I'm new to IBS and miserable
#320386 - 12/10/07 05:48 PM
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steffiejoy
Reged: 11/26/07
Posts: 247
Loc: Cleveland, Ohio
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Hey everyone, I'm new to this website and new to IBS. I'm 25 and diagnosed about a month ago. So far I'm miserable almost everyday. I've been reading all your posts and I bought the First Year with IBS book from this website and the diet seems to help. So far though my doctor has only given me Fibercon. I take that everyday but it sometimes just doesnt matter. Right now I am just very frustrated and depressed. I eat the same thing every day... grilled chicken and white rice. Every time I stray slightly from that diet, I am miserable. I just feel like my fun times are over at age 25. Did any of you feel this way when you were first diagnosed? I also have been through a lot this year. I had open heart surgery in April and I truely haven't felt well in over a year. I dont know how this IBS thing started for me, but what I thought was just lactose intolerance, I think was truely IBS all along. I'm also a first grade teacher and my stress and anxiety level is through the roof. I just cant seem to calm down about all this. Do I sound ridiculous? Cause I kindof feel ridiculous. I dont know if this was the right message board to post this on or not, but I thought I would get it out there. Thanks for listening!
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Howdy and welcome. I can sympathize with you about grilled chicken and white rice … that's all I can eat when I am not stable. But when I start to feel better I can start adding different things and make grilled chicken and white rice a delicious meal. Many good recipes are on this site. Take a look.
My wife had open heart surgery years ago and managed to regain all her strength and vitality. It just takes some time to feel better. Hang in there. The fun times are never over … there is always something that we can smile about.
And you don't sound ridiculous to me.
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 Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”. Mary Anne Radmacher
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Hi there, you are not alone – and you don't sound ridiculous! I am 29 years old, and was diagnosed with IBS when I was 17. Though I have specific memories of symptoms as early as 14, if not even before that. Unfortunately, I lived in a small town with limited resources and very old-fashioned doctors. I was given antispasmotic meds that made me feel like an alien in my own body (I discontinued them after a couple of months), and was told to simply eat bland foods and try to increase my fiber. Nothing more specific than that – and I never really followed the advice anyway. For the next 8-9 years, I went through periods of flare-ups and even complete remission – I could sometimes go up to a year or more with no symptoms. But starting about 3-4 years ago, the periods of remission starting becoming shorter and shorter. I've had times when I've been terrified to leave home. So I'm essentially in the same boat as you – a young woman in her 20's feeling like her life is over before it ever really began.
I started lurking on this website about 2-3 years ago, but never posted or tried the diet until very recently (no milk, cheese, steak, or egg yolks – are you KIDDING me???). I was invited to a Halloween party on October 26th and, after getting all dressed up for it, ended up spending the entire night stuck on my toilet without ever making it to the party. It was sort of the straw that broke the camel's back, and I finally ordered Heather's book – Eating for IBS. It hasn't been easy, and the first week I was cheating quite a bit, but I finally realized that I'm not doing myself any favours by not giving the diet at least a fair chance. I have been feeling a little better, but no where near 100% yet (I'm still going through alternating cycles of C and D – just had some D Saturday morning  ), but the folks on the board say it may take weeks or even months to stabilize. Taking Acacia is also supposed to help – Fibercon, if I'm not mistaken, contains some insoluble fiber, so you might do better switching to Acacia or Benefiber, which is soluble fiber only. I've been taking the Acacia for over a year but only started increasing my dose last month. I am up to 7 g per day now.
Anyway just wanted to welcome you to the board and let you know you are not alone!
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IBS-A since age 12, and fructose sensitive; with the exception of my pregnancy, have been following Heather's diet since Nov. 19, 2007.
Taking 12g of Acacia per day. Relatively stable since March 2008!
Edited by Erilyn (12/11/07 12:03 PM)
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I am so sorry you are feeling so down. Welcome to this board. I have found it to be a wealth of knowledge and through carefully following Heather's diet and taking her Tummy Fiber I am now able to enjoy limited range in my diet--at least I don't eat chicken and white rice EVERY day like I did for about a month. I am over twice your age but even still I would hate to think that all my fun was over because of my stupid tummy problems. IBS is so different for each one of us. One thing for sure--try Acacia (order from Heather) for your fiber. I was taking Metamucil and Fibercon when I stumbled onto this site and Acacia plus the diet (avoid triggers) helped me sooooo much. Sorry to hear about your heart surgery. That is a MAJOR stresser for the body. Give youself time to heal and come back to full strength by taking it as easy as you can. I taught school for a few years before grad school and I know how stressful it can be. Hang in there!!!
