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Hi everyone I am new, in pain, and hoping for some answers


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#1 Leo41

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Posted 14 May 2015 - 02:32 PM

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Greetings all.... sorry but I am going to be graphic.

 

My name is Ray and I am a 45 year old male. I started with something I thought strange.. a slight amount of clear mucus at times when wiping. That was in 2007. I have suffered from indigestion and heartburn a little longer than that. I use prilosec for the heartburn and it has kept under control all these years. 

 

Maybe a year after I first noticed the mucus I had my first "flare". Horrible trapped gas pains, very noisey moving slowly all around and through my intestines. I felt constipated, but like something was stuck maybe midway down the decending colon on my left side. This went on for days, laxatives gave me the runs, and no relief. Slowly over a week or so this went away. As time progressed this would return at times, and I'd feel a pinch in the left lower abdomen.. maybe an inch inwards from the left hipbone wrapping around the left side. I also started noticing a weird smell to my stool.. I describe it as more smelly than before mixed with pencil lead. 

 

I would go months with no problems, just occasional pinching in the low left area, but at the time was drinking too much for my own good, so figured it was some of that. About 1-2 times per year I'd have issues, it would last a few weeks. My stool would go thin, runs, eel shaped, normal, pencil, mucus, etc.. all over the place during an "event". I did not have the same gas thing as before, I would hurt in that area.. stabbing, pinching, like twisting a knife, then it would go away for hours. As this went on I started to notice when it really hurt sometimes I would start salivating. I mean to the point where I would have to spit into something or it would run out of my mouth. This would come and go as above... 2-3 times year, lasting 2-4 weeks when it hit. I never really felt "good" anymore, but most days I was still ok to function. I was still drinking a good bit. Every other night.

 

More recently (last year or so) these events have gotten worse. The salivating turned into vomiting sometimes when it was really bad at times. I have had blood after wiping maybe 3-4 times in all these years, very bright and one the first wipe, very little mixed with the stool, but that is it. The events got worse when they occurred, same area... left lower ab.. but now would sometimes shoot to bellybutton, or wrap around my back in that area. It became much worse.. it would hit in waves.. like I would imagine labor conractions would feel. Peaks.. then less, then peak, etc every few mins or even seconds. Sometimes I would start salivating, throw up and feel better. Still would come and go... this went on. 

 

Recently I have taken a desk job as opposed to walking and standing. It is a great job, a dream job of sorts. Since then (last October) I have had a LOT more problems. since then I am in my 3rd flare up. It is now May 14... this flare started March 8th. It has evolved from the above to horrible cramps/spasms in the same spot. When they start they last for about 1-2 1/2 hours. Same peaks and valleys, but hurts much worse than ever before. I really thought maybe I had Crohns.. I remember being fine... walking into a store, coming out and bam... pain so bad I could barely move. I waited a bit as no way I could drive, and ended up throwing up into a cup while driving (that was a first). Since that day (mid March)... I am getting this nearly daily. For some reason right about 1-2 pm in afternoon, right after returning from lunch to my desk it would start with the fluttering, then the pinching, then the spasming. I would have to get up and walk outside, maybe throw up a few times, in an hr or 2 it would subside enough for me to sit at my desk and function. I stopping eating at lunch. Still happens. I don't know if it's in my head.. the worry itself of having an issue today, or something to do with my colon moving contents at that time. Rarely do I have a day without this, sometimes not quite as bad, some days it would come back in the evening too. At this point when I would vomit in the midst of the pain/spasms I would get instant relief but instead of as it was before.. the pain would return within minutes. it used to go away and stay away after the vomiting.

 

Since March I have lost 35 lbs, 15 just in the last 3-4 weeks. Stools are something like this... avg day.. wake up at 5am have to go.. maybe pencil, maybe just about normal. Lay back down, makes me get back up 10 mins.... then loose, watery stool. Lay down, get back up 10-30 mins... urgent.. straight runs. Maybe mid day feel like I may need to go.. mucus. Some times I will have the urge to go badly, and barely make it to the bathroom, explosive runs. I assume if this is IBS it is IBS-D. Constipation is really not an issue. I mean there are also many times where I have the urge, but cannot go. If feels more like the colon (in that same spot) is swollen shut inside. This really only happens during a flare up, or currently... off and on for the last 3 months. I have not had any alcohol of any kind since the end of Feb. 

 

About a month ago I got my new insurance and went to a GI specialist. After reviewing my symptoms he said it really sounds like IBS, and gave me Bentyl 20mg 2x per day. It helped some, but don't like the way I feel on it. The above episodes cut back.. from daily to maybe just light spasming for a few days, then I had a full blown miserable as stated above day.. with the vomiting, all of it. The doc said go to 3 times a day on the bentyl. He did set me up for a colonscopy until my insurance company told me it is full deductible and I have to pay the $2500.00 for the test. I had to put it off a couple months.

