get really upsetting when you have constant bouts of Diarrhea and you are confined to the house , when in fact you should be out doing things with family and friends or just regular chores that need doing.Many many times I have had to cancell plans because my diarrhea became Bad that day.But , I told my self > Not any more.I am going to go ahead and do the things that I want to do and see the people I want to go be with.I refuse to let IBS run my life and dictate to me how I will spend my day.I am not going to let it depress me or give me a panic / anxiety attack.There's no real reason for it to make me feel this way.So , I just go out and do the things that need doing from now on.If I have to stop and use a bathroom some where , then I just stop and go.In my personal opinion , we do NOT owe anyone an explination of our IBS problems , unless we feel the need to tell them.I guess I just feel it is Time to Take Charge Of Our IBS , not let it take charge of us.This is just how I view this.Best wishes Friday , I hope you feel better soon.


----------



## overitnow (Nov 25, 2001)

OK, I had this for 10 years (the discomfort as opposed to high pain variety) and somehow managed to run a couple of businesses, not without some difficulty, but still I was there every day. At it's worst, I would never schedule any meetings or tasks until the afternoon, and even that was problematical, and I was often near tears in the morning, but I did get through it, although I owe all of that to the supplements I take. There really is no room for guilt with all of this. I smoked for 30 years, and that was a major trigger for me. I was "prepared" for lung cancer or a heart attack; but I don't think anyone came along and told me that if you do THAT you will have solid diarrhea for years and years. Personally, for anyone who matters to you, I would suggest you simply sketch out your problem, figure out what times are safest for you, only go places where there is reasonable access to public toilets, take along some emergency supplies, dose yourself ahead of time with whatever works for you, eat and drink safe foods and beverages, and dance your socks off. Your friends probably already know something is going on with you, so just being up front and dealing with it will probably be enough for them.Make every night Friday's night.







(Sorry, I couldn't help it.)Mark


----------



## TicoTico (Nov 4, 2006)

It's tough as few understand IBS. And it's embarrassing to talk about it. Can I suggest you omit annatto from your diet. No kidding. My medical history will be written up in a major medical journal about my link of annatto as a cause of IBM this fall. Email me and I'll send you the list or just read every label. EVERY label. Would you have thought that vanilla ice cream, Wishbone Italian Dressing and crackers have someting in common? Everyone of those has annatto. It's mind-boggling how many non-related foods use annatto. Did I mention microwave and theatre popcorn? How about American, Cheddar and Velveeta cheese! Oh, sugar-free Jello.


----------



## keycat (Apr 6, 2009)

Many people with chronic illnesses feel guilty and ashamed because of it. IBS is particularly tough because it doesn't make for a very easy explanation. Diabetes and asthma are easily understood by friends, and don't sound as "gross" as IBS does.I've struggled with embarrassment over my IBS-D. Even my closest friends don't know the specifics about my condition, although some are aware that I have a "bad stomach." I'm nervous about the prospect of marriage. I want to marry someday, but I know it will involve someone else knowing about my IBS - it's not something you can hide from someone you live with, at least in my case.Everyone who is the least bit aware of my troubles, however, has been sympathetic - with one exception. On my third day of college, I decided it would be a good idea to tell my roommate that I had IBS, since I anticipated spending so much time in the bathroom. I figured she'd realize something was wrong anyway, so it was better just to let her know what it was. Big mistake. All I said to her was, "I have IBS." She said, "Ew" and made this disgusted face, and not in a joking way. It was my first clue that she was not a very nice person.But that's just the thing - anyone who thinks less of you or is disgusted because you have IBS is not a very nice person, and probably isn't worth being friends with. Real friends are understanding and accepting. At the moment, my therapist is trying to convince me to be more open about my IBS and my anxiety problems to my friends. She thinks that it would be liberating for me and relieve the burden of keeping it all a BIG SECRET. She suggested that I start just by telling one or two very close friends, people whom I know will love and accept me no matter what. It's hard to be out with friends when you know you are going to have to use the bathroom twice, three times, or more, and that they'll sit there wondering. If your friends know what's going on, you can relax, and your symptoms might even improve.Of course, I'm giving you this advice, and I still haven't told any of my friends yet. So really what I'm saying is do what you want, and don't be ashamed! After all, you haven't done anything to give yourself IBS. I have IBS because my mother and father have it. It's in my genes. It's in yours too.And lastly, there is nothing wrong with taking Imodium, even every day. It's a non-addictive and perfectly safe drug that people who don't have IBS use all the time.


