will my IBS just keep getting worse?
#361738 - 10/28/10 05:38 PM
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renee21
Reged: 06/02/05
Posts: 486
Loc: Toronto, Ontario, Canada
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I've had IBS for around 13 years, and though I've developped better ways of managing my symptoms over the years, the symptoms themselves have gotten worse. It feels like the IBS has "spread" - I used to feel symptoms (cramping, gas) only in my lower right gut, at the ileocecal valve. Then it spread to the entire ascending colon. Then, last year, it spread to my entire colon. The whole length of it is just burning and tight. It feels like someone is giving my colon what we as kids used to call an Indian Arm Burn (pardon the cultural insensitivity of that term, but it's the best description of the feeling). People talking about using heat to ease cramping, but for me, that makes it worse - it's already burning and hot.
So I am scared. I am scared it's just going to keep getting worse. Every year seems to be worse than the year before. I have not much of a social life, and I haven't had a real romantic relationship in many years. Except for work, I am mostly alone. I am 34 and I feel I'm never going to have a normal life - never going to get married, have kids, build a real career, travel, etc.
I know everyone's IBS is different, but is it common for symptoms to worsen over the years? I think I was told or read somewhere that symptoms gradually abate in old age. Is that true? I am extremely fearful of what my future holds. The last 13 years have beeen pretty bad and have robbed me of so much, so I am terrified of what the 13 (or 50) hold in store.
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IBS-C, lots of spasm and trapped gas.
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Well no one knows for sure - there certainly are those who do get better - as well as the other way around...
However-
From my own experience - having symptoms since 1983, dx'd in 1988 - yes my IBS did keep on getting worse and worse.
It started out with a few episodes every 6 weeks or so; to gradually escalating to intense attacks lasting 4 hours or more almost on a daily basis - at least a few times a week.
Happened no matter what I ate - could be on crackers and water - happened in the hospital, with nothing but ice chips by mouth, happened while on meds, different supplements, diets, etc. Got worse and worse and more incapacitating as time went on. Was on every med, diet, etc. there was - had surgeries, hospital visits, trip to Mayo Clinic - nothing helped in the long term, or even to a very good degree.
I got IBS at age 31; I am now in my late 50's. I speak with IBS patients in their late 70's and 80's. IBS can wax and wane over the years - some go thru times where it subsides then comes back. Everyone is different.
However, I am here to say that in 2000 I broke the intensity of my IBS with hypnotherapy. It not only stopped getting worse, but it has gotten much better - I speak with other people all over the country who were incapacitated, and even elderly, and who have gotten their lives back.
Doesnt work for everyone, isnt a cure; but as a last resort ditch effort, for most folks, this is the ticket that finally works - at the very least - it gets the condition more manageable and keeps it from getting worse - but at the very best (most people) it alleviates or eliminates IBS symptoms.
If you need to talk to someone - 877-898-2539 for support, and if you want more info - look here
http://www.helpforibs.com/hypnosis/
and also at the hypnotherapy forum
http://www.helpforibs.com/messageboards/ubbthreads/postlist.php?Cat=&Board=hypnotherapy
So there IS hope - might not be the way forward for you, but the IBS Audio Program has been extremely helpful for folks since 1998 - a pretty good track record! 
Hope this helps and gives you some encouragement - all the best.
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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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Thanks for your kind words, Marilyn. However I am the person whom you recently advised in the Hypno Forum that hypno may not work for me since I have tried a few times before without any results - both with Mike's CDs and with two hypnotherapists trained to tackle IBS.
One of the peculiar issues I am facing is not knowing whether my IBS is 'different' in some way than others' IBS, because I had an eating disorder, so I am not sure if the malnutrition, etc caused some type of irreversible damage to my digestive function.
I do feel things are working a little better now that I'm at a healthier weight, so that does give me some encouragement. And I am seeing an osteopath who is far more knowledgeable about IBS than any of the GIs I've seen (she is well read up on Drossman, etc). Osteopath is a type of body work. When she works on the tissues of my gut, she says it feels a lot better than when I was underweight.