 

Now I am at wits end. The horrible 2 hr events are happening 2-3 days a week at work still, right at the same time.. 1pm- 3pm. Sometimes early morning. It is effecting my work. I am hardly eating because eating more makes it worse. I swear this is some in my head... if I am stressed or make a mistake at work.. as I learn of it the spasms begin. If I am having issues.. anyone talking, moving.. even a bad thought turns into a tight bad spasm. I have read about the brain to gut connections and its issues. The bentyl helps some yes, but makes the pain harder to deal with... makes me anxious and panicky when this starts. 

 

I went back to my GI yesterday. He of course was a bit frustrated I had not had the colonoscopy yet, told me I was manic because I am now freaking out over this, worried for my job, and it just will not stop.. go in remission. Asked me if I was a drug addict withdrawling from something???!! When his bentyl has made me more anxious and panicked feeling. He now says the vomiting just doesn't sound like something I should be having.. doesn't make sense to him. That inspired confidence. He put me on Levbid 2 times per day, and told me to use the bentyl too if I have an issue. Told me I need something like Zoloft to calm me down, but he does not prescribe those type drugs. I had thought that was sometimes used by GI's for this. He looked at me like I had a hole in my head when I said something about the gut to mind link, and breaking it.

 

That was yesterday. I started the Levbid last night. Besides the side effects (same as the bentyl so far but a touch more intense in ways) I felt great this morning. A little pinchy this am but it seemed to hit a brick wall and just stopped. Very wholesome feeling in the belly all morning. At lunch I did not eat as normal. Walking back in the door a little pinchy. Then just as normal and on cue it started to flutter, then light cramping. I popped my first bentyl of the day. It was really trying to spasm for maybe 45 mins. It got maybe to 30-40% of what it normally would then has subsided since. So the same "window" of time, but not as bad since I am now on BOTH drugs. God I hope this will stop. 

 

I called my doctor about the Zoloft and he tells me to go see a shrink, and gives me a phone number. I don't know if I should follow this up or not. At this point I am so confused.

 

Sorry for the long post, but I wanted to try to detail as much as I could reasonably.

 

Any opinions, insights, advice, whatever is appreciated.

 

One thing I forgot to mention... I was diagnosed with E. Pylori infection on the "referral" visit with my primary doc when he gave me the referral to the GI doc 5-6 weeks ago. I was given Clarithromycin and Amoxicillian for 14 days for it. Yesterday the GI did do a Celiac panel which I will get results on in a week.

 

Ray




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#2 jaumeb

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Posted 15 May 2015 - 05:33 AM

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Thanks for sharing your story. Interesting that a sitting job worsened your condition. This makes sense to me and it is also my experience.

 

You will need to learn a lot and educate yourself to navigate this situation. Keep participating in the forums and reading about other people's problems and remedies.


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#3 Leo41

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Posted 15 May 2015 - 02:11 PM

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Well.. we'll see how this goes. Today is my second day on the Levbid, and honestly I do feel much better than I did on the Bentyl. Tiny little pinches again this morning that stopped without any real issue. A hard to describe "better"/almost normal feeling in the bad lower left colon area that I have my problems in. Almost normal stool as well. 

 

Lunchtime came and I tried a small (3oz) piece of baked chicken, nothing else. Now this is better than my normal... nothing. Couple slight hints of some pinching, then would stop.. repeat. This was during the normal 1-3pm window that seems worst for me. Today I did not have to take a dose of Bentyl too as I did yesterday. 

 

Hopefully the day will keep rolling along. My GI did say something like the Levbid takes a few days to build up in your blood, and this is only day two. How come I hate to even feel hopeful... but I do feel better on this stuff so far.

 

As a side note... I called the pyschologist my primary referred me to, and set an appoint. 4 weeks out... sure glad I don't need him critically. Figure I will run all this past him and see what he says. Does anyone know what type drugs are used to treat the mind-gut pathway thing we have with IBS? Or can you point me to any good studies or info on that. 

 

Thanks,

Ray



#4 jaumeb

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Posted 16 May 2015 - 09:42 AM

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I've seen others mentioning amitryptipiline for pain and D.



#5 Leo41

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Posted 18 May 2015 - 09:37 AM

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Hello again everyone. I am noticing a good bit of reads on this thread, but really not a lot of comments and responses. I am thinking maybe many people come here and read.. hoping for info, similar symptoms,  and help. So in that vein I will try to keep updating this in hopes it may help others.

