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Old 03-12-2012, 11:20 PM   #1
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Red face My Life Revolves Around a Toilet

I am going to go ahead and apologize now for the length of this I just want to get in as much information as possible. I'm sorry, I don't know how to make things short
So I have been to the doctor around were I live several times and no one can tell me anything. I feel as though the doctors I've been to really do not care what is going on with me. So I came here in desperate need of some help or advice or even just some support or something. Anything really.
My problem isn't an easy thing for me to talk about so please bare with me ...For the past year and a half my entire life has revolved around a toilet. It kind of happened very suddenly one day. I was out riding around with my boyfriend and I suddenly REALLY needed to go to the bathroom (please note that "go to the bathroom" means I needed to have a bowel movement. It feels slightly less embarrassing that way ) . Luckily we made it to a gas station in time (but just barely). All that day was just about miserable for me. I couldn't go 3 miles without making him stop somewhere for me to use the bathroom. I thought I was starting to come down with a flu or something.
The next day I had diarrhea about every hour or two. It was torture. So that week I went to the doctor and they gave me medication for acid reflux. This made absolutely no since to me but that's what the doctor gave me so I took it anyway. Needless to say, it did absolutely nothing to help my problem. I returned to the doctor and he suggested I go to the hospital and get checked to see if I had appendicitis. Yes... this really happened. I knew the symptoms of appendicitis and knew I didn't really have any of them. But... he was the doctor so, I went to the hospital, showed them the paper and they looked at me and said, "Seriously? If you have appendicitis you must be one tough girl. I've seen it bring tough men to their knees". Anyway, they checked me out and... no appendicitis.
So about a month goes by and I am getting more hope from articles on the internet than I am from any of my doctors. I read about IBS and thought it sounded exactly like what I was going through so I found reviews on different medications to help ease the symptoms of IBS. Tried the ones I could get over the counter but they didn't help. I read that a change in diet and reducing stress could help so... I tried everything I could think of. I tried certain diets to see if cutting anything in particular out would help. Nothing worked.
Month after month I tried everything I could think of and everything I read might help but nothing helped. I even went back to the doctor (knowing I would just get brushed off) and they told me it was all in my head (maybe I just kept getting bad doctors... I don't know). To make matters worse, it didn't matter how much liquid I would drink, I was becoming dehydrated from my frequent diarrhea. It did cut back after about a week though. It wasn't every hour or two anymore but I was still "going" about three to four times a day (and sometimes I would go and it would be more firm but more often than not, it wasn't).
I couldn't be far from my house for fear that I wouldn't be able to make it to a bathroom. I basically became a hermit. I hardly left my house at all. Even when in my house, I had to tell everyone else who lived there to NOT announce that they were going to the bathroom because knowing I wouldn't be able to use the bathroom made me have to go more. I was a slave to the toilet.
So it goes on like that for a few months until my (now) fiance and I move into our own house. I am a lot better around my own house than I was at my mom's (with 5 other people living there ). I'm not so much a slave to the toilet when I am home now. When I leave the house however, things get bad. I am 22 years old and I have to wear depends just to leave the house . The larger the crowd of people, the more nervous I get (more people means more people that need to use the bathroom). Just about everyone I've talked to brushes it off as anxiety but even anxiety medicine doesn't help so I don't think that is it.
I do not drink, smoke, or do drugs. I have a fairly healthy diet and I've been taking Phillips' Colon Health Probiotics (which seem to help a LITTLE sometimes). I do not have a stressful life (aside from pretty much needing a toilet available at all times). I can't figure out what is going on with me and the doctors I have been to are no help (and I live in a small town so I don't have many doctors to choose from). It's not that I constantly have to go it is just that when I do have to go, it hits very suddenly and I can NOT hold it. I am getting married at the end of the year and I REALLY don't want to have to wear a diaper under my wedding dress.
Can anyone help? Any ideas? Again... sorry for the book I had to write to explain everything.

