I've had IBS-D for 27 years....I need help.

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stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 6/15/2009 7:03 PM (GMT -7)   
I have had IBS for 27 years and it's not getting any better. I don't even have to eat, to have a spell. I can't go anywhere without having to find the bathroom. There are alot of times that it's uncontrollable!!!  Some doctors just say,'you have to live with it.' But, I'm tired of suffering!!!

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 6/16/2009 6:01 AM (GMT -7)   
I of course do not feel qualified to offer expert advice but based upon recent posts from the Vets here, most would be asking you for more background info, etc. And if you have been tested for food sensitivities, etc. You may have a gluten allergy, just for one example.

I've personally discovered that managing my IBS symptoms is like assembling a puzzle. If all the pieces are in place I do okay. Not great. The only time I seem to do great is after a bowel prep for a colonoscopy. I have an almost normal (minimal bms per day, no D) 1 or 2 week span. Until all the stool builds up again.

I feel my best when I follow a plain, low residue diet, keep my stress level as low as possible, eat small, very light meals, do not eat after dinner, take 50 mg of Colace each evening before bedtime, avoid foods/beverages I know I shouldn't have, have moderate exercise per day, and have the freedom to say no to certain social outings that would make things difficult for me. Add anything to the mix such as - traveling, family vacation, gearing up for a party, the entire xmas schedule, shopping, cleaning, baking, socializing - then my IBS goes into overdrive. I'm a mess. So consequently I do well when I follow the above and lead a very quiet lifestyle.

It's perfectly fine to say the word no - no to many things. I've actually perfected this!

But it's taken me a long time to get to this point. 10 years now.

Hopefully someone else will be of real help to you. I do think IBS can be individual, what helps one person, may not help another. It's up to each of us to become our own advocates and often times figure all of this out on our own. Until a doctor walks a day in our shoes, I just don't think they can even fathom what we all go thru. It would be nice if they could though. Then we'd be making some progress.

Hang in there.....you are certainly not alone in this struggle. Give it time, others will respond to your plea for help.
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


kim123
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Date Joined Jul 2006
Total Posts : 1201
   Posted 6/16/2009 10:45 AM (GMT -7)   
Have you definitively ruled out yeast/fungus as your problem?

hvanvorous
New Member


Date Joined Mar 2009
Total Posts : 19
   Posted 6/16/2009 10:51 AM (GMT -7)   
Here are a list of tests that need to be performed for a correct IBS diagnosis. http://www.helpforibs.com/footer/ibs.asp#tests.

I hope this helps!

stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 6/16/2009 7:47 PM (GMT -7)   
As I said before, I have had IBS for 27 years. I use to work at a hospital and thought it was just the stress of the job. But, after leaving that job; my 'stomach issue' continued. I remember at times, I would be vomiting. I can eat something one night and be ok, but the next night I could eat the exact same thing and I feel like I was going to die. I don't even have to eat. One time, I had the pylori bacteria and was given antibiotics. Another time, I had a severe case of pancreatitis. I've had colonoscopies and only one time, they found one polyp. I have been given different pills that suppose to help the spastic colon. Just when I think they are helping, the problem continues. Over the years, I have spent most of my time in the bathroom. I have had so many bouts with dirrahea, that the right lower end of my colon is slick. So, when I have a little rumble in my stomach; I better be in the bathroom. I haven't had a doctor suggest a test to check for food allergies or any fungus or any kind of intolerance. I find myself having more problems, when I eat at a resturant than when I just eat at home. It can hit me as soon as I finish my meal. I can either get a rumble, pain or the bloated feeling. I really appreciate everyone's comment and help.

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 6/16/2009 8:29 PM (GMT -7)   
Having taken antibiotics, you could have a yeast/fungus overgrowth, a dysbiosis in your gut. I believe that yeast/fungus contributes to my IBS-D tendancies. I need to be careful not to overindulge in grains, sugar, and especially yeast foods. Here is an article that reflects my beliefs with many of our disease today, including IBS. I firmly believe all should be taking probiotics. They have helped me retain my good health.

http://www.naturalnews.com/022241.html

May be worth it to experiment and eliminate grains and refined sugar, along with the other "forbidden" foods mentioned in the article. At least you would know for sure in a few weeks if yeast/fungus was the root of your trouble.

You can also read more about fungus on www.knowthecause.com. The diet is listed under "Resources" (pg. 3)

Post Edited (kim123) : 6/16/2009 9:41:16 PM (GMT-6)


stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 6/16/2009 8:38 PM (GMT -7)   
I only had to take antibiotics for about 14 or 15 days and this was years ago.

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 6/16/2009 8:43 PM (GMT -7)   
Antibiotics taken even as a child can cause health problems years later. Antibiotics are by nature, fungal poisons.

stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 6/16/2009 8:55 PM (GMT -7)   
I didn't know that, but I had IBS long before that. Another thing, I don't lose weight. Not that I'm over-weight; but it's all in my tummy area. I just don't understand.

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 6/16/2009 9:12 PM (GMT -7)   
How about doing a fun test:

http://www.cuttingedgehealing.com/Candida_Spit_Test.html

I'm not saying it is valid, but what the heck! I did have many strings hanging when I took the test, before I went on the elimination diet.

Have you been tested for gluten sensitivity/allergy? Do you drink/eat artificial sweetener?- alcohol?
Do you crave bread, pasta, starchy foods, sweets?

If you feel really bad, why not try eliminating grains/sugars for as long as you can, and see if you don't notice improvement, as these are often common triggers, whether or not you have a fungal condition.

Hope you feel better soon. Try something. :) If you always do what you've always done, you'll always get the same result.