 

I have been on the Levbid about 4-5 days now. I can honestly say this drug is much better for me than Bentyl. I still feel some light pinching, but so far that is about it. Generally I feel better than I have in months. I am noticing a large difference in bowel movement on it as well. Not even sure what is "normal" anymore but I am down to maybe 1 BM daily now, except for Sunday morning which was a few... well formed/normal... then 2x of "bits and pieces". Also fair to say Saturday I went to friends cookout/pool party and had a whole piece of chicken off the grill, and a half an ear of corn (cut off cobb with a knife). I knew I should not eat the corn but just could not resist. Another weird thing of note.. getting in the coldish pool water (79 degrees F) once my abdomen was in that cool water I was pinchy.. as if the cold was making the colon twinge. 

 

To date only Friday have I had to take a Bentyl along with the Levbid to keep the spasms at bay. Back at work today so we'll see how the afternoon goes. Usually at work 1-3pm is my bad time (which tells me how much is anxiety driven), this really just does not happen on the weekends in the same "window" of time.

 

The last 2-3 days I have only dropped 1 lb, which is better than weeks ago. I am eating a little more now, but still keeping it very easy on the gut. Also I have had very, very little wheat the last week. Should have results from my Celiac test this week too.

 

If anyone out there has symptoms like mine, is on Bentyl, and is still having problems ask your doc to let you try Levbid. For me it has been so worth it so far. After my first couple days the side effects (which are basically the same as Bentyl) have lessened. At this point I would say they are a good bit less than I felt on the Betyl.



#6 Cmakris1234

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Posted 18 May 2015 - 06:29 PM

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Hi,
Well I thought my problems were miserable but yours are extremely intense and very hard to deal with, you definitely need to get a colonoscopy and probably a video swallow. Blood in your stools can be very serious and something you definitely need to look into.
I was prescribed the same drugs as you to try help with my problems but I had no relief from any of them.
You mentioned you cut back on drinking, I've noticed that when I consume alcohol it makes all my symptoms worse so I try to avoid it at most occasions.
I've tried eliminating diets where I cut out all seasoned foods stuck with a very bland and easy to digest foods and I started drinking aloe Vera gel and it has helped but I will get random flare ups out of the blue but they aren't constant like they used to be. I did the diet for about a month and I was feeling better but I started trying other foods red meats and salads which are harder to digest and I was ok for about a week and then it all came back so I think I'm going todo the bland diet again for a month it sucks but so far that's the only thing that has helped. Side note even when my tummy is not feeling bad if I eat any meal even in my bland diet my tummy hurts so I used to smoke weed for my pains in the past and I tried it again and now that's the only thing that helps me eat or get through road trips or get through traveling without out it I would be stuck inside and not Abel to eat so currently that's my only remedy that helps numb the pain and get me through my days. I just take a few puffs and my symptoms are hidden immediately.
You were also thinking about seeing a shrink for the whole mind tummy pain connection, to tell u the truth I don't feel like I'm a stressed out person or worry all the time but because of my Random flare ups and urgency to run to the bathroom I do get anxious and panick and stressed when I leave the house but I feel like there is no way to really help that bc I constantly am feeling off and worried when's the next time it will hit. Plus I don't want to have to start taking all sorts of prescriptions for the rest of my life they all have way too many side effects and it's not worth it to me.
Hope I helped somewhat
Christina

#7 Leo41

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Posted 19 May 2015 - 09:58 AM

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Christina,

 

Thanks for the taking the time to give me some input. Yes, the blood was always my biggest concern, but my GI does not seem too concerned about it tbh. All in all it has been maybe 4 times in maybe 6-7 years. Was always bright red, only on the toilet tissue... maybe first 1-2 wipes. Very little if any ever in the stool when this happened. I also know I have an internal hemorrhoid.... so that may be it. But yes, we are planning the colonscopy, and most likely an upper GI scope after. Sucks going $3000.00 in debt for it though.

 

Alcohol... yes I entirely gave that up 4 months ago completely. I do not plan to ever take a drink again. It is a huge trigger, I was very stupid for a long time. 

 

I am a good bit more chill this week than last. I do blame a bit of it on the Bentyl... that stuff had me jacked up, anxious, agitated... then when the pain started.. freaked out and panicked. The Levbid to me is much better in that way too... not near as anxious. I know exactly what you are saying about starting a med and then having it for life. My main concern as well. Very interesting though how many suffers of this end up with anxiety issues. I wonder if it is we are the nervous, worrying sorts to begin with (to end up with this), or if it just wrecks anyone's nerves having to deal with this. Either way though if it means Zoloft or something to keep this away I would have to look into it. 

 

I do promise to come back and post what the shrink tells me when I go and ask his opinion on all this. Scheduled for 6/11/15.

