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Old 02-05-2008, 10:36 AM   #1
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April7 HB User
Chronic Indigestion of Unknown Origin/Diagnosis

I've posted here about this quite a bit, but not lately.

Back story:
October 4th we went on vacation for 6 days. I know I had been experiencing some mild indigestion at that time because I packed a bottle of Tums to bring with me. We ate out every night and I ended up needing some Tums at bedtime. Nothing too serious.

November 1st or so or so I started to feel worried I may have an ulcer. Tums no longer helped but Rolaids did. Started on Prilosec OTC but it made no difference.

November 15th-ish: Had a terrible night. After eating some chicken wings I had the worst indigestion you can imagine. Awful pain. Also had upper right quadrant pain that extended to my back. It started around 7pm and lasted 10 hours. I couldn't walk, stand, etc. I couldn't talk. I wanted to go to the ER but I truly and honestly believed I would die if I tried to move. The next day I went to the doctor and they suspected ulcer. She referred me immediately to a GI.

Between then and Christmas time I had 2 more attacks like that one. Both sent me to the ER and both times they found nothing wrong but gave me morphine. Between the ER and the GI, between mid November and the end of 07 I had a few ultrasounds, a CT Scan, an upper endoscopy, blood work and a HIDA scan. HIDA results are questionable. They told me at the hospital that the % was 33. But then the doctor's office the next day told me it was 51%. I don't understand how or why and no one could tell me for sure what the discrepancy was. 2 people read it and had 2 results, and the higher one is the one that was officially written up. The doctor believed regardless of results that I have chronic cholecystitis (GB inflammation that causes chronic indigestion). However, she then went on maternity leave to have her baby, and I saw her partner. He said no, not GB, but that I'm a woman and prone to stress and it's all in my head. Said I needed some antidepressants. Said my tests are all fine, and it's stress related. I told him I am doing well in life and have no stress. He didn't believe me and sent me on my way. WT?!?!

So now I haven't seen a doctor since around the 20th of December. I was so angry that I just left his office and never went back. I have an appt. at a new GI during the first week of March. I currently take Protonix twice per day and Bentyl 20 mg three times per day. I have gone from a small 120 pounds to 101 pounds since mid-November.

I have chronic indigestion. No gastritis or GERD or ulcer though according to the endoscopy. I cannot (and I mean strongly cannot) eat fats. I can have very, very lowfat meals (I can eat grilled or baked boneless, skinless chicken breast for instance that is virtually fat free). I cannot eat any sweets, no red meats, no pork, no dairy, etc. I use all fresh veggies now for cooking and eat lots of pastas and that sort of thing. If I eat fat I am in terrible pain. If I don't eat fat I'm in mild constant pain, but it's a pain I can live with. I've been on the meds 3 months and no change has occurred. I had a bite of my fiancee's hamburger the other day and was in awful pain. I am very frustrated and don't know what to do. I'm wasting away. And I'm just tired and not feeling well all the time.

My guesses? Cholecystitis or non-ulcer dyspepsia. I don't have RUQ pain unless I overdose on fats, which obviously I don't do, so mostly I don't have that pain because I'm eating healthy. However, you can push all over my stomach and I'm fine, but you push below my right rib and it's often very tender. However, I'd like to also check out slow gastric emptying, because that can cause indigestion. I'd also like to check out the possibility of parasitic infections which, I've read, can reek bizarre amounts of havoc on your body. I don't have any other ideas besides that though.

Oh, and in terms of bowel changes, only one to report. My stool has been more yellow since this happened. And when I have a bad episode of pain I often have yellow diarrhea the following day. Luckily though, diet controls those bad episodes.

I just found some relief with decaf green tea with mint. I drink it and for a few hours afterward my tummy feels pretty good. I have ordered some George's Aloe Vera Juice. Supposedly 2 ounces per day also helps the digestive system. I am looking for odorless garlic pills, as they supposedly help as well. I don't know what else to do??

