De appointment Question (Maybe too much information/gross, sorry- IBS problems)

susiestar

Roll With It
I have to change to a new primary care doctor. I am going back to one that husband and I liked but changed from due to a combination of factors including a strange ins plan that limited us to docs with-in a certain area that meant all the docs were thirty to ninety min away. It will be nice to be five min away from the doctor!

I don't know how to explain all the problems in one visit. i do feel that to get the best help the doctor needs all the info. Mostly I need IBS help. Ever since I got sick and ended up in the ER 2x in early Sept, my system is just not working. I either have explosive runs and gas like you wouldn't believe or else I am stopped up and cannot go. This flip-fops wwith 1-2 days of explosions and if I am lucky a day that is semi-normal and then 2 days of cramps and being stopped up. Regardless of what is coming out, if anything is coming out the back end, I am fighting to not vomit. I am living on phenergan. On the stopped up days I get the foulest tasting burps - they are enough to gag me.

I have done everything I can think of to do. Increase fiber, decrease fats/sugars/etc..., I have an rx for a medication that is supposed to help and it does a little but not much. I am NOT using immodium because it is generally an awful idea and half of one will stop me up for two weeks and it is painful.

When I do vomit, it is often food that I have eaten 12-24 hrs before. I feel like something is really wrong and I have NEVER had IBS symptoms this severe for this long.

Yesterday at my pain doctor appointment they wanted a sample for a drug screen. I drank a 32oz drink before we got there. I couldn't go. I then had to drink 2 20oz bottles of water and wait almost an hour before I could give them the sample. This has NEVER happened to me, and I cannot help but think it is related to the other problems. I was horribly sick after I left the dr's and it is AWFUL to be nauseated, vomiting and having stomach cramps when you are 90 min from home and have to be able to drive. I went to placed that I knew had clean restrooms and waited a lot of it out, but it was awful.

What sorts of things should I ask the dr about? I may print out what I have posted (JUST what I post, not your replies or info!) and take it to the doctor. It is bad enough to deal with migraines, arthritis, psoriasis, fibro, etc... but the IBS is just insult on top of injury, in my opinion!!!!!

Thanks for any insights, info on medications that could help (the one I am taking is called donnatol (brand name) and I take carafate to help with the acid. Oh, and gas X.
 

InsaneCdn

Well-Known Member
As far as bringing the doctor up to speed... do this ONE condition at a time. There's no way you will have time to update on the migraines, fibro, etc. plus the IBS. The IBS is the current hot-button issue. Go in prepped to deal with that one in detail. Anything else... will come out of that discussion or can wait for next time.
 
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PatriotsGirl

Guest
I am so with you. Lately I have been dealing with diverticulitis and now I tested positive for H. Pylori. I am so tired of tummy issues!!

Are you taking a probiotic? I never knew to take them. Ever. My doctor asked me if I was taking one and I told him - no, you never told me to. He said if I am on antibiotics I need to double up on them. I am also taking it twice a day normally. I have dealt with stomach and intestinal issues all my life and I am sure I have wrecked my insides because of stuff I just didn't know - no one ever taught me. Like everytime I had a BM I would push - didn't know not to. That is probably what caused the diverticulosis. Anyhow, I digress, the probiotics have literally been life changing for me. I am for the first time, completely regular and my BMs are normal. I take Florastor and it is not cheap, but for me, it is a miracle pill that I will stay on for the rest of my life. If you are not taking one now, I highly suggest you try!!

With the H. Pylori koi, I am experimenting on what I can eat. I noticed the other day when I had a whole wheat sandwich, my stomach blew up like a puffer fish and I was crampy and gassy all day. So, I am going to try going gluten free to see if that helps...

Hope you get relief soon!! No one understands that you are sick because you don't look sick, but stomach problems have really cramped my lifestyle (no pun intended lol).
 

TerryJ2

Well-Known Member
I am so sorry! You poor thing!

I, too, am having issues. I had it resolved for several yrs when I started taking acidophilus before meals and digestive enzymes afterward.
Then I had to give up milk and cheese.
Now I have no idea what's going on and I've been taking an anti-diarrheal medication, plus doing acupuncture.
I like the screening idea for h. pylori. I'll mention that to the dr next time.

So, you did check to see if your medications are making it worse, right? I can't find the original threads.
 
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PatriotsGirl

Guest
I like the screening idea for h. pylori. I'll mention that to the dr next time.
I went to my doctor about a pain I was having a little to the right and a little under my navel. When I was driving difficult child back to the sober house, it burned everytime I bent over. It literally felt like an open sore inside. doctor asked if I have ever been tested for H. Pylori and I told her no. She was shocked - I said you are my doctor! LOL I still did not believe that was the cause of my problems but I am starting to feel a bit better after being on the right antibiotics for it. It can lie dormant in your body for years and not cause any problems until one day - bam!
 