 

 

UPDATE... Yesterday, Monday...  At lunch I ate another 3-4oz piece of baked chicken only, as I did last week. No spasms or anything after lunch (5 days on Levbid), however.... I do also have GERD... the pressure/heartburn/pain that started shortly after was bad. A side effect of the antispasmodic drugs. How bad does it suck to have something that helps finally, but that jacks with my GERD and at times causes a different fairly bad pain. I am hoping I can come off these in a few more weeks. I cannot see being able to take either Bentyl  or Levbid daily longterm (dammit!)

 

Other thing of note was the bathroom visits. Did not really notice when on Bentyl a difference or "slowing" of the bowels. On the Levbid is a different story. I have slowed on the BM side of things. My IBS tends to the D side, but is not always, and most times not bad (as far as runs go), but often I go a little... 3-5 times/day. Levbid I am down to 1 time per day. From Saturday night through yesterday had no bowel movements at all, but then again no feeling of having to go either. Yesterday late I started to feel some light discomfort in the front of my bowels and left side. Tried to go... drops of mucus only. 

 

Last night took a spoonful of coconut oil (fat being a natural laxative in ways, and realizing I have not eaten much fat the last week at all). Went to bed at 11:30pm... woke up at 2:3am... bad pains (but not the normal ones).. drank some water and passed a lot of gas (had to work itself through). Then a smallish BM, then 5 mins... runs and loose (don't know how that happened with no colon spasms), and everything cleared out. I had thought to stop the Levbid for a day, but after that this morning I am continuing. We'll see what the stool is like over the next few days. 

 

 

Ray



#8 Leo41

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Posted 20 May 2015 - 10:40 AM

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Adam,

 

Thanks I am checking it out. The only things I drink now are water, and aloe juice. Aloe does seem to help some, but was not enough for me. Probiotics... I wish I could get the real scoop on them. I recently switched to the Pearls you can get at most stores, as I had read some people swore by them. Only been on them 2 days, and the spasms had stopped (from the Levbid) by then. I may look into getting some straight aloe vera gel.. which I think I am seeing on the site.

 

 

Update... another day and a half have passed. Pretty much the same... Levbid 2 times/daily. No real spasms, yesterday 3-4oz baked chicken at lunch... no problems, no spasms, and no heartburn either. Felt so good going home last night was thinking I am going for a walk. Literally getting out of the car and walking up to the house started a little pinching.. then was like what I am thinking, not ready to walk yet. Still though, has to be a good thing that I actually felt good enough to think of doing it, I guess that is progress. If nothing else this IBS is teaching me patience, and to go slow. 

 

After that I actually feel a little crappy and pinchy, almost a few very light spasms... first time since maybe Friday last week ( about 5 days ). Fair to say I ate a couple pieces of white pizza Monday night with some drizzled balsamic vinegar. Also took the coconut oil that night too (mentioned in post above), due to no bowel movements in 2 days. It may have well been this, which sucks. I had been feeling so good I had to have a favorite of mine. It may be that my diet will have to bland/boring from now on. Hoping that is not the case. Even 4 months ago that same pizza would not have given me any issues. 

 

So back to bland... we'll see what happens next few day.



#9 Leo41

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Posted 22 May 2015 - 08:35 AM

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Well... it's Friday, and here is an update..

 

Last report was Tuesday I believe. Current med is still Levbid .375mg twice daily. Also using the pearl probiotic daily, 4 days now.

 

I have had only 1 light cramping day with an hour maybe of very light cramps (lower left as always). I am still liking the results of the Levbid, but am having some discomfort this morning. I can't see this being used by someone who has IBS-C, this morning I feel pressure, full, and bloated. With a constipation type feeling. 

 

Tuesday morning I had D after feeling slightly constipated for 12hrs and cleared out. Wednesday had a couple times with a smallish amount of normal/small to loose-ish stool. Thursday (yesterday)... I went 1 time, a small, thin piece, nothing else. This am... felt constipated but not much urge to go, then a couple small lumps of mucus with a dot of bright red blood inside the mucus. Just now (4hrs later) .. slight urge... medium sized lump of mucus, couple smallish pieces of loose (not what I expected) stool mixed with mucus, no blood. Slight relief. 

 

There is no question Levbid has slowed my bowels, and is giving me the feeling of being full in the colon, and some contipation type discomfort. BUT... the bits of stool I get are now mixed with mucus, and are not hard or visibly constipated in appearance. I am guessing my colon is swollen again/imflammed... and that is giving me the "feeling" of constipated discomfort. 

 

At least the cramps are not happening. Discomfort is better than pain I guess. 

 

Weather was great so I decided to take a walk last night after work. Good news was I felt good enough to do it. Bad news was right at the 14 minute mark I fell flat. Like a battery unplugged, has to be the Levbid. Then for 30-50 mins after felt kinda bad, like a bad heartburn attack. 