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IBS-D, Gas & Bloating
Barbara50
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I can completely sympathize with you. I am 25 and have been dealing with IBS for just over a year now. I felt like all my fun was over, I couldn't go out to eat with my friends or go drinking or even date. I agree with everyone else on here in that the first step is the acacia fiber! I was using Citrucel per my Dr and it made me feel awful, but when I switched to the acacia I started noticing the difference. Gradually you can try other foods and now I can eat a variety and can even go out to eat if I am careful. Good luck!!
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Melinda
IBS-A but leans toward C mostly
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Thank you everyone for your advice. This past weekend just seemed rough. I had a bridal shower and my nieces birthday in the same weekend. So I stared at cake, icecream and pizza and didnt eat it. I just stuck to the bread baskets. And like a few of you said its just hard when I go out with my friends and I order a water while they all order a long island! Not that I ever drank alot but every now and then I could use one drink! I guess I just have to get used to all this and kinda get over it and do the best I can to feel good. And yeah going out to dinner is almost impossible. Then I feel bad cause when I am running to the bathroom at a restaurant all I want to do is go home and then my husband has to go home too. But he has been so supportive of all Ive been through this year, but I still feel bad. I dont know, I went back to the doctor yesterday and he gave me medicine called Bentyl. Ever heard of it? He said to take it as needed. He was also concerned that I might have Celiac Sprue because I am losing a lot of weight. But I dont think I have that, anyone ever heard of it? All I really eat is bread and rice and Sprue is a gluten issue! My doctor also told me that I need to lower my stress level. Well as any of you teachers out there no, stress comes with the job! Also I work in a rough neighborhood in Cleveland, so its even more stressful. Anyways, thank you all very much for your words of support and help! I will try that acacia that you recommended. It really seems like fibercon doesnt do a whole lot for me. Its good to know that theres this support group out there because it seems like some people dont have any clue what youre talking about!
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Welcome Steffie! We are happy to have you here with us and to be of support in any way we can during this challenging time. As you can see from the responses you've received we all sympathize with the wide range of emotions you are experiencing. And as you can see, many of us have been in the place of only being able to tolerate rice and chicken.
I remember during that time for me I had lost 15 lbs in one month! I was scared and found no real support till I found this website which provided some real eating guidelines to follow. Keeping a journal of everything I ate along with my physical reactions to the food choices was KEY in helping me to learn my own unique set of body operating instructions. For so many the acacia/metamucil etc. thing works, for me it doesn't. What's important is that you learn about what works for you and documenting it helps you to discover what that is.
Regarding the deep emotions one experiences... I can't express myself strongly enough here but please, please do your very best to not let your IBS diminish the light you bring to the world. Don't allow it to take your true power away AND at the same time allow room for your sadness, frustration, anxiety, etc.
I found I made great peace with my IBS condition when I began visiting a meditation center and hearing talks about how powerful my thoughts were. You are not your less than positive thoughts you are something different. You are whole, you are not broken!
I will hold healing intentions for you Steffie as you find your way to peacefully be with your IBS.
Warmly,
Alicia
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Thank you Alicia for those kind words! I dont get frustrated easily. But I guess on top of the open heart surgery and other stressors in my life, IBS was like the straw that broke the camels back. I just got to a point where I said ok, thats it I'm done now. I am sure all of you have been through it where you just go through a huge amount of time when you just feel aweful all the time. I can remember having IBS symptoms when I was younger but I self-diagnosed myself as being lactose intolerant. Then things just got way worse and it seemed that no matter what I ate I had D and camps. It seems like things get better then I have an attack. Argh, oh well. I try to make the best of it I just feel depressed a lot of the times. Plus my anxiety is ridiculous! I've never been anxious like this before. But now I am nervous all the time that I am going to get sick and I'm nervous being around lots of people or out in public. Anxiety and depression runs in my family so I've always tried to keep a close watch on it. But it seems like depression and anxiety kindof come with IBS. Is that true? It seems like thats the case for other people I have talked to. Also I was wondering if anyone else had problems with artificial sugar and flavoring? It seems I cant eat ketchup anymore! I tried that with my plain chicken the other night and that didnt work out so well. Oh well, the fibercon I think does help, but I am not sure if its actually the fibercon or the fact that I only eat chicken and white rice. Every once and I while I get daring and have a plain baked potato!  Anyways thank you so much for your words of advice and support. My doctor just prescribed me Bentyl along with Fibercon. If anyone knows anything about Bentyl please let me know how youve done with it. Because it seems like if theres a side effect, I will get it. Thanks again!! 
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Stef,
I have seen post on Bentyl on here. Personally I Havent taken it. But do a search and I am sure you will find info. I hope you feel better soon. Hugs
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IBS-C gas, bloating and acid reflux
Babies is the plan for 2008!!Hope this IBS cooperates.
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Thanks for the Bentyl info. I was just wondering if it helped anyone.
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Quote:
For so many the acacia/metamucil etc. thing works, for me it doesn't.
