# for the love of sweet Jesus, help



## amb1048 (Jan 9, 2018)

Hello all,

I am new to this forum, but I am not new to the horrible pain and discomfort of the unknown. For the past 5 years I have not been able to be the person I know I am. For the past 5 years I have been hurting the people around me with the unknown that I face on the daily. I have tried every obscure and normal potential relief from the "ibs-c" or "cic" I suffer from. My doctor said my colonoscopy was beautiful, which is weird but i get it, because doctors. My doctor also tried to blame my depression and anxiety problems. My doctor tried to tell me I didn't do enough cardio. There is nothing more heart-wrenching and frustrating as your doctor thinking you're just some random young adult not doing it right. I have told my husband that I don't see a future for myself because of this problem and because of how I feel daily. I feel horrible for that. How many people have fought with doctors about IBS when it was something else. I can't help but think it has to be something else. I can't eat. No matter what I do, I can't be a normal person. I eat less than a 1000 calories a day, and I feel like there is a 6 month old fetus in me at all times. It's not like I eat nothing but bull all day..it's 100 calories of low FODMAP stupidness and protein. Please help me. If it exists, I've tried it. Could it be something else? Is IBS really this horrible? How in the hell as a 26 year old, am I supposed to deal with this the rest of my life? I've been so close way too many times to admitting myself to suicide watch in the local hospital.


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## flossy (Dec 8, 2012)

Hi amb1048 -

Sorry to hear about your intestinal woes. Read this when you have the time, it should definitely help (click on below link to read):

http://www.ibsgroup.org/forums/topic/325690-the-abcs-of-chronic-constipation-aka-ibs-c/

Good luck & keep us posted!


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## annie7 (Aug 16, 2002)

Hi

so sorry for all your problems. living with chronic constipation is miserable.

you need to find a better gastroenterologist--one who specializes in motility problems--especially since, according to your health profile, you have gastroparesis. often gastro docs who work at university hospitals or motility clinics are more up-to-date, proactive and more knowledgeable about treating constipation than regular gastros.

there are some tests you should have to help get the bottom of what's going on with you--the sitz marker test (colonic transit study), which tests your colonic transit time, the defecogram (defecatory proctogram) , which tests for pelvic floor dysfunction and other outlet problems and the anal manometry. i had all these tests and was dx'd with colonic inertia, pelvic floor dysfunction, rectal hyposensitivity and megarectum.

have you tried Trulance (plecanatide). it's a new C med and has helped a lot of people. Resolor (prucalopride) is a very effective prokinetic med that unfortunately is not available here in the usa but if you can get your doc to write a script for it, you can buy it from canadadrugs.com.

have you tried that laxative that Flossy recommends--Dr Schultz intestinal formula #1? a lot of people here on the board have had great success with it.

and if it turns out that you are refractory to all treatments, there is surgery available--a total colectomy with ileorectal anastomosis. i've read a lot of success stories about this type of surgery.

there are a lot of ideas here on the board for dealing with chronic C so if you haven't already done so, you might want to take a look around and do some reading.

also check out this thread:

http://www.ibsgroup.org/forums/topic/152106-the-great-list-of-remedies/

good luck with everything. hope you can find some relief.


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## amb1048 (Jan 9, 2018)

Hello , thanks for the responses.

I am actually headed for a gastric emptying test tomorrow. To be quite honest, the constipation isn't even the biggest problem for me. Don't get me wrong, it totally sucks, but I can go to the bathroom in the morning and the bloating is unbearable even if I am empty. Is this a big part of IBS or has anyone had anything different? Doctors seem to focus strictly on the constipation. After this test, I will probably seek out another doctor; one that specializes more in motility since that seems to be my biggest issue. I am now taking the new low dose of Linzess (72). I took the 290s and my doctor thought it might not be working effectively because it was too strong of a dose. I also took Amitiza, which worked wonderfully and I thought my life was saved. It only worked for 6 weeks and then whatever ails me came back with a vengeance. I just increased my SSRI today to hopefully help me cope a little better (and perhaps help the molecular uptake in my gut). They mentioned Trulance; that will be the next step most likely.

