If it's not chrons or ulcerative colitis, then what?

[minnieandmickeymouse]

In july 2008 I ended up in the ER because of bleeding with diahrea. I had been having painful cramping and diahrea for over a month before it got that bad. Before that in July 2008, I have been having problems on and off with diahrea, contipation, bloating, pain, ect.. for years since getting sick with e-coli, then something else in the intestines at the same time in 2001...ok, So I had a colonoscopy in Aug. 2008, they found nothing wrong, no chrons or ulcerative colitis. I had been put on acacol to calm the inflamation in my intestines. They simply said I have IBS..
So i've spent all this year with my back to normal on and off issues, until this past tuesday morning when that REALLY painful pain started again, and I have bloody diahrea. So now I'm in allot of pain, on a very simple liquid only diet again, and back to taking acacol.

I asked my regular dr. if he thought at all if it could be celiac disease, he says no, it doesn't cause the problems your having.
I truely don't understand how they can just say IBS. Once they tell you it's IBS, they tell you to figure out what is causing it, it's not their problem anymore. SOMETHING has to be upsetting my intestines to this point. So could it be an allergy to food?
I am in pain, I hate leaving the house for fear of what "could" happen. It's almost xmas, and I'm scared to death to eat real food becuase it's going to HURT! I'm also 4 days away now from starting my injections for IVF cycle!!!!!!

Any suggestions, or helpful tips to help with this would be great. I pretty sure I'm on my own here for figureing this out.

 

[Mkrop]

Find a different doctor, if you are not getting the results you want.

My mom just got part of her colon removed on Wed(literally waiting for them to call to pick her up from the hospital) because she has had several flare ups of diverticulitis. She has suffered with IBS issues all of her life. Five years ago she was hospitalized with her first diverticulitis, put on antibiotics, told to watch her diet (no seeds etc). She was fine until July 09, when she was hospitalized again, then in October and November. That is when they decided it had to come out. She has had CT Scans to determine what was going on. She had to have a barium enema to determine exactly how much to take out, they took out 12 inches of hardened, inflamed area.

GL and google diverticulits and if it is not that then I hope you find answers soon.

 

[Darcy03231]

Have you been tested for an allergy to wheat. What you're going through sounds similar to what a co-worker went through. After lots of tests she found out she was allergice to wheat. Once she cut anything with wheat/wheat germ out of her diet she was fine.

 

[clarabelle]

I know that ovarian cysts can cause some of those symptoms -so there may be some kind of tie in there?

 

[frndshpcptn]

I had all these symptoms (and tests, and meds, and the IBS diagnosis) and it turned out that while I don't have celiac, I do have a gluten intolerance.

Once I cut gluten compeltely out of my diet, all my symptoms went away.

And I had an upset stomach for about 26 years prior to this discovery...

You have to really cut out ALL gluten (find a book / website and really read up on it - I liked Elizabeth Hasselback's book best). When I cut out only wheat, the symptons still remained.

 

[minnieandmickeymouse]

I know that ovarian cysts can cause some of those symptoms -so there may be some kind of tie in there?

I don't have ovarian cysts. The only reason we can't get pregnant is DH had a V then a VR last year. We're going IVF to help his issue, lol.

 

[minnieandmickeymouse]

Have you been tested for an allergy to wheat. What you're going through sounds similar to what a co-worker went through. After lots of tests she found out she was allergice to wheat. Once she cut anything with wheat/wheat germ out of her diet she was fine.

I haven't been tested for any allergy. I only had the colonoscopy. My reg. dr. said when I saw him 2 days ago, he has wondered since last year, if it's something I'm eating that I'm allergic to. He gave me a list of 4 things that are most common and told me to stop eating 1 at a time for about 2 weeks and see if it gets better. On the list is: nuts, eggs ( I know I can't eat eggs), diary, and wheat.

 

[minnieandmickeymouse]

I had all these symptoms (and tests, and meds, and the IBS diagnosis) and it turned out that while I don't have celiac, I do have a gluten intolerance.

Once I cut gluten compeltely out of my diet, all my symptoms went away.

And I had an upset stomach for about 26 years prior to this discovery...

You have to really cut out ALL gluten (find a book / website and really read up on it - I liked Elizabeth Hasselback's book best). When I cut out only wheat, the symptons still remained.

It must be hard to find food without gluten in it. I do want to try this though because I have to figue out what is causing this to get so bad.

 

[minnieandmickeymouse]

My dr.. also said stress could be causing this? Anyone think that's is possible too?

