Well, I hear you loud and clear and can relate to most of what you are going through. First, I would say that any time your stomach or entire intestinal track is not happy, it's exhausting. It really zaps the strength from you and tires you out, so you are not imagining anything there.

I'm wondering why she, your dr., didn't suggest an endoscopy with the colonoscopy rather than another CT scan. That way, they can collect samples to see if it could be another one of the bacteria types that typically plague us. There are several probable contenders to chose from, and brace yourself for the possibility of finding nothing. Before my CVID diagnosis I was constantly running to the GI doc. declaring over and over that there must be something you are missing!! how could I be so miserable and be 'fine'. How frustrating. But, sometimes they did find clostridium difficile or some other bacteria that may be normally found in healthy people that has overrun our weakened systems. The symptoms are typically fatigue, loss of appetite, cramps, flu-like, just basically making you feel like crap and feeling like you need to be in bed napping most of your waking hours. The Chinese people have a saying that 'death begins in the gut' or something close to that. I really understand what that means now. When your gut is not working smoothly it can steal your life away.

Here's the rub though.. with the abdominal issues you probably will not always get an answer. It can be very hard to trace down exactly what bacteria, parasite, or virus might be causing all of the trouble. I have given labs countless numbers of stool samples, which is no joy in itself. My thought is usually, 'not this again!!'. Some doctors will just refuse to treat you if they cannot find the exact cause of your flare up however. It took me awhile but I finally found a GI doctor who had at least heard of CVID and had a clue. There are several approaches for long term treatment mostly involving slowing everything down and being on prophylactic antibiotics directed at the types of bacterial infections we are prone to. That doesn't mean however that problems are over for good. I take double doses of drugs like Nexium that can actually heal internal sores and stop the bleeding when and if there is any. Thank God for these drugs. If you and your dr suspect something more sinister is at work you should be able to get the stronger anti fungals that will usually knock anything out within a couple of weeks. Those have to be used prudently or they will lose their power over time. All of this is fine, but it's so important to get a repore going with your doctor so you do not have to wait endlessly for sample studies when you are really in trouble.

With all of that being said, there are really not allot of definitive answers for us. I can go through longer periods now of nothing going on, calmness... but then if I get run down or push myself too hard, there will be a flare up and then it's treat as you go. I was hospitalized one time for 5 days and they never figured out what the cause of my symptoms were but, they were able to get me through it and put me back on the right road. That was accomplished with a constant dose of mild tranquilizers and some IV anti biotics and fungacides.

Symptoms that something is coming or things are getting off track are pain, bloating, lots of gas, discomfort throughout your abdomen and intestinal tract. Sometimes there will be intense pain primarily on one side of your body. Sometimes you can literally feel the infection moving through your system. Depending on the source of the infection will determine whether you have loose bowels or if you are constipated, which for me is almost never.

Princess, I apologize for going on so long here. I think I am trying too hard to find you a simpler answer but I just can't. It's complicated and difficult, but it does get better with time. I feel like the longer I have been on IVIG, the better my insides have become. I hope the same will be true for you as well.

In spite of all of this, you should still be tested for ulcerative colitis, or diverticulitis. The treatment for these would be very different. I know that ulcerative colitis is another autoimmune disease but it is very serious and needs to be treated agressively. We have it bad enough, but people with UC have it pretty hard.

Anyways, I'm sorry I can't come up with better answers, but it's just so typical of the CVID 'personality' I call it. Definitive answers and statements are few and far between.

I have had GI problems all of my life that haven't gotten much worse over the last 7 years or so. I realized something was wrong when my stomach hurt all the time, when I had constance diahrea, and when I noticed myself looking for the bathroom in every place I was in before I would notice anything else.

I found out first that I had giardia, and I took the medication. Then I found out I had 2 gastic stomach ulcers and were treated for those. Then I found out that my stomach was eating itself, and was treated for that. Then I tested positive for SIBO (small intestinal bacteria overgrowth) where you have too much bacteria in your intestines. I was treated for that. Now I take immodium every day if not twice a day and I still get diahrea and vomitting to the point where I have accidents, some times at work even.

Because of the diahrea my body only absorbs about 10% of the vitamins I take in so I have a B12, D, C deficiencies which explains why I am tired all the time. Luckily my sister has a masters in nutrition so she recommended a vitamin regimine for me. I take the Alive supplement, but I also take a B12 every day and drink slim fast. I know slim fast sounds funny because it is a weight loss drink and because of the diahrea I am extremely under weight, but slim fast has a TON of vitamins in it that my body isn't getting and she gives it to deficient patients at the hospital. She also says if you are taking a vitamin you need to know which ones work best with food and which ones don't. Vitamin b12 should be taken with food, calcium should not.

I'm sorry I wrote so much, but I hope some of it is helpful, and know that you are not alone in this. :)

Great job of summarizing allot of the specifics that I just couldn't seem to come up with. I forgot about the giardia.. that was fun. The bacterial overgrowth is usually pretty easy to take care of but has a nasty habit of coming back over and over. At some point there has to be some humor in it... how many times have you walked out of the doctor's office with test instructions and a bucket with a plastic spoon... at one point one of my specimens had to be divided into 8 different containers, 2 of which had to be frozen immediately. The last time I did that I said no way am I doing this again damnit. It's disgusting.

lately i have pains whenever i eat anything. from the very second i eat and now even when i dont eat. its been around for the past two years basically but worst the past two weeks and even worst past few days.
seeing the dr again on 16. might need colonoscopy or something

Thank you for all of your responses! Fezzy, don't worry, your response was informative and helpful, and I read the whole thing.