I will definitely look into a more specialized doctor, and thank you for the successful surgical options. I almost laughed at my doctor last time i was in there because she recommended eating prunes and doing cardio. I had to laugh otherwise I would have cried, which I had already done during that visit. I could've thrown something across the room at her, like...you don't think i know that!?

I haven't tried the intestinal formula, but it has all the same ingredients that I have tried in a million other things over the years. Senna has always been a little harsh for me and makes the bloating and excessive gas way way worse.

thanks again


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## flossy (Dec 8, 2012)

I would try prune JUICE and perhaps magnesium together.

Also, I am still encouraging you to try/buy some I.F. # 1. Get the maximum strength pills if you have really bad constipation (I use both the regular strength and max strength daily). You could always take Beano and simethicone capsules if you get too gassy.

You should take something every day to help you go, don't skip days.

Good luck and keep us posted!


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## amb1048 (Jan 9, 2018)

I did order some, but let me stress again, my biggest issue is not the constipation..it is the bloating. The bloat basically laughs when i take beano or gas-x like its a joke. It never works and sometimes gets worse. I have actually had 2 BMs today, but am bloated to the point where my jeans don't fit. I haven't eaten anything additional since my last BM. I tried prune juice years ago. Anything for this you can buy at a grocery store, I have tried. It continues to get worse. I currently eat prunes daily as well as taking magnesium citrate pills. I read the big list of things to try about a month ago that you posted on here, flossy. This is where i got the mag citrate idea. Most of the things on said list i have tried to no avail.


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## flossy (Dec 8, 2012)

What do you think the bloating is caused by?

What do you think the bloating is caused by?


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## flossy (Dec 8, 2012)

P.S. Sorry the same question posted twice, my Internet connect has been rather spotty lately (sighs).


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## amb1048 (Jan 9, 2018)

if i knew that i wouldn't be so desperate for help


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## flossy (Dec 8, 2012)

Have you ever been tested for food allergies and/or food intolerances?

How about a lactose intolerance?


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## annie7 (Aug 16, 2002)

the bloating could be due to gastroparesis, which causes lots of bloating and pain. but it also could be due to SIBO--small intestine bacterial overgrowth. have you been tested for SIBO. symptoms of sibo include constipation, severe bloating , abdominal pain, etc. a lot of people with motility problems develop sibo.

https://www.siboinfo.com/

good luck with your test today. let us know how it goes.


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## amb1048 (Jan 9, 2018)

annie7 said:


> the bloating could be due to gastroparesis, which causes lots of bloating and pain. but it also could be due to SIBO--small intestine bacterial overgrowth. have you been tested for SIBO. symptoms of sibo include constipation, severe bloating , abdominal pain, etc. a lot of people with motility problems develop sibo.
> 
> https://www.siboinfo.com/
> 
> good luck with your test today. let us know how it goes.


The emptying test was all normal and totally fine. Biggest waste of $600 ever. 1/4 of the way to meeting my deductible though









I had heard of SIBO before and read a little about it, but now I am seriously thinking that it what it is. I mean, I am sure I also have IBS as well under the bacterial growth, but the symptoms are pretty much all spot on. I even got random eczema (which I've never ever had before) over Christmas. I will definitely ask my doctor if this is the next thing we can look at. I always thought the problem was more in my small intestine, and this totally makes so much sense; now more than ever.

Thanks!


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## annie7 (Aug 16, 2002)

thanks for the update. sounds like you don't have gastroparesis, since the emptying test was normal.

yes, do get the possibility of sibo checked out. i was dx'd with it, took augmentin for it since my insurance wouldn't pay for rifaximin, and felt much better afterwards. i still do follow a low carb diet.

good luck! keep us posted.


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## sjw596 (Feb 19, 2014)

amb1048 said:


> I did order some, but let me stress again, my biggest issue is not the constipation..it is the bloating. The bloat basically laughs when i take beano or gas-x like its a joke. It never works and sometimes gets worse. I have actually had 2 BMs today, but am bloated to the point where my jeans don't fit. I haven't eaten anything additional since my last BM. I tried prune juice years ago. Anything for this you can buy at a grocery store, I have tried. It continues to get worse. I currently eat prunes daily as well as taking magnesium citrate pills. I read the big list of things to try about a month ago that you posted on here, flossy. This is where i got the mag citrate idea. Most of the things on said list i have tried to no avail.


