Can anyone relate to keepin up a normal facade out in the world?
#364120 - 04/02/11 11:04 AM
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taroh73
Reged: 12/28/04
Posts: 184
Loc: chicago, il
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I have had severe and in many ways debilitating IBS for over a decade. It has robbed what would have been my years of building a career, dating, having kids. Yet, I go out there and put on a brave face everyday, and other than lots of "there must be something wrong with you or you wouldnt'.(fill in the blank- be single, work here, etc..) I put on to people that I am totally normal because I am too embarrassed to admit I have IBS, am too private to have the I don't care what others think attitude. But the flipside of that is that when you try to explain to someone how devastating and horrifying the symptoms and life impact are, they think it mustn't be that bad becasue I am so "normal".
Does anyone get what I am saying. I am exhausted by the energy it takes to go out into life and pretend for whatever the number of hours is- that I am normal. And then I come home and collapse by myself, having kept it together all day. Anyone get it? And please, no offense, but I'm not looking for the cheerleaders to tell me I shouldn't care what anyone thinks. I do, period.
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Are you following the EFI diet with FODMAP restrictions?
I basically have only about 25 food items on the list what I eat but lead a normal life otherwise. My main problem has been not being able to eat out/ dinner parties are no fun for me, but apart from that a very restrictive diet withno alcohol or caffeine, no dairy, little IF, careful calculating of food's fat content and limiting it to the minimum alongside not eating FODMAP unfriendly foods makes me function like a normal individual. Have you tried eating like this? Has it not helped?
But I do sympathise, I very much care about others' opinions and have often felt not just embarrassed or frustrated but even ashamed to have IBS.
--------------------
Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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Thanks for your reply... I don't really want to get into the whole diet issue because it's such an endless riddle with no answer. I just really wanted to identify with someone on a different level. No one would ever guess anything is wrong with me when I walk out the door and it mininmizes how bad it is becuase then when i confess or try to explain, people really think it's not bad becuase I look and act SO normal. THat's because I don't spend anymore time around anyone than I have to and I am always hiding out at home.
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Oh my--I hear you more than you know. I read your post yesterday and have been waiting until I had a good few minutes to sit down and figure out how to respond. I am in your same boat-- I put on such a show for everyone all the time. When I do breakdown and say I'm not feeling well, no one gets how serious of a problem this actually is. It isn't just a 20 minute belly ache.
I can honestly say though, that I am a born fighter. Although I've had some really bad times, I refuse to let it win. I have gotten to the point of giving up many many many times. Why fight? why bother? I'm sick. Always will be. But just when I almost hit rock bottom, I get a good day...or even at times, just a good few hours. When I feel good, I am out and about doing anything and everything!
Now, I really don't want to be one of those 'hang in there, it gets better " people. I hate when people do that to me. I'm just trying to say that I completely understand.
No one really gets how big of an issue my belly is for me.
I've been lucky to have found a great husband who actually met me a week before I landed in the hospital the first time. We joke that he "never got a chance to get out" since I was so sick...lol. He's supportive, but let me tell you, the guilt about not being able to do certain things, eat certain things, etc... is tough for me. I am SO dissapointed when we have plans we have to break b/c I'm sick. But I fought to have a normal life with him and when I'm well, we certainly do just that.
As for career, I agree. I work part time at a VERY flexible job, so that's ablessing. I'm 27 and sometimes wonder what I could be making if I just could hold down a 9-5 daily job. I hate feeling like I'm not pulling my weight. I recently started my own music studio where I teach lessons and childrens music classes from my home. That gave me a great sense of security, and I've been feeling confident enough to move it to an outside studio just this past month.
I'm so sorry we both have to deal with this. It does suck, and I am SO sick of putting on my "oh, I'm great thanks" face when my stomach is in knots or I've spent the entire night in the bathroom.
Hang in there-- sorry, no real advice, just wanted to tell you I get it and you aren't alone. 
--------------------
IBS-A
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Thanks so much for that! I so didn't want advice (you know how that is) just to relate to someone else. It helps. Thank you thank you thank you.
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T,
This is my first post out here, but your question struck a chord with me personally.
Essentially, you just summed up my life. I won't give you any advice except to say that you aren't alone. I stay at home most of the time, can't explain to others why I can't meet up with them, can't travel....yeah, that was beautiful a couple years ago--driving to Chicago from Michigan on business. Our VP wanted to drive us down there. Sweat starts pouring down my face...and sure enough, I have to ask him to stop about 10 minutes into the trip.