I'm hoping this new doc is good. I am desperate. I don't know where to turn.

Does anyone have anything similar going on with their body? Or any suggestions?

 
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Old 02-05-2008, 11:02 AM   #2
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ZoeGirl HB User
Re: Chronic Indigestion of Unknown Origin/Diagnosis

Sorry to read this April! I am still having problems too, even though I am going longer between the severe pain (it was several times a week and now it's once every other week or so). I am still uncomfortable everyday. I am also frustrated with my doctors so I don't call them, etc and I'm waiting until my repeat u/s. I hear your frustration!

My gallbladder was removed two weeks after I sought medical attention, as you know, for not functioning and I was so happy that they found something and they were going to fix it. That was three months ago! I honestly can't tell you if it helped, maybe it was part of the problem or maybe my nonfunctioning gallbladder never gave me symptoms (never had classic gb symptoms anyway). I had a steak a week or so ago and the pain started but it never got severe and did not last very long (I was relieved!). Before removal I'd be crying in a ball on the floor. However I still get pain when I don't eat and if you've read they did find a hemorrhagic cyst on my right ovary and my CA125 is slightly elevated. Now it's a waiting game but on days I get severe pain I just cry out of frustration - why must we live in pain?

So my question (I really have one and am not just posting about me) is have they checked out your uterus/ovaries, etc? I had never considered them in play with all of this but have read they can cause bowel/urinary problems. Wish someone checked all that out first on me now. Seems like your issues are definitely food related though. I am still having trouble narrowing down any triggers. I don't think there are any for me. I did stop losing weight and I've been steady at the 30lb weight loss mark.

Oh, one thing that made me improve was STOPPING benefiber and miralax! Those were making it all worse and I didn't realize it - I was taking them as dr orders but the miralax was causing the nausea (no more nausea!) and the benefiber, I believe, was adding to the bloating and some pain. Almost immediately when I stopped those I was able to go longer stretches between painful days.

I hope you find relief soon and that someone has a better response to your post than I do!

 
Old 02-05-2008, 12:48 PM   #3
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mizzaj HB User
Re: Chronic Indigestion of Unknown Origin/Diagnosis

April and Zoe,

I feel like we should start a club with all of our undiagnosed symptoms and problems that have eluded explanation.

April-- I'm curious to know how the Aloe works out for you. I've heard it can be very helpful. I don't know about garlic, but I tried ginger capsules for a while and they didn't seem to help much. It sounds like the Bentyl isn't helping you much anymore, huh? Also like you, April, I don't eat fatty meals-- never more than 10 grams in a meal (gee that kinda sounds like a lot, but I can handle that and I know I ate more than that before), usually around 7-8 grams. So like you said, it probably keeps the URQ pain at bay. But the description of being balled up on the floor in agony after eating fatty foods in the past-- that hasn't happened to me since back when I ate rich, fatty foods-- A YEAR AGO! Anyway, I really, really hope your new GI doc is helpful. How totally crazy to have one doc think you were having gb troubles, and another one have such a drastically different opinion. It burns me up thinking that he told you you had "stress and depression"! One of the nice things a family friend of our's told me (who's an internal medicine doc) is that, "You're symptoms are real...don't let anyone tell you they're in your head." Sadly, I feel like another friend of mine who is a doc DOES think I'm just loco/depressed/stressed/whatever, and it hurts my feelings a lot.

As for whether it could be non ulcer dyspepsia-- who the hell knows? If the new doc suggests that, make sure to tell him that what you've been doing so far hasn't worked for you and that you need a new course of action. Maybe you'll get a GI who is back to thinking it's your gb. I'd ask for a new HIDA scan if possible. You should also get a test for delayed gastric emptying-- I did last week and mine was normal. But it FEELS like there's some delayed emptying going on. About the parasites-- I'm going to ask to be checked for that too-- two friends suggested I look into that-- just another avenue to go down. The more they rule these things out, the more comfortable I'll feel with getting gb surgery. But like Zoe said, she's not eve sure it's made a difference as she hasn't had classic symptoms-- some of mine are, some aren't....it's a total crapshoot.

