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Miserable with IBS
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TessTess06 posted:
Hello all - I'm 30 and suffering big time from IBS - had all the tests now going thru trying to find the right medication. My stomach swells HUGE - get asked constantly if I'm expecting. It feels like it is going to just pop. I am taking the Digestive Advantage Gas Defense along with prescribed medicine along with Miralax(everyotherday). Bentyl didn't work, Amitiza made me extremely sick, Robinal Forte caused headaches with extreme agitation. I've got to call tomorrow and see what medicine I need to switch to next. I've heard something about an anitbiotic that helps but dont have much info on it. My right side (large intestine) is usually what hurts. Any tips or suggestions would be GREATLY appreciated!!
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LilMissMerrySunshine responded:
Constipation? Because Bentyl is usually used for diarrhea - at least I thought. Or do you go back and forth?

I'll have to let someone else pick it up from here - I'm a D girl, so I'm not very good at constipation, especially if you are still having it with all of that medication.

Do be careful with antibiotics. Any can irritate the GI tract. I don't know which one you are talking about, but generally try and make sure there is an infection for it to treat. My GI doc told me in the hospital, when they couldn't stop my D, he was putting me on two antibiotics for 48 hours. If I showed no improvement, they would take me off of them, because they could then start causing the symptoms they were trying to stop. So ask lots of questions first!
 
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TessTess06 replied to LilMissMerrySunshine's response:
I'm a C girl like alll the time.... I dunno why they give me stuff for D. I also have alot of sinus infections so I'm sure that the antibiotics for that is irritating it also. I have also tried donnatal but it made me sooooooo sleepy. Thanks for replying
 
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LilMissMerrySunshine replied to TessTess06's response:
Yeah, I do love donnatol, except I'm a gonner after taking it! Maybe they gave you Bentyl for the cramps. Hmmm...I don't know enough about it.

Let me make a suggestion - have you ever asked for an antibiotic shot in lieu of pills? I have to do that...usually it takes me a little longer to get over it, but antibiotics mess up my stomach so badly, it's worth it.

Hopefully when more people find this board with the new format, we'll get someone with more knowledge of constipation. If you had diarrhea, we could hook you up! LOL But keep posting...we'll keep trying!
 
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Renny1985 replied to LilMissMerrySunshine's response:
Hey Tess-
I am wondering if you have ever been tested for Celiacs disease or other food allergies? From what I understand, these can be a BIG cause of sinus infections as well as GI issues. What tests have you had that lead you to believe it is IBS? I just want to make sure all the bases were covered. Hang in there, and yes keep posting, someone with IBS-C will eventually respond. Lilmiss and I are D ladies, so not much help there lol.
Good luck.
 
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TessTess06 replied to Renny1985's response:
LOL Thanks I have never asked for a shot with antibiotics. I'll have to remember that. I went to two different GI drs and have had the colonoscopy and the light ran into my tummy. I switched drs because i just wasn't getting the answers and relief I needed. What kind of testing is done for Celiacs disease? Not sure of any food allergies. I spoke to the dr's nurse yesterday but haven't found anything else out yet. Its just amazing to me how something like this can hurt and cause my stomach to swell HUGE. Thanks for the replies.
 
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LilMissMerrySunshine replied to TessTess06's response:
There are two types of tests for Celiac. They do blood tests, and they also take biopsies during an endoscopy. Since you've had an endocscopy, you need to find out if they did those biopsies.

We tell everyone to get a copy of all their records. So many times these docs don't tell us the whole truth, or they don't tell us anything, when someone is actually there. (For example, when I came out of the hospital, having been diagnosed with eosinthrophilic gastroenteritis, and told I flunked an ACTH stimulation test for Addison't Disease, my GI doc on follow-up told me I had just had colitis, hopefully it won't happen again, and he wouldn't even look at the stim test results. I didn't know for sure about the e.g. until I got my medical records from the hospital. Sure enough, not only did the GI doc at the hospital write a report that's what I had, the lab report was quite clear as well. My doc's report of my follow-up visit also stated I had no complaints, and I spent the entire time complaining of abdominal pain. By the weekend, I had relapsed the e.g.) I don't know what their problem is, or why they do it, but you really have to be proactive. It's sad we live in a time where we can't trust our doctors, but we just do.

If everything turns out negative, you may want to see an allergist about food allergy testing. I have not done this, so someone else will need to give you more guidance. If your insurance requires a referral, try to get one from your GI doc or your PCP. If not, ask them for one, and if they don't give it to you, do it yourself. I'm lucky to not need referrals, so I don't know how all of that works.

IBS is an elimination diagnosis, and it doesn't sound like you've gotten everything eliminated yet. Keep pushing!!
 