Thinking of you.............

stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 6/16/2009 9:54 PM (GMT -7)   
Thanks, I will try that test. No, I don't use artifical sweetners, or alcohol and I don't crave food.

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 6/18/2009 11:44 AM (GMT -7)   
Again, something else to consider... low carb diets and IBS. I am a big believer in IBS/IBD and fungus being linked. Fungus can only be controlled/starved from following a low carb diet. I wonder if that is why patients get better following a very low carbohydrate diet. See below:

http://www.ncbi.nlm.nih.gov/pubmed/19281859?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

tiedinknots
Regular Member


Date Joined Jun 2009
Total Posts : 35
   Posted 6/21/2009 9:54 AM (GMT -7)   
I agree with the quiet life. :(

Also, there's an online resource somewhere where you can find maps of where all the toilets are in an area. I'm not sure if there'd be one for your area, but I took a mental note that the service existed because I always try to spot the toilets location wherever I go. Forgot where I saw it, try and Google it maybe, or try the IBIS website?

Hope that's at least something for you. Hang in there, I know it's tough.

stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 7/6/2009 10:07 PM (GMT -7)   

Hello everyone,

Has anyone ever taken Align and did it help?  I just started it today, hoping that it will help my IBS-D.


MaxieJ
Regular Member


Date Joined Jul 2009
Total Posts : 34
   Posted 7/17/2009 8:41 AM (GMT -7)   
This is no way to live. There must be some doctor out there that can help you. Did you try foods high in protein to halt the excessive diarehea. How about a nutritionist. Were you ever put put on Librax?
 
 
Hello - IBS Sufferers. I have alot to share


stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 7/17/2009 8:17 PM (GMT -7)   

No, I have never been put on Librax. At the moment, I am not under a doctor's care because I have no health insurance. But what medicine they have given me over the years, did not help.

 

Has anyone ever been put on disability due to IBS? I am so tired of this!


stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 7/20/2009 9:07 PM (GMT -7)   
Well, to let everyone know how I've done on Align....NOT!!! Within taking Align for 2 weeks, I kept a record of my 'episodes'. I had 27 of them. I decided to email Align and tell them about it.  Of course, they could not give me any medical advice, but told me that their product should not have affected me in that way. I was told to stop taking the pills and save the remainder of the box, incase their Health and Safety Dept.; wanted them. I hope no one else has experienced this problem.


Alpha
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/21/2009 9:30 AM (GMT -7)   
stilltiredofit51 said...
I have had IBS for 27 years and it's not getting any better. I don't even have to eat, to have a spell. I can't go anywhere without having to find the bathroom. There are alot of times that it's uncontrollable!!! Some doctors just say,'you have to live with it.' But, I'm tired of suffering!!!



Have you tried taking 2-3 immodium before going out to an event or someone's house? It helps me a great deal. I used to take tincture of opium until it wasn't available any longer.....I, like you, have suffered with this for 30 years.....try the immodium....it helps!

stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 7/21/2009 10:51 AM (GMT -7)   
Yes, I've taken Imodium.  But, I would be taking them every day, if I need to take them when I go somewhere. Would that be good for my system?

Alpha
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/21/2009 2:38 PM (GMT -7)   
Hi, There are days I have had to take them consistently....I realize, however, there's a price to pay for that!! Constipation!!!! But, I've learned to balance my needs to what things I am planning and pretty much, I do fine. I got my pilot's license and did many other adventuresome things.....don't let IBS stop yourself from living...do whatever it takes to take it a day at a time....

stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 7/21/2009 7:14 PM (GMT -7)   
Thanks Alpha. When I do take Imodium, I am ok for a day and then after having (what I'd call a normal bm); it usually hits bad afterwards. It's like it just loosens it up. Of course as I've said before, my colon is now slick due to so many years of IBS. I don't even have to eat anything, for an episode to happen. I don't lose any weight, either. If I did, I wouldn't weigh 60 lbs.

Alpha
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/22/2009 9:18 AM (GMT -7)   
Has your doctor ever suggested tincture of opium to you? It still is made, but difficult to get unless your doctor pushes for you to have it. It helped me for many years....
because it's a narcotic, doctors sometimes who really don't understand the benefits of it, don't offer the idea to patients suffering....very unfortunate. talk to your doctor about it. I did very well on it and once I went off, I was fine as well...I went right on immodium....didn't go through withdrawals as one would think....if it's used properly those kinds of things won't happen.

stilltiredofit51
Regular Member


Date Joined Jun 2009
Total Posts : 26
   Posted 7/22/2009 5:31 PM (GMT -7)   
Thanks for the suggestion, but I'm not under a doctor's care at this time.  I don't have any health insurance. I am not one to take narcotics, any way.

Alpha
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/25/2009 9:25 AM (GMT -7)   
I can understand the hesitancy....but if you do ever get to see a physician, ask about it.....I think people hear the work, "opium" and freak out!!! It's actually abit stronger than phinabarbatol was many years ago, which was over the counter...as I told you, I passed my aviation physical, declaring it after a doctor's letter...and was also in space training in Russia during that time as well....however, for now, just keep using immodium....try different ways of using it to fit your own personal needs....
If ever you want to share your issues, please feel free to do that....good luck...I know it's frustrating and difficult.

Simzee
Regular Member


Date Joined Sep 2007
Total Posts : 64
   Posted 7/29/2009 2:22 PM (GMT -7)   
Hello. You almost sound like me. Anything can "set" ya off any time or place.  As far as me eating....well I do not eat much. Like today....I can not eat anything because I still have the D's after 24 hours.  I hate to say it but starving myself 3 to 4 days a week works for me. (no food in....nothing out I hope) Also, I've spoken to a few people with Ostomies.   A temporary one might help....IF you can find a Doctor to help. (no such luck for me)  Good Luck to you.
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