Have you thought about trying a homeopathic doctor or acupuncture? Acu didn't help me much, but a girlfriend of mine with IBS said it helped her. And acu doc may have some suggestions of herbs that might help. I was using an herbal formula called "Iberogast" that you can get on the site Seacoast Vitamins. It has a lot of herbs that are known to help digestion....my old GI doc used to carry it in his office. It's effectiveness is actually similar to that of other prokinetci drugst like cisapride or reglan. It hasn't helped me much, but then again, gastric emptying isn't my problem.....

And now ZoeGirl-- I hope your gynelogical issues aren't being too much of a nuisance. I'm glad that stopping miralax and benefiber have helped you and that you have pain less frequently. There's nothign worse than nausea in my opinion! Has the birth control pill helped you at all? I thought maybe it would help me (wondered if hormones were causing my stomach to be jacked up), but I'm on month 3 of ortho tricyclen-low and all it seems to do is cause MORE bleeding...uggh!

That's all for now...I gotta go give a training...oh joy! Later girls....

take care, ladies

Last edited by mizzaj; 02-05-2008 at 12:50 PM. Reason: wrong words

 
Old 02-05-2008, 04:37 PM   #4
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April7 HB User
Re: Chronic Indigestion of Unknown Origin/Diagnosis

I love that you're both around but I HATE that you both replied that you're still not feeling well. It makes me so sad. I know between the three of us our frustrations are probably pretty enormous.

Zoe, I still think you did the right thing having your gb removed. You may not have had many symptoms, but you had some, sometimes. And while maybe it didn't cure your issues, just think, one more thing is ruled out. Before you didn't know if it was gb causing pain or chron's or whatever the case may be. Now you know that in the future any pain that you get is not gb related. At the very least, it narrows down your future treatment options, even if it didn't eliminate much of your pain. I'm so, so saddened to hear you're in pain still. It's very unfortunate. But like I said, I do think it was wise to have the surgery. Had you not had it removed, you would have all your problems now on top of any of the gallbladder complaints. This at least eliminated one piece of the puzzle. I wish it was a bigger piece though.

I have an ob/gyn appt. 1 week after the new GI appt. I have yearly exams, and I agree, it's good to get it checked out. I'm going to tell every doctor I have about this stomach stuff, because any and all input I can get from my doctors is helpful. My gyn is very wonderful and really into homeopathic healing so I am hoping she has some advice for me.

Mizza, with your EF% being so low I can't figure out why you wouldn't do the surgery. If you have additional issues yes, you may end up like Zoe. Maybe it won't cure you, maybe it will only take away a small fraction of your discomfort. If it would eliminate even 5% of your pain, wouldn't that be worth it for you though? Or conversely, what if it elimiates all of your pain? What if it's your cure? I know it's scary. I know there's no guarantee. But really, isn't it worth it to try it at this point?

10 grams of fat sounds like a ton to me! I can't handle over 5 per meal. I think my total fat intake per day is about 10-15 grams. It's very low. So low that I know it's not healthy. I feel run down a lot. I'm assuming it's due to low fat intake. The type of fat I eat also affects how I feel. I had a 5 gram of fat frozen chicken patty. I had wanted to eat this thing for weeks. Kept looking at it in the freezer (one of the last remnants of my "previous" life). Finally I couldn't take it and I just cooked it. It was soooooo yummy. But of course greasy even though I baked it, and of course the pain was excrutiating. However, I then will eat the following day a baked potato with lowfat cottage cheese and tomato slices. On the side I'll have a little baked chicken breast. The cottage cheese alone is 3.5 grams, plus the chicken. So I think it's the "quality" of the fat if that makes sense. So, I have to eat the "nicer" fats. I tell ya, just one day I'd give anything for a slice of cake. I'm recently engaged (!!!!!) and I can't even go try out caterers yet or bakeries or anything. It sucks. I fear my 2009 wedding day will be filled with stomach pain and no eating. It's just so frustrating.

