At war with my stomach

I'm in need of a good rant and cry, so excuse this horrendously long post.

Basically, my stomach and the muscles around it don't work. At least not very well, so I tend to have serious digestion problems after meals and it's all slowly ruining my life. The doctors are calling it IBS simply because they haven't found anything that appears wrong yet. It's been going on since I was eight years old and, to me, seems to continuously get worse. First I turned lactose intolerant, then a few years later I cut meat from my diet. By 15 I wasn't able to each much aside from grains, and it's continued that way. Tonight I've discovered that I've turned intolerant to olive oil.

I weighed around 95 pounds (43kg) at 15 and now, at 22, weigh 86 (39kg). As I'm only 4'11" it's not massively underweight, but it's frustrating that anytime I try to gain weight my body decides against it: I'll get ill for a few days and sometimes end up weighing even less. 

I've been through too many medical tests to name, have spent the past three years trying different medications to see if they'd help, and I can't say I've seen any improvement. The most doctors can do is label me as having IBS, which comes down to meaning absolutely nothing. It's sad, but I'd actually be happy knowing I had some horrible medical condition just so I knew what was wrong and the doctors might be able to go about fixing it.

While it's one thing dealing with the physical side of it, it's the mental aspect that's really starting to get to me. Every time I have plans to do something, I stress because I think my stomach might cause a problem. And then stressing only makes my stomach react even worse; it's a viscous cycle. If I'm in a comfortable environment and there's a toilet nearby, then I can cope. But now that I've moved to London I find it's becoming more difficult to deal, especially with public transportation and such. Whenever I do travel or have to be somewhere important, I (horribly) opt not to eat simply to avoid all problems. I sometimes call this being "involuntarily anorexic". It's not that I don't want to eat; I would love to have a meal like normal people and not worry that a few minutes later I'll be in agony. But even that process has caused problems, as I once opted not to eat before a long flight and passed out on the plane from lack of food. Since then I've tried to eat sensibly whilst travelling or even take preemptive medication like Immodium.

I lost my job two weeks ago because of this whole thing. I had been working in a museum, but whenever I was having issues with my stomach, I couldn't bring myself to go in. Not only is a Tube ride miserable when you're feeling that nauseated, but during my shifts I was literally not allowed to leave my assigned room for the toilet unless someone came to cover for me. I'd have to radio a manager and it could take up to twenty minutes for them to finally show up, and my bowels aren't exactly patient. So I must have called off one too many times because I was told not to bother coming in anymore. I'll admit I never told them I had issues, mostly because it's really not easy telling people that I have diarrhea rather often (and it's not something anyone wants to hear about either ). The one good thing that has come out of this is that I did hate that job, but I would have preferred to have left on my own terms.

To top it off, all this stress has pushed me to the point of becoming severely uncomfortable in enclosed spaces and over the past year I've developed claustrophobia. I nearly had to leave a cinema earlier this week because I felt like I was suffocating - and a scene on an airplane really didn't help the matter. A short flight two months ago turned into a two-hour panic attack. 

I feel like I take a cocktail of pills every morning, and it's starting to seem pointless. My GP has at least been trying to find a good medication for me and has also signed me up to attend some anxiety therapy which that could potentially lead to more time with a psychiatrist, which I obviously really need (but of course there's that waiting list). I just feel awful, like I really don't have much of a life, and I hate making my BF put up with it (yet I realise how lucky I am that he does).

My apologies for rambling forever, but I'm having a particularly rough night and am feeling incredibly depressed. 

Have you or your doctors ever considered Crohn's? I was diagnosed with it earlier this year, and from all the reading I've done on it, your symptoms sound very much like it. If so, you might see if a doctor would be willing to let you try Humira. It's a TNF blocker and seems to work wonders for people with Crohn's. A lot of people go undiagnosed for a long time, and some severe forms do start from a very early age, so it's worth asking!

I was also thinking of Chron's

Uggh, sounds terrible. Hopefully you can some relief soon 

Grains can sometimes irritate people's IBS/Chron's/candida problems.  It's something you could bring up with your doctor.  I used to have IBS, not quite as bad as what you describe, but pretty bad.  It's not fun.

I really suggest you read a book called "Life without Bread".  It mostly focuses on things like GI problems and autoimmune disorders associated with grains (and other dietary sugary foods).  It's a bit of a 180 from your current diet, but it's something to at least consider.  You can throw it across the room if it's not for you, but there are people who've found some relief with it.

Good luck.

Have you or your doctors ever considered Crohn's? I was diagnosed with it earlier this year, and from all the reading I've done on it, your symptoms sound very much like it. If so, you might see if a doctor would be willing to let you try Humira. It's a TNF blocker and seems to work wonders for people with Crohn's. A lot of people go undiagnosed for a long time, and some severe forms do start from a very early age, so it's worth asking!

