[Marriah]

Just curious. There has been a lot of talk about symptoms we have that are not listed in the Rome criteria.Rome criteria: Irritable Bowel Syndrome can be diagnosed based on at least 12 weeks, which need not be consecutive, in the preceding 12 months of abdominal discomfort or pain that has two out of three features: 1. Relieved with defecation; and/or2. Onset associated with a change in frequency of stool; and/or3. Onset associated with a change in form (appearance) of stool.Symptoms that Cumulatively Support the Diagnosis of IBS: Abnormal stool frequency (may be defined as greater than 3 bowel movements per day and less than 3 bowel movements per week); Abnormal stool form (lumpy/hard or loose/watery stool); Abnormal stool passage (straining, urgency, or feeling of incomplete evacuation); Passage of mucus; Bloating or feeling of abdominal distension. As you can see, it doesnt mention anything about nausea, severe vomiting, stomach pain (as in not where you're bowels are). In doing research, though, occasionally upper stomach problems are mentioned. If these "other" symptoms are caused by IBS, why arent they in the Rome criteria?Do you have symptoms not listed, but your doctor still blames on IBS? If so, what are they?Are these symptoms related to, or caused by, your IBS because the doctor just says so, or because other diseases have been ruled out through testing?Based on any research you personally have done, do you 1) think your problems are caused solely by IBS? 2) think you have IBS in addition to some other problem that is causing you to have these "extra" symptoms? Or 3) do you think all your symptoms are a result of something totally different?

 

[Marriah]

My additional symptoms: i have episodes of severe vomiting and wretching, accompanied by uncontrollable D. Between episodes, I am predominatly C. Episodes are unpredictable.My doc blames them on IBS. I have had numerous blood tests, ab CT scan, scopes in both ends, ultrasound on my gallbladder, tests done on my pee and poopy. I think thats all. Since nothing showed up, he tenatively diagnosed me with IBS.Based on research I have done, I really dont think my vomiting episodes are a result of the IBS. There are a number of things I will be discussing at my GI appt (thanks to help from flux). Included: infectionpsuedo-obstructionneurological probcvsstomach dysmotility(If anyone has any ideas as to what else I should add, please let me know, my appt is tomorrow afternoon).The constipation I experience between episodes I think may be due to IBS, the IBS perhaps being caused by whatever is causing my vomiting episodes (did that make any sense?).Thanks in advance for reponding to this thread.

, Marriah

 

[TechChick]

My symptoms seem to start about 30 mins after eating, but not all foods seem to bother me. It seems that fatty things are really bad and cause the most distressful symptoms. I want to start an experiment to see what foods caused the worse symptoms. These are some of my symptoms, when I have an attack1: greasy floating BM's, that is hard to flush down the stool, its also pail looking(sorry about that

)2: Nausia, vomiting and pain under the ribcage3: These symptoms keep me up at night, I can't sleep when I have attacksI beleive thats about it, I personally don't think my symptoms sound like IBS. Marriah, have you had Hida Scan with CCK? The reason I said that was, my ultrasound came back normal for my gallbaldder, but my the Hida Scan with CCK showed an ejection fraction of 10%. I had surgery 2 weeks later, she said it was very bad looking and it needed to come out. Just a thought. Let us know how the doctors vist turns out.

 

[Marriah]

Techchick, thats a very interesting point about the Hida test. I was admitted to the hospital my GI doc works at about 3 or 4 months ago to have my stomach scoped and a colonoscopy. I was also scheduled to have the Hida scan. Instead, they came in with a can of some high fat nutritional shake (like insure) and an ultrasound machine. I never did find out why i didnt have the Hida test done, and when I asked the doc about the results of the ultrasound, he very uncharacteristicly said he didnt "think" it showed anything up. He then moved on. But tomorrow, I plan on getting some details. From what I understand about gallbladder problems, it often doesnt show up on tests. Removal is usually the last resort, and lo and behold, it's a diseased organ!!! Thats just what happened to my grandmother.So, I'll add Gallbladder to my list of questions for the doc.

, Marriah

 

[vipers]

Vomiting definetly isn't a symptom of IBS and you should see a new doctor if your current doctor says it is. Have you ruled out the possibility of Parasites or Celiac Disease? Check out Http://bara.idx.com.au/info/parasite/parasite_home.htm for more info on parasites and Http://www.celiac.com for information on Celiac Disease. I'm 21 and have been struggling with chronic severe symptoms for almost 2 years now, but no vomiting. My blood has been tested positive for celiac disease 3 times in a row so im on a special diet and I think im finally starting to feel better. Celiac testing isn't too great, so if you get a negative test, there is still a possibility you have it. Check out the site for more information.