It's only gotten worse and I now avoid about all travel unless I can drive. I can't explain it to anyone because outside of those on boards like this...not many would ever understand. Even my mother caught wind of some of my issues...told me it was all in my head.
It's like this viscious cycle. Your anxiety contributes to your IBS...you get more anxiety thinking about it, which only compounds it... I already battle depression and this just makes it worse. Far worse.
IBS rules my freaking life. I guess I'm one of the 20% of guys who got this "gift."
So yeah, I get it. I apologize if I hijacked your thread..I just think when we give our stories, it can help. Maybe. Heather's book helped me alot--the story about the friend who was traveling with the friend with IBS who held her hand and told her not to worry--it was remarkable and to have a friend like that must be amazing. If you were here, I'd cry with you because only we(those who deal with this) really understand.
Try to hang in there. You'll be in my thoughts.
Kevin
Edited by KevinMB (04/04/11 11:00 AM)
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Thanks for replying Kevin.. nice to hear from you. And I'll keep you in my thoughts as well. It is nice sometimes to know you are not alone, even if it all still sucks!!!
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but have you tried the diet for a sustained period of time? Heather's rules are very (too) permissive for a lot of sufferers, perhaps you'd like to combine its essence, ie no alcohol/caffeine, no dairy, fat content of meals restricted to 20-25 per cent of calories per meal, IF very limited and only with SF AND AND AND AND the FODMAP approach simultaneously, for which pls see Syl's signature.
I am following this diet, Syl is too, his is in fact even more limited. it's true that you can't lead a normal life that you can't really go and feast at dinner parties and you practically can't eat out, but with a diet like that your symptoms too may wholly improve in the long term or at least be drastically reduced.
I felt exactly the same, said the same that for me what I eat matters little and it's haphazard, went through the same as you until I took this dieting seriously. Never looked back.
--------------------
Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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Hi...just wanted to thank you for your original post( as crazy as that sounds...) because I am going through the same feelings right now. I am in a rough patch of pain and bloating and not sleeping because I keep freaking out that something more serious is happening to me. Sometimes it really helps to know that we are out "there" together and yes, it just plain sucks that we have to suffer with this. Today I ate lunch with my friends who all ordered this delicious( I know from my past) salad with fries and Russian dressing- I used to be that girl too. Most of them don't know about my problems because as I am sure we all feel, it is awkward to talk about it. So, we'll hang in there together....
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It's just not something anyone can understand until thier body is taken over by what I think are the most unexplainable and indescribable symptoms sometimes. Thanks for commenting! It is nice to know we are in it together.
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Your post is so true~ I have written similar comments over the years - almost the same things.
I have had IBS since 1983 - and I have heard it all - part of the time I would 'grin and take it" and another part of the time I would miss out on so much of life. My IBS started just after I had my first child, and no one understood the pain I was in, and I was considered an inconvenience when I made everyone late, or had to cancel.
Sometimes I lied about my condition; other times I told people, and like you, it was dismissed as nothing serious - and of course, it isnt "serious" like cancer where you can die from it, but my gastro once told me he could treat or at least reduce his cancer patients' pain better than his IBS patients pain.
Part of us feels guilty for having a condition that isnt serious, but at the same time feeling just as ill - and because IBS isnt classed as fatal, we do not get the understanding and compassion another person would with a different illness - and while we understand that, it doesnt make our suffering any easier - it just makes it worse, because we dont get that understanding.
Over the years, I have written similar articles about this very thing - putting on the brave face just adds to the stress of the condition - keeping yourself rigid and hidden in pain - believe me, I know, I have been there.
And I have heard all the comments too - you just have IBS to get attention; you should eat this or that (I no longer am on any IBS diet), you are bringing it on yourself, and more. But at one point, it was just too tiring to keep up the facade, so I began telling people, I didnt care about the embarrassment, and I just wanted to let people know why I couldnt keep up, etc. If they did not understand, or they were not compassionate, it was their problem - but I did discover something out of sharing - many times the person I was telling either knew someone who had IBS - or they had it! (Not so much people close to me, but others.)