 
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Old 03-13-2012, 12:40 AM   #2
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Re: My Life Revolves Around a Toilet

Sounds like IBS, Try Imodium multi-symptom, Caltrate D and if you can get a RX from your doctor for Ativan it helps to calm the intestines and the stress of going out. Probiotics made it worse for me. Hope it helps I know it pretty much destroys your life.
Good luck

 
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Old 03-13-2012, 07:18 PM   #3
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Re: My Life Revolves Around a Toilet

Try using Metamucil or Citrucell 3 times a day to help firm up your stools. Just make sure you drink another 8 oz. glass of water after taking the fiber supplements. Try eating bananas ,white rice-plain,dry toast and see if this also helps firm up your stools. If you're getting dehydrated despite drinking lots of water try drinking Pedialyte. You will find this in the baby food aisle in the grocery store. Yes,it's for babies and kids but I have heard home health and hospice nurses recommend it for patients with problems with diarrhea. It's worth a try and hopefully keep you out of the hospital.
Stress and anxiety,and depression make IBS symptoms worse so the more you can relax the better off you will be. Try slow deep breathing exercises while listening to relaxing music to help reduce any anxiety and stress.

 
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Old 03-14-2012, 02:15 AM   #4
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Re: My Life Revolves Around a Toilet

Does this become worse after eating or drinking. Ifmso this could be Habba Syndrome. Look it up, cos your symptoms sound so similar!

 
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Old 03-14-2012, 12:09 PM   #5
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Re: My Life Revolves Around a Toilet

Thank you everyone. Maybe now that I have a few ideas of what it might be I can go and suggest that the doctors test me for them. It really does sound like either IBS or Habba Syndrome. Knowing that there might be treatment for me helps more than you could imagine. Thank you all so much

 
Old 03-19-2012, 11:31 AM   #6
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Re: My Life Revolves Around a Toilet

Hey, just wanted to say your symptoms sound exactly like mine, which began about 2.5 years ago. Sadly, I still don't have an answer or much relief.

Like you, my urgent bathroom symptoms seemed to start suddenly and out of the blue one Sunday. My entire life changed after that; I no longer go anywhere except the grocery store, I have no friends, I am a recluse and only ever see my husband since he's the only person who comes to our house.

Things that have helped me most -
1) As soon as you arrive anywhere (store, mall, restaurant, car dealership, etc) scope out the bathroom when you walk in. Know where it is and estimate how long it will take to get there, just in case.
2) Fiber was a gigantic waste of my time and money. I tried all different brands, only soluble, of course. It did not improve anything and despite being crammed full of Metamucil or whatever, I would still have urgent watery incidents randomly. Try it yourself, but don't expect miracles.
3) The most helpful probiotic in my case was Culturelle. For the first week, I thought I was cured. Then the same old symptoms started creeping back, but the probiotic did reduce gas (I NEVER passed gas while on it for a year ahaha!). I stopped using it because it is expensive and I hate taking pills. Phillips was okay, but not as effective for me. Neither was Florastor or Digestive Advantage, etc etc.
4) The most helpful OTC medication in my case was, and still is, Imodium. For whatever reason, the chewable tablets are more effective for me than the ones you swallow. I guess my tummy isn't good at breaking down pills. The smaller chewables that are NOT multi symptom work best, and they don't have sorbitol like the others. In my body, the effects I get from Imodium are the result of the amount I took 2-3 DAYS PRIOR. Taking the med half an hour before an event, the day before, doesn't work. I have to pre-medicate for days leading up to outings or restaurant meals.
5) Avoid ALL sugar alcohols! If it ends in "ol" step away from the offending food/supplement. That stuff is almost instant problems, for me.
6) Vitamins, minerals (especially calcium carbonate supps) are hell on my intestines and buttocks. Seriously, my sensitive system wants NOTHING manufactured in it. I tried an expensive liquid vitamin supplement which worked okay absorption-wise, but I grew bored taking the green gobbly **** every morning.
7) Try your best not to inhale food and over eat. This is one I'm still trying to abide by, because my stomach acts better when I eat smalls bits and pieces, but honestly I have been starving for years now and it's really hard not to wolf down every thing in my site. If I don't eat anything after 7 pm, my stomach is better the next morning.
8) Gluten free didn't work for me. Neither does avoiding all processed food, avoiding sugar, avoiding fat, blah blah. My stomach just doesn't work anymore.