 

[Marriah]

vipers, thanks for the response. I've already been tested for parasites (negative), and I dont think its celiac. what are your symptoms?

 

[TechChick]

I was tested for Celiac and parasites it was negitive also. Marriah, I would def ask for the Hida Scan with the CCK, those gallbladders can be the root of all evil when they go bad. It sounds like you have family history, so that maybe a possibility. My doctor said that an ultrasound doesn't always show gallbaldder problems. Let us know what you find out

 

[LadyM]

My symptoms are:This is most of the time my daily symptoms:Bowels grumbling the moment I swallow a bite of food.Bowels moving like they are full of air.Passing gas(the air comes out, all day long).Pain around belly button(feels like I ate too many green apples)Bowel movement within 30 mintutes after I eat, most of the time normal bm's(that started happening after I was put on pepcid).NaseousOther symptoms that does not happen on a daily basis:Severe pain in stomach(feels like my whole stomach clenches up). Only thing that helps this pain is over the counter gas medicine.Stomach soreness around the belly button that comes from a bad episode of gas, bloating, upset stomach, severe pain or the D. Heart flutters that can be caused from Gas in the stomach area due to irriation of the vagus nerve. This started happening to me right after I had my GB surgery and the D got really severe. I found out through a heart forum that the vagus nerve can get irritate via gas, upset tummy ect..and that can cause heart flutters(I have MVP)ConstitipationLoose Stools(D)Gas pains in and around rib area, chest and stomach.Phantom GB attacks(feels like my gallbladder is still there and not working right). I was even tested after the gallbladder surgery for stones in the duct, it was negative.Severe pain when having bowel movement.Mucous Weight loss if I have the D bad.That is all I can think of. I am a C, D, and normal bowel movement ibser. Most of the time now I have normal bowel movements but still have alot of the ibs symptoms.

 

[flux]

quoter because other diseases have been ruled out through testing?

Very few patients and probably nobody on the BB, are thoroughly tested. (But most don�t need to be.)

quote:Based on research I have done, I really dont think my vomiting episodes are a result of the IBS

You got the idea!

quote:1: greasy floating BM's, that is hard to flush down the stool, its also pail looking(sorry about that )

Do you still have this? If so, IBS ain�t it and you should be tested for malabsorption.

quoteassing gas(the air comes out, all day long).

Also not IBS. What happens if you fast for two days?

 

[TechChick]

Flux,What kind of things could cause malabsorption? I have had low Iron for over 2 years now. My GI said it wasn't B12 anemia.

 

[Marriah]

Flux, please go easy here. The WHOLE freakin' reason I started this thread is because these extra symptoms some of us are experiencing are most likely NOT a cause of the IBS.

 

[vipers]

Over the past two years my symptoms have consisted of..1. Constipation which usually results in Diarrhea after a few days.2. Nausea3. Heartburn4. Belching5. Bloating6. Regurgitation of Food7. Abdominal Pain8. Hard Stools9. Noticed white substance on stools10. Feel the need to go to the bathroom a lot11. Mucous in throat12. Blood in stool13. Colon Spasms14. Possible Hemorrhoid or Rectal ProlapseWhen Symptoms are severe1. Fatigue2. Weakness3. Dizziness4. Don�t feel like getting out of bedI actually had these all written in a document, so I just copied and pasted

. These symptoms have been on and off for 2 years usually feeling fine for a few days then sick as hell for a view back and forth. Ive been taking a antispasmatic called Donnatol and have been on the celiac diet for 3 weeks now and I have been feeling sick less often with less severe symptoms. I am hoping it is celiac and I have found the problem, and that im not doing this diet for no reason. Since my celiac blood tests have been so abnormal my doc thinks I need to try this diet. Prior to this diagnosis the doctors have always said it was IBS.

 

[flux]

quote:What kind of things could cause malabsorption?

One of say 100 different conditions. IBS, of course, is not of them.

