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trying to figure it all out!
mtwylie posted:
Gosh, where to begin...short story: I had diarhea pretty much all the time for about 8 years and was told it was IBS. In June of this year I started vomiting and could not stop for 10 solid days. While in the hospital they found that I have colitis throughout my colon and a pair of ulcers in my stomach. Doctor tested my up, down and sideways and says it looks like Crohns, but the blood tests and biopsy results have all been negative. Had another 10 day bout of vomiting late in October. Today I found out about Cyclic Vomiting Syndrome and cried as I read the description that sounded like it came out of my own journal. What the heck is going on? How can I have all of this stuff going on at the same time?????
Anyone have any thoughts? By the way, Mindy, it was hard to read your story. All I can tell you is that I keep coming back to surrender and faith. I just don't think there are any other answers.
arbob5 responded:
Frustrating to say the least. Unfortunately, it seems like so many of us have to wait, be tested, wait some more, be tested more, etc. etc. before we get a diagnosis, and sometimes the diagnoses is wrong. It happens all too often, unfortunately.

The answer? I wish I knew because I'd be a billionaire by now. We just have to put faith in our doctors and "hope" they come up with the right answers. Sometimes they do and sometimes they don't, but on the other hand, quite possibly it's not the doctors, but the lab techs. So much could be misinterpreted. Sad, isn't it? Just don't give up...keep at your doctor until you find some relief with the treatment they're giving you. Lots of meds out there. Hopefully they'll find the right one for you.

We care here on this site...keep us posted because we really do care.
mtwylie replied to arbob5's response:
Hi arbo5. Cute dog! I have a little boy Yorkie dog, just 5 lbs and I know just what you mean about the whole dog thing! Right now I don't have all that much faith in the medical profession in general. I am educating my self, supplementing, juicing and observing/journaling/adjusting my diet. I've been reading up on the Specific Carbohydrate Diet and my doctor wants me to try phase one of the South Beach Diet. Both of these are REALLY STRICT! Let me tell you, if you could see my figure you would know that I am not a person who has been sucessful with dieting! But I have quit smoking and drinking, cut way back on OTC NSAIDs and modified my diet quiet a bit. This may be one of those serenity prayer things in the end, so I'll just keep improving what I can. Thanks for replying and listening on...
miserable_sob replied to mtwylie's response:
Have you thought about giving worm's eggs a shot? I don't know if they'd work in your case. I have heard a lot of success stories though. But the eggs are expensive and not easy to attain either.
arbob5 replied to mtwylie's response:
If you have success with any of the diets you mentioned, by all means try them, and some advice...give them some time to work. Be patient and if you do notice a difference and an improvement,Thank the Lord! I would really rather adjust my food intake than take the meds I'm on...not only do they all have side affects (so far I'm not bothered too much!!!), but they cost so darn much. My Lialda, if I were to buy it without my pharmaceutical allowance, would be $5.00 a pill!!! Can you imagine that? I can't afford it even WITH my pharmaceutical allowance...I pay $110 for a 3 month supply, BUT almost $1900 comes off of my $2840 allowance for the year! Yikes...So my GI doctor tries to get samples for me whenever possible, but that's not always possible. I'm up a creek with this med, but it works wonders for me along with my Lomotil and my probiotics.

So, hang in there. Again, if adjusting your food intake works, keep it up. That really is the most sensible thing to do. Keep us posted, ok?

And yes, I think my little Bella is adorable, and she's quite a good dog too. Full of mischief, but so much fun!!!! We love her so much. And I swear, while she's a lot of work sometimes, she is so worth it.
OyWithThePoodlesAlready replied to arbob5's response:
I'm with you arbob - if diet works that's the best! I've actually had a lot of success with diet - I'm just on 6.25mg of prednisone right now - I might need to take it up to 7.5 but at least I'm below the magical 10

I know it seems overwhelming when you're thinking about it but, really, once you start feeling better, its not that bad. I went gluten free 6 years ago (and had about 3 years of remission from that alone), at first it seemed overwhelming and there was no way I could do it, but it made such a difference, I just started associating the foods with the bad feeling, then it wasn't so hard to avoid them.

it is annoying that different things work for different people, but when you find what works for you, its all worth it.

good luck!
arbob5 replied to OyWithThePoodlesAlready's response:
It's like being glucose intolerant.....I know what I can and can't eat....If I eat something that's dairy and I don't take the meds for intolerance, I'll suffer. But, watching my diet and being mainly dairy free, it does make a difference. Same with salads. Sometimes they don't affect me at all but other times, good Lord, it's like an explosion!!!! Sorry to be so graphic, but it's accurate. So diets of any kind, if the help, stay on it. If they don't, try another one. It can make all the difference in the world.
mtwylie replied to arbob5's response:
Hi again. The truth is that I am a bit overwhelmed about the food thing. I've always been a good, fun adventurous cook and hostess--a foodie! Since I've always been a big girl, I spent a lot of time and energy educating my self about nutrition and diets, etc, and incorporating what I thought were healthful things into my diet in an attempt to be a healthy big girl, if never thin.This is a very new thing for me--my problem has always been too much passion about the glories of food, not fear of the next grain, dairy, fat, carb....blah blah blah blah!

My most difficult symptom is severe nausea and uncontrolled vomitting (I know, not typical). That comes and goes, but the diarhea is more or less chronic. I never know what will set me off vomiting, and there is so much conflicting information about food that I am just afraid to eat much of anything. When I do eat I feel like I'm holding my breath to see how I am goind to react. I know if I could figure out what sets me off, avoiding that thing or set of things would not be so bad. But at this point I can't tell if any food modification makes any difference.

I still cling to the idea that somehow I can control this disease, so it makes me that much more frustrated when I can't seem to control what I eat! It's Christmas and I am surrounded by chocolate chip cookies and Sees Candy. So I tiptoe around my dinner plate then sneak a cookie!

I won't stop trying because I am wired never to give up! And I really, really hate the idea of having to go down the pharmaceutical route. I am taking Asacol and Sucralfate daily and compazine or phenegran when I flare. Also handsful of various supplements.

I have arthritis in my lower and mid back, and have not been taking much pain reliver (understand it can bother the gastro lining and liver). I guess arthritis sometimes accompanies Crohns...anyone else have that going on? Anyway I am trying to learn new pain management techniques but the cold sure makes it hard. Hot baths help, but I can't live in the tub!
sheba_q replied to mtwylie's response:
Here's an IBD starter diet:

* eat smaller meals at more frequent intervals
* avoid eating many processed foods
* avoid citrus fruit and anything highly acidic
* reduce the amount of rich, greasy and fried foods
* limit consumption of milk and milk products
* restrict your intake of high-fibre foods
* avoid whole corn (inc popcorn)
* cut back on sugary foods
* avoid alcohol (esp beer)

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