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MagPrincess replied to LilMissMerrySunshine's response:
I agree keep pushing

as for the bloating I can tell you I found lots of relief with Fennel seed tea which you get at a natural food store.

Also most GI doctors have you do a food journal. Have you done one? This will help you see what foods cause what reactions. This is how i found my corn intolerance.
 
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TessTess06 replied to MagPrincess's response:
Yeah, I still haven't found the relief that I need. I will def get a copy of my records. Basically they just say oh its ibs here is some meds. This last dr listened more and seemed more intent on helping but I'm still in the same shape. I don't think my ins requires referrals.

I haven't tried keeping a journal yet because I stay like this 90% of the time. I know I'm in for it if I eat pizza, alot of bread, any type of beans. I will start keeping a journal tho. I'll do anything if it means solving this LOL Thanks for the info on the tea - I will def try it.

Thanks so much you guys!!!!!!!!!
 
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MagPrincess replied to TessTess06's response:
The journal was the first thing my GI doctor asked me to do. Then said see you in six weeks. Then it seemed like forever. ANd It seemed so tedious. But we did find a corn intolerance and an inability to digest fat which makes sense since my cholesterol levels were and have been almost too low.

I am suspecting a gluten issue especially with the information that bread causes issues.

I love the fennel seed tea. it works pretty quickly too.
 
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LilMissMerrySunshine replied to MagPrincess's response:
Either I had idiots (which I did), or they were fine with what I told them. I had tried my own elimination thing - quit dairy for a week, ate nothing but oatmeal and pasta for awhile, stuff like that, and nothing helped. Based on all my reading, the only thing I didn't cut out at some point was gluten, and I didn't know about it back then.

That's probably why I didn't have to do it.
 
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TessTess06 replied to LilMissMerrySunshine's response:
It seems to me EVERYTHING has gluten in it tho. I checked some labels and was like WHOA. They are putting me on Librax. Guess I'll see how that does. Gotta find that tea! I wonder is there a website that lists what you can eat on a GF diet?
 
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LilMissMerrySunshine replied to TessTess06's response:
Oh, there are plenty of things about GF diet. If you're keeping up with my saga, I may be hopping on that train really soon. If my endo thinks it's worth a shot, I'm going to start this weekend.

I did it for a week a few months ago, before the AI diagnosis"trumped" Celiac. Unfortunately, Celiac is common WITH AI, so I may have it anyway. I no longer care.

No, you can't eat much of anything. All of my favorite foods are out. I live in the South, and shopping for it is a pain in the butt. The GF Bible is awesome, although I've only read part of it.

Basically, you CAN have all the fresh fruit, veggies, meats,etc. you want, but no marinades or anything unless GF. You have to use rice or potato flour...they make good GF crackers and bread, I had those. Supposedly Outback has a GF menu, but most of the other restaurants listed I didn't recognize, so they must be more northern or western located. I didn't have long enough to figure it out, and my GI doc had me scheduled to see a nutritionist - he just wanted me to try and get started on my own. You can tell my knowledge is pretty limited at this point.

Let's see how this new medicine does on you. Believe me, Celiac is the LAST thing I wanted. I was happy when AI came up, even though it's actually worse, but at least I can eat what I want. Now I may have both! Oh, the irony. To laugh or to cry?
 
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Renny1985 replied to TessTess06's response:
AHhh I was on LIbrax back in the beginning of my illness and it made me a walking zombie. Hopefully you wont have this side effect, but I was zoned out, tired and stoned. I hope it helps you- it is a muscle relaxant so technically it should stop any GI spasms you are having. Trudy GERD on this website is very helpful with Celiac stuff- haven't seen her post in awhile but if you shout out to her she may just respond!
 
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earthtonegirl replied to TessTess06's response:
There's tons of info online on GF shopping, restaurants & recipes. There are actually a fair number of mainstream manufacturers, like Kraft and ConAgra, that have gluten-free lists. Usually you can find from their websites by googling "gluten-free kraft", but for some companies you may have to email or call their 800-number. http://www.glutenfreemaps.com/ has a lot of restaurants, esp. chains, and sometimes I'll look up, say, "gluten-free near {zipcode}" and find restaurants that way. And there are so many recipes online. Other than GF flours and snacks I don't buy a lot of specially GF products, but it's out there - I've had pizza, pastries, chicken nuggets, mac n cheese, beer...

Basically, you can eat really well GF.. the catch is you have to plan ahead, esp if you're working with a budget. But hey, even Burger King has a GF menu now! So y'know, it's doable and getting easier all the time. Really, this GF thing doesn't bother me 98% of the time (and I went dairy-free at the same time!). If it improves your health, you're not going to care much about the little inconveniences.

I'll have to dig up Trudy's simple "crash course" for GF living (no special products needed!) but the link is on my work computer. Well, if you do decide/need to go GF, I'd be happy to flood you with more information


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