Just "diagnosed" & needing to vent & maybe get advice

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rgrwfe
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Date Joined May 2006
Total Posts : 43
   Posted 8/14/2006 2:47 AM (GMT -7)   
  Well, my colonoscopy & endoscopy are done & I have been deemed to have no anatomical problems, which leaves the physiological aspect.  My doctor (gen. surgeon) said I had some obvious Irritable Bowel "Problems" and that there is no GI specialist in the area that they can/will refer me to.  I was given bentyl 20mg and sent on my way.
 
  Today I saw my general practitioner, and I have been referred to social services now to speak with a social worker about bio-feedback.  I know nothing about bio-feedback, which I will be looking up on the internet after I write this.  Accupuncture was also mentioned as a future thing, which leads me to believe that I am now being sent into this whole mind/body or holistic realm.  I can't say that I'm too happy about that, but then I have never been yet, so I'm not really sure.
 
  Up until the colonoscopy & endoscopy, I had severe cramping (or abdominal pain) right below my belly button, along with diarrhea.  I suffered with that for 3 months with only Citrucel to take for "relief".  Now in the past 2 weeks since the procedures, it seems that my annoying pain has moved into a different place.  Twice in one week now I have had awful pain just under my ribcage (all across) & it comes with what feels like chest pain & then it radiates up into my sholders & upper back.  Both times I have vomited, which is rare for me.  The diarrhea has also come back with a vengeance, which I WAS doing a lot better with.
 
  I have been taking my bentyl twice daily, my Citrucel (2 tabs) once in the AM, and Caltrate w/ D each evening.  I am also coming to terms that I am getting more & more lactose intolerant every day, which is VERY new to me, so I take Lactaid as needed.  Lately it seems like it's not helping at all.  So today I have been put on Aciphex for reflux - which is what my doc thinks the upper pain is from.  This is news to me.
 
  I was told that I can no longer get any of the help I need from an MD, even from a GI specialist.  The care they say I require has to come from elsewhere - almost like a chiropractor.  I'm just so confused & feel like I'm being run through the "system"!
 
  Here's something else that threw me for a loop today:  I was told to make sure that I take my bentyl at the same time every day because my body will use it to reprogram itself.  Not 10min later, I was told not to rely on it too much because I don't want my body to become addicted to it & have to rely on it.  So which is it?  I mean, these are the things that go through your head AFTER you leave their office & you want to kick yourself for not having this revelation while you were still in there!
 
  If anybody has any experience with ANY of this, please write in - even if it's just advice.  I just want to know if this is what other people have been put through.  Is this normal??  What has worked for you?  Also wanted to add that I am 5'4" & now EXACTLY 100 pounds. confused
 
Thanks,  rgrwfe
 
 
 

Post Edited (rgrwfe) : 8/14/2006 4:02:10 AM (GMT-6)


Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 8/14/2006 7:50 AM (GMT -7)   
Interesting that your pain and symptoms have changed--to match gall bladder disease, in fact. Pain down around the belly button isn't, that I'm aware of, a symptom of GB disease, but pain along the diaphram/under the rib cage and up into the right shoulder and arm especially are big signs. As is vomiting, which is rare among IBSers (although some so sometimes because of pain or general stomach upset).

Are your stools yellow or green and is your vomit yellow or green? Do your stools burn when they come out?

Mind you, gas can cause pain in the chest area and, like I said, some people with IBS vomit (as do some people with acid reflux), but if you have yellow, burning stools, you need to have your gall bladder tested. I went 5 years before I got diagnosed with gall bladder disease. I was put on antacids by two different doctors because of the pain I was having in my right shoulder and arm--and of course they did absolutely nothing to help me because I didn't not have acid reflux (and have never had acid reflux).

rgrwfe
Regular Member


Date Joined May 2006
Total Posts : 43
   Posted 8/14/2006 12:14 PM (GMT -7)   
Keriamon,
  In a blind effort to cure the abdominal pain, my gall bladder was removed September 2005.  I thought of that too while it was happening, but I don't think it was a right side thing.  I remember the pain being all over above the diaphragm, front & back.  It wasn't as sharp as the other pains, it was extremely achey, almost like a ton of pressure. This happened for the first time on Aug 5 (while I was visiting a different foreign country, naturally), and then again on Aug 11.  I did not seek emergency help; after I eventually vomited, I was able to feel relief.  That same day of the 11th, I had watery "D" 8 times.  It was as if I had phospho-soda to drink with my dinner, so it didn't burn as much as I would have expected because it was so watery.  Also, something I do for relief - keep a box of baby wipes by the toilet for the D moments, it really does keep the irritation level down (especially on bowel prep night).  Thanks for the help.
 