And to add to the humiliation - all the movies that make a joke out of IBS - yes, sometimes I will giggle along with everyone else, but a part of me twinges in complete understanding, while everyone is laughing... (think, Sandra Bullock being carried off by Hugh Grant to the van in the traffic jam after she eats Mexican in Two Weeks Notice, Dumb and Dumber, Ben Stiller having IBS in that movie with Jennifer Aniston - forgot the name of the movie -oh yeah, Along Came Polly - everyone laughs at bathroom trouble - especially when it only happens 'now and then' - they cant imagine living with it on a daily basis.
If you every want to explain IBS to people who just dont get it, there is a great recording available that does just that - takes the burden off of you, and I have even heard that with one fellow who could not make a family wedding far away, had the whole family mad at him, so he gave them copies of the recording and every single family member apologized for giving him grief.
Dont worry - you are not alone... sometimes it is good to vent!!
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My Journey and Success with the IBS Audio Program Hypnotherapy Program: www.helpforibs.com/messageboards/ubbthreads/showflat.php?Cat=&Board=hypnotherapy&Number=224850
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it's so frustrating to read your message or anyone else who says that they are no longer on any diet and hence I assume are eating normally.
I can wholly relate to anger, frustration and shame stemming from our condition, and it is true that no matter what we do, we'll never lead a normal life. but I too used to dismiss that diet played a role. but then i stuck with it and found that it makes a world of difference. I am convinced that I have mild depression and OCD and I have insomnia. I wouldn't deny that my personality and the fact that I'm neurotic explains why I have IBS. But I do believe that one must look at what's happening in Libya/Ivory Coast/ someone who has cancer and is going to die within 6 months and put things into perspective. I know that doesn't really help when one is doubled up in pain and doesn't care whether dies now or not... and it's easy for me to now speak because if I eat right, I don't have D or C or pain, (only bloating and the frustration and the shame). but please once again try dieting but the following (really limited but incredibly helpful) one. it may just work for you too.
'Heather's rules are very (too) permissive for a lot of sufferers, perhaps you'd like to combine its essence, ie no alcohol/caffeine, no dairy, fat content of meals restricted to 20-25 per cent of calories per meal, IF very limited and only with SF AND AND AND AND the FODMAP approach simultaneously, for which pls see Syl's signature.
I am following this diet, Syl is too, his is in fact even more limited. it's true that you can't lead a normal life that you can't really go and feast at dinner parties and you practically can't eat out, but with a diet like that your symptoms too may wholly improve in the long term or at least be drastically reduced. '
also I recently analysed my diet and now am taking B vitamins, zinc, iron and calcium-vitD supplements. My general stress and madness symptoms as it were, have improved dramatically.
--------------------
Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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Quote: "it's so frustrating to read your message or anyone else who says that they are no longer on any diet and hence I assume are eating normally."
Yes, I am eating normally, because I dont need a specific diet as my IBS has been addressed after using the IBS Audio Program back in 2000. In MY case, (and in the case of many others who have used this program) it was not about the specific foods or a restricting diet. Some people are tremendously helped by various IBS and similar diets, as you have been, others, via other methods. IBS is not a one-treatment-suits-all. I am happy for you and Syl that you have found your way to feeling better - some folks will try what you suggest, others will not, it is great you put the info out there, but I believe the writer of this thread was not asking for solutions, but for commiserating...
We all have to find our own way, and it is great to share what works for us, and we are glad you have been dramatically helped - I searched for my way since 1983, found it in 2000, so I understand wanting to share it, and I guess I just did so now as well, but I wanted to clarify your thoughts on my diet comments. I CAN eat out at dinner parties now, and lead a normal life without following a restrictive diet - so this is one way - and there is hope of another option for those who do not respond to diets and food restrictions and modifications. Again - everyone has to find their own way.
Be well.
OK - sorry for the topic detour...
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My Journey and Success with the IBS Audio Program Hypnotherapy Program: www.helpforibs.com/messageboards/ubbthreads/showflat.php?Cat=&Board=hypnotherapy&Number=224850
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Hi Marilyn. Wow, do I understand what you are saying. I used to dissect every morsel I put in my mouth, and guess what...I still suffered. I could not tell you what food I ate Monday that caused grief on Thursday.
So, at one point, I thought what the heck, enough is enough. Diet control is not working, and I have always had a healthy diet. So, I decided to move in a different direction. Along with meditation and the hypnosis cds, I can honestly say, I no longer suffer. I eat a vegetarian diet, moving towards a vegan diet, and have never felt better in my life.
It took a good amount of time for me to get to this point. It sure wasn't overnight. But, I am glad I put in the time and effort, and I am equally glad that I never used any drugs, except the occasional Immodium.