And I am continuing to do stuff like yoga to help manage stress.
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IBS-C, lots of spasm and trapped gas.
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Oh that's right, Renee! Duh... Well, I do hope you can improve with your osteopath - that is encouraging at least. If you do want to rethink the hypno, sometimes Mike will do a personal consultation; let me know if you want to consider it. But glad your osteo sounds like she is on top of things and hopefully that will get you on track... all the best to you.. 
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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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But you are not strictly following the EFI diet, are you? (I seem to recall that you eat fruit on its own and also a lot of dried fruit)
why not try adhering to Heather's diet entirely, being very careful about the IF and see how you feel in a couple of weeks' time?
I also recommend that you try out the cell salts I 'advertise' in my signature.
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Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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We call those snake bites BTW. 
Don't lose hope. People do go through phases with IBS and it can almost go away for some people especially as they age or really get to know their bodies. My IBS is worse this year too than it has been in other years. Its usually better in summer but not this year. I had so much stress I was sick almost every morning and never before in mornings! I don't think IBS will ever be cured but there may be new drugs or treatments in the future, if you don't improve some on your own. It is so hard to regress! The best thing is to go back to square one when you got better and do those same things. I plan to do an elimination diet as soon as the winter fruits are in the store.
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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I cut out the dried fruit because I felt it was making me gassy.
Yeah, I realized I shouldn't have posted that message, because it merely invites people to point out that I'm not following the EFI. I guess I don't have enouhg confidence in it. Plus I am recovering from anorexia and am following a meal plan for that which is not entirely consistent with EFI.
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IBS-C, lots of spasm and trapped gas.
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I cut out the dried fruit because I felt it was making me gassy.
Yeah, I realized I shouldn't have posted that message, because it merely invites people to point out that I'm not following the EFI rules. I guess I don't have enough confidence in it. Plus I am recovering from anorexia and am following a meal plan for that which is not entirely consistent with EFI.
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IBS-C, lots of spasm and trapped gas.
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Quote:
it's already burning and hot.
Pardon me if this is obvious and you've already tried it, but does the peppermint help at all w/that? Just recently someone described that peppermint caps leave them w/a feeling of 'coldness.' It sounds like you need that! Maybe you need more than one capsule in your case. ?
kem (daughter w/ibs-d dx)
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what meal plan is that?
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Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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i don't think you should listen to people who criticize you for not totally following the EFI diet. sometimes following it to a T works for people, sometimes it needs to be adjusted a bit, sometimes it doesn't work at all. everyone is different! Personally, I can tolerate some things that are "no-no's" (eg: caffeine, coconut, tiny amounts of hard, aged cheeses). you should only take from this board those posts that have your best interest in mind and are trying to help you with your problem, not tell you that you are not following the diet correctly. just my opinion.
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stable IBS-A
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You are so right about this. Nice comment for Renee. She needs the positive right now.
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People who tell someone they are not following the diet correctly DO have someone's best interest in mind!!! and are trying to help someone get better! What do you think (you and others) that some posters just enjoy coming here, reading posts and pointing out where people are erring for nothing but their own gratification?
People love to say they can eat anything, that the diet doesn't work for everyone and get offended when someone contradicts them. No one is saying any diet, including this one, will 100% cure IBS. But I do know this, for as bad as my symptoms are they 1) get much worse when I go off the diet- I feel it almost instantly when I screw up and 2) I have been very stable from the diet at times in my life but cannot sustain that. However it does show me, even in my worst, darkest times of doubt that staying away from trigger foods, eating a SF base and maintaining a low fat diet is only good for IBS. My IBS had worsened because I cannot handle stress, but I still don't think there is anything wrong with the EFI guidelines when they are followed (and C people get enough IF).
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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thank you! i am very sensitive to someone having problems adjusting to a diet after eating disorders. my sister was/is anorexic and i saw her hospitalized and clinging on to life at 80 lbs. you cannot tell someone who has had such hardships with food to just stick to this or that and you will feel better. it's not that simple.