rgrwfe
 
 

Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 8/14/2006 12:29 PM (GMT -7)   
Have you tried Welchol or a similar cholesterol product that absorbs the excess bile-water in your stools? I can't have a normal poop unless I have my Welchol. Luckily I don't normally hurt, but I did have a bad patch last year where I got into some sugar alcohols and got very messed up and hurt a lot. I was having very bad D too. So I started taking the calcium pills and that cured me right up. Now I take a Welchol and a calcium pill a day and am usually perfectly normal. If you frequently have a lot of bile in your stools, this can, I think, make your guts hurt because the acid irritates them. You can also reflux this excess bile, but I still am dubious that acid reflux can make your arms and chest ache. Have you tried gas pills to see if that helps any? One thing I noticed when my gall bladder went bad was that I never pooted or burped anymore; the gas just got trapped inside somewhere and ached. Calcium, by the way, is supposed to help soothe an irritated digestive tract (at least the intestines).

For five years my gall bladder hurt only along my diarphram and up into my right arm. Only about a month before I had it out did I get the typical right sided pain and lump feeling.

rgrwfe
Regular Member


Date Joined May 2006
Total Posts : 43
   Posted 8/15/2006 1:55 AM (GMT -7)   
I tried Gas-X on those occasions & it made no difference at all. I looked up acid reflux & it seems like I had all the classic signs. I forgot to mention the Welchol the last time I was at the doctor - so much info being thrown at you at once. That is deinitely worth a mention - thanks for reminding me. I am frustrated with having a doctor that is about 2yrs out of medical school & there is nothing I can do about it. I can go to another doc for a second opinion though, so I may go that route. Should I still be concerned that I am having pains accociated with bile ducts or something if I have no gall bladder?

*****What do doctors usually do for their patients after they diagnose them?? Do they prescribe meds & say 'see ya later', do they put you through some kind of treatment like hypnosis, diet regulation, or something else? What is the usual routine of treatment after diagnosis?*****

Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 8/15/2006 10:20 AM (GMT -7)   
Well, seeing how your gall bladder has been out a year now, but you've only recently (I take it) started hurting in your upper quadrant again, I doubt you have a problem with a stone lodged in the duct or a duct that was damaged during surgery.  I would think in either case you would have been hurting in the upper section and probably even on the right side since you got out of surgery.  I don't think that damage to the duct is something that can develop; it either happened during surgery or it didn't.  Although I guess scar tissue might happen.  But if your pain moves around on you, from upper to lower or visa versa, that sounds more like gas or digestive tract upset. 
 
My G.I.'s Nurse Practitioner told me that bile can go up or it can go down.  When it goes down, you end up with D.  When it goes up, you end up with GERD.  So it may indeed be that you need a really strong antacid to cut that excess bile that's refluxing up.  I don't know if the Welchol will work in the stomach to soak the excess up, but it certainly helps in the intestines. 
 
The calcium can help (it's not enough by itself for me, but it is for some people) your intestines and it may help your esophagus too.  My mother is a firm believer in milkshakes when she has heartburn.  I have heard that you're not supposed to treat heartburn with milk because the fat in milk can make you produce more acid, but my mother's reflux is from a weak valve, not really excess acid.  So she's probably not making her acid any worse because she's normal to begin with.  But the reason why milk helps is because the calcium is supposed to be soothing to irritated linings of the digestive tract.  So if you can tolerate yogurt at least, you may want to try some of that when you are cramping to see if that helps calm your G.I. tract down any.  May want to try those supplements too to see if you can get any help ahead of trying the Welchol. 
 
***Prescribe meds?  Wow, that's a good doctor that will even try to do that much for you.  There are a number of people on here who can't get their doctors to give them anything: anti-spasmodics, pain meds, nothing.  They basically tell their patients not to let the door hit them on the way out.  The rest of them just put over their doors "Abandon all hope, ye who enter here".  They try a few drugs or diet suggestions, then shrug their shoulders and pronounce it permanent and unfixable.  There's not many on here who can brag about having an excellent G.I.  Excellent gynos, excellent g.p.'s, even an excellent chiropractor who was trying to get a woman some information and trying to help her out, but excellent G.I.'s are rare.  Thus this board.  If we had doctors to tell us all this stuff, we wouldn't need this forum, or at least not much.  People come here seeking answers a lot more than they come seeking just companionship. 

rgrwfe
Regular Member


Date Joined May 2006
Total Posts : 43
   Posted 8/15/2006 12:21 PM (GMT -7)   
Well, I have been doing a little research today about post lap-chole issues so that I can arm myself with info the next time I see my doc. So I guess I should just get used to being a part of a group that is basically thrown out by the medical community. If they can't find it, they label you as IBS & send you on your merry way....pain free or not. What a shame! "Abandon all hope...." is right.