 

My diet has not really changed, still eating less than I should and being very very careful. Though strangely I have not lost any more weight in the last 4-5 days.



#10 Leo41

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Posted 26 May 2015 - 10:54 AM

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Update....

 

It's now Tuesday morning, giving my update for the last 3-4 days. The constipation/uncomfortable feeling continued Friday night and was getting pretty bad. I bought some Miralax in case needed. Took a big spoonful of coconut oil, skipped my Levbid dose Friday night (to try to get things moving), and also stopped the probiotic pearls. After reading some people had constipation on probiotics. 

 

Early Saturday morning woke in some pain, had some gas. Tried to go.. nothing but mucus. About 30 mins later began to go, after maybe 90 mins had gone 2-3 times, and was totally cleared out, such relief. Then light spasming began for maybe 2 hrs. Of course took my morning Levbid at that point, and was SO glad I had not taken the Miralax.

 

After the cramping, ate some oatmeal, and within about an hour felt great. At that point decided to go to a family cookout with the family. Had no real issues after, just some light pinching in lower intestines off and on. Here is where it gets weird... The smells... could not resist... ate a hamburger off the grill on a bun, with a hit of ketchup. Also had (know I should not have) about 2 tablespoons of baked beans, and a twice baked potato (no skin). 

 

Really thought I was gonna pay. No problems Saturday night after. Sunday morning woke early had a nice almost normal BM. Light pinching in my lower left normal area for maybe an hour. Ate oatmeal again for breakfast. Maybe 3-4pm had another nice, NORMAL BM. After this I cannot express how good I felt for hours... totally normal, fantastic actually. Maybe about 7ish startng to think about the coming work week... some decent spasming for an hr or so. Broke out the heating pad. (and some docs think there is no brain to gut connection.... sheeeeeesh, really?). 

 

This morning no BM, no urge. On the way to work, as is normal for a beginning work week morning, had some pinching which lasted about an hr, then fine. I brought oatmeal again and had it about 9:30. Be leaving for lunch in a few, undicided what to try right now.

 

So... It seems the probiotics are part of the constipation. I will not be using them in the near future any longer. I am also wondering if I needed more fiber, and the oatmeal is helping with that. I tried Psyllium husk fiber before as it is suppoed to be the kind to use for lower left abdominal pain with IBS. I did not like it, consipation, bloating, pain. The oatmeal seems about perfect. Also wondering if I need to open my diet up a bit (the hamburger).. maybe the lack of eating, and lack of bulk is helping the spasms continue. Just don't know.

 

Also the "constipation" I speak of I honestly do not know if it is real constipation. What I mean is when I went it was not hard or compacted. When I could not go for days I would have plops of mucus, and/or tiny pieces of stool. It was (and has been in the past) like my left decending colon was so jacked up it was inflammed closed such that nothing but mucus can get by, not even gas. Then... it just starts to let up...gas and stool passes, mucus stops. It is weird, but it is like this whenever I feel constipated with this. I never have compacted stool.

 

Of course other times after runs the next few days can be eel, or even square sided stool.. which to me has to be from inflammation and internal swelling of the colon walls. Does anyone else get this?

 

As a last side note my test came back negative for Celiac disease late Friday.



#11 Leo41

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Posted 06 July 2015 - 08:56 AM

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****** UPDATE  7/6/15 ******

 

 

Putting up an update for anyone who has been following my story.

 

Quite a few things have happened, and many things I have tried as well... much of that is spread in other threads. But overall all my symptoms are much better than when I first began this thread. It still bothers me that I have not gone into pretty much full remission as I had in the past from flares. If i slip up in the least... even slow taking a med or supplement it is back.. though not as bad as the above posts, but still... no remission since March 8th... that's a long time.

 

Overall though I am much better than I was, only really went into medium spasms maybe 3 times in a month or so. Only 2 times vomited (was daily). 

 

 

I have a trip planned to the beach 13 hrs away in 10 days. I am going with my daughter and have to do all the driving so I haven't yet started the Remeron I was prescribed, plus don't want the weight gain at this point... so that was shelved for the moment.

 

 

Either way though what I am currently using is doing very very well. If any of you happen to have my symptoms I'd encourage you to try these things. I also am going to list my very limited diet. I could likely expand this but for now I am happy with the weight loss I am seeing. Some notes... "supposedly" I have no problem with wheat but I still stay away mainly. Dairy has never been an issue for me. 

 

 

upon waking....

.375mg  Levbid  -  1 gram L-Glutamine  -  700mg GABA  -  133mg Magnesium Citrate

 

 

30 mins later....

1% milk with 1 full scoop high quality whey protein

 

8:30am....

large hot cup Heather's peppermint tea

 

10:00am...

roughly 1-1.5 cup of oatmeal (plain, or a drop of honey)

 

11:00am...

medium cup Heather's fennel tea

 

12:30-1:00...