To the poster who initially started this thread, let me say, I do understand. When you are feeling bad you sure don't need lectures or pep talks or more diet information, (when you have tried everything under the sun besides starvation). All you really want is someone to say to you, "I understand how you feel." Period, end of story.
And let me add I too CAN eat out and eat at friend's. etc., with no problems whatsoever.
Thanks for being here, Marilyn! You bring hope and positivity to everyone, and allow that not every path is for every person.
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Thanks for commenting Marilyn, and I appreciate that you made the cancer comment, because I often say AND WITH EVERY OUNCE OF DUE RESPECT to anyone who has battled cancer, that I wish I had a disease that at least had a name, and that people just respected. I have seen several friends be diagnosed, treated, and cured of cancer in the years I have suffered. And in those particular cases (AGAIN ALL RESPECT TO THOSE WHO SUFFER AT CANCER'S HANDS)- none of them suffered the quality of life devastation that I have. I would've switched places in a heartbeat. honestly, even death doesn't always seem like the worst option. But slow torture every day? Thanks again for sharing- means a lot!
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I was just looking for commiserating... and it made me feel better!!
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oh ok, sorry I completely misunderstood, I thought what you described in your post was referring to how you are now.
so from what I understand hypno has worked for you then and now you can function like a normal human being. that is delightful and you are actually a lot better off than I am, as the diet managed thing does have hundreds of downsides whereas you are basically cured now.
good for you and as for taroh73, who seems to be suffering NOW, I can sympathise and commiserate and say 'you are not alone' but I used to think exactly like this and dismissed the dieting, but especially since the FODMAP approach is a relatively new one I think, I doubt a lot of people have followed it for a length of time for them to be able to say that no special diet for them could work.
it's extremely limited, it's not like Heather's diet if you combine the two and taroh73 or you back in the day may not have tried it for something like 2 months so how do you know that no diet could ever work for some people with IBS? it is difficult to follow, you have to cook for yourself, and following it for one week may not bring immediate relief, but for those for whom meditation, hypnosis or anything else does not work like taroh73 appears to be, i still think it's definitely worth a shot as it really may just work in the long term and all that scourge that goes with IBS may just be magically alleviated...
but it's a good thing that you did the hypno and you are now fine and can eat normally, much better than having to stick with a diet that has 25 ingredients so really happy for you.
--------------------
Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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taroh73
#364166 - 04/07/11 03:18 PM
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Gerikat
Reged: 06/21/09
Posts: 1285
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I think most in the thread understood what you needed. I do hope that you feel better soon. All you needed was a little TLC.
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Not to belabor the point.. but it occurred to me that I am such an easy to please person because when you live this way, the smallest things mean so much. yet, we appear to be difficult impossible people becasue we have to say "no" and "i can't" so often.
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I felt the exact same way as taroh73 and dismissed the role diet played for years, saying how for me it makes no difference. but there is a scientific background to all this and the EFI diet is quite lenient from this regard, hence of course it doesn't work for all sufferers. I doubt taroh73 ever tried the diet I recommended and I only wanted to offer pragmatic help because I more than anyone else CAN sympathise and do understand believe it or not, I was in exactly the same boat, felt exactly the same way, even about the way she/he talked about cancer. I felt the same sense of gratitude when people sympathised, but that did nothing to help in a practical way. what did help is that Syl got me to try the very restricted diet I advocated. and lo and behold that did help. syl was never as vehement as I am now, I don't even know why I am doing this when taroh73 and others have repeatedly thrown it in my face that practical guide is not needed COS DIET DOES NOT WORK FOR EVERYONE. I doubt she/he ever tried the one I suggested and fine, I was only trying to help and provide real relief, not just sympathy. if taroh73 you change your mind, follow my guidelines and for a specific diet feel free to email me on safo1611@gmail.com otherwise good luck and sincerely hope you feel better soon. I went through the same and felt the same I know how you feel and I know that it's godawful.
--------------------
Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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CellSalts -
We do thank you for your kind offer to help others you see who are suffering - however - once again -
THIS thread was intentioned for commiserating, not advice, as the author has indicated... we totally understand your helpfulness, it is appreciated, understood and we all have got the message, and just as you had the option to follow through or not to follow through when people suggested this to you, so too will the readers.
You may be asked to remove your personal email from your post as it will be subject to spam for your own privacy and protection - you can provide your email more safely in your profile instead.