 

[Teresa Pitman]

My son's previous girlfriend was celiac, and she had all the symptoms you describe before she was diagnosed. (I know - she was living at my house!) It was awful. Once she was diagnosed and began eating gluten-free it was like a miracle. So I'd give it a try. It's not as hard as you might think - there are plenty of gluten-free products out there.

Teresa

 

[Feralpeg]

OP, I really feel for you. My daughter was diagnosed with IBS when she was 15. Since then, she's had every test known to the medical profession. Nothing definitive has shown up, yet she suffers all the time from bouts of diarrhea, nauseous, blood sugar drops, hot flashes and has a rash that never goes away. It is so frustrating because it controls her life. Like you, she is afraid to eat many things. She is afraid to go out to a restaurant with friends for fear of having to run to the bathroom immediately and ruin every one's evening.

She has been tested for Celiac, Chrones and most of the common food allergies. Nothing. Recently, she went to an endocrinologist. Again, nothing was found other than that she was slightly anemic and very low on vitamin D. The doctor said it was because she does not absorb the nutrients from her food due to the fact that her intestinal tract works to fast. Our next step is to see a doctor at the Mayo Clinic in Jacksonville, FL. He specializes in people who have too rapid intestinal tracts. If he doesn't find anything, I don't know where we'll turn. There seems to be very few alternatives left to my daughter, yet I don't want her to continue to live like this.

OP, I know you are very frustrated and it is a terrible way to live. My heart goes out to you. I've found that doctors use the diagnosis of IBS when they are stumped. Sadly, most don't want to continue to probe for the real diagnosis. I hope they find some answers for you soon.

 

[marshallandcartersmo]

My dr.. also said stress could be causing this? Anyone think that's is possible too?

It did for me!

Years ago I was diagnosed w/proctitis....I remember the month before the sale of our house and wedding---my flare ups were HORRIBLE.

 

[frndshpcptn]

OP, I really feel for you. My daughter was diagnosed with IBS when she was 15. Since then, she's had every test known to the medical profession. Nothing definitive has shown up, yet she suffers all the time from bouts of diarrhea, nauseous, blood sugar drops, hot flashes and has a rash that never goes away. It is so frustrating because it controls her life. Like you, she is afraid to eat many things. She is afraid to go out to a restaurant with friends for fear of having to run to the bathroom immediately and ruin every one's evening.

She has been tested for Celiac, Chrones and most of the common food allergies. Nothing. Recently, she went to an endocrinologist. Again, nothing was found other than that she was slightly anemic and very low on vitamin D. The doctor said it was because she does not absorb the nutrients from her food due to the fact that her intestinal tract works to fast. Our next step is to see a doctor at the Mayo Clinic in Jacksonville, FL. He specializes in people who have too rapid intestinal tracts. If he doesn't find anything, I don't know where we'll turn. There seems to be very few alternatives left to my daughter, yet I don't want her to continue to live like this.

OP, I know you are very frustrated and it is a terrible way to live. My heart goes out to you. I've found that doctors use the diagnosis of IBS when they are stumped. Sadly, most don't want to continue to probe for the real diagnosis. I hope they find some answers for you soon.

I tested negative for celiac as well - but I swear that cutting ALL gluten out of my diet has made a complete and total difference in how i live my life. I

was diagnosed with IBS at 7 years old - I literally had stomach aches (and all that goes along with it) my whole life.

At 20, they tested me for Celiac. Negative.

11 years later, I read the G-Free Diet book and tried it. just to see.

It's the first time in my life that I've been stomache ache free.

I'd really reccomend she try it. Not all people with gluten intolerance test positive for Celiac...

 

[JESW]

So sorry that you are going through this. I have IBS (seems to be the catch-all when nothing else shows up) and it really flares up when I am under stress. My dr. recently prescribed me the medicine LIBRAX and it has worked WONDERS for me!!! I looked up reviews on-line before I started and it had mostly favorable reviews - with very few that said it didn't help them at all. The meds also have an anti-anxiety bit in them which helps take the edge off for me. You may want to check it out. I also found that probiotics (the ones you have to keep refrigerated) helped and I found them at Whole Foods.

Later today I have to go in for an abdominal CT scan to do further testing. I had an u/s to check my gallbladder (fine) but they found I have a fatty liver. So now the CT scan is to see if anything else is going on. In two more hours I have to start drinking the barium...yuck!

Good luck to you! I know what it's like to be afraid to go out for fear of not finding a bathroom in time...not a fun way to live.

Jill

 

[minnieandmickeymouse]

I tested negative for celiac as well - but I swear that cutting ALL gluten out of my diet has made a complete and total difference in how i live my life. I

was diagnosed with IBS at 7 years old - I literally had stomach aches (and all that goes along with it) my whole life.