133mg  Magnesium Citrate

 

1:15-1:30...

4-8 oz piece of grilled chicken

 

2:00...  

large cup Heather's peppermint tea

 

3:45 - 4:00....

cup of yogurt

 

5:30...

either 20-30 mins of walking, or 4-8 light sets of weight training

 

6:00...

another protein shake 

 

7:30...

.375mg Levbid   -    1gram L-Glutamine   -  700mg GABA 

 

8:30...

light dinner (chicken & rice, chicken noodle soup, salmon, etc)

 

9:00-ish...

133mg  Magnesium Citrate

 

10:30... 

Fennel tea for bed

 

 

This is working wonders for me. I know it is not just one thing either. I have seen "steps" of improvement as I have added each. The L-Glutamine seemed to bug my tummy at first the first 2 days or so, then it stopped. I noticed a large improvement when I added the magnesium, then even more when I took out the fiber, and more when I added the GABA & L-Glut. 

 

To me the magnesium is huge in helping with the spasms, I had read low dose when absorbed through the colon it actually calms it, and helps restore normal contractions. Thing is if I was not on the Levbid I could not take it. Even with Levbid twice daily (which would block me up in just a few days alone) I still get some runs here and there in the morning because of the Magnesium. But if you are on Levbid, Levsin, or even Bentyl you should be good to take it. Even 1 daily would help I'd think, I take 3. If you are C prone IBS with cramps or spasms I'd be all over daily 400mg Magnesium Citrate.

 

As a final testament to my morning supplements.... on the weekends I am bad, I tend to sleep in. If I do not eat I get pain.. so usually get up do my meds, then 30 mins protein shake, then back to sleep. Sunday AM I didn't.. just slept.. til 11:30. Woke up hungry and hurting (you now where). Swallowed my morning pills... within 15-20mins pain had subsided, but was hungry and needed to eat, but not in pain. In the past if I allowed this to happen I would be in full spasms. 

 

Anyway... that's where I am now.. well that and 55 lbs lighter. Update you all after the beach trip.

 

Ray



#12 Leo41

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Posted 28 July 2015 - 02:32 PM

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Hello all.... I have another update to post...

 

Well the beach trip has come and gone and here is what happened....

 

I was concerned (of course ) about how it was going to go down, basically the scenario was... a 13 hour drive in a rental car with my daughter (15) to the beach in Maryland. Staying at a small beach motel, and visiting with family who live there for 10 days, then return 13hr drive. During the plans of course were fun and excitement in the ocean, on the beach (with no restrooms anywhere close), walks on the boardwalk in and out of shops, rides, games, etc.

 

Now I have done all this before with IBS over the last 2 years but there are some differences now. My symptoms have NEVER been as bad as this year. All that is listed above so I assume anyone reading this knows the history being this deep in the thread. Each of the last 2 years I had issues... 5-8 stops, some over 45mins on the toilet last year as a flare nailed me 2 hours into the trip. 1 day I stayed in the room, and a few nights from pain and D. At this time I did not know I had IBS, had no medicine or any knowledge how  to manage this.

 

So that said I was not overly concerned this year as the symptoms are much more managed now with what I have learned and what I take. I did make the decision to come off the Align-generic probiotics that had been doing well, just because I did not want to risk them turning against me.

 

The drive up I had premade oatmeal, and my trusty whey protein and milk (yes I know diary but the stuff gives me no problems), and ALL my meds and supplements. The drive was no issue, no pain, no issues. The complete list above in this post is my supplement and med routine... this was continued exactly the whole trip.

 

Our normal routine began... wake up around 11:00am. I would normally get up feeling a BM coming around 6-7am. Feel slightly constipated for a few, then everything would start fine. Not normal BM's but on the normal side for me. (slightly smaller to smallish fairly well formed pieces). Then I would just stay there.. after maybe 5 mins I would get round 2, just a little looser, than another 5 mins round 3. Sometimes that would be the end and the same, sometimes it would go to diarrhea or close. This I consider "normal" for me on a good day. Then most days without fail I was good for the rest of the day. Sometimes I would have a little bit (bits) 1 time in the later evening. Then the beach from 12:00 - 1:00. We go out, work, and ride the waves all day. Come back to the room, shower, eat some protein and oatmeal, then hit the boardwalk. Usually eating badly (dinner) while there. I drank no alcohol, no soda, ate no ice cream, and tried to stay away from fried foods. 