I do very well with yogurt & will mention Welchol to my doc. I mentioned it before & she changed the subject. I am thinking that at this point, unless I find a miracle doctor, I am doing this on my own & not relying on them. I just can't get my hopes up that a doc will help me anymore. After all, I have been referred to social services, so that tells me what they think about me & IBS. Once I'm gone from Italy, then I may have more options, but that's a while from now.

I just want to gain my weight back - there's a huge difference with 100lbs & 110lbs on me.

Keriamon - thanks for the tips, you're always a big help!

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 8/15/2006 8:54 PM (GMT 0)   

Rg, how many countries have you visited?  Any developing countries?  I ask because I got violently ill from parasites when I traveled in Africa and South America and haven't been the same since.  Parasites are ridiculously hard to find because they are only shed intermittently in stools.  Have you ever taken Flagyl or Ciprofloxacin?  Sometimes a well-informed doc may prescribe this powerful combo of meds even if there is no hard evidence of parasitic infection. 

I saw two GIs, then took a trip to the Mayo Clinic (3000 miles from home), and never got any answers for the insane diarrhea, pain, and weight loss I'd been experiencing for months.  Found out I had gallstones and the surgeon was biting at the bit to take it out and have a look at it, thinking a parasite had found its way in there or something.  I stopped having URQ pain after the gallbladder came out, but the diarrhea continued with full force.  I attempted to ignore it for months before I became disgruntled again, and when I visited my nurse practitioner she prescribed Flagyl, an anti-parasitic/antibiotic.  I took it for 10 days and the frequency of diarrhea I experienced went from 95% of the time to about 20%!  That lasted for three months before the diarrhea came back strong and I went in again recently and she put me on a Flagyl/Cipro combo.  Again, my diarrhea has abated.  I see a pattern here.

You might want to see if someone would be willing to give that a shot...it has improved my life tremendously!

 


Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 8/15/2006 2:25 PM (GMT -7)   
I'd hate to think how much diarrhea I'd have if I didn't have my Welchol everyday. Like everything, there's no guarantee that it will work, but it's worth a shot. I'm pretty sure constipation is the only known side affect.

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 8/15/2006 2:58 PM (GMT -7)   
I definetly would check out the parasites. There is a new drug Alinia that is being used for adults with your symptoms. It is usually used for children for "travelors diahrea" but it is being used "off label"

My friend thought the yogurt was helping but he was still having problems. I suggested he stay entirely away from any dairy ANY dairy for a week and see what happens. After 3 years of misery it changed him back to normal. It is not the lactors alone it is that our bodies change and we cannot digest the the other things in milk so the Lactaid doesn't do the job. What do you have to lose by eliminating all dairy even the yogurt. It is the first thing my Dr. took me off of when I was told I had IBS, that and red meat, fresh fruit and fresh veggies. Basically we are on our own to work this out and we are all differnt so have to try different things. The Probiotics and no dairy really helped me after a few weeks of chicken fish and rice, potatoes and noodles. Hope you find an answer. Years ago when in Italy I had a major toothache and they wanted to pull a tooth, I said No, maybe it would subside. It did and when I got home found out they would have pulled the wrong tooth so hang in there.

rgrwfe
Regular Member


Date Joined May 2006
Total Posts : 43
   Posted 8/16/2006 8:32 AM (GMT -7)   
I was doing pretty decent in the states, aside from the stress of moving to another country. After I got here, I was fine for 3 months - no symptoms. Then it started up & has gotten progressively worse & worse. I have vomited 3 times now (lately), and that is not part of my "usual". The first time was while I was visiting Austria, that night in the hotel, a couple of weeks ago. I only stayed one night. I have been to places throughout Italy, Switzerland (day trip), Austria (2 separate overnight trips), and Slovenia (day trip).

I now have an appointment set with a real live GI doc (wow) after knocking on some doors today. I had blood drawn for a liver panel & amylase (for pancreas). I also have an abdominal ultrasound scheduled. I went to the mental health doc they referred me to today & he has never been trained in biofeedback & was wondering where my doc even got the info from. You know, I mentioned to her the other day that I got out my old Anat book to look something up & she said to me, "That's my job, not yours." Who's really looking out for # 1 if it's not me???

I was doing some reading on a different website that was talking about a reliable test for differentiating between bile acid malabsorption & IBS. It said it should be considered for people with IBS, especially those who have had gall bladder removal. It is called the SeHCAT, which stands for 23-selena-25-homotaurocholic acid test. Anybody ever heard of this?