Me neither. Do you take any supplements or flaxmeal? I fear that since fiber supplements don't help me (just bloat and cause pain and gas) that I would never be able to be anywhere near as successful with managing IBS as others who have been helped by it.
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IBS-C with pain and bloat
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Metamucil contains some IF....but citrucel, fibercon, equalactin, etc, all should be 100% soluble fiber.
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IBS-C with pain and bloat
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Metamucil contains 100% SF in the form of psyllium husk. However, Heather reports that "one of the most common soluble fiber supplements is psyllium (sold as Metamucil, Konsyl, Fibrogel, or as bulk husks), and psyllium can actually worsen (or even cause) bloating in many people."
Not all SF are good for IBS suffers
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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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Good morning!
Jordy the fiber supplements/flax etc. never did anything but cause my tummy to rumble even more so, no, I don't take any type of supplements, unfortunately I cannot tolerate vitamin supplements at all either. What I do do (that looks funny huh?), is eat extremely healthfully and have learned from keeping a journal and trial and error (staying close to home when I do try new things) which foods are safe "for me" not "everyone else". I've learned lots about nutrition along the way so that I'm doing the best I possibly can to give my body what it needs while working with my IBS.
So that being said, I encourage you to keep finding what works best for "Jordy". Stay as true to a healthy diet excluding those trigger foods for you. Best of luck to you on your exploration!
Best,
Alicia 
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Hello Steffie, Happy Thursday!
My problems also started as "lactose intolerance" and stayed that way for a couple of years and then all went downhill in a month's time. My month of eating nothing but chicken, flour tortillas, rice, baked potatoes and eggs was one I'll never forget but would like too! That month sent me spiraling into anxiety and depression and that's what brought me to the local meditation center so that I could "be" with all the scary thoughts, loneliness, sadness. And as I began to learn how to eat for me, and got the support of how to work with my emotions and thoughts I became much stronger. In fact, that scary experience coupled with dealing with my IBS condition brought me to the work I do now...helping others move forward in their life when they feel like they haven't a choice. In that sense my IBS was a gift to me...but hey, I'm human. It's a challenging condition to be with.
By the way, during the first few bad months ketchup didn't work for me either. Then only organic ketchup did, and now I'm back to eating the regular stuff. Oh geez, gotta hit it the road (just noticed what time it was).
One thing's for sure this experience will move you into a entirely new dimension of having a stronger relationship with your "self". Keep breathing my friend, and do your best to hold onto those positive thoughts!
With love,
Alicia
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The reason I thought it was part insoluble is because when you look at the nutritional info web page it says it contains 3 grams total fiber, 2 of which are Soluble. I figured the other one was insoluble. 
Quote:
Not all SF are good for IBS suffers
Believe me, I know this! I think I have tried every one available. Well, the most common ones.
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IBS-C with pain and bloat
Edited by Jordy (12/13/07 10:20 AM)
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Thank you....it's been a long exploration with no answers so far. You have a great peace with this. That's really shocking for me to see! Good for you.
My fear is that since you are a D, then maybe SFS isn't as crucial? I don't know...just talking out loud now!
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IBS-C with pain and bloat
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That is very interesting. The ingredients they list are Psyllium Husk, Gelatin, Polysorbate 80, Caramel Color, Red 40 Lake, Blue 1 Lake, Yellow 6 Lake and Citric Sucrose. The only fiber containing ingredient is the psyllium.
I gave the toll free number a call. In fact this product contains 2.4 grams of SF and the remaining 0.6 grams is IF. So you are right - it does contain some IF.
The interesting thing about calling the hotline was they tried to encourage me to try Fibersure made from inulin. Wow - not a good SF for IBSers. AND the Metamucil wafers contain 5 grams of fat and well as fructose. Strange what products are being sold to help with IBS
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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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Stef,
I know how hard it is to try to be sociable <out to dinner and stuff> with insides that are not happy. I would stick with the baked potato, if you can tolerate it, and grilled chicken. I went to Longhorn's the other night and had their salsa chicken, minus the salsa <I told them to put it on the side> and it was excellent, and didn't talk back to me. Or in other places <italian comes to mind> get the pasta with the sauce on the side. I can eat or tolerate just about enough sauce to give it a flavor <maybe a table spoon with the pasta>. But sometimes I don't even bother with that much. Mostly I try to keep it plain if I can, and chinese is the best <steamed rice and chicken and I pick through the veggies> Nothing else added. But do keep a diary. It is very enlightening. I have only for a few days, but I have already figured out some of what makes me "run".
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down in the sunny and very dry south.