Thank you kindly! All the best to you. (((HUGS)))
--------------------
My Journey and Success with the IBS Audio Program Hypnotherapy Program: www.helpforibs.com/messageboards/ubbthreads/showflat.php?Cat=&Board=hypnotherapy&Number=224850
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#364178 - 04/08/11 10:25 AM
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Syl
Reged: 03/13/05
Posts: 5499
Loc: SK, CANADA
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It is quite unlikely she will be asked to remove her email address from her post especially since it is a gmail account and new email address are easy to create if the current one is spammed. Furthermore, gmail has excellent spam detection. Also, it easy for spammers to get one's email address from one's profile too.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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You say you eat only about 25 food items. Can you please list them and when/how you eat them.
As far as I recall Syl did say he was feeling somewhat better from this combo but never said specifically what symptoms were better. I know Syl suffers from pain (he has often said so) and now you don't?
I suffer from terrible bloating and believe that is what causes a great deal of my pain but you suffer from bloating with no pain now? Please explain.
Cheers
--------------------
ibs-d (pseudo)with pain and bloating
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The combo has made the world of difference to pain, stool frequency and consistency, bloating and distention I experience. The EFI diet alone did cover all of the triggers which are in the FODMAP approach. However, the FODMAP approach does not address the issues of related to IF as a serious trigger. Combining the two has turn out to be quite effective. It isn't a cure but it is an excellent management approach. If you want to read more about the FODMAP approach check the links in my signature.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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I have read the stuff under your signature. I follow EFI and don't eat fructose, soy and other beans or crucerifous veggies and eat only 1 or 2 slices of bread a day. Am I already following FODMAPS?
I still take psyllium. I have tried other fibers including acacia with poor results. I still go at least 3 or 4 (someimes more) times in the early AM until I empty out. Then the bloating starts. I release some of the gas beginning just before supper (the tip of the iceberg).
This enables me to sleep off and on (1 to 2 hours at a time) through the night. I release a lot more gas during this time until defecation begins and the cycle starts over again.
Cheers.
--------------------
ibs-d (pseudo)with pain and bloating
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Sounds like you are partially following the FODMAP approach. For example, some people have to remove all wheat products because they are more sensitive to fructans than I am.
You might use 100% soluble fiber supplement. Pysllium is 2/3 soluble fiber and 1/3 insoluble fiber. Insoluble fiber is a strong GI trigger. Presumably you have removed most foods with high amounts of IF and only eat peeled and well cooked veggies, etc.
--------------------
STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Marilyn
#364184 - 04/08/11 12:35 PM
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Gerikat
Reged: 06/21/09
Posts: 1285
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Nice post Marilyn, as always!
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Here is a one page summary of Fodmaps. I got it from ibsgroup.org:
http://www.keepandshare.com/doc/2733894/fodmaps-374k?da=y
Cheers.
--------------------
ibs-d (pseudo)with pain and bloating
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Unfortunately, the page you gave is not accessible unless you join.
The links in my signature are to authorative sources not second hand sources.
Cheers
--------------------
STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Wow, I totally feel you on this. The big difference is that my symptoms are mild, but I still don't ever get invited out for dinner or any kind of social event because people just assume I can't eat anything and they know I don't drink due to my IBS. I am still a relitively young man and definitely feel like my "social life" so to speak, is slipping away.
For new people I don't say I have IBS, but I find everyone wants to know why I'm not drinking for example and if I don't say somethign they may assume I'm a recovering acoholic or something and I'd rather they know I have IBS than think that. For dairy I get away with just saying I'm intolerant to it without going into detail. So many people choose to not eat red meat that one isn't a problem.
Also, on the few times I am out with people who know about my IBS, all they can talk to me about is "Can you eat that?" "Is this ok for you?" "Wow, I just couldn't LIVE if I couldn't eat cheese" etc. etc. I don't bring it up but it's the favorite topic of conversation.
I often envy the folks who developed their IBS when they were older and already had a spouse, family, and friends, and so were already situated in life. I don't even want to consider dating...what a horrible nightmare that would be. Where I'm from the consensus if you don't go out drinking you're either boring, a big stick in the mud, or something wrong with you. Who would want to be with someone like that?
Especially worst are the people who egg me on by saying "I think you really can eat dairy. Have you tried it? Why don't you try it. Come on, it can't be that bad." God how frustrating that is.
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