It's really good to talk to you ladies. I wish you were both feeling better though. I will let you know how the aloe works. Zoe you might look into it to. Who knows if it will work but supposedly it works on a million stomach issues.

 
Old 02-05-2008, 05:52 PM   #5
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mizzaj HB User
Re: Chronic Indigestion of Unknown Origin/Diagnosis

Wow April, I can't imagine how this couldn't be your gb given how sensitive you are to fats. But your suggestion to eat "good fats" is a good one. Maybe the fats are affecting me more than I realize, but for me the result is a lot of fullness and feelings that my food isn't digesting, rather than excruciating pain. Anyway, I hope that your new GI doc will be willing to repeat your HIDA scan and even your abdominal ultrasound. Maybe they can do and ERCP to see if there are any smal stones that the ultrasound can't pick up.

I agree that being checked out by a gynecologist is a good idea. I often feel that my symtpoms are worse around my period. I had a pelvic ultrasound, and I was told that I had a benign cyst the size of a grape. The doc did not seemed concerned by that at all, and now I'm on the pill, so hopefully that is helping somewhat.

April, I feel for you regarding your fears of having stomach aches on your wedding day and not being able to even think about looking for cakes. But 2009 is a long ways off....hopefully by then you'll be better. Fingers crossed!

I'm definitely considering surgery. I'm just not sold on it. I think I need to talk to the surgeon first and see what he/she says. Hopefully I'll see a surgeon in about a month if all goes according to plan. Like I said, sometimes I feel that the discomfort I feel isn't severe enough to indicate gb problems, but you're right-- if it helps even 5%, it'd be worth it. And it COULD be the cure. But like i said before, it's extremely frustrating that I have doctors who don't believe my symptoms are gb related. At least you guys have had doctors that have thought that. I wish my GI doc had said, "Wow, your ejection fraction is so low...it must be your gb!" But of course, he totally dismissed it. So that makes me more uneasy....like I said, I'll see what happens when I talk to the surgeon. If nothing else, my gb is essentially not functioning, so even if I got it out, it probably wouldn't make things any worse.

I would give anything to have my normal life back. Sure, the weight loss part has been great and I needed to lose weight, but I swear, every time there's some type of eating function at work, or at a friend's house, I get all panicked-- will there be anything I can eat? Will I have to bring my own food? It's all very frustrating. I see commercials advertising massive hamburgers at Jack in the Box, and I get very sad. My therapist agreed that I'm probably totally grieving over the loss of my previous ability to eat whatever I want, sans problems, and that going out to dinner was a big part of my social life. At least if I have dinner plans with friends, I can check out the menus online ahead of time and find myself a nice salad that I can eat.....it's not how I want to live, but it allows me to cope and not totally have to give up what was once a huge part of my social life. I loved food and trying different things. Now I can't even imagine being back in that place....sigh. I am hoping that 2008 is a good year, because 2007 really sucked.

Take care girls,
AJ

 
Old 02-06-2008, 12:15 PM   #6
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Sisty HB User
Re: Chronic Indigestion of Unknown Origin/Diagnosis

Sorry Girls!! I know the feeling I am now going on 1 year and 2 months. No Diagnosis. People have been posting that it sounds like Spinchter of Odi Disfunction? Has anyone asked their doctors about this? Mine don't want to see me I am going to a University teaching hospital on the 18th for a consultation. Although I am scared if it is is Spinchter of Odi that I will be in pain for the rest of my life. I am so sorry the gallbladder surgery did not work. I went to a surgeon too but he would not remove it as my HIDA and US were negative.
I hope one of us gets resolution. I am like all of you feel like we are living in a bad dream and just can't wake up.
Sisty

 
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