 

Now also I was on vacation in my favorite place so many times I would bend the rules. I had white pizza a few times from a couple places. I had cheesburgers 2 nights. I had these very awesome chicken and pretzel wraps. I always took a bentyl and a big container full of water to the beach. I would throw 3-4 Heathers peppermint tea in, and let the sun make me sun-tea on the beach. Overall was fanastic, but yes I did have some pinches and pain here and there but no true spasms. I would have the tea and bentyl ready if anything began. I have pain and issues if I do not eat frequently so that was a bit of a problem on the beach. I started to get a real breakfast every morning ( 2eggs, 3 strips bacon, lightly fried home fries). This I found to not cause much if any issues (at least the first 6 or so days of the trip, see below), and would keep me filled all day on the beach. 

 

I even had to take some ibuprofen because my back was hurting from the motel bed. After I would be pinching, but did not have a choice.

 

As the trip progressed I did notice I was not doing quite as well. Towards the last couple days I would wake hurting, take my first massive onslaught of supplements, and a levbid... within 30 mins most gone, then after eating normal til some pinching on the beach in the afternoon.. pop a bentyl, drink some tea. I do wonder if the benefit of a week worth of those probiotics slowly wore off, and how much was food choices I would not normally make. How much was a few 600mg ibuprofen does? I wish I knew. 

 

The drive home I had some pain, and at one point was thinking I may vomit. Important to note here that that day I did not take my morning Magnesium Citrate just as precaution to not have any D for the drive. I made a protein shake, took my magnesium pill and honestly went away for the rest of the drive. Still did not have to pull over to poop not a once. 

 

I am not sure if coming off the probiotics, or the bad things in the diet reworsened things a little, likely both. I am now back and back to my normal routine. I plan on restarting the probiotics tonight. I am only a touch worse at this point than I was before we left for the trip, I expect to be able to calm that down fairly fast. 

 

In a nutshell all the stuff I am taking and diet has radically improved where I am compared to only months ago. The stuff works. And with knowledge now, and a big bag of weapons I am more equipped to handle this IBS battle, which is way better than having no clue like in the past. If you had asked me in April if I could have done any of this trip I would have laughed at you... then thrown up. 

 

 

Lastly... I am not sure if anyone cares lol, or is following this thread anymore. If you are and would like me to continue to update it, so everything is in the same place please leave a simple "yes" comment. I am doing this (documenting progress) to try to help others. But if no one has any interest there is no point. 

 

Thanks,



#13 jaumeb

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Posted 29 July 2015 - 02:46 AM

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Yes. My ibs is completely different from yours, but I read your thread anyway.

#14 funnigurl13

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Posted 14 August 2015 - 03:05 PM

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Yes Leo, how are things going?



#15 Leo41

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Posted 17 August 2015 - 09:44 AM

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Hi Funnigurl13...

 

Thanks for asking :) 

 

Things are going very well actually. I have continued with the above, and still do. I have not yet gone consistantly back on the probiotics, but intend to. I have dropped a good bit of fat, and am actually weight training again, something I could never have done months ago. Overall I feel good, but still have little issues of discomfort here and there, but they are managed with what I take and the occasional Bentyl. Stool is not what I want (totally normal), but I have little if any mucus anymore, just smallish bits and medium pieces. However is better than D or C. 

 

The past week I have been a little worse than recently (not bad, just not quite as good)... with no real changes in anything.. which shows me the ups and downs of this. Always frustrated me how I do nothing and all the sudden flare for no reason. Being consistant with everything shows me it is not me... just this IBS. I also noticed during this past week (when it was a little worse) than my BM smelled, really bad. So has to be something with the bacteria I'm thinking. I really need to get back on the probiotic.

 

Mainly my diet has remained the same... honestly more by choice than anything. I have lost something like 65lbs, and honestly could lose another 60 or so to get back to my high school weight. 

 

I guess the only that bugs me a bit is I feel like I have come just about as far as my current med/supplement routine can take me. I had hoped for full remission, and I do have maybe 80-85% remission, but you know... we always want more.



#16 funnigurl13

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Posted 18 August 2015 - 02:56 PM

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What do you think the most helpful supplement for you? I'm not currently taking any. Magnesium? Potassium? Or a regular multivitamin. I'd rather not take "extra" things.



#17 Leo41

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Posted 19 August 2015 - 08:26 AM

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Hard to say honestly, as some were added at the same time, and of course they are a bit tailored to my main symptom (spasms/pain). 

 

Aside from the peppermint tea from Heather's, which has been huge for me with the spasms/pain, I am thinking the magnesium citrate. I guess it could be placebo but I usually feel great after taking it, and had helped to stop spasms. As for "general" improvement I am thinking the L-Glutamine. That I would recommend anyone to try as it has "supposedly" the ability to cure leaky gut, and decrease intestinal inflammation. Also has helped me, I have no doubt there. 