I take 200 mg of Mg Citrate before bed, daily. I don't believe that, in my case (longstanding CIC), it does anything. I take it mostly for its reported sleep benefits. As I understand it, Mg Citrate in reasonable (non-toxic) doses as a supplement is not likely to aid CIC. It's quite different from the Mg Hydroxide in Milk of Magnesia. But, everyone's different.


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## amb1048 (Jan 9, 2018)

annie7 said:


> thanks for the update. sounds like you don't have gastroparesis, since the emptying test was normal.
> 
> yes, do get the possibility of sibo checked out. i was dx'd with it, took augmentin for it since my insurance wouldn't pay for rifaximin, and felt much better afterwards. i still do follow a low carb diet.
> 
> good luck! keep us posted.


Reading more into SIBO, did you have any problems with the antibiotics? How long did you have to take them and did you have to take multiple rounds? My doctor has not been answering me. I called her every day since Monday with no response. I ordered a SIBO test online because if I would have just done that in the first place, I would have the test by now.

Were you dx'd with anything else? I am just trying to find out my next steps and be proactive and try a different doctor.


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## annie7 (Aug 16, 2002)

no, i had no problems with the antibiotic. i just took one course of it and it fixed my sibo. my sibo did come back (as it tends to do) about a year later but another course of augmentin took care of it.

i listed all the tests and diagnoses i had in my first post --the only test i didn't mention was my colonoscopy, which showed that i had a long, twisted colon. i haven't had any other tests.

that's terrible that your doc hasn't called you back! maybe it's time for a new doctor. good thing you ordered the sibo test online--good for you! and yes, it's good to be proactive--we absolutely have to be.

good luck.


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## Jasesun23 (Nov 11, 2016)

I'm back to the forums after a long time (over a year) as my miracle drug Amitiza has stopped working. Amb1048 firstly if you are having suicidal thoughts you should go see a professional about that, that should never be an option. That being said I get where you are coming from. When my pain/uncomfortability/just terrible feeling in my midsection was very bad its all that I could think of, every waking minute I was in discomfort. It really is no way to live day to day and its unfortunate science doesn't know more of what is going on in our digestive system.

I see you say Amitiza worked for you for 6 weeks. How much were you on? How long have you been off it? My GI told me like with all drugs taken on a consistent basis our body get used to them and we need more and more. Maybe if you have been off it awhile it might work again for a couple weeks. I'm no sure how much you were taking but if you were not on the max ask your doctor to try 24mg twice a day.

I've tried a lot of things concerning food / caffeine / water intake / fiber /etc. I've never noticed any real improvements. I can tell you when Amitiza was working well it didn't matter one bit what I ate, drank or anything. I just had 1 BM a day, perfect type 5 movements. No bloated feeling, no back pain, my frequent urination stopped as there was no pressure on my bladder. I felt like a normal person, like the majority of the world feels, and how we should feel if everything was working correctly. This makes me believe that food has nothing to do with it. If you can find a diet that helps thats great but I don't believe there is one, there is something fundamentally wrong with our digestive system that isn't understood yet and diet isn't going to correct it.

So my advice it try amitiza again on the max amount allowed. And if that is not an option try the new medication Trulance. And post as often as you want to the forums, its always helpful to know you are not alone and others are going through the same thing.


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## amb1048 (Jan 9, 2018)

Jasesun23,

I was on the highest dosage of Amitiza, and like you it felt like the miracle drug. I was able to work out and feel like a normal human. I often try to make people understand how I feel by saying, "I feel like I just ate two Thanksgiving dinners when in reality I haven't eaten in 2 days."

I do believe I have IBS, but I wish my doctor and others would stop being so obsessed with that being the only thing I have. These things all piggy-back. I have the constipation mostly under control, but I go back and fourth between D and C even though I take the same things every day. My doctor (actually my PA) told me that there is probably nothing I can do food-wise to help, but I also find that hard to believe. I think once I figure out the other dx for my severe bloating and treat it, I can base my diet on keeping a balance.

I have no food triggers. Everything ruins my balance. I feel really good today, but I have only eaten 2 meals in 48 hours so there is nothing to ferment in my small intestine to cause the crazy bloating. Keep looking. There has to be more for you too. The most frustrating thing is to think you have figured it out only for it to stop working...again. I feel for you, keep trucking.

