Typical timeline of IBS?
#351716 - 11/06/09 10:59 AM
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PMartin
Reged: 08/05/08
Posts: 140
Loc: Niagara Region
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I've had IBS-D for about 15 years now. I can't remember exactly when it started but I've got a good approximation. It was more of a nuisance than anything else in the beginning as it wasn't that serious. However, over the years it got progressively worse and of course that's when and how issues of it being psychosomatic arise and what's the real cause and why I'm now in hypnotherapy even though I still feel it is a physical, not psychological issue.
So here goes...
- IBS starts around age 19 or 20. consult doctor. does tests and tries prescriptions that don't work
- see GI who in turn sends me to out of town specialist - more tests - no resolution.
- at this point, feel my only option (especially since it's what I'm also told)is to just "live with it."
- years go by with it getting worse so decide to try again - consult with naturopath - tinker with a lot of different "medications" and eating wheat/yeast free -no resolution (and costs $ out of own pocket). I do start/continue with EFI diet however.
- back to doctor - resorts to anti-anxiety medication - doesn't work.
- back to GI and at my prompting due to aggressive research exploring things like Habba Syndrome, try Questran. after some fine tuning with dosage, works great for one week. GI can't explain why it worked or why it stopped working and makes no effort to explore further. leaves it at he can do another colonoscopy if I want and to take Immodium.
And this brings me up to date where I am waiting to consult a dietitian to discuss the FODMAP diet and any intolerances I may have but I'm on such a restricted diet as it is, I can't see what I could still be eating that would be an issue. And also going to hypnotherapy. I am still caught up in why the Questran worked initially and if there's more to possibly having a dysfunctional gallbladder. Or I've wondered about another issue that I've read about being Pancreatic Insufficiency which I also brought up with my GI. He said however, as with a dysfunctional gallbladder, there would be other/additional issues (such as weight loss in the case of the pancreas) which I'm not suffering from so again he rules it out. And I inquired about having excess bacteria (SIBO) but he said that would have been detected in a stool ova and parasite test I did so that was out too. And I'm fine with that - I'm not looking for a diagnosis just for the sake of it even though it's wrong but how about putting some effort into it...tell me what's the next step not me telling him.
So if nothing else comes up or works, I've got a prescription for Lomotil (one in the seemingly endless list of potentially helpful medications) that I've been holding off on. And who knows if that will even work?
Anyway, while this probably just comes across as a useless ramble, I'm putting it out there to of course get any feedback or suggestions as to what else I could do from anyone (and I imagine there's a lot of you) who's been down this road.
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IBS-D. Or so a doctor says.
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Dear PMartin,
What you experienced with doctors is very typical. They apparently have not suffered from this and therefore don't understand at ALL!
I personally find that OTC Imodium works just fine when needed. Forget the Lomotil if OTC Imodium works for you. I purchase the Advanced Formula and don't have to use it very often, only when I have 'cheated' on the diet. Shame on me! Even so this OTC Imodium works just fine for me while I get back on track.
It is very sad that patients have to educate doctors, yet it seems to be the 'norm' today. Doctors have spent significant money on medical school, yet we spend a lot of money we don't have enlisting their supposedly 'educated' help. Doesn't work.
Stick with Heather's recommendations and keep reading on this site and beyond. You will get here the understanding and meaningful help that you really need.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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By the way, dieticians rarely are up to date on soluable and insoluable fibers. They teach the average person how to eat healthy and well balanced typical (non-IBS) meals which can absolutely aggravate IBS-D sufferers.
In addition, given IBS involes an apparent communication beakdown between gut and brain, it probably is a good idea to take an SSRI prescription medication that helps slow down that mis-communication and helps relieve symptoms, particularly if taken at dinnertime or bedtime. It may take 3-4 weeks for everything to settle down, yet the medication is something that needs to be continued.
Once one has IBS, it apparently never goes away, yet can be absolutely controlled with obedience to what is needed, just like any other medical problem such as diabetes.