 

If you decide on magnesium make sure you have read some of my comments on it.. it can give you D if you are prone, unless you are on meds that slow motility. 

 

I get what you are saying but I would say this... I now have quite a few pills/powders I take numerous times daily now. Only 1-2 are prescribed meds. I am doing very well. I intend to bring more in (potassium is coming, some zinc stuff I can't remember the name of atm, perhaps that intestinal formula we hear about on the forum, etc) some I will remove. The point though is it is really helping. I can work now, I can go places now, I can actually think about getting fit now. I got this not from doctors, but by researching and experimenting and adding things. Don't be afraid of that.

 

Multivitamins... never did well on them on the IBS side. 



#18 Eawright75

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Posted 22 August 2015 - 07:05 PM

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Hi Ray. Thank you for sharing all you have been through. But I'm sorry you've had to go through it!

My symptoms started one week ago and this was the first time I've ever had these symptoms. It was the worst pain I've ever felt and I've had two sternotomies for heart issues. Most of my symptoms are similar to what you described, but without the excretion of mucus or blood.

I went to see a GI doc on Thursday- I work in healthcare and know and trust him. He prescribed Bentyl and Metamucil. Thankfully most of my symptoms have abated, but I continue to have pain at my rectum/anus. I know my symptoms are caused by stress, and now that I've started having them I am very sensitive to foods and drinks that I've been eating and drinking regularly for many years. I am overweight, but have been losing weight, unrelated to the IBS, over the past 6 month. I was a regular diet soda drinker, but not anymore. Only water, Metamucil, and tea.

The symptom that remains and is a constant is this pain in my rectum/anus. I'm not sure if it's the tightening of the muscles down there or what. I've taken many plain warm water sitz baths and that helps a little, but hurts to sit on the hard tub floor. I've listened to guided imagery for pain and that helped me relax a little. But even when I'm mentally focused on relaxing all my muscles, I still have that constant pain. Tylenol helps some and I think the Bentyl has worked for me as I do not get the spasms as much.

I'm going to start the peppermint tea you mentioned and see if that helps. Have you tried using a ring pillow to sit on at work? Does that help? I'm thinking about getting one as this past week I could not go to work at all. Thankfully I can work from home, but work is what is causing my stress so it's still a very uncomfortable workday. One other factor that is obviously not applicable to you, is that I started my menstral period the same day the IBS symptoms started. I've read that this can contribute to flare ups in women. So I'm hoping once that is completely over, maybe I'll get a little relief. Oh, and I turned 40 on Tuesday, one of my worst pain days this past week! This is a horrible disease and I hope it will not continue forever.

Seriously- thank you for all you have shared.
Beth

#19 mydogsandme

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Posted 23 August 2015 - 12:52 AM

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Been silently following your thread.my IBS is at the worst its been this year..horrible.I was going to suggest l glutamine but see you recommend it yourself.I've been on it for a couple of months and while it hasn't stopped my dashing/frequency problems its cut down on the pain a lot.I'm also taking mebeverine and not sure yet how effective it is.there seems to be no pattern or rhyme or reason to my IBS and so I feel out if control, which I hate.

#20 Leo41

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Posted 24 August 2015 - 08:53 AM

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Beth...

 

Nice to meet you, and thanks. So they just started like that, and you had never had any IBS issues before? That is strange. I have had IBS symptoms for maybe 8 years, but this past year had been the worst ever. I can remember my first "flare" but was more BM issues, feeling closed up inside, etc, but not really any spasm type pain at that point... just a lot of gas moving through all my intestines pain. 

 

If you are having your colon spasm yes, that pain is flat out unbearable. The peppermint tea will soothe and helps with the cramps/pinches/spasms so much. Take as much as you need. At first I would always have some, all day. Now usually 1 cup morning and 1 afternoon is enough. Get it from Heather's though... no other brand has this effect nor the amount/purity of peppermint. 

 

I remember going on the bentyl... worked.. a little. If it continues ask your doc to let you try levbid, and get on "Now" Magnesium Citrate softgels 133mg per. Try 2x daily 30 mins before you eat, or at your worst (likely most stressful) times. IMO that combo together is very powerful and keeps things moving.

 

I would get on the L-Glutamine asap as well. With that much pain, your are inflamed inside. Yeah I get it docs say IBS does not cause inflammation, but I disagree OR it is if you have spastic colon you really have a touch of Crohns and they are wrong. If that is the case we are in the same boat. Either way it helped me, if our symptoms are similar. I would venture to guess if this continues you will begin to see mucus. 

 

As for the pain in the rectum. I do notice this on occasion, but not often, and never severe. More of a discomfort/ache, and the occasional stab of pain. I would think a donut pillow would help, and I'd for sure try it.

 

Feel free to PM me if you need or want.

 

Ray







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