I think I have been tested for Chron's as it was one of the first things my doctors thought of as well. To be honest I've lost track of all the tests. I was going to a gastroenterologist in the states and I'm pretty sure she had a few tests to rule that one out (Upper GI radiology, blood tests and an ultrasound). I'm planning to visit the doctor soon and will bring it up along with that medication to see what she says.

I'm sorry to hear that you have it, but I hope you've been able to adjust to Chron's. Stomach problems are simply miserable.

Grains can sometimes irritate people's IBS/Chron's/candida problems.  It's something you could bring up with your doctor.  I used to have IBS, not quite as bad as what you describe, but pretty bad.  It's not fun.

I really suggest you read a book called "Life without Bread".  It mostly focuses on things like GI problems and autoimmune disorders associated with grains (and other dietary sugary foods).  It's a bit of a 180 from your current diet, but it's something to at least consider.  You can throw it across the room if it's not for you, but there are people who've found some relief with it.

Good luck.

Overactive yeast/candida isn't something I've been tested for (from what I recall), and it's probably a test I should have! While you're right that it would be a complete 180 from my current diet, it would be worth changing if it's going to help. Although the thought of a life without bread is slightly terrifying! I'll definitely bring this up with my GP.

Candida is not the only reason to look at reducing/eliminating grain intake if you have problems with chronic diarrhoea. If it did turn out to be that, you'd have to look at your other sources of dietary sugars which could be feeding the yeasts.

Grains can also irritate the colon.  Let me rephrase that-grains do also irritate the colon.  It's how fibre works to help you go to the loo.  Basically, part of the reason high fibre encourages you to move your bowels is the fact that it irritates the lining of the intestines and this causes a mucus to form to help things slip through.  It's useful in diets with moderate or low fat content, but it can also cause problems in people who have sensitive intestines.

Then there's the auto-immune and allergic problems with grains.  Coeliac disease is just one of these auto-immune diseases where the body responds to the proteins in wheat and other grains.  Coeliac disease can have chronic diarrhoea as a symptom, but it's not the only auto-immune response which does.  Some people sensitive to gluten and lectins in wheat also find some relief in eliminating most dairy. Ghee doesn't have casein in it so some people who have auto-immune response to dairy can use it.  It also has a relatively high smoke point, so it's a useful ingredient for people wanting to avoid allergens in some other oils.

I am not saying it's a definite answer, and I wish that my mother would listen to me when I bang on about her giving up wheat (she has a horrible case of IBS or Crohn's).  She's just too stubborn to even look into it, so she suffers, unfortunately.

Sorry to hear about all your digestive woes.  As someone who also has them, I totally sympathize.  No fun at all!   

You mention that your stomach and muscles around it don't work very well.  That sounds a lot like gastroparesis to me.  Did you have a gastric emptying study done?

You mention that your stomach and muscles around it don't work very well.  That sounds a lot like gastroparesis to me.  Did you have a gastric emptying study done?

The closest thing I've had is an upper GI with barium (and goodness that was horrid!).  There is evidence of the muscles cramping too much or not moving at all; it's like they do nothing for a while (sometimes a few days) and then are suddenly stimulated by something I eat. So the majority of the medication I've been on is related to keeping the muscles moving, but at a normal pace.

I just looked up gastroparesis and saw that the main symptoms include nausea and vomiting. I can check off the first one, but I've not had any vomiting issues, which I suppose I should be thankful for!

Candida is not the only reason to look at reducing/eliminating grain intake if you have problems with chronic diarrhoea. If it did turn out to be that, you'd have to look at your other sources of dietary sugars which could be feeding the yeasts.

Grains can also irritate the colon.  Let me rephrase that-grains do also irritate the colon.  It's how fibre works to help you go to the loo.  Basically, part of the reason high fibre encourages you to move your bowels is the fact that it irritates the lining of the intestines and this causes a mucus to form to help things slip through.  It's useful in diets with moderate or low fat content, but it can also cause problems in people who have sensitive intestines.

Then there's the auto-immune and allergic problems with grains.  Coeliac disease is just one of these auto-immune diseases where the body responds to the proteins in wheat and other grains.

I think grain is something I'm going to have to investigate. I have been tested for coeliac disease so that's at least ruled out, but the yeast may be of some concern because there's a lot in my diet that could be feeding it.

I've had lots of fibre issues. For the longest time all the doctors told me to do was increase my fibre intake, which I did, and then later I'm told that maybe I should only be eating a certain type of fibre. The doctors I've seen have all had differing opinions, so now it's down to figuring out which type of fibre actually helps me, because some of it makes my symptoms worse.

Eating really shouldn't be so complicated! 

As the mother of a 4 year old child just diagnosed with non-specific Inflammatory Bowel Disease and a sufferer of IBS myself, I think you need to start fresh with your tests and a new specialist in the UK. Not knowing what you've been tested for is not helping you now and the tests may not have been accurate anyway.