Again, you will find more help in Heather's books and this website than you will ever get from a medical doctor. Just give it go and see how you do, no doubt you will find yourself very far much improved and relieved!
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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I am a bit perplexed by your doctor's statement that SIBO can be diagnosed with stool ova and parasite test. I have a suspicion that this information is incorrect. During the chat with an expert at UNC the other night I asked Dr. Drossman an internationally recognized GI researcher at UNC what is now considered to be an acceptable test for SIBO now that lactulose breath test has been shown to be inaccurate. His response was the glucose breath test is reliable.
As Windchimes points out don't be surprised if the dietitian does know a lot about the role of soluble fiber or FODMAPs in the management of IBS. Generally speaking they know how to help normal individuals manage a healthy diet but frequently they know little about the management of IBS through diet. Good luck with you appointment and hopefully will have a knowledgeable dietitian.
From the reports on the board Lomotil seems to work.
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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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What I have learned from years of doctors, years of tests, years of useless medications, and years and years of tears and frustrations, is that you have to find your own way.
No one can help you, but you. Wellness is all in your own hands.
I experience more wellness now than in my entire life.
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Amen! And ....
#351732 - 11/06/09 12:24 PM
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Syl
Reged: 03/13/05
Posts: 5499
Loc: SK, CANADA
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this IBS community and others like it have a lot to offer in the way of guidance based on experience. In the end you have to find you own way to manage 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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Yep, for sure, Syl! 
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This is so very true. It is a very personal thing patient by patient. Even so, Heather's products and recommendations in my experience are the VERY BEST place to start.
Keep on keeping and bless you all! 
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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I can understand since it has been so long that you are frustrated. When I aam having a bad time I am frustrated and very short with those I love. But when I feel good its great. In brief though, I had stomach problems even before I realized it. When I first went to my GI doc for the first time I was in a very bad time. He mentioned IBS matching my symptoms but then I had other symptoms as well. It did turn out after a HIDA scan that my gall bladder was definitely not functioning correctly. I had it removed and felt a lot better but not well. In the year since I had it out, I was having stomach problems still.I thought before that maybe it was all just the gall bladder. Well I did not have D but C off and on and sometimes seemingly constant stomach cramps and as a side effect (I think from the discomfort and stress) anxiety attacks. I went back to the GI doc and said I wanted to reapproach the IBS topic. He went over my symptoms again and said yes it sounded very much like IBS and so we have begun the treatment for it. I was already on a med for anxiety attacks (after a time or two in the emergency room) and I also take Nexium for acid reflux. He has put me on an anti-spasmodic med which seems to be helping quite a bit. I am also following the EFI diet and have begun yoga daily and I am taking the Acacia Fiber and the Fennel Tea. These last few days since I have begun all that have felt wonderful and dare I say.....almost normal. I know that they do not know exactly what causes IBS, but I feel like maybe the gall bladder could have had something to do with mine or at least exacerbated the problem. It may be something you might want to check into if they suspect it could be a contributing problem. I also had the light down my throat and there were no issues there. I do hope you find the root of this thing and that you get the help you deserve. And finally, if you think your doctor is not giving you the attention you need, you might try a referral to another doctor. It's hard to talk to someone about your problems if they don't seem interested in what you have to say. God Bless and hope you feel better soon.
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When all else fails.....have tea.
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I just switched doctors last month for a second opinion and my new doc has ibs-d so he knows where I am coming from. I am not sure where we are going to go from here because I don't see him until the 25th, he is waiting for my records. I am on Lomotil and Librium right now and I have to say the Lomotil is the only thing that makes me have a normal daily life. I dont ever get stable no matter what I have issues every day so I take the meds for now until we see what road my new doctor and I are going to take. Like alot of the people said you will have to find what works for you. I am actually the one that called my last doctor and asked for Lomotil to try after researching it. So unfortuanately we do have to do most of the work not the doctors. I hope you will soon find something that works for you cause I know how it feels to be at the end of your rope and disgusted witht the doctors.
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