 

[vogue777]

I have been told pale stools can be bile. Which is yellowish... I think it's supposed to sit in the colon, it turns darker.. if your colon is being emptied early or frequently, a doctor once told me you can be 'dumping bile'. Just a thought...ben

 

[TechChick]

quote: One of say 100 different conditions. IBS, of course, is not of them

Flux, I figured that, it doesn't take a rocket scientist to come to that conclusion, but thanks for the info

 

[genny]

Here are my symptoms which I don't think fit the normal description of IBSale/greasy/foamy mucousy stuff in toliet with oily looking spots with bubblestan/cream to often black stools (often rabbit pellets to diahrrea - floating bits and pieces) sorry for the graphicsrefluxshoulder pain in right area, often in middle of backstomach pain/often immediately under left and right ribs (more often left) anywhere from 45 minutes to 12 hours after eatingnausea (24/7)weight loss (originally 50 pounds but have gained 20 back)occasionally lower abdominal pain from navel hip bones and both sides right and lefthave to go to the bathroom within 15-30 minutes after eatingoften wake up in the middle of the night with pain in stomachcannot tolerate greasy/fried/fatty foods/large mealsfatigue 24/7muscle pain in jointsburping/passing gasinsomniastomach and colon polyps (not a symptom but I did have them removed and have to be checked every 3-4 years)migraines

 

[beelzebubble]

okay. i am really mad

i had no idea that so many people with ibs were so poorly diagnosed. i am also one of those people with atypical symptoms. i've posted before, wondering if i've been misdiagnosed, because i've had only 2 tests done, a blood test for h. pylori (negative), and an upper gi barium swallow (showed thickening of the folds of my duodenum, and irritation). but, the doctors keep telling me i have ibs, and i think it's because i got a cursory diagnosis of ibs with NO testing when i was 16. my symptoms are:fatty floaty diarrhea that is hard to flush alternating with bouts of constipationvomiting/nauseabouts of severe upper left abdominal pain/and tenderness when pain is not presentlow iron and low normal b12high white blood cell count (14,400)i also have (on occasion) spots of bleeding under the skin, yellowing of the corners of my eyes, a blistery rash on my hands, feet and head, tons of mood symptoms-depression, anxiety, fatigue, irritability-and i'm hypothyroid. i also have fairly profound hair loss (i'm a 29 year old woman).how can they do this? why can't there be such a thing as a consumer group protecting those suffering from gi symptoms, to prevent misdiagnosis. it seems as if a lot of doctors don't want to work for a diagnosis. in my case, i think it is because i'm a member of an hmo.i mean, the things i'm really concerned about are pancreatitis and celiac disease, and they won't test me for either. what if i do have them? they are chronic conditions that if left untreated can lead to real physical damage. i'm at a loss, i don't know what to do. i'm gluten free right now, have been for 2 weeks. but, being gluten free is so hard. you have to read every label with a list of suspicious things next to you just to find out if you can eat something. and going to a restaurant SUCKS. i think they want to run when they see me coming. i don't want to have to do this if i don't need to, you know?and then there are the statistics. on average, someone with a more serious gi disorder (i.e. crohn's, uc, celiac disease) will go upwards of ten years being misdiagnosed as having ibs. that doesn't fill you with confidence, does it?aarrgh!

what do i do? if anyone has any advice, please let me know. i am desperate for it, and i mean DESPERATE.i wish you all luck. this sucks.carrie

 

[genny]

hey, bel, i know this woman who's terrific. her name is alma and she's at firstwin###datasync.com. she suffers from chronic pancreatitis and has some other illnesses but i can't remember what they are. please contact her. it's ok if you give her my name. your symptoms definitely don't sound like IBS to me. she is a very compassionte caring person and i know she can put you in touch with some wonderful people. please contact her.

 

[Peony]

crampingconstant gasanxietyfatiguediarrheabm's after eatingbm's when i think about having a bmor when i have to do something that worries menausea in the AM(very mild)no immune system(and before you guys jump on that and tell me it's not a symptom of IBS, i will say in my case it is because the GI disease I had previously attacks your immune system, and can damage it for a long time)

 

[Marriah]

Genny and Beelzebubble, please see my thread called "TechChick", it gives a little description of organs that might be envolved in giving you those wierd bm's.Also Beel, please check this site out about jaundice : http://www.focusonhepatitisc.com/script/ma...899&track=othep Could this be the yellowing you mentioned in the corners of your eyes? Jaundice could be an indication of liver or gallbladder disease. Along with the fact you have vomiting, I think you should have your gallbladder tested. Is there any way you could get another doc that may do the tests? I'm really thinking it doesnt sound a whole lot like ibs.Just like you, I experience vomiting. I have "bouts" of illness, and in between I am ok as far as that goes. It took me 4 different doc's till i found one that would do ANYTHING. 'Its just IBS'. I cant wait to get correctly diagnosed. I plan on writing letters to these doctors and letting them know that their misdiagnoses has cause me at least 3 years of unneccesary pain and turmoil.Today my doc ordered (since the bentyl and levsin never prevented or stopped my attacks) an upper gi and something else, to check for blockages. I am also getting a kenivac (sp?). This will test the function of my gallbladder.