DammitJanet

Well-Known Member
I cant believe you folks with H Pylori are able to eat at all! That is what I had all summer and I couldnt even keep anything down but maybe one ensure a day and sips of diet coke. Oh and I did eat one greek yogurt a day. I was so incredibly sick that my stomach was on fire and felt like it had a knife cutting into me constantly. I was convinced I was having pancreas issues. I do have lesions in my stomach though as well as the H Pylori and will now always test positive for it.

I think do to the junk I went through all summer that my tastes have completely changed and I can now only eat a portion of what I used to be able to eat. I have lost 40 pounds since the beginning of June when all this started. Now dont think I am wasting away...lol. I am thrilled. I am certainly not doing anything that I can tell to lose this weight but it is dropping at a current trend of about 5 pounds a month.

Susie...you know what I would do with going to a new doctor? I would write up a "Parent Report" on myself to give to your new doctor. I have one I keep on myself but of course it is a "Janets Medical Journal" which I keep which gives my whole lifes history of medical events. I even start off with my birth history and that I have no siblings and I have now updated it to my parents are both dead and what they died from. Lists kids, major illness, surgeries...etc. Hits the highlights. I list medications and allergies. I put what medications I am currently on. I give medications I have taken and if they have worked well or gave me problems.

That way a doctor has a record of me. Now I dont expect a doctor to read that while I am there but they can have it later. I hand it to them and then I explain what I need checked immediately.
 
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PatriotsGirl

Guest
I cant believe you folks with H Pylori are able to eat at all! That is what I had all summer and I couldnt even keep anything down but maybe one ensure a day and sips of diet coke. Oh and I did eat one greek yogurt a day. I was so incredibly sick that my stomach was on fire and felt like it had a knife cutting into me constantly. I was convinced I was having pancreas issues. I do have lesions in my stomach though as well as the H Pylori and will now always test positive for it.

I think do to the junk I went through all summer that my tastes have completely changed and I can now only eat a portion of what I used to be able to eat. I have lost 40 pounds since the beginning of June when all this started. Now dont think I am wasting away...lol. I am thrilled. I am certainly not doing anything that I can tell to lose this weight but it is dropping at a current trend of about 5 pounds a month.

Susie...you know what I would do with going to a new doctor? I would write up a "Parent Report" on myself to give to your new doctor. I have one I keep on myself but of course it is a "Janets Medical Journal" which I keep which gives my whole lifes history of medical events. I even start off with my birth history and that I have no siblings and I have now updated it to my parents are both dead and what they died from. Lists kids, major illness, surgeries...etc. Hits the highlights. I list medications and allergies. I put what medications I am currently on. I give medications I have taken and if they have worked well or gave me problems.

That way a doctor has a record of me. Now I dont expect a doctor to read that while I am there but they can have it later. I hand it to them and then I explain what I need checked immediately.

That is an awesome idea!!! I was told no carbonated beverages while I am bring treated for H. Pylori so I am drinking strictly water and a little fruit/vegetable juices. I will normally suck down a bunch of water and then sip on the juice for taste. :) I was also told no caffeine, but I cannot cut coffee off completely. I have cut down to a cup and a half a day if that...I am not convinced all of my problems are H. Pylori, though - that would explain the heartburn feeling under my sternum, but not sure about the burning spot in low abdomen (which I do not feel all the time - it is really weird). I am going for a CT scan soon. Hopefully they will be able to see what is wrong. :(

Wish I would lose weight over it...but I am maintaining the same weight...
 

susiestar

Roll With It
I have taken probiotics for years, and I eat yogurt (which has them also) but it makes no real difference for me. I do notice if I don't take them, or if they get left out of the fridge (they DID tell you to refrigerate them, didn't they???? They are live organisms and they CAN die if left out at room temp - you will know because they won't work), but it is never a major dfference. Until 2 yrs ago I had IBS but it was ALWAYS manageable with mini-wheats. I ate more when I had problems and it stopped. Then that totally stopped working. THen we tried bentyl (a medicine) and it did nothing so we tried donnatol and it was great. Now? Donnatol isn't working.

I have to reschedule the doctor today because I haven't slept all night because I have been in the bathroom every ten-twenty min. I HAVE to get thank you to the eye doctor because his glasses are broken, and I have had no sleep and can't drive unless I get a couple of hours. Ugh. I will get into the doctor next week, hopefully on a day husband is home. I hate it, but it is what it is.