I went to my therapist and PCP in the last week. I told my therapist that I am happy with my life, I just got married and things are good. I just straight up can't handle my stomach because there are so many ties to the brain causing severe anxiety and depression (another reason I think i have SIBO). My PCP upped my SSRI that I have been on for about 6 years now hoping it will help take the edge of the stomach problems off as well as potentially helping the serotonin activity in my intestines.

I've also been reading a lot about increasing the amount of your stomach acid by eating fermented foods (which I don't really like). I used to drink tea with apple cider vinegar in it; I think it's time to start doing that again. The more your stomach can use the acid to break down food, the more of a fighting chance the neutralized food has getting through the rest of the body.


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## Crys1532 (Jan 19, 2018)

I literally feel like if I were to write a post I would name it this and say all the same things verbatim. Im 33 and about 4 to 5 Years ago I had super bowels. Like have a bm 2 to 3 times per day, normal formed, felt great and nice flat stomach. Perfectly working bowls and if I looked at a laxative I would go. Then one day bam. Im bloated up and look pregnant and cant go no matter what I do. It was crazy the change that happened over a few weeks so I thought it happened so quickly that something had to have happened. Ive been tested for everything, parasites every lab you can name, thyroid, every test done for stool, small bowel follow through, colonoscopy. And they all come back negative when you hope and pray for them to find something. They say try prune juice or run, Im a runner anyway but I just laugh cuz Im like you dont get it. Nothing natural helps. Laxatives can get me to go but like you it doesnt matter because even if you can get yourself to one bm a day youre still bloated and pregnant by the end of the day and feel like your stomach is going to explode. Its like the food goes in and then just ferments and builds up air to the point where I cant breathe. I too have now battled depression and thoughts of suicide. At 29 the dr said I was getting older and my boweels were slowing down. I mean what the heck. Its laughable how unhelpful and unrealistic drs are. When I think about living my life feeling like this forever its a deep feeling of hopelessness and depression. I get it. My only advice to you is I ordered pepcin/Hcl tablets. Its the acid in your stomach. It is the ONLY thing to give me relief. Im not cured but its 30 percent better. You dont feel like you are going to die after every meal. Its basically your stomach acid. I was told I have acid reflux but Ive read that many ppl actually have LOW stomach acid so I take this with meals and it helps to break food down much better. Also high quality digestive enzymes help. Is your stool mostly unformed when you do go? This will help you absorb the food better. I almost was glad to read your post to know Im not the only one out there. Sometimes I feel like no one in my life understands. And that makes it harder. Im so sorry youre going through this.


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## amb1048 (Jan 9, 2018)

Crys1532,

Thanks for the advice on the enzyme stuff. My undergrad degree is in exercise science. I like to work out. And it's true; it is almost comical to hear the doctors tell you to make sure you're keeping up with your cardio. When I have been on multiple rx medications and can eat laxatives like candy with no help, and my doctor says "well prunes can really help" i literally laughed out loud at her. When I am not on any medications or anything my BMs are number 1 all the way. Rabbit pellets. The past two weeks I have been on Linzess 72 once daily and Miralax once daily. My BMs have been about a number 6 on the bristol scale, but for the past three days I have been taking the Intestinal Formula that has been mentioned above numerous times. The bloating hasn't been as bad, and I could actually work out yesterday without wanting to die. So maybe it's working this week, but I try not to keep too much hope for anything.

Update though: my doctor finally called me back today (i called her on monday mind you) and left a message and told me to call her back. Once again..I had to laugh out loud because it took her 5 days to answer me in the first place. I'm glad I ordered a SIBO test online. I know it might not be as accurate, but I have to take things into my own hands rather than allowing my doctor to use me as a test subject for stuff that doesn't really even make sense if she would just take a sec to listen to me.