----------



## suz11 (Sep 9, 2007)

Hi,I so related to your post. I have had what doctors call IBS for many years and have been treated by every possible kind of therapy....both conventional and alternative. There seems to be so few answers to this. My nutritionist tells me it is about a deeper emotional condition and I have been in therapy for many years. I rarely go out to eat....only to a few health food restaurants in my city....and never know which food will cause an attack the following day. I, too, am ashamed and embarrassed that my body does not work properly. I am very limited in what I can eat and my life has gotten smaller as my reactions to foods has become greater. This is an extremely frustrating condition and I am determined that at some point in my life I will be able to eat normally and to enjoy the act of eating. It is amazing to see how many people are affected by this "condition" and that there seems to be no one who truly knows what will heal it.Hope you are doing better,Suz


----------



## suz11 (Sep 9, 2007)

I love your positive response to this condition and how you are not letting it rule your life. I need to keep reading things like this to keep me hopeful that I can live a normal life without the shame and embarrassment I often fee.Thanks so much..


----------



## clareuk (Feb 7, 2006)

The guilt was really hard for me to deal with. I still feel guilty all the time because I miss family events, I'm always late, am always on the toilet so make other people late etc..... I guess you know what I'm talking about. About a year ago I found myself thinking differently and thought that's it. I'm not going to feel guilty about this anymore. (although I do but I don't worry myself for hours and hours anymore) I have over the last couple of years told pretty much anyone close to me at work or family about this problem and it has really helped to deal with it. If I'm late, that's the way it is and they can just deal with it. It really did help telling people as they just know why I'm late sometimes so I don't have to get in a flap about what I'm going to say etc... The way I see it, we are the ones suffering and I know what I have had to deal with - they don't. I take immodiums and I really wouldn't have managed to get through without them, so I don't feel guilty about that. Thank god for the immodiums ! But I do understand the guilt you feel.


----------



## Guest (Jun 22, 2009)

NO one should Ever have to feel Guilty that they have IBS. If we are late to a family event , so what , atleast we are there.If someone is going to give you flack about your late arrival , just tell them , so what if I am late.They really don't need to be given a full explination as to "WHY" you didn't get there at their scheduled time.The fact is , You did get there !I refuse to let anyone give me flack for something like this.Since I have taken on the attitude that > I'm going to go out and do the things I want to do regardless of how my IBS-d is that day. I have been doing pretty darn good. If I need to stop and use the bathroom some where , then I just go ahead and do it.My husband of 30 years Knows my IBS can be un-predictable , and if we arrive late some where , it's NO big deal. Because we are still there.Keep a positive attitude for all of this You Guy's , if you arrive late some where , it's No big deal the world won't come to an end .Don't let this upset and depress you into having anxiety or panic issue's !!!


----------



## Piper of Rose (Jun 23, 2009)

I feel that weekness. I feel as if I let it control me on the days my symptoms flair. I am a type A personality and need to have control of all situations. IBS takes away that control.


----------



## Guest (Jun 23, 2009)

NO one really has complete controll over any situation that might occure. It'll happen no matter what.My best advice for this is > Just try to get thru it as best as you can deal with it.I quit letting my IBS-D run my life. I now go out and do the things that I need to do that day.I quit staying at home so i'd be near the toilet , on the off chance I might have to Go.If at all possible , we need to take charge of this and we will feel so much better for it.I know I do.


----------



## Friday (Dec 9, 2008)

So I've had a better few days but then suddenly yesterday, bang! Felt fine and within a few minutes a rush to the loo and diarrhoea for the next hour or so. Whilst at work! Hideous! This is whilst taking tricyclic antidepressents and also imodium and also am on day 60 of the IBS Audio tape. What else can I do?I managed to get out of the house at the weekend for a few hours and didn't have an 'attack' but now feel am back to square one again. I am scared to arrange social things in case I have to let people down. I love the outdoors. How can we go outdoors when there are no loos available? Has anyone tried squatting in the woods when outside? Surely it would be most undignified!And I always feel so drained after an 'attack' of diarrhoea, it makes me feel weak and feeble and don't want to eat (antisocial again).Will this horrible time ever end? It rules my life and I can't see that ever changing.