At 20, they tested me for Celiac. Negative.

11 years later, I read the G-Free Diet book and tried it. just to see.

It's the first time in my life that I've been stomache ache free.

I'd really reccomend she try it. Not all people with gluten intolerance test positive for Celiac...

This is what I have heard, that many with celiac will test neg. and even people who do test pos. may not even have it. So I guess it doesn't sound like a very reliable test to me. The best test seems like going on a gluten free diet. Is there a good list of gluten free foods in EH book, the g-free diet? Maybe I should ask DH to get it for me for xmas, lol!

 

[minnieandmickeymouse]

So sorry that you are going through this. I have IBS (seems to be the catch-all when nothing else shows up) and it really flares up when I am under stress. My dr. recently prescribed me the medicine LIBRAX and it has worked WONDERS for me!!! I looked up reviews on-line before I started and it had mostly favorable reviews - with very few that said it didn't help them at all. The meds also have an anti-anxiety bit in them which helps take the edge off for me. You may want to check it out. I also found that probiotics (the ones you have to keep refrigerated) helped and I found them at Whole Foods.

Later today I have to go in for an abdominal CT scan to do further testing. I had an u/s to check my gallbladder (fine) but they found I have a fatty liver. So now the CT scan is to see if anything else is going on. In two more hours I have to start drinking the barium...yuck!

Good luck to you! I know what it's like to be afraid to go out for fear of not finding a bathroom in time...not a fun way to live.

Jill

I hope that your CT goes well, and that your liver is OK. (((HUGS))) to you too. This isn't a fun thing to have

 

[Palmtreerun]

I've suffered with IBS for about 20 yrs. I've seen a few gastro's and all seem to have the same thought - Treatment is different for everyone. I've been told it is caused because the cilia that are inside the intestine lie flat - they don't move up and down which helps move things along at the correct speed in the intestine. When they speed up too much water is also pushed through which causes diarrhea and when they lie flat no water hence constipation.

It took me a long time to figure out what foods and situations cause the flare ups. Keep a journal - you should be able to see a pattern after some time. But it won't happen over night. Take the meds to treat the symptoms until you find out the trigger factors.

For me, running has been a godsend since I was affected mostly by constipation. No more meds needed...although I do need to stay close to home when I run. Good Luck. This is not an easy disease to deal with.

 

[NatashaDisneyCM]

I have the exact same thing, BUT they also found ulcers-rations on the distal part of my ilium.
I have to eat a VERY strict diet, one I have gone off lately, and now I am paying for it. Mine IS total stress related and onset of crohn's. You have to go with a low ash diet, trust me, it so helps! and I am back on it as of this week~end! I can no longer stand the pain or blood!

 

[Inigo]

Just wanted to send

Don't give up. Find another doctor, and if that doctor doesn't know what it is, find another doctor. To use a medical phrase, so many doctors hear hoofbeats, and look for horses. You need a doctor who will hear hoofbeats and who looks for zebras. Obviously you don't have something easily diagnosed.

I have crohn's disease, and it was a chore getting it diagnosed. I had all sorts of tests and no answers. I was at the ER every little bit with pain, vomiting, and bleeding. No one knew what was wrong, so they gave me drugs and sent me home.

We had always been told the podunk county hospital was just a podunk county hospital, so we would drive 15 minutes up to Indy whenever I was sick to go to the ER. One night, I was so sick, I told DH I thought I would die before we would make it up to Indy. He took me to little old podunk Johnson County Hospital. The next thing I knew a surgeon was introducing himself. He said he thought I had crohn's and he was operating the next morning to confirm the diagnosis. He was right. I cried just to know IT had a name. Once it was named, it could be dealt with.

 

[mjkacmom]

This is what I have heard, that many with celiac will test neg. and even people who do test pos. may not even have it. So I guess it doesn't sound like a very reliable test to me. The best test seems like going on a gluten free diet. Is there a good list of gluten free foods in EH book, the g-free diet? Maybe I should ask DH to get it for me for xmas, lol!

I tested negative for celiac, but I was on a gluten free diet at the time (my symtoms went away 12 hours after I started it). My cousin's kids have celiac, and 2 of my cousins have tested positive as carriers, even though they don't have it. If it's a gluten issue, you will know very soon after you give it up (and it's hard - it's in many foods you wouldn't even think of, like licorice). There are books out there to help, and websites. I gave up on the diet, but need to go back on. I've had a lot of testing, and have some diagnoses, but they are vague (inflamation, colitis). Really, try gluten free for 24 hours.