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stable IBS-A
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Hi everyone, thanks for all your concern and helpful comments. I realize in hindsight that I opened a can of worms. One of the goals in recovering from eating disorders is to significantly loosen one's rules about food, so working on that goal while simultaneously following a set of rules about food (EFI) poses a unique challenge! It's something I am continually working on. I appreciate all the advice here.
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IBS-C, lots of spasm and trapped gas.
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Yes I agree and you are welcome. I know Renee from chatting with her from here and another site. I know her struggles along with Frygirl's. I appreciate all they have gone through. So, any positivity directed towards anyone in this situation can only help in the long run.
Like they say, unless you have walked in someone else's shoes, well... 
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Renee
#361902 - 11/04/10 05:33 PM
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Gerikat
Reged: 06/21/09
Posts: 1285
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Hi again. How are you? No, you didn't open a can of worms. Unless one has an eating disorder, then they probably cannot understand the situation and the obsession with food, and the meaning in your post.
It is a tough situation you find yourself in, and I hope that you can find your way to healing, whatever route that takes.
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I merely suggested trying following the EFI diet, don't know if you've ever properly done that?! I'd have merely assumed that if you're recovering from anorexia then eating something which upsets your digestion will put you off eating even more? However if you have your digestion on an even keel with the EFI diet that in itself should ensure that at least you won't be having to deal with the bloating and all that.
I wish you the best of course!
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Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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Hi, I do basically follow EFI. I eat SF and IF at every meal. I take acacia, probiotics, enzymes and Beano. I drink fennel tea. I don't eat most of the trigger foods - gassy, spicy, high-fat, caffeine, alcohol etc. I do find that the white-flour products endorsed by EFI just bung me up. And I guess the biggest difference is that I am back to eating dairy, 3 times a day. I cut it out for around 10 years and it didn't make any difference. I have several professionals urging me to eat it, esp since I tested negative for lactose intolerance and didn't notice that it made my IBS worse. So I am eating it. I do notice that a lot of cheese will make me C, but I don't feel any more or less C or bloated eating kefir, non-fat greek yoghurt, lactose-free milk and small amounts of low-lactose cheeses like swiss and parmesan.
Honestly, like everyone on this site, I have been tinkering with my diet for the past 15 years in attempt to deal with my symptoms. I cut out more and more foods. It didn't make my symptoms more manageable, and it did make me much more obsessed with and stressed out about food. I really feel that diet is not going to the be the answer for me. Yes, eating the way I do now gives me less pain than if I were scarfing hot wings and diet coke, but I don't believe that my getting "stable" depends on stumbling upon the right mix of foods. I think it's going to take a lot more than that. I also think that it's doubtful I'll ever get stable, if history is any indication.
I might note that when I went into ED treatment this spring, I was faced with a compulsory diet that was very "normal" and thus very different to how I'd been eating. And I actually felt better there than I'd had in ages. Yes, I was more bloated (which all anorexics experience during refeeding, as the body takes a while to adjust to the increased volume and fiber), but I was not as crampy as I am now that I'm out of treatment and experiencing more of life's stresses. But I'm still not even sure that stress is the crucial difference here - maybe it was the sheer volume of food I was putting into myself during refeeding that created a buffer against the cramping. I am now on a smaller maintenance meal plan, but I am thinking of increasing my dose of acacia to see if that helps with the cramping after BMs. I am currently taking 1 tbsp at breakie and dinner and thinking I should add one at lunch.
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IBS-C, lots of spasm and trapped gas.
Edited by renee21 (11/07/10 12:07 PM)
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If there is anyone on this board who had IBS as a result of an eating disorder and who has achieved stability with EFI, I would love to hear from you!
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IBS-C, lots of spasm and trapped gas.
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Hmmm...
I am still not clear on what IBS is then. For me the definition would be reacting to IF either with C or D or alternating. If you ate just IF, would you have problems?
You see the whole issue with bloating for me is that I am bloated with IBS because of the C. I have had problems with bloating pre-IBS but that was different and I now know that the bloating occurs because of slow bowel movements. I think bloating is a lot more common within the general population as well and for them eating whole grains for instance actually helps. I know it helped me with the bloating pre-IBS.