Canyonbabe - are you referring to caesin? I have seen that mentioned on this site before. Could that possibly be in soy milk too? I'm really thinking the Lactaid was helping for a couple of weeks there, but like I said, I think I am just getting progressively worse & worse. I don't even go to restaraunts anymore because I can't take my chances that I'll be doubled-over before I'm even done eating!

I am jotting everything down & will be prepared to see this GI doc next - thanks for the info.

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 8/16/2006 9:59 AM (GMT -7)   
No, soy milk does not (or at least it shouldn't) contain caesin because soy milk isn't really milk. But caesin, a dairy protein, can be found in prepackaged foods that you wouldn't think would contain a milk product. I know it's used as a glue for bottle lables, so it may be in some foods as some sort of thickener. Almond milk should also be safe to drink. I've read that it's not very good to drink straight up, but that it's a decent substitute in cooking. They used it all the time in the middle ages during fasts, like Lent.

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 8/16/2006 3:21 PM (GMT -7)   
I haven't had too much luck with almond milk for cooking. It won't work for pudding as it won't set it. I use the vanilla flavored one for cereal and it is delicious. I don't drink milk like things but it seems like it would taste pretty good. Not sure why you would drink it as it has limited nutritional value. By the way they are saying now that Soy is not all that it was cracked up to be. Just heard it today on radio. Who the heck knows anything or can believe anything anymore?

lnape
Regular Member


Date Joined Mar 2003
Total Posts : 185
   Posted 8/18/2006 10:54 AM (GMT -7)   
rgrwfe,

Don't overlook the calcium carbonate information mentioned above. Just email me and I will pass it along to you. It has help me and 10's of thousands of others since I have been using it for over the last 8 years. I too had my gall bladder removed and nothing got rid of the diarrhea and pain I suffered for many years after until I started the calcium.

Linda


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 8/18/2006 11:41 AM (GMT -7)   
Canyon, I am of the firm belief that, according to science, everything will cause cancer and everything will cure it. In fact, everything can and will both cause and prevent death. Scientific studies these days are so slipshod to begin with, then the media runs away with them and makes them even more inaccurate. I've bene double-checking the math on some of these "50% of fat people will die of pancriatic cancer!" sorts of stories, only to find out that the numbers don't add up because you have to first factor in the fact that there's less than a 1% chance of anyone in particular getting that cancer. So 50% more than almost no risk is still almost no risk. It's all WAY over-sensationalized. Same thing goes for "miracle" foods that will cure everything in the world. I guess the root of it is just that people don't want to die and they'll grasp at any straw that might make them immortal.

And whoever heard of drinking milk straight up for its nutritional value? Pshh! Everyone knows you drink milk because it tastes good with your brownies, cookies (especially Oreos) and it's actually right tasty with vegetable soup. The real question is, then: does almond milk taste good chasing an Oreo?

Medieval recipes allowed for thin almond milk, but I'm no medieval cooking expert, so I couldn't tell you what they used in conjunction with it to make normal puddings and the like. If you were really curious, there are books out there that redact medieval recipes and contain almond milk recipes.

rgrwfe
Regular Member


Date Joined May 2006
Total Posts : 43
   Posted 8/18/2006 3:30 PM (GMT -7)   

Linda -  I do take Calcuim carbonate with Vit D daily, maybe not enough.  How do I go about emailing you without an address, because I'd like to read the information you have available.

  I have really come to notice that I am slowly becoming completely intolerant of all things dairy.  I am a person that used to sit down with nothing but macaroni & cheese for dinner & nothing else.  I had it last night and was miserable.  Is this some thing that eventually goes away & people can have dairy again?  Has that happened before?  The only good thing about being here is that I can take advantage of the fruit gelato flavors because they have no latte (milk) in them - not sure what I'm gonna do about that when I get back in the States!  I am still holding on to hope that when I do return home, this will all fade & maybe I'll get back to normal.  Culture shock is stressing enough!


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 8/18/2006 3:53 PM (GMT -7)   
I think once you get intolerant to dairy, you stay intolerant. But, if you are only lactose intolerant, you can at least get Lactaid milk to drink and to put in coffees and the like. There are pills for people who are lactose intolerant, but they don't always work for everyone.

Maybe you need to start making meals of Corn Flakes and orange juice; a family friend of ours can't have milk, so he puts orange juice in his cereal! Maybe in Corn Flakes, but definitely not in Cocoa Pebbles!

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 8/18/2006 6:18 PM (GMT -7)   
Rgrwfe,
Here is Linda's (lnape) email address: Click Here
Check people's profile for their email addresses.  You do that by clicking on their names.
Good luck!



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