----------



## Genie75 (Jun 22, 2009)

Well, like I said before, I'm very lucky I work at a type of job where I can pretty well use the bathroom anytime. Except yesterday when I had an IBS attack in washroom at work and collapsed on floor.I have decided to not let IBS ruin my life so much. I got very depressed in the winter time because of my condition, and it just wasn't a good thing. Somehow I got thru the depression. Maybe the sunshine of summer (oh yeah and that one month of going back onto antidepressants seemed to help).Anyways, I have decided too now that I am not going to let IBS ruin my life. I am not going to stop working cause I have IBS. I am not going to stop going camping cause I have IBS (not sure I'll manage but it's worth a try). Although I must say I have minimized eating in restaurants. I had literally stopped eating meals with my bf. I was on my own eating plan and I am a "hider". I wanted to hide. I didn't want anyone to know how I eat. I wanted to isolate myself and to a certain extent I did the past winter. Like I said I stopped eating meals with my bf, etc. Now, I am trying to cook meals for "us" about once a week. I have decided I will cook whole meals. And I will pick away at my food and eat what I feel like eating. If there is something on my plate I feel unable to eat that day, I don't make a fuss about it, and my bf is learning not to make a fuss about it. I simply put it away in the fridge until I feel up to it. If worse comes to worse the dog will get it.But I feel like bailing out of camping and travel cause I wasn't doing well this year. And I'm going to make myself go. I will just take "special" measures to make sure I get thru. I attempt to control my diarhea and/or constipation it by what I eat, how much I eat, by fasting, etc. Although sometimes I get sick of it and wish there was just a pill to take. I have even sometimes thought that maybe just having my colon removed might make my life simpler.Like if I know I have to get thru something and I won't have access to a bathroom, I will virtually go into "fast" mode and only drink liquids, starting the day before. Stuff like that. I am a bit afraid of not having control over the situation. I had stopped eating cause I was afraid to eat, and I still do that a certain amount. If I have diarhea I will go onto a liquid diet and try adding food back in gradually. It is a real pain.But I have felt horrible guilt and have even blamed myself for bringing this condition on. Like I did something in my life that caused this. I am no longer doing this and am accepting that it just happened, that I'm strong, that I'm survivor and I can live a happy life in spite of my condition. And also, I allow myself to acknowledge that I have a chronic condition, and I do let people around me know. Most do not understand but I feel it is my right to be "sick" and not have to hide it. That I don't have to cowtow to anyone and pretend there is nothing wrong with me when there is. If anyone can't handle that, or dont' believe me, then it's their problem, not mine.


