Dazed and Confused

[bostonlass]

So I haven't been diagnosed with anything formally yet but have a lot of the symptoms of Crohn's disease which is why I'm here. I had the Upper GI/Small Bowel series last week but still haven't heard the official results, though they did find reflux.

Meanwhile for the past two months or so I have not been able to eat solid food without paying for it dearly in the way of burning, stabbing pain right under my rib cage at certain points, some on the left, some on the right. I'm no doctor but when I look at pictures of the intestine, the pain is exactly along certain parts of my colon.

I have a colonoscopy scheduled for Nov 17 but meanwhile back at the ranch I am so very sick of not being able to eat normal (this is new to me) and so so sick of having the pains, even when I'm just drinking Ensure. It's a duller pain when I have liquids but still it hurts.

I called the GI guy and he's supposed to call me back. What do I say? I mean as far as I'm concerned I need something for the constant nausea and something for the pain but how do I ask for that without seeming like a whiney baby? I guess I just feel like since he hasn't called he doesn't seem to think there's any urgency but hello I'm in pain and can't eat a normal meal so to me, this is urgent.

Any suggestions? I'm just at my wits end. I feel like since I'm able to work and go about daily life no one is really paying attention to the complaints that I have. :depressed:

 

[bostonlass]

I'm really sorry to hear that you're having so much trouble lately. Many of the things you've written, others on the forum can relate to all too well...the pain, no one listening/understanding, being stuck waiting, struggling with doctors. I say this just so you know that you are not alone. We understand, and we will listen. You are right, this is urgent and you do not sound like and are not a whiney baby. You've had enough, as would anyone in your place. My only suggestion as far as talking it up with the doc is to be very blunt and direct. Don't skirt the issues, or try to get him to come to your conclusions without saying it yourself (you then risk that he won't). I'd just come out and say, "Look, this is bad. I can't eat, the pain is extremely intense, it's been on going. Can you give me something to help with these symptoms until Nov. 17th?" That's my suggestion anyway...

The waiting is the worst...and I hope that your doc can help relieve some of this burden for you until then. In the meantime, we do care...keep us posted.

Thanks so much I just spoke to him and although he can't bump up the colonoscopy date he told me to increase my protonix to two pills/day and to taper off the Cymbalta that I'm on for fibromyalgia since that causes nausea in 25% of the patients who take it. I guess he thinks those two things will resolve the pain as well since he didn't mention any pain killers.

He also said that he doesn't think it's Crohn's afterall since I don't have any bloody diareah or any blood at all in my stool. I didn't think the blood was a requirement but if that's the case then I guess I'm back at square one. It really sucks being in limbo and this is the second time in my life I'm in limbo. I just went through about 5 years of trying to diagnose my muscle aches and headaches and they finally said I had fibromyalgia and to think I have to go through yet another mysterious illness is just really bugging me!!!

Thanks for letting me vent.

 

[bjeffrey]

Bloody poop or lack there of, is NOT an appropriate diagnosis marker! I have never had bloody poop with Crohn's and I was diagnosed 27 years ago.

Eating normal for one is not normal for another! Try your best to give your bowel a rest. Drink filtered water and eat the purest bland food for a few days. No sugar, no milk, no flour/yeast, no starch. What you put in is what you get out.

Take a long walk and do your best to reduce the stress on your body. Stomach crunches don;'t help! Relax, eat less for a few days and drink water!

I hope this helps!

jeffrey

 

[bostonlass]

Bloody poop or lack there of, is NOT an appropriate diagnosis marker! I have never had bloody poop with Crohn's and I was diagnosed 27 years ago.

Eating normal for one is not normal for another! Try your best to give your bowel a rest. Drink filtered water and eat the purest bland food for a few days. No sugar, no milk, no flour/yeast, no starch. What you put in is what you get out.

Take a long walk and do your best to reduce the stress on your body. Stomach crunches don;'t help! Relax, eat less for a few days and drink water!

I hope this helps!

jeffrey

Well for me eating normal would be like a 4 oz piece of chicken with some broccoli and rice for dinner. If I were to eat that right now I might as well hop on over to the ER because I won't be able to function from the pain. Instead I drink a bottle of Ensure, some tea and maybe some chicken broth if I'm still hungry. I was feeling particularly sadistic last night and had one tiny piece of sirloin steak from my daughter's plate and I paid for it all night long.

You know I read here that some people don't have the bleeding issue. This doctor is at Mass Gen'l but he's a "clinical research fellow". I don't know if that's good or if it's bad but I'm starting to wonder if he knows what he's doing. Not that I want to have Crohn's mind you, but some of the things he says don't make sense. My pain is right below my ribcage and sometimes on the sides but always in the same exact spots. He told me that it is probably due to the diarreah since that causes pain. I dunno jack squat about this stuff but I do know that I've had the big D many times in my life and have never experienced pain under my ribs from it. Always experienced cramps right down in my abdomen from it and while yes I am having that pain as well this pain under my ribs is a very different one. Kind of like this....you know those prickly things that get on your clothes if you've been walking through some bushes? It feels like I've swallowed one of those, though it doesn't hurt until an hour or two after I've eaten whatever I've eaten.