So, those are some tips that might help you. Also daily exercise has improved my state about 10%. I've been to several docs and recently saw another new one who, as usual, was perplexed and puzzled by my symptoms. Mine started with only the stomach problem, but now I have many more oddities occurring. Hopefully that doesn't happen to you.

 
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Old 03-21-2012, 01:23 PM   #7
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Re: My Life Revolves Around a Toilet

Honestly, just knowing that there are others out there that understand what I am going through, helps more than you could ever imagine. I was starting to feel like I was the only person on Earth who was going through this and no one was helping. I'm so entirely sick of hearing "It's all in your head" and "you just need to relax a little". Thank you all for helping me

Correctusage, I really hope you find some relief soon. I know how much this can ruin your life. I went from a social butterfly to a hermit. The few times I do venture out of the house, it's because I HAVE to be somewhere (like grocery shopping or the doctor or something). If I have any friends left at all it's only the ones who haven't completely given up on me yet and still come to see me (Though I don't expect that to last very long either. It has to be annoying always being the friend that comes to see me when I don't ever get out to go see them). And if I do go out to eat I totally do the bathroom mapping thing too. I have to know exactly where the bathroom is and how long it will take me to get there. However, I have to sit facing away from it because if I see too many people go in there or there is a line, I will stress out and it will just make me have to go more. I have also tried just about everything you have and haven't had any luck either. I've tried every diet I could think of (gluten free, sugar free, high fiber, low carb, etc.) and nothing helped. I hope you run into that magic potion soon though and can get your life and friends back

Also, to anyone else who is going through this or has gone through it, have you experienced any depression with it? I just feel like I am falling apart and this is completely taking over my body. I feel like I am becoming increasingly depressed.

I have another doctors appointment scheduled for Friday so I will keep you all updated. Hopefully they can give me something that will help. Fingers crossed

 
Old 03-21-2012, 01:25 PM   #8
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Re: My Life Revolves Around a Toilet

Honestly, just knowing that there are others out there that understand what I am going through, helps more than you could ever imagine. I was starting to feel like I was the only person on Earth who was going through this and no one was helping. I'm so entirely sick of hearing "It's all in your head" and "you just need to relax a little". Thank you all for helping me

Correctusage, I really hope you find some relief soon. I know how much this can ruin your life. I went from a social butterfly to a hermit. The few times I do venture out of the house, it's because I HAVE to be somewhere (like grocery shopping or the doctor or something). If I have any friends left at all it's only the ones who haven't completely given up on me yet and still come to see me (Though I don't expect that to last very long either. It has to be annoying always being the friend that comes to see me when I don't ever get out to go see them). And if I do go out to eat I totally do the bathroom mapping thing too. I have to know exactly where the bathroom is and how long it will take me to get there. However, I have to sit facing away from it because if I see too many people go in there or there is a line, I will stress out and it will just make me have to go more. I have also tried just about everything you have and haven't had any luck either. I've tried every diet I could think of (gluten free, sugar free, high fiber, low carb, etc.) and nothing helped. I hope you run into that magic potion soon though and can get your life and friends back

Also, to anyone else who is going through this or has gone through it, have you experienced any depression with it? I just feel like I am falling apart and this is completely taking over my body. I feel like I am becoming increasingly depressed.

I have another doctors appointment scheduled for Friday so I will keep you all updated. Hopefully they can give me something that will help. Fingers crossed

 
Old 03-22-2012, 07:47 AM   #9
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Re: My Life Revolves Around a Toilet

Hi! Just wondering if you've tried Imodium? You can take Imodium for years if necessary, it is not seen as a very "harmful" drug. It will slow down the bowels and lessen the reflexes of the inner sphincter muscle (the one that opens when you need to go). Good luck!

 
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Old 03-22-2012, 03:52 PM   #10
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Re: My Life Revolves Around a Toilet

Quote:
Originally Posted by Babygirl43 View Post
Hi! Just wondering if you've tried Imodium? You can take Imodium for years if necessary, it is not seen as a very "harmful" drug. It will slow down the bowels and lessen the reflexes of the inner sphincter muscle (the one that opens when you need to go). Good luck!
I have not but I am willing to try anything at this point. Is it an OTC?

 
Old 03-23-2012, 03:52 AM   #11
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Re: My Life Revolves Around a Toilet

Yes, it is OTC. Hope it works!