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Thank you Alicia. Thats awesome that you have used this negative thing to help others. Hopefully I will get to that point. I am going to Arizona for Christmas. Being a teacher I have a nice two week break and my husband has time off also. My in-laws live in Arizona but already I am starting to panic about traveling and how to deal with this IBS in front of all of my inlaws. They are very understanding people, but I'm also just thinking, what if I have to run to the bathroom in the airplane! I am thinking that my best bet is to just not eat before getting on the plane and while I am on the plane. That way I can hopefully avoid those bad moments. Although I have found that sometimes when I dont eat for a long time, then sit down to eat something no matter what it is I am in the bathroom. Kindof seems like a no win situation. Oh well. I try to control my anxiety and depression as best as I can. But the anxiety seems out of my control sometimes. I also feel silly talking about this because its like... what am I so nervous about? I mean its hard to even answer that. I guess I just have anxiety about getting sick, feeling bad in the wrong place. Its like as soon as I get that feeling in my stomach and the cramping starts there goes my anxiety which I am sure makes it worse. My doctor also told me I need to get rid of some stress in my life. Well easy for him to say huh?! A lot of people I have read swear by yoga, so maybe I will try that. Wow, its after 11 pm here. I better get to bed. Thanks again for your encouragement. This is really starting to help me and make me see how many other people out there are like me. TGIF!!
Stefanie
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Hi Stefanie,
Before I fly I treat to eat the "safest" I can, however, there were times when my anxiety about "what if?" kicked in and even the safest meal didn't stand a chance. This was usually before I even entered the airplane. Sometimes I would take Immodium an hour before the flight to give me a boost of self-confidence AND I ALWAYS bring food on the plane that was "safe" for me instead of eating the airline food. Usually it was a plain turkey sandwich, not too exciting, but hey it's sustenance! Bananas worked well too.
As far as what you get so nervous about....only you know. For me it was all the "what if's?" that freaked me out and each "what if" would build on another and before I knew it I would spiral into high anxiety over. I have been a student of meditation for 5 years now and it helps a great deal, however, I wouldn't be normal if those "what if's" still didn't pop in my head. Perhaps a new perspective to try is to turnaround your what if's to be positive ones instead of negative.... such as.... What if I have a successful flight without anxiety? What if my stomach is feeling the best it ever has? What if I'm at total peace on this flight? What if I could fully accept my IBS and make peace with it?
Sometimes just turning around our perspectives can open up and free us from our suffering. Give it a try, it beats the alternative!
Have a lovely holiday in Arizona and know that I'm cheering you on from the sidelines!
Take good care,
Alicia
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Thanks Alicia! I just got my bloodwork results back from my GI doctor and it was positive for Celiac Sprue disease. So now I have to get that thing that they put down your throat to look at your stomach and then they do a biopsy I guess. I dont know this is all new to me. But I just wonder, the only things I eat are bread! I mean I base my diet right now around rice and white bread. So it makes me wonder about Celiac. Do you know anything about that? Also if I have to do a gluten free diet, that sounds kind of interesting. I am also lactose intolerant. I was wondering if it was possible to have both IBS and Celiac?! Cause I swear I have triggers that only make sense for IBS. Its all very confusing to me. But I am not getting that throat camera thing until after the holidays. So I asked my doctors office what do I do when I am in Arizona?! I was basically just told to be very careful. Its like ok... so I might have Celiac and I was positive I had IBS but now maybe I only have Celiac or maybe both?! And I am lactose intolerant, so what in the world do I eat?! Ha, oh well. It will all come together eventually right?! My aunt (my moms sister) had Crohns disease. And she had so many complications. But thats the only real genetic tummy disorder in my family and I thought celiac had to come from genes. I did, however read that something like surgery or something that majorly upset your body could cause Celiac to start up. After surgery I also became anemic and that hasnt gone away. And I was put on Coumidin which caused a Vitamin K (I think its K) deficency. I guess thats all related to Celiac. Who knows. I guess for now deal until I get the other test done. I am just wondering what on earth do I eat?! Thanks again Alicia!
Stefanie
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Stefanie,
Sorry to hear that you have something else new to throw into the mix of what you are sorting out. I tested negative for Celiac disease so admittedly I don't know much about it. Much will be revealed to you once you get the green light from your doctor to begin the gluten free diet. Then you will be able to learn from serious journaling (which by the way I would start now if you haven't already) if your symptoms improve or not. I wish I could wave a magic wand and make this all better for you but alas, it is what it is for now.
Please continue to keep in close contact with all your physicians so they are all on the same page with you. AND know that you are your best advocate! Ask questions, demand answers, and be sure you take time out to be still and silent to give your mind a rest. Paint your toenails red, take a long bubble bath. This is an especially important time for you to bring lightness to your heart as much as possible.
Also...you may want to start a new post on this website asking for advice about Celiac disease. You may be able to connect with others who have been through this beginning stage and can be a wealth of support for you.
Keep me posted...and feel free to email me (see profile) because I don't often get a chance to visit here as much as I wish I could.
Holding you with love from California,
Alicia
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