----------



## salvationishere2 (Jul 1, 2009)

Hi all, I'm a new IBSGROUP member, but have had IBS-D problems for the past 6 years and my health is finally almost normal now!Yes, I have dealt alot with guilt in the past because so often I would feel worse after eating. So I would feel like I was eating too much or the wrong thing. I started to think maybe I loved food too much. But for me the more I isolated myself, the more unfair and unrealistic I was toward myself. I have found that the more I am around other people, the more I realize that everybody loves food. Although I know how difficult life is with this condition, everybody has different issues that they struggle with. I think the more that I've gotten to know others, the more I've realized I'm not alone in dealing with pain. In fact, I don't think it is healthy to deal with pain alone. It's good to have friends that u can share with, but for me it was a really smart move to get some counseling to share grief with. That way my friends don't have to hear it.At times I got angry because others look for other causes of our suffering like emotional problems. But it's not necessary that we convince them of what the real problems are. Let me pause here by giving u a summary of my problems: 6 years ago I lost 65 pounds in 6 months with no change in diet or exercise. My parents and friends thought I was anorexic. I started getting cold easily. My immune system lowered and I was not able to keep any food in my system. I had chronic diarrhea. So I began a gluten-free diet and this helped, but I still had problems with certain foods. So I took a food log, and this helped more. This helped eliminate my diarrhea-triggering foods. But there were still sometimes that I would get bloated for no explainable reason. Or have severe sleeping problems. So I occasionally fasted. Fasting was the only thing that would restore my body to normal. And yes, I have had blood and stool tests, colonoscopy, and endoscopy to test for Celiac Disease, Crohn's, parasites, etc. All came back negative. However, I recommend www.enterolab.com cause they did some food allergy testing that IDed soy as being a major problem for me. And FYI, soy is in alot of gluten-free foods and is also one of the top allergens. Early on, I was diagnosed with IBS, but I didn't believe these test results, thinking instead I really had Celiac Disease. Anyway, the GOOD news is that there is hope out there! I just read Dr. Mark Pimentel's book a couple weeks ago and now everything makes sense to me. I wondered why did I still have bloating if I had eliminated all problem foods and why was it that I sometimes got really bloated even when eating "safe" foods? The reason I think is what Pimentel identifies as SIBO. That bacteria has built up in my bowels and that I need to get this cleaned out. Pimentel is in charge of the nation's center for IBS research. And he said that as much as 80% of IBS patients may have SIBO. Any way, he recommends severely restricting sweeteners/sugars/carbohydrates because these cause bacteria build-up. Since reading this, I have eliminated all sugars and sweeteners, even fruit. And this has helped me immensely. I also took his advice to wait 5 hours between meals and only eat 3 times a day. This gives our inefficent bowels a chance to digest everything and rest between meals. Now I have less of an urge to eat between meals (sounds counter-intuitive, but I'm less hungry) and I don't have to worry as much about how I will bring food with me to social outings since I can easily last 5-6 hours without food. Plus I'm saving money cause I don't need to buy fruits or sweets. And it's probably better for my teeth! Additionally this has helped me to sleep alot better! I've had severe sleeping problems where I was only getting 4 hours sleep/night for about 6 months straight. But now I'm getting about 7 hours quality sleep/night! Plus, I've reduced my daily melatonin dosage from 16mg down to 8mg.So now I understand that when I would sometimes get bloated for no apparent reason, it was because bacteria had built up. And this is why fasting made it better, because gradually this bacteria would break down over time. Another thing that helped me alot to reduce bloating were the enteric-coated peppermint capsules.Between meals, Pimentel recommends only water, but I sometimes like peppermint tea with lots of ground ginger added. Zero calories and it reminds me a little of hot cocoa--not in taste, but because it leaves a good feeling in my throat and warms my stomach.Also I take digestzymes 20 minutes before each meal to speed up digestion.Soon I will be taking Xifaxan, which hopefully will eliminate my bloating and bacteria entirely. But word of caution here. Xifaxan only eliminates symptoms for 2 months and then u have to retake it. So staying on Pimentel's low-carb eating plan is important for slowing bacteria growth. If u r like me, u probably love sweets and think it would be impossible to give up. But I've found after giving up sweets that I miss them alot less. Plus there are so many other pleasures in life that I have missed out on. Life is too short!I have tried alot of different foods and diets, and spent thousands of dollars (post-insurance) over the past 6 years and here is what I have found:
heat all foods prior to eating
drink lots of water
avoid starchy vegetables
avoid too much fiber
great vegetable sources are burdock root and daikon root, both good for eliminating bad bacteria and for diuretic purposes
flavoring:turmeric, ginger, shiitake mushroom. A little onion (heated) or garlic also tastes good, but too much onion or garlic could cause bloating/gas. Also I like 100% cocoa sprinkled on my sweet potatoes sometimes.
olive oil was the only safe oil for me. I tried every other oil.
Red meat is too difficult for my body to digest. And red fish (tuna, mackerel, etc.) is also too difficult. Like Pimentel says, we need food to pass thru our systems as quickly and easily as possible.
Instead I eat chicken breasts (low-fat), tilapia, and cod. These are all low fat, which is important. People sometimes wonder why I need to worry about fat cause I am very slender for my size. But this is important cause from what Pimentel says and from my experience, excessive fat increases body's time to digest food which is bad for bloating and sleep. (Body can't shut down totally to sleep while digesting food).
safe carbs: short-grain brown rice, sweet potatoes, acorn and butternut squash. Occasionally russet potatoes.
And believe it or not, I cook almost all of this in the microwave! You can cook all of the above in 3 minutes or less just by cutting them into pieces, rinsing them, and putting them in a foldable sandwich bag. This is important cause by rinsing them, u add the moisture microwave needs to cook them faster than they would dry. And foldable is better than ziploc cause it allows some pressure to escape so bag doesn't pop. Only exceptions are the following: 
The rice I cook in a rice cooker
The chicken and fish I cook in a slow-cooker
And the burdock, daikon, and shiitake I boil in a big pot for a few hours.
I hope this helps all of u. It has been invaluable to me. I wish somebody would have told me what I know now. You don't need to figure this out yourself. You are not alone. There is help out there. SIBO is treatable! God loves you and your friends/family love you! The good news is that there is a treatment for SIBO, Rifaxan. Hopefully in the future, insurance will cover this once they realize it is not continual but just for 10-day treatments.


----------



## salvationishere2 (Jul 1, 2009)

Keycat, it's nice to hear your positive outlook and that u r full of proactive optimism! However, if u r taking immodium daily, what do u think the underlying cause may be? It sounds like u r just dealing with the symptoms. What medical tests have u had done?