 
Old 03-27-2012, 10:03 PM   #12
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Re: My Life Revolves Around a Toilet

Just wanted to update you guys... So I went to the doctor the other day and got a doctor who actually seems like she might know what she's doing. I am having a lot of test done just to rule everything else out because knowing weather or not it is IBS is all a process of elimination apparently. So I had blood tests done, I am getting an X-ray, and I am having a Hemoccult test done. She also gave me a low dose of Prozac to help with the anxiety. So far I don't feel much different but I feel better knowing that at least someone is trying SOMETHING to help get me better. I'll keep you guys all updated and let you know if anything changes. Thank all of you for your help

 
Old 03-28-2012, 01:28 PM   #13
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Re: My Life Revolves Around a Toilet

OK....don't you just love doctors who make you think it's all in your head when they fail to diagnose what's really wrong with you. Your stories were my stories....exactly. For over 10 years I was a slave to being near a bathroom. Afraid to eat if I had to leave the house for fear of urgently needing to use a bathroom and all he discomfort that comes along with that...not to mention the embarassment! Right?

For years my bloodwork would reveal the following...low levels of iron and ferritin, calcium, protein, Vit D, Vit B-12, etc. I'd get put on the supplements, levels would eventually come back up, I'd go off the supplements and sure enough the levels would go down again. With my GI complaints and chronic diarrhea I was told it was IBS, but no one ever helped me manage the symptoms or feel better. I'm talking 10 years of this nonsnese. Everything I ate was going right through me. I was often weak, dizzy, fatigued...no wonder!

Last spring I saw yet another new doctor recommended by my GYN as a GI doc who wasn't afraid of hard to diagnose patients. What a God-send he was. He did a thorough medical history and ordered blood work and stool collection for malabsorption issues. Then he scheduled me for simple breath testing which confirmed I had Fructose Malabsorption (FM) and Small Intestinal Bacteria Overgrowth (SIBO). I was treated with Rafaximin 550mg 3 x's a day for 14 days (antibiotic that works in the small intestine where the troubling bacteria is reeking havoc), and I'm on the Low FODMAP Diet which is very restrictive, BUT, I'm finally feeling good. My BM's are normal people....Yes, you heard me right...NORMAL BM's!!!!

In my opinion, Irritable Bowel Syndrome (IBS) is a catch-all garbage diagnosis for GI symptoms that Docs don't know how to resolve. Do yourselves a favor and google Fructose Malabsorption, and SIBO. Read through the symptoms and decide for yourselves if they sound like your symptoms. If they do....research the GI groups in your area, or near the closest large medical center. You want to inquire if they are familiar with breath testing and treatment for Fructose Malabsorption and SIBO. I was tested for Lactose Malabsorption as well. Get yourselves appointments for these breath tests. If you are positive, treatment will change your lives. If you are helped...all I ask is that you spread the word so others who think they have IBS and continue to suffer know to look for the reasons for their IBS symptoms. Let me know how you all make out. Best wishes!

 
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Old 04-07-2012, 10:06 AM   #14
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Re: My Life Revolves Around a Toilet

I am glad you're getting back to normal. I am going to suggest my doctors check me for that too. I am just so desperate to figure out what is wrong with me I will try just about anything at this point. Thank you

 
Old 04-07-2012, 04:35 PM   #15
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Re: My Life Revolves Around a Toilet

To that6irl:
Most definately keep looking for answers to why you have these GI symptoms. I think the answers are out there for you. I always felt that about me...how unfortunate that it took me 10 years before I connected with the right GI doctor. I hope you have much better luck than I did. These chronic issues will make you very sick over time.
As patients we are also consumers of a service. I've felt too many times over the years that doctors don't think we should have a say in our healthcare decisions.
good doctors should encourage patients to be proactive and advocate for their healthcare. Isn't helping us to feel better and stay healthy what it should be all about? Doctors need to partner more with their patients, listen to us...very carefully. Think out of the box.
If you haven't yet read up on FM (fructose malabsorption) and SIBO (small intestine bacterial overgrowth), spend some time googling. I think you'll find it very enlightening. Wishing you better health sooner than later.

 
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