As for H. Pylori, I have been tested for this regularly for over 20 yrs, since I was preg with Wiz. Only 2 times has it been positive. I am the rare person who has ulcers and NO H. Pylori and no doctor EVER believes this with-o doing the test 2-3 times or more. I have major scarring on my esophagus and stomach from a lifetime of nausea due to migraines, and because as a teen an idiot of a doctor had me on very high doses of steroids for five years. I have NO idea how my mother and father didn't kill me because no teen on steroids is a fun person - add in PMS from Hades and O. M. G. !!! That and enough NSAIDs to treat someone four times my size and NO medications or cautions that the medications could/would upset my stomach, and the digestive tract is a disaster. They want to do a colonoscopy and I have said absolutely NO WAY unless they will sedate me into unconsciousness until 24-48 hrs AFTER the test. WHY? They fill you full of air so they can see what is going on - same for the endoscopy. It was the worst experience of my life - bar none including childbirth and oral surgery done that I was aware but unable to move or communicate during. The cramping was enough to have me contemplating suicide very seriously and I would rather deal with almost anything rather than go through that again. I just can't even make the appointment with-o a serious panic attack and the gastro docs just think I am a baby. No. F'ing. Way. No. Matter. What. Yes, I DO know the risks, and that is my informed decision until a doctor takes this seriously. (Can ya tell some have tried to tell me to 'get over it'? I live in chronic pain that owuld make most people cry nonstop - I don't need to add that AND idiots with medical degrees to it!)

Anyway, the NSAIDS/cortisone as a teen pretty much messed up my system for life. I actually have become allergic to all NSAIDS but toradol and I can't tolerate much of that.

PG - H. Pylori should be gone after a round or two of the right antibiotics and prilosec type medications. If you have continuing problems, ask the doctor about carafate (generic name is sucralfate). It will go in and form a physical barrier in your stomach and intestinal tract and it is a miracle. NOT cheap, but worth it. If you get tablets, dissolve them in water before taking, regardless of whether they tell you this or not. They work far better that way. Just don't take it with any other medications because t will stop the medications from being absorbed - wait 1 hr after taking other medications or take carafate 2 hrs before any other medications and it is amazing.

If your body continues to react to wheat after you have taken the full round of antibiotics, get tested for celiac disease. Don't let them fob this off, it is the most common reason for gluten intolerance and it is a major problem. I have been tested for it at least four times, and it is negative each time, thankfully. But gray/pale stool is a major sign, as is having your gut blow up lke that.

Sorry for the rant about the colonoscopy - I get major PTSD even thinking of what the endoscopy was like.
 
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PatriotsGirl

Guest
Goodness! I can't even imagine! :(

For Florastor, it is written on the bottle not to refrigerate. I panicked when I read that and looked at the bottle and sighed relief. These puppies are too expensive to be worthless! I do not have pale or gray BMs so perhaps it is not celiac...I am going to continue experimenting, though, and go gluten free for a bit. If it helps, I just won't eat gluten anymore... :)
 

InsaneCdn

Well-Known Member
PG... you might also try going casein-free - that is milk protein, and you have to watch for it, because it hides in unusual places, like "soy cheese". Don't eliminate both at the same time, though, or it's harder to figure out which one is causing the problem (but it could be both).
 
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PatriotsGirl

Guest
PG... you might also try going casein-free - that is milk protein, and you have to watch for it, because it hides in unusual places, like "soy cheese". Don't eliminate both at the same time, though, or it's harder to figure out which one is causing the problem (but it could be both).

I will look that up - thanks!!
 

DammitJanet

Well-Known Member
I was on a 3 rx treatment for my H pylori and it was the most awful treatment I have ever had to go through...even worse than my hysterectomy. I was completely bedridden for most of the two weeks I was on them. I think it was two weeks, may have been three. I cant remember. I had to do the endoscopy and the CT scan on my lower abdomen. Mine took an incredible amount of time to get diagnosed because I went through my gp to get all the testing done and he did blood work, sent me immediately for gallbladder testing and we waited for that to get back because we both expected it to be that. When it wasnt that, then he brought me back in for more blood work and he made me an appointment for a GI, then I got the appointment for the endoscopy and the CT scan. My endoscopy was done in the hospital. This all took from the middle of the first week of June until I got my antibiotics the 3rd week of July so I hadnt been able to eat anything more than broth, yogurt, and ensure since the first week of June.

I wasnt supposed to drink diet coke but I am completely addicted to the stuff and it will be snowing in hades when I give it up. I smoke and I have to have carbonated stuff when I smoke. One would think I would just quit both but that doesnt work.

It took me several weeks to believe I could actually eat again. I started off really slow with rice, boiled chicken...chicken soup.
 
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