When is time to give up?- long, but please read
#145480 - 02/01/05 07:29 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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When is it time to just stop trying to find another reason for the pain and gas and bloating and constipation and accept the fact that this is IBS and I will need to live with it the best I can? But I am NOT finding relief from this diet, so it makes me wonder if it is something else in addition.
I've had small bowel series follow through, colonoscopy, endoscopy, Xrays, etc. They have come back normal. But I am sure there are many tests I haven't had that may just reveal the problem.
But whenever I read a post such as Michelle's who went to UNC and could have pelvic floor dyssnergia, or I read DanaNoels post on how her hormones were out of wack and she has an insulin sensitivity and a neuro GI diagnosed her with a new test and gave her a new diet which has brought her much relief (low glycemic carbs and low carbs in general, opposite of the IBS diet), I want to run to my GI doc and ask, what about this! Could this be my problem? I know he thinks I am a nut case that is addicted to the internet and researching anything that has to do with my GI distress. But how can I give up trying to find an answer when my whole life has been stolen from my painful symptoms?
And how many doctors do you go to for a second opinion? And how many other possibilities are out there? I could be finding a "new possibility" every week.
I can't give up trying to find some relief, but the stress of looking and researching and trying to get my doctor to listen and just consider all the possibilities I bring to him is also taken over my life.
Do others of you, especially the ones who haven't been helped by Heather's diet, do you continue to research and think every story your read may be the cause of your distress? How can I let go of this obsession to use all my free time reading books, surfing the internet, reading posts in a desparate attempt to find relief?
I am driving myself insane, but feel guilty if I surrender to live the rest of my life in pain.
Please share your stories and thoughts with me. I don't know what to do and I long for some peace in my life so that my days are not lost to this hiddeous pain and symptoms.
Please give me some help guys. I need your words of wisdom, please. I am just at a loss. Am I just obsessed?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I read and read and read about IBS, chrone's, UC all sorts of disorders. The problem with IBS is that so many of the symptoms tie in with other problems. I really wish you lived closer so we could get together and have a cup of (decaf) tea. You already know that I had no relief within a month of Heather's diet and gave up on it (at least for now) on my doctors advice. There's no point going for millions of second opinions. Been there done that and they all say the same thing in the end but some are definately more helpful than others. My doc told me the problem with IBS is that medically nothing is wrong so all they can really do is treat the symptoms not a disorder or disease. So it's mostly trial and error.
I'm not much help. I have for the moment found a little bit of relief. Thanks to my doctor who has prescribed one colese a day I am feeling a little better. Not great. I still have a lot of pain which I take buscopan for if the colese isn't enough but at least it's helped the d a little (not much help for you I'm sorry I know you're a c)but maybe you just haven't found what helps you yet.
Big hugs. It's hard but for now I try to stay off the net looking for what's wrong with me because the stress it causes makes me worse. I'm sticking with chatting to all you guys in the living room and helping out here where I can but otherwise no surfing. For now it's in my specialists hands. I have to have faith that he will find out what's wrong or at least be able to help (he's sympathetic and nice which is also very helpful).
Anyway, sorry to have rambled. Hope at least some of this is of some help or comfort.
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Amy
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Hi! My doctor says there is nothing physically wrong with me, either. He also diagnosed me as having a lazy colon, which means (from my research) that my colon stays constricted more often than it should, causing the "stuff" to harden and making me constipated. I don't know if that is the same thing as IBS, and he didn't really offer any other suggestions. However, he is sending me to a thyroid doctor, because he found (in the course of bloodwork) that my thyroid is a little low. My aunt (a nurse) says this could cause any number of problems, including constipation. Has your doctor run a full blood work-up on you for celiac disease or thyroid problems?
I do know that the diet doesn't work for everyone...some parts work for me, and some don't. I think searching for answers is a personal thing...you have to do it as long as you feel you have to, and as long as you have support. If you can't "cure" yourself, maybe you need to start investigating pain-management techniques...yoga, hypnosis, accupunture, etc... It's not a "cure," but it will help you live better and be happier, I think. Good luck, and let us know how you are doing.
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Beth-
My advice to you is to listen to your body. You are the only one that can truly know what is going on. So if you still feel there is something wrong then keep pursuing it until you find someone to listen to you. I really wish that I could help you more but I have found success with this and am feeling really good. I feel really bad reading some of your posts and not responding but I am not sure what to say. Everything I have suggested I know that you have tried and hasn't worked. All I can suggest is what I said before listen to your body and keep seeking medical help if you think it is necessary. Good luck Beth and I am praying for you hon!
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Beth
#145625 - 02/02/05 07:29 AM
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bellshel32
Reged: 10/28/04
Posts: 371
Loc: Kansas, USA
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I know you're desperate for answers. I'd be the same way if I didn't find relief with Miralax. I think I feel better on Heather's diet, but it hasn't been a cure-all for me.
I can't remember-- have you tried Miralax? If not, I'd call your doctor & insist he/she let you try this prescription. You know, I hate having to take medication every day, but it's worth it to get rid of the horrible C & discomfort. Heck, I take daily medication to prevent migraines & depression, so who cares if I have to take something for my C, too.
I've done the "search the internet for answers" game. It never really helped. This site has been the best thing I've found.
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Beth, like everyone else, I feel really bad that you're still suffering. I wish I could suggest something that might help, but I don't think I could possibly come up with anything that I haven't already said.
I don't remember if you've actually gotten a second opinion from another doctor or not. If you haven't, I think you should. It can't hurt, it might help, and I have very little respect for any doctor who treats his patients as if they're hypochondriacs. You know your body better than anyone else, and if you feel there might be something else going on - or, at the very least, that there are tests you haven't had that you SHOULD have - you have a right to have a doctor who LISTENS to you and runs the tests accordingly.