I guess, now that you mention it, I've had GI troubles for a very long time too. I remember when I was a kid at school I'd be in such severe pain every day and my stomach would be bloated and gassy--not a good way to make or keep friends! :-P Since people have become more aware of lactose intolerance, I've kind of chalked a lot of those problems up to that, and haven't thought much about whether it could be from something else. Overall, the level and frequency of pain that I experience has significantly diminished since I eliminated dairy from my diet, but sometimes even eating rice will trigger the bloating, gas and pain to the point where I will look pregnant.

I also have noticed a significant improvement (compared to about 4 years ago) since I started taking probiotics every day and have recently added daily enzymes. I also have prescription Prilosec, but I take the regular dose, not double (although I was on that for the 10 days that they treated me for the H. Pylori).

Perhaps I just needed something significant like bleeding to make me realize that there's something abnormal going on...I tend to minimize my symptoms at times and lose sight of the fact that it's not normal to experience things like these.

Colonoscopy humor
by Dave Barry
Dave Barry's website

This is from news hound Dave Barry's colonoscopy journal:

I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ

that appears to go all over the place, at one point passing briefly through Minneapolis.

Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'

I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of Americas enemies.

I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor.

Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, and then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons.) Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.' This is kind of like saying that after you jump off your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: Have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of involuntary spurting. I was thinking, 'What if I spurt on Andy?' How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn't thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.

When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point. Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate.

'You want me to turn it up?' said Andy, from somewhere behind me.

'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, ABBA was yelling 'Dancing Queen, feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood. Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that it was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

Hello, Princess. First of all, I am sorry that you are continuing to experience GI problems--they are miserable. GI issues are hard to diagnose in regular people but for those of us with immunodeficiency, I think it can truly be a challenge for both us and the doctors.

I have had GI issues for the majority of my life, major ones since 1999 when I was diagnosed with Crohn's. Yesterday, the GI doc at USC told me that I probably was given a false diagnosis of Crohn's in 1999--chances are that I already had CVID (nobody checked for IG deficiencies at that time) and what I was experiencing was an IBD that mimics Crohn's. It looks like Crohn's, acts like Crohn's and responds to treatment sort of like Crohn's but officially, it is immunodeficiency inflammatory bowel disease instead. And there are issues with bleeding with CVID--our platelets can look okay, and be at a normal level but still be defective where we bleed easily.

You really need to see a GI specialist who knows about PI. Can your doctor at Stanford recommend somebody?

Sending you all good wishes and lots of love.

thank you princess for your kind words. I think we just set the record for the longest responses to a subject EVER.

This might be of interest to you regarding the IBD. I'm not sure that most doctors even recognize that. They are just thinking 'irritable' bowel syndrome, not immunodeficiency bowel syndrome. Chances are they might not know allot about that. The strategy will be to look for everything they can think of. Afterall, they are pipe cleaners really. I could be wrong on that, but don't be surprised. That's just how they operate. The closest thing they treat is IBS which is just a trash can diagnosis,meaning they can't find anything. Do you actually believe with CVID that there wouldn't be pathology involved?? (that's what I would like to say). Nervous stomach, da da da, whatever, we have real things happening on a molecular level that are forever being shuffled around.

Anyways, if you can get a good GI doctor that will listen and hear you, you get a prize. I haven't figured that out yet, but give me some time.

I am going to copy some of this and take it to my doctor. I have come to a point where I think I need a stronger profalictic antibiotic. The last year I have been on them and off them and on them and off then again... on it goes. After I finish a cycle within a few days the pain returns, the flushing red face and intermittent fever, the loss of appetite, the only thing I can stomach is usually sweet. I am not going to go through testing every time this happens. When you are queazy already, it doesn't help to have someone hand you a white bucket with instructions and sends you on your way. Enough with that.

I hope so much that you can resolve your issues with a simple fix. You deserve it. You are the kindest, most wonderful person. I hate hearing of so much suffering, especially you lately and some of the younger women and children. I know that it is not always that way Mark, but for the suffering that does exist, I am sorry.

I would defiantely go and get check out.. The endoscopy with the colonoscopy would definatley show more and they can take samples.. if you can skip the ct scan..
I was diagnosed with Chron's in 2001. But now they are saying that it was really CVID with re-occuring giardia.. I was wondering why the past 10 years the steroids and meds didn't help. :/ but since i have been doing the IVIG i have been much better..

FYI: the poop cultures for giardia don't really show anything unless you have major colonies going.. so those test are kind of a waste..

I wish there was a magic drug to make everyone better.. CVID can be very depressing and can really suck sometimes.. but I am really glad to have this support group so I know I am not the only zebra in the pack of horses in this world..

Here, here!! We are incredibly lucky to have each other. I don't believe that anyone could ever understand just how we feel without having suffered with it themselves. We have our Board now, and for that we must be grateful. Finding you all and sharing our stories has been uplifting. It is just such a mysterious and tricky disease that makes it so difficult to deal with. We are playing against a true villian! Key word = 'WE'.
Thank you to everyone for sharing such personal stories.

So...I saw the GI doc a few days ago, and I think maybe that I lucked out! He seems familiar with CVID and that it can be associated with all kind of stomach / intestinal infections, as well as colitis / crohn's. He's also a proponent of natural medicine if it works, and recommended that I take a laxative (Miralax), Benefiber, Acidophilus, and peppermint oil soft-gels for 2 weeks to see if it helps. I'm also scheduled for a colonoscopy in about 2 weeks.

oooh im scheduled for an endoscopy with the colonoscopy on the 31st

hoping he finds something