----------



## Chattyaholic (Jul 2, 2009)

Hello, everyone. I learned about this forum from another message board, and I just registered here today. This is my first post.I, too, have felt a lot of guilt over having IBS-D. I have had it over 10 years. At first it wasn't bad, just once or twice in the morning right after breakfast and I was "good to go" for the rest of the day. Then after awhile it started happening sometimes after lunch too. And most recently I've had trouble in the evenings as well, even sometimes waking up during the night to "go." So, I finally discussed it with my doctor and she put me on Bentyl. It helps, but does not completely control it.The bathroom dictates how I live my life. When I am at home, I'm fine because I know I have the use of the bathroom immediately when I need it. When I leave the house that's when the worry begins. Even if I go just to Wal-Mart it's a concern because the bathrooms are in the back of the store. What if I don't make it? We bought some property up north a few months ago and it's an hour ride to get there. At first it made me extremely nervous because a bathroom isn't available immediately should I need to find one. So, my husband made a "toilet" for me out of a 5-gallon bucket and a plastic toilet seat/lid (sold in the camping section of the sporting goods store). I keep it in my car at all times and it has helped, because even if I "have to go" and there is no bathroom available I can stop at the side of the road and use my "toilet" if I really have to.But back to the guilt. My husband is good, but even he doesn't completely understand what I'm going through. I know he doesn't like it that I have to wait until afternoons to go anywhere. And I went to Disneyworld this past March with my Mom, and she didn't understand having to wait in the mornings before we went to the parks. I didn't want to leave the hotel room until at least 11:00, and even then it was a concern walking to the bus stop and then riding the bus to get to the park (no bathroom on the bus!!) and after getting off the bus it was a long walk to the entrance. I was nervous all the time! One morning in particular she wanted to get going, and I ended up in tears because she was making me feel so guilty. She just asked me to take another short trip with her and I finally told her no, I can't. I love spending time with her, but I just hate the anxiety and nervousness, worrying over the bathroom and how many times I will have to "go." I have a diabetic check-up in September, and I'm going to ask my doctor if I can try a different medication since the Bentyl isn't working 100%. It would be so wonderful to live my life the way I want to, instead of being at the mercy of IBS.


----------



## salvationishere2 (Jul 1, 2009)

Chattyaholic,I'm sorry about your pains. I can sympathesize. Have u tried taking Xifaxan? A 10-day course treatment may relieve your symptoms for over 2 months!


----------



## BQ (May 22, 2000)

Chatty.. Welcome







Do you use imodium at all?And have you seen the thread about Calcium Carbonate entitled "Linda's Calcium.." thumbtacked to the top of this page?Check it out.All the bestBQPS Just so you know Bentyl is an antispasmodic med not an anti-diarrheal med. It may help with pain or slow gut contractions down a bit but it isn't really designed to be an antidiarrheal med.


----------



## Chattyaholic (Jul 2, 2009)

No, I have not tried Xifaxan, never heard of that one. But I am going to discuss it in September with my doctor, and see what she suggests I try next.


----------



## Chattyaholic (Jul 2, 2009)

BQ said:


> Chatty.. Welcome
> 
> 
> 
> ...


I tried imodium before I started Bentyl - didn't help.I also took Caltrate for several weeks - didn't help, but I see here someone said not to take a multi-vitamin as that has magnesium, and I was taking a vitamin daily at the time so that may have had something to do with it. I should cut out the vitamin, and go back to the Caltrate and give it another try.Thank you.


----------



## BQ (May 22, 2000)

So imodium doesn't stop your diarrhea??Well maybe consider looking at _when_ you take it. Some folks find it helps more to be taken as a preventative measure _before_ the D starts. Like try taking 1, or if that's too much a 1/2, tab with your evening meal... it may make your monrings loads easier to cope with.All the bestBQ


----------



## Thai (Aug 22, 2007)

Chatty,Play around a bit with the times you take it.It can make a difference.Read what Linda has to say and contact her if you need to.She is really good about lending a hand.Thai


----------



## salvationishere2 (Jul 1, 2009)

Chattyaholic, September is a long way away. R u sure u want to wait that long? Read Dr. Pimentel's book: A New IBS Solution. Xifaxan is the most commonly used treatment for IBS in this country and in Dr. Pimentel's IBS center in LA.


----------



## BQ (May 22, 2000)

I thought one would have to be positive for SIBO to have Xifaxan prescribed???BQ


----------



## salvationishere2 (Jul 1, 2009)

No, u don't have to be diagnosed with SIBO first. Xifaxan can be prescribed empirically. If the GI suspects u may have IBS or SIBO, he gives u a 10-day course of treatment. If symptoms improve, then it is likely u have SIBO.


----------



## BQ (May 22, 2000)

> can be prescribed empirically


Well... I think none of the Docs I have seen would prescribe it as a means of detecting SIBO... I think they would want the test to be positive first before they gave it to me.BQ


----------



## sharanne (Aug 23, 2006)

I know just how you feel. The weak, drained out feeling just makes life intolerable at times. Its worse than the diahorrea itself. When it happens I just don't know how I am going to make it - but I do despite everything. I love life and have a lot of interests and a wonderful family which does help. Good luck!!


----------