Are you taking your lexapro?
As far as managing your symptoms, I second what Sue said - if you've been looking out for a cure, stop. There is no cure. What you need to do is focus on pain- and symptom-management. A lot of people have had a lot of success with yoga and hypnosis - not even in terms of their symptoms disappearing, but just in learning to live happier and better.
I don't think I'm making any sense, but I'll use myself as an example. I am NOT IBS-stable. Not even close. The diet, etc, has NOT cured me or even been a complete management of my symptoms. BUT... between the diet, the lexapro, Imodium, and trying to be active every day (even if it's just stretching), I've learned to make the best of things, and I do feel *better*. Not perfect, but better. And when bad days happen, they still suck, but they don't completely flatten me physically and mentally like they used to - and that has made an ENORMOUS difference in my quality of life.
I think part of the problem is that we get so wrapped up in curing the symptoms that we don't even notice the baby steps. Remember a few days ago when you mentioned the prunes and lentils? Honey, personally, I would be pretty damn excited about that - you found something that works for you, and you did it on your own. Yeah, you still have to "tweak" it a little and see how much of which you need to be able to keep things moving but not swing you over to D, but still. It's a baby step, but it's a success. *I'm* proud of you - you ate something I wouldn't dare to eat in a million years! 
Which is another success... the fact that you're eating new things. Give yourself some credit, Beth! Not only are you struggling with IBS like the rest of us, but you're further restricted by having to eat GF - that's a lot to work with. And I remember from our emails where you were afraid to try ANYTHING new, so I don't know, I guess I see you as making progress... slow progress, yeah, but that's how I worked, too. Not all of us are instantly "cured" by this diet thing, especially when you've been as sick as you and I were.
Anyway, I'm rambling, and I don't even know if I have a point. One way or another, I still have faith in you that you will find your solutions and start to improve. Whether or not you actually do it, and how you get there, is totally up to you.
*hugs*
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I'm so sorry you are not finding relief. I am also C, and I have never applied Heather's diet in the strict sense, only the principles of the diet - starting off with some SFS, limiting fat, red meat and other knows trigger foods, trying to limit/manage stress. I began adding supplements one at a time over almost a year, because your body simply cannot handle an abrupt adjustment to lots of new stuff be it medicines or supplements.
Over the past year, I am much better. I am not "cured" because there is no such thing. However, if I stay with the Acacia (for me, I'm best at 2t before each meal) I later added a 2:1 cal/mag supplement...got a little better. And, as you know, only recently added probiotics and digestive enzymes.
Listen to your body. If you are truly sick with something other than IBS, keep looking. However, if your insides are clear, and it is IBS, the stress of trying so hard to resolve it WILL make you sicker. Been there, done that. Please don't give up. But please give yourself some breathing room. This mess takes time and lots of it. I know that isn't much help, but you can't lose hope. Hang in there!
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God is Faithful!
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I have IBS-D; I have followed the diet to a T!! Myself and my sister feel better and have lost lots of weigh, BUT it hasn't attempted to keeps us out of the bathroom. We have used all the advice and teas etc. that Heather suggests. The gas, 'D' and cramps are getting so wipe you out!! We did use Imodium and now are trying Pepto-Bismol, has anyone used it for 'D' with successs. I prefer to stay as natural as possible with what I take.
Thanks, Lynn
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Dear Beth, no. I do not think you are obsessive. I grow weary of the search for relief from pain,too. I have tried diets, herbs,imaginery, stress control, I even tried not eating. But every 6-8 weeks the pain becomes unbearable and the vomiting won't stop and my poor husband has to take me to the emergency room for a shot or two of demerol or morphine depending on who the doc is. I was diagnosed with IBS at the age of 16. I am now 57 and my pain is becoming increasingly worse. All my tests (and I have had them all) are negative. Although one time my test came back positive for pancreatitis but the doc decided I just get so sick with IBS that it changes my blood values. He also told me he and his colleagues agreed I had the worse case of IBS they had ever seen. At my worst I have spent 2 weeks in the hospital hooked up to an IV with 100mg of demerol being given every 4 hours and at my best, well, is there a best?? Right now every meal I eat, especially the first one, causes me severe pain, the upside is I have lost 11 pounds, which I can afford. And it's not just food,if I drink a glass of water on an empty stomach, this will send me running to the bathroom in agony. I had found a doc that allowed me to give myself the demerol injections because I am a registered nurse. This spared us the stress and expense of the ER trip and at $2,000.00 per visit we were grateful. But he is not really comfortable doing that so I don't know, probably back to the ER. Sorry, didn't mean to ramble, hang in there .There must be answers for us somewhere, we can't give up!!
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Augie- You sound sooo much like me- I do the exact same thing, and I am NOT JUST SAYING THAT! I went to two different GI doctors for diagnosis and here are the test I had done- HidaScan, Cat Scan, X-Ray, Upper GI, Lower GI, Small Bowel Series, Intra Vaginal Ultrasound, Abdominal ultrasound, Colonoscopy, flex sigmoidoscopy. And it is Irritable bowel. I have a very hard time accepting it- I can't tolerate antispasmoidics, the diet did nothing for me. I have cramps no matter what I EAT---- Naturally if I eat something silly they are much worse- BUT I DON'T. From the moment I wake up till I go to bed at night all I think about is the cramps. It has taken over my life. I know exactly what you mean because I do the same thing- read everyones posts looking for a cure.
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Melissa
Pain predominant w/occasional C.
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