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## pammie007 (Jan 22, 2018)

amb1048 said:


> Hello all,
> 
> I am new to this forum, but I am not new to the horrible pain and discomfort of the unknown. For the past 5 years I have not been able to be the person I know I am. For the past 5 years I have been hurting the people around me with the unknown that I face on the daily. I have tried every obscure and normal potential relief from the "ibs-c" or "cic" I suffer from. My doctor said my colonoscopy was beautiful, which is weird but i get it, because doctors. My doctor also tried to blame my depression and anxiety problems. My doctor tried to tell me I didn't do enough cardio. There is nothing more heart-wrenching and frustrating as your doctor thinking you're just some random young adult not doing it right. I have told my husband that I don't see a future for myself because of this problem and because of how I feel daily. I feel horrible for that. How many people have fought with doctors about IBS when it was something else. I can't help but think it has to be something else. I can't eat. No matter what I do, I can't be a normal person. I eat less than a 1000 calories a day, and I feel like there is a 6 month old fetus in me at all times. It's not like I eat nothing but bull all day..it's 100 calories of low FODMAP stupidness and protein. Please help me. If it exists, I've tried it. Could it be something else? Is IBS really this horrible? How in the hell as a 26 year old, am I supposed to deal with this the rest of my life? I've been so close way too many times to admitting myself to suicide watch in the local hospital.


i hear you i feel the same. my ibsc started two years ago i was out with a friend and had a funny turn everyone wanted to call an abulance but i said no the panic was over the top. ever since then i wont drive as the funny turn came from nowhere and im scared of it happening again. from that day on the panic attacks started and the anxiety then my bowels started acting up. every time i was anxious i couldnt go. then it just got worse. every morning i wake up the anxiety starts will i be able to go today and im convinced now that when i get anxious it feels like my insides are goin into spasm so i cant go. my solution? i have two puffs on a joint evry morning it calms me down so im not anxious which im sure is half the problem i know its illegal but wtf ill try anything. it does affect your life so i know where your comin from its the most hideous of conditions itsnt it funny before i had this i never gave goin to the loo a thought now its all i bloody think of. lust know you are not alone i feel exactly the same as you as my quality of life has gone out the window


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## pammie007 (Jan 22, 2018)

ive found when im stressed its worse i can pinpoint when my ibs started after a real scary episode in my life which caused stress and anxiety. the only thing that stops me getting anxious as goin to the toilet is the first thing i stress about as soon as i wake up, is i have a few puffs on a joint. this relaxes me and calms me down then as soon as i have a coffee i go.. i know its a bit out there but i had tried everything known to man nothin worked. i also drink water with baking soda in which alkalines your body things are ok at the moment but everytime i stress i can feel my guts going into spasm so i try and avoid stress if possible


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## pammie007 (Jan 22, 2018)

amb1048 said:


> Hello all,
> 
> I am new to this forum, but I am not new to the horrible pain and discomfort of the unknown. For the past 5 years I have not been able to be the person I know I am. For the past 5 years I have been hurting the people around me with the unknown that I face on the daily. I have tried every obscure and normal potential relief from the "ibs-c" or "cic" I suffer from. My doctor said my colonoscopy was beautiful, which is weird but i get it, because doctors. My doctor also tried to blame my depression and anxiety problems. My doctor tried to tell me I didn't do enough cardio. There is nothing more heart-wrenching and frustrating as your doctor thinking you're just some random young adult not doing it right. I have told my husband that I don't see a future for myself because of this problem and because of how I feel daily. I feel horrible for that. How many people have fought with doctors about IBS when it was something else. I can't help but think it has to be something else. I can't eat. No matter what I do, I can't be a normal person. I eat less than a 1000 calories a day, and I feel like there is a 6 month old fetus in me at all times. It's not like I eat nothing but bull all day..it's 100 calories of low FODMAP stupidness and protein. Please help me. If it exists, I've tried it. Could it be something else? Is IBS really this horrible? How in the hell as a 26 year old, am I supposed to deal with this the rest of my life? I've been so close way too many times to admitting myself to suicide watch in the local hospital.


how are you doing? you sound so desperate, i know this ibs is hideous but the more you stress the worse it gets i know ive been there. six months ago i was a wreck. every morning as soon as i woke up the anxiety started will i be able to go today. i even lost the urge to go i would have panic attacks and became more or less a recluse i felt safe at home. then one morning i woke up and said this is taking over my life well the hell it is. i started doin yoga which calmed me down ate every few hours only small meals and de stressed. the difference was amazing i now go every day, not easily mind you i have to strain a bit but at least i go. some days like today i havent gone no urge but im not stressing about it i had a load of peanuts last night bad move wont be doin that again. my only advice to you is to try and get your anxiety under control not easy i know but its a huge part of this illness anxiety causes the constipation constipation causes anxiety and so it goes on. let me know how you are i wish i knew about this forum last year when i was desperate and thought i was totally alone


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## amb1048 (Jan 9, 2018)

Hello, Pammie!

