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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Where can you have the breath test for lactlose done? Do I need to see an allergist?
I'm ready to try most everything. Once again, IBS presenting different symptoms - severely trapped gas - I'm guessing - rib cage, back - swelling unerneath rib cage, colon/stomach area and spasms in my transcending colon, so bad it feels like a baby kicking from inside!
When you go through the "D" - that seems the worse. Then you go through the "C" and that seems the worse. Now, this pain almost disables me... 
Thank you for being our scientific guru! ~ Dorothy
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"I Will Survive! :-)... I shall live and not die and declare the works of The Lord..."
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I have similar pain in the ascending colon. Removing fruit, sauces, etc with excess fructose such as apples, pears, melons, grapes, etc made a big difference for me. Have you been tested from lactose and fructose malabsorption? If no you might ask you GP or GI doc for these tests.
The lactulose breath test has been shown to be inaccurate for testing for SIBO. The glucose breath is accurate. These tests are requested by a GP or GI doctor. However, be aware that there is a low correlation between SIBO and IBS.
Good luck
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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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Well I can't answer your question about the breath test.
However, I CAN relate to your comment about being pregnant and having a baby kicking inside of your tummy! I have had a hysterectomy and so I knew there was no baby, though wondered if my still remaining ovaries were kicking up a storm!... or even worse, that I might be developing some type of horrible abdominal tumor.
Not so, simple (yet not so simple) IBS! IBS seems to replicate a lot of different health issues that are not there. No sense spending a fortune exploring these if one learns how to eat properly, particulary learning the differences between soluable and insoluable fiber.
Sadly, doctors go pretty much exclusively by their medical training for standard of the industry, aren't necessarily willing to learn more, and cost us a lot of unnecessary money and a significant amount of anguish, confusion and stress!
I urge people to take charge of their own health care and educate themselves. If they should run into a stumbling block that they cannot reasonably overcome, then seek out a good doctor or practitioner.
Do remember that they are not gods. They only know what they know or are willing to learn. My doctor even sent me for a psychiatric evaluation at one point, which proved to be a non-psychiatric problem. At that point I had been willing to do almost anything to get rid of the constant diarrhea.
Next I was sent to a hospital dietician who suggested that I eat more veggies (raw!). My gut was torn up even more.
When are those in the helping industries going to ever get it???
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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I hope you will discard the Librium and continue the Imodium as needed. Librium is not a good treatment for IBS GI symptoms, just something to calm you down mentally and in the meanwhile risking an addiction to it.
Be careful with this one! Take charge of the symptoms by what you eat, and forget the mind-altering prescription drugs that do not do anything at all for controlling IBS.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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Yes I am slowly stopping the librium don't want to do it all of a sudden and I will continue with the lomotil. It seems as long as I don't have the urgency issues I don't have the anxiety issues and since lomotil takes that away I don't feel I need the Librium. My doc does want me to try Librax but it gave me headaches and so I stopped. One thing at a time for me, get off the Librium and then we'll see from there. I do seem to do better if I don't eat anything with high fructose and stuff like yogurt. I mainly stick with rice, waffles, french bread, noodles, tortillas and such.
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One more thing to add. The only symptoms I have is the urgent bowel movements. I don't have the naseau or pain or gas, bloating anything of the sort just urgent bowel movements. I guess ibs comes in all different symptoms.
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Yes, you are absolutely right... IBS control is very different for everyone. We each need to consider our options, and give things a trial and error process. If you stick to the basics and then give other things a try, absent mixing multiple things, you will find out what your personal 'triggers' actually are.
Prescription drugs such as Librium is mind-altering and not something is beneficial for resolving gastrointestinal problems effectively. It can put people into a 'fog' that leaves one not knowing which end is up nor which end is down.
I encourage you to get off of it and ask your doctor for a mild SSRI instead. The SSRI can help the gut and mind communicate better for a lot of people, like myself.
I personally would be leary of any doctor who prescribes Librium for IBS symptoms. Sounds like he wants to get the 'monkey' off of his back... you being his patient. 
Just another example of how medical doctors rarely know how to effectively treat this condition and prefer to drug and dismiss their patient.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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What SSRI's would be good for ibs-d? That way I have an idea on what to ask my new doctor.
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From what I understand, low dose Paxil or Zoloft helps to manage the gut-brain mis-communication. I personally take low dose Paxil at dinnertime and sleep well. I have found no side-effects taking this at night. Some say taking this in the morning leaves them feeling drowsy during the day.
This is something that really should not alter the mind at all, but does seemingly work well where the serotonin re-uptake inhibitors are lacking in one's own body.
Do discuss this with your doctor and see what he/she has to say about prescribing such. You can also research these meds online to see what things they are prescribed for and a list of potential side-effects.
If you think such might be helpful for you, ask your doctor if he has a 7-10 day sample for you to try. Usually they do, samples provided by pharmaceutical companies through their reps.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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Are you ibs-d? From what I looked up ssri's could make ibs-d worse and that they are used mainly for ibs-c.
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Yes, I am IBS-D. Somewhere you have been misinformed. SSRI's CAN help offset the gut-brain reaction to processing food too quickly, and thus causing cramping, bloating, gas, and ultimately diarrhea. SSRI's can also be helpful for the IBS-C end of the spectrum. It's really a gut-brain communication correction.
My best to you in finding what actually works for you. I can't recommend anything that puts the brain into a 'fog' and can make one listless. There are some drugs that doctors prescribe that are inappropriate and extremely addictive, thus causing yet even more problems.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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By the way, ANY medication can take days or weeks to kick in. One must give it a fair trial and not be discouraged. If after about 3-4 weeks, it has not proven helpful for you, then dump it! You gave it a fair go.
I personally have done well on low-dose Paxil, helps reduce stress and calm the gut if I take it near bedtime.
Best of luck to you.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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I am glad to see they are helping you. I was informed by the internet and on different sites that deal with ibs. However like I said I am glad to see they help you and not make things worse. Hopefully I can find something to also help.
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