The ONLY way to get a definitive celiac diagnosis is via a colonoscopy where they take a biopsy. The blood test is NOT adequate. My son is fortunate to be seen by one of the best departments in the world for celiac research and this is the only way they will rule it out. It is also how they found he does have IBD. But he was tested for all sorts of food allergies and other conditions as well and at one point was misdiagnosed with eosinophilic colitis.

In the last 5 years there are new food allergy tests you can get that are done very differently than the blood and prick tests - not sure if they are widely available, but you can try to find out.

You also could just try to eliminate one food at a time and see if that helps but it sounds to me like you really need to have a brand new re-evaluation. It seems to me like you're in danger of becoming a total slave to your stomach and given that from your posts you don't seem to really know what has and has not been ruled out, or how accurately, it's time to reassess.

FWIW, yes, fiber can cause the problems they are supposed to help. Some fibre will increase diarrhea, others can help you bulk up. I think you can find lists online.

Feel free to PM me if you'd like more info. As I said, my son is in the thick of this and we're on round 2 of some new meds. He is fortunate in that he does not have pain or fear of accidents yet. But we are struggling with potty training and finding the correct diet for him (as of now, he's not on any restricted diet but we may have to revisit that).

Good luck!

I have gastroparesis, and I never had any vomiting issues, so it is possible to have it without vomiting.  (I'm not sure if this is a rare presentation though)

I also have GERD, Barrett's Esophagus, and severe IBS/colonic dysmotility.  I've gone through the diagnostic odyssey of what feels like every test known to man (with some tests more than once), and have seen 3 different gastroenterology specialists.   

You're absolutely not alone feeling like this.  It is really really tough to get through life with severe GI problems, especially ones that aren't immediately visible to others.  I understand the feeling of taking a cocktail of pills every day, and I also once lost a job due to my symptoms when I didn't have them under control, so that's another frustration I can relate to.

*hugs*

What about seeing another gastroenterologist?  Have you had an upper and lower scope with biopsy?  Blood tests alone aren't definitive diagnostic tests for some conditions like Celiac's and Crohn's.  Also, you might want to look into food allergy/intolerance tests to see if something may be setting you off - or you could try your own strict food elimination diet and try to figure out yourself if you can make a pretty comprehensive list of specific foods that set off your tummy. 

If you ever need to talk or vent, feel free to PM me.  I completely know where you're coming from, and I know what a hell it can be.  Best of luck!!!!

I would also recommend having the biopsy to test for Celiac disease.  Both my mother and her mother have it.  In my grandma's case, she suffered for most of her adult life with the types of symptoms you're describing.  She was diagnosed first with IBS, then with Crohn's disease.   It wasn't until my mom was diagnosed with Celiac that my grandma got tested (the biopsy test.  Not sure if they'd previously done the blood test).

Now that she's on a gluten-free diet, her health has improved immeasurably.  Not only does she no longer have the bowel issues, but her overall energy has improved, and a lot of other things, like joint inflammation, have resolved themselves as well.

I don't have any new information to add, I just wanted to wish you well. I have lots of problems with my stomach, too. I've started only drinking soya milk, and having soya based products, and take lactose enzyme pills if there's a chance any food item will have milk or milk derivatives in it(like whey,etc).

But, I still have to be really careful. I carry what I call my "insurance" around with me, just in case something happens. Hopefully there's a toilet around somewhere, but, there've been times when there hasn't been(i.e. waiting at the bus stop), and it's been horrible. Had to wait until I got to work to sort everything out. Eeek. I always have to make sure I use the toilet before I go anywhere at all, even after I've just eaten.

I haven't been tested for anything, though. I just sort of deal with it. It frustrates DH, though, because of the risk factor.

I hope the doctors figure out what your situation is, elle!

Thanks everyone for your responses. It's becoming quite obvious to me that I need a lot more testing/retesting done. My GP in the states didn't take me seriously so she never had me tested for anything, and it wasn't until I went to a gastro the last two years I was living there that I started having some tests done. But that gastro was quite strange, so it'd probably be worth going to someone who is a little more sane. (Her entire office and operating rooms were filled with stuffed animals and other frilly tat ) It was just so easy to accept the doctors' diagnosis when they said they gave the test results and said everything was normal in such a definitive manner. Perhaps I'll have better luck with tests over here.

I'm so sorry to hear that there are many of you who struggle with stomach issues as well, but it is a slight relief to know I'm not the only one. None of my friends or family can really understand what I'm going through, which makes things all the more frustrating.

Well, obviously nutrition is a problem, so I can't see how your blood tests would possibly be normal. Also, blood tests are not definitive for Crohn's, you need a full workup, which unfortunately means a colonscopy and possibly an MRI and x-rays. Definitely worth asking your GP to get referred to a gastro!

Well, obviously nutrition is a problem, so I can't see how your blood tests would possibly be normal.

I know, right? That was particularly frustrating. The gastro kept saying things like, "well, you appear to be healthy and fine", which is strange considering I know my diet isn't giving me everything I need, and I certainly was not feeling healthy or fine.