I am doing a little better. I actually ordered a SIBO test online, took the test when I got it, and had results 2 days later. I am now being treated for SIBO (my hydrogen levels were double what they were supposed to be) using Xifaxin. After years of doctors running me around and hating life, I am hoping that by me reaching out to you lovely people and becoming my own advocate that I will be able to control this. I am only one day into the antibiotics, but I will keep you all posted once i get through the whole regiment.


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## pammie007 (Jan 22, 2018)

thank



amb1048 said:


> Hello, Pammie!
> 
> I am doing a little better. I actually ordered a SIBO test online, took the test when I got it, and had results 2 days later. I am now being treated for SIBO (my hydrogen levels were double what they were supposed to be) using Xifaxin. After years of doctors running me around and hating life, I am hoping that by me reaching out to you lovely people and becoming my own advocate that I will be able to control this. I am only one day into the antibiotics, but I will keep you all posted once i get through the w


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## pammie007 (Jan 22, 2018)

pammie007 said:


> thank


thank goodness for that i was getting worried you sounded so desperate i know that feeling well. trouble is you cant discuss it with friends and family unless they have been through it they have no idea what your goin thru and not bein able to poo sounds so bloody lame especially when there are people dying out there but when your goin thru it it feels like you are dying and you cant see a way out. keep in touch and let me know how you are going


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## saddlecub (Jan 27, 2018)

I was in your spot a few years back. The bloating was horrible. I will go through the stuff that resolved it for me...

The SIBO will likely come back in 6 months if you don't modify your diet!

(1) Plenty of water. Not gulping, sipping all through the day. I got sick of water and used powerade ZERO diluted by 1/2 with water.

(2) Walk 10 to 15 minutes 2 or 3 times a day.

(3) Check your stress (stressing about the IBS)... it seriously contributes. Relax in whatever way possible that works for you.

(4) Chuck as many of the carbs as you can. Plenty of the foods on the low FODMAP list cause me problems.

(5) I went with chicken, LEAN beef, wild-caught salmon (canned, fresh baked), eggs for protein.

(6) Potatoes for carbs, just regular russett potatoes, mashed or baked... NOTHING ON THEM.

(7) An herb salad... just your basic organic greens (I can give you the list)... with some walnuts, olives, carrots and a little olive oil and red wine vinegar.

(8) No supplements whatsoever! No coffee, no green tea, chamomile was ok for me.

Stick with that for 2 to 3 days.

Once you find a happy place you can slowly start adding foods back one food at a time for 3 days before adding any others.

Do not cheat. Do not assume anything.

Once you find a food baseline the pain will stop and the stress will come off and your gut won't overreact.

For lack of a better way to phrase it... the constipation is like a plug and it has to work its way out before the new, less irritating food regimen takes over your gut.

You are probably getting a source of FODMAPS that you don't realize. The bacteria in your gut feed on it and that's what causes the gas, bloating and constipation.

Also when you start this, be prepared because your gut bacteria will remodel and the bad bacteria will die off and release toxins. This will not be pleasant. But you know you're on the right path because the bloating will continually subside.


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## Crys1532 (Jan 19, 2018)

Let me know how the sibo test works out. I had the fructose breath test done and it was negative an I SWEAR I have sibo based on my symptoms and yours seem to be similar. I have through research though found that there’s two kinds - the fructose kind and the methane kind. My symptoms align more with methane but I can’t find a place to test for that. Does the test you ordered test for the methane kind?? I also can’t find anyone dr wise who even believes it exists, let alone treat it. And from what I understand it’s nearky impossible to eradicate it without antibiotics. I’ve done the diet with zero sugar and carbs which was incredibly difficult but it did nothing. I’m sure it wouldn’t though without the meds. Keep me posted please.


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