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Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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My bloating is more caused by gas, not C. Trapped gas - I don't pass gas very easily.
As for the definition of IBS, the Rome criteria don't make any mention of IF. IBS is basically defined by abnormal bowel habits, causing discomfort/pain, with no known organic cause (someone please correct me if I'm wrong).
"If you ate just IF, would you have problems?" Only IF foods, nothing else? Yes, I'd have problems. IF foods with SF foods? Yes, problems. Only SF? Yes, problems. The gut is chronically dysfunctional. The foods may aggravate or help, but IBS is not, by definition, a reaction to particular foods. At least mine isn't.
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IBS-C, lots of spasm and trapped gas.
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I am pretty sure that my definition of IBS is restricted but in my view if you have problems with SF alone as well then the EFI diet is indeed unhelpful and you don't really have IBS as such. I have trapped gas and bloating because of C and sluggish bowel movements. The trapped gas and bloating in the past when I was still healthy and I occasionally had it was a completely different.
If I ate just SF now I would not really have it. It's the IF that is the main problem hence why I need the EFI diet. I am not at all sure why you would have to carry on eating as advised for IBS then since you obviously don't have IBS in this sense and you yourself said that when you ate normally you felt better? If I'd known that you don't really have what I call IBS I would never have suggested you not eating fruit on its own. For non-proper-IBS people it may even help I hear.
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Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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PS please try the cell salts, Schuessler salts=tissue salts, they really can help!
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Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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Cellsalts...
#361967 - 11/09/10 12:24 PM
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renee21
Reged: 06/02/05
Posts: 486
Loc: Toronto, Ontario, Canada
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I have a feeling we are not going to agree on this. I am not sure where you got the idea that IBS was by definition a reaction to IF. That's like saying IBS is defined as an intolerance to alcohol, or to greasy foods - yes, they both make IBS worse, but that's not intergral to a diagnosis of the illness itself.
The Rome III criteria define IBS as follows:
Symptoms of recurrent abdominal pain or discomfort and a marked change in bowel habit for at least six months, with symptoms experienced on at least three days of at least three months. Two or more of the following must apply:
1. Pain is relieved by a bowel movement
2. Onset of pain is related to a change in frequency of stool
3. Onset of pain is related to a change in the appearance of stool.
On this website, Heather's aim is to help us strike a balance in our diet that keeps digestive systems running on an even keel - not too fast, not too slow, rhythmic and calm. She asserts that combining our IF intake with SF will assist in that goal. That is why IF is involved in these dicussions.
And I most definitely have IBS! Wish I didn't, but I do.
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IBS-C, lots of spasm and trapped gas.
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It can get a lot worse. I've had it since my late teens(now I'm in my late twenties) and this years it worse that ever. I have so much severe trapped gas , constipation, cramps, bloating, sharp gas pains, insomnia, fatique,pms ,headache ,muscle pain 24 /7 . I have yeast overgrowth.
I feel for u. I don't know what to do.
No doc will help. I'm so scared andevery day is a nightmare.
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Wow that sounds like me except I am in my mid thirties. I am worse this year out of nowhere.
Yeast overgrowth is interesting. I really need to cut out sugar since yeast could be adding to my problems.
Right now I am trying a month without b/c pills. My friend has been really sick for a few years now and has been in the Mayo clinic and had all sorts of parts removed in an attempt to make her better. She stopped her b/c pills and got immediately better (she doesn't have IBS; I mean health in general). She wrote to all the doctors she's seen to tell them and some are testing their patients off b/c. So I figured I would go off for one month. also I am making sure I get enough protein since I have such good days and then such bad, I thought maybe I didn't get enough protein when I feel so low and tired and achy-like. BTW some of those symptoms aren't IBS technically. Alot of people get tired, achy, nauseated, etc. but they aren't truly just IBS. Although anyone after D or with relentless C can be quite fatigued!
I hope I can improve